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View Full Version : I need some confidence....anyone have any to give me? Making the BIG decision!



susancook
12-19-2012, 09:16 PM
So, here I am in life, age 66 with a one year old diagnosis of "adult onset degenerative scoliosis", cruising along basically in denial and then having looked in the mirror for the past 6 months, have noticed a marked leaning to the right [not politically....physically!]. My right shoulder is much lower than my left, I look pretty pitiful. Then I get severe R butt pain and frontal thigh pain. . I thought that this pain was "solved" by an L4 corticosteroid 2 months ago, but the steroids wore off. I cannot stand for more than 5-10 minutes without sitting or lying down. Pain drugs don't help. So, now I will have my 3rd steroid inj in 5 months [rule, as I understand it is one can only have 3 inj/year...yikes!] tomorrow. Then there's the sudden weakness on going from sitting to standing when my legs give way beneath me.

My annual visit to the surgeon shows A BIG CHANGE in sagittal and coronal balance. The surgeon draws a computerline on my leaning stature and then shows me the zero line. They aren't even close. the Cobb angles didn't change much, although I have not received the radiologist's interpretation.

The surgeon said, "The decision to have surgery is yours, but I'd be surprised if you didn't want to have the surgery."

So now, intellectually, I know that I need to take the BIG STEP and have the fusion surgery....like soon. But, my heart isn't sure. Why am I unsure????? I really don't know. Things are not going to get better, certainly there is a big trend for the downhill slope. Then I read Wolport's book that says, "coupled with the surgical risks of anesthesia and the difficult recovery process, surgery for older individuals is [I]seldom a good prospect." Bummer....just when I thought that I had made up my mind, I am now wondering if having surgery such a good idea. Damn the Wolport book! The alternative of not having surgery is not attractive either.

Can anyone loan me some confidence?

Susan

PS: I have set up a second opinion.....

JenniferG
12-19-2012, 10:28 PM
Hi Susan, I'm surprised Wolpert's book says that, but perhaps Wolpert doesn't consider a 66 year old, an "older individual." Perhaps he means people in their 80s - who knows. There are many on this forum in their late 50s and late 60s who've had the surgery very successfully.

I cringed when I read that you can't stand for long. Neither could I and I haven't forgotten how that pain just takes over. I think that would be enough for me to go running for the surgery.

However, you have to be very sure about this surgery. Otherwise you might end up without pain but bitterly disappointed because you've lost flexibility. Or bitterly disappointed because you've still got a bit of a lean when standing...that sort of thing. Because there are cons as well as pros for this surgery, so you have to know in your mind that you absolutely must have it and for all the important reasons. To arrest progression, to reduce/remove pain.

You're doing all the right things, investigating every avenue, asking questions, reading, and getting second opinions. I wish you well in your decision.

jane d
12-19-2012, 10:46 PM
I was your age when I had this surgery July 23 this past summer. I turned 67 on Nov. 2. I'm glad I had the surgery. The recovery was not nearly as bad as I had thought it would be. I rode on a 7 hour car trip yesterday and have been on my feet all day today playing with my 7 yr. old granddaughter. It bothered me to stand before my surgery and a two hour car ride before it was too much. The muscles on the left side of my back still hurt some but I have taken nothing but Tylenol for pain since 6 weeks after surgery. I am now pain free in my spine and had had significant lumbar pain and sciatic pain before surgery. My lumbar curve was 68 degrees and I had significant stenosis at the s1 level . I was fused from t4 to sacrum by Dr. Lenke. Have this surgery and stop worrying about it. I saw several surgeons for 3 years before my surgery and lost 5 1/2 inches in height during that time. I was leaning toward the right and forward and everyone now is amazed at how straight I now look. I gained 2 inches in height and my lumbar curve was reduced to about 23 degrees. Find a good surgeon, have the surgery and don't look back. ( by the way, I had also had 2 radio frequency catheter ablations on my heart for a-v node re-entry about 9 years ago and still had a very uneventful 9 hour spine surgery).
Hope you soon get some peace about all of this.
Jane

susancook
12-19-2012, 11:32 PM
I was your age when I had this surgery July 23 this past summer. I turned 67 on Nov. 2. I'm glad I had the surgery. The recovery was not nearly as bad as I had thought it would be. I rode on a 7 hour car trip yesterday and have been on my feet all day today playing with my 7 yr. old granddaughter. It bothered me to stand before my surgery and a two hour car ride before it was too much. The muscles on the left side of my back still hurt some but I have taken nothing but Tylenol for pain since 6 weeks after surgery. I am now pain free in my spine and had had significant lumbar pain and sciatic pain before surgery. My lumbar curve was 68 degrees and I had significant stenosis at the s1 level . I was fused from t4 to sacrum by Dr. Lenke. Have this surgery and stop worrying about it. I saw several surgeons for 3 years before my surgery and lost 5 1/2 inches in height during that time. I was leaning toward the right and forward and everyone now is amazed at how straight I now look. I gained 2 inches in height and my lumbar curve was reduced to about 23 degrees. Find a good surgeon, have the surgery and don't look back. ( by the way, I had also had 2 radio frequency catheter ablations on my heart for a-v node re-entry about 9 years ago and still had a very uneventful 9 hour spine surgery).
Hope you soon get some peace about all of this.
Jane

Thanks Jane. I don't know why I am hesitating. I KNOW that surgery is the best thing for me. How do I figure out what my concern is? I have concluded that I won't die in surgery, so that's not it. I know that I will have some complication....but I figure that my surgeon will figure out what to do about that. I have decided that when I do decide to have the surgery, I will place my faith/trust in the surgeon and not look back. How did you make that transition from questioning to just do it? Where do I find peace? The surgery is not reversible. When my back hurts alot, like right now, surgery seems like a good choice. But when it doesn't hurt, then I think maybe I could get by without the surgery [denial?]. My surgeon's comment about not understanding why someone in my situation wouldn't want the surgery was interesting [we were staring at the awful xray that I had just taken]. There is something missing in my confidence. Maybe having the second opinion will shed some light on my lack of confidence. It is set up on January 7th. I have read and reread all of the blogs about others questioning of, should they have the surgery. I have even given thoughtful advice! Easier to advise others than yourself. Maybe I'm overthinking this whole thing. I pretty much made up my mind to have the surgery as I laid on the floor at the airport because I couldn't stand in line...then I had a good [relatively painfree] morning or I read the forum about all of the people in chronic pain....and doubt creeps in. I am a very independent person and am known for not taking prisoners. I am rarely wishy washy. I am a risk taker. I am a medical professional, so the surgery itself is fascinating to me. So what's my problem? What is the source of my uncertainty?
Everyone around me is supportive. Maybe I need counseling. Actually, I need more dilaudid as my back is killing me right now!
Thanks for sharing your support. Susan

jrnyc
12-19-2012, 11:43 PM
i do not understand...why was the X ray so awful....????

perhaps the difficulty of the decision is just how irreversible the fusion is, as you
mentioned.
since you still have days when you are not in pain, that might make it easier
to think that you do not need the surgery...


jess

susancook
12-20-2012, 12:33 AM
On the xray I was grossly tilting to the right with the top part of me leaning forward and the lumbar area leaning sort of backwrds. The balance line [for both coronal and saggital balance] for zero imbalance was no where near my balance line. I could see radiographically inside how terrible I really look. I was really bummed.
Susan

susancook
12-20-2012, 12:44 AM
Hi Susan, I'm surprised Wolpert's book says that, but perhaps Wolpert doesn't consider a 66 year old, an "older individual." Perhaps he means people in their 80s - who knows. There are many on this forum in their late 50s and late 60s who've had the surgery very successfully.

I cringed when I read that you can't stand for long. Neither could I and I haven't forgotten how that pain just takes over. I think that would be enough for me to go running for the surgery.

However, you have to be very sure about this surgery. Otherwise you might end up without pain but bitterly disappointed because you've lost flexibility. Or bitterly disappointed because you've still got a bit of a lean when standing...that sort of thing. Because there are cons as well as pros for this surgery, so you have to know in your mind that you absolutely must have it and for all the important reasons. To arrest progression, to reduce/remove pain.

You're doing all the right things, investigating every avenue, asking questions, reading, and getting second opinions. I wish you well in your decision.

You are right, the pain that I have right now is pretty convincing [and that's after 2 Dilaudid]. After my corticosteroids tomorrow, I will probably [if it goes like the last 2 injections] be in very minimal pain. That is good for me [and my drug use], but I know that I cannot have another inj for 8 more months. The pain is becoming the answer for me right now. I am also looking forward to another opinion. I guess I am saying that I hope that I agree with the second opinion. Dr. Hart's comment about why wouldn't I want the surgery when he saw my xray was a wakeup moment. I am weary of worrying about all of this. I ruminate and second guess. This is not my usual style. I am exhausted right now and need to go to bed. The Dilaudid that I took didn't help....bummer.
Thanks for caring.
Susan

JenniferG
12-20-2012, 03:11 AM
I re-read what I wrote and realized how unhelpful it was. But it's very hard to help someone make up their minds because it's a process. You ask about how you arrive at that point where you have the confidence to do it. For me it was very hard. I became depressed and anxiety took over my life and I wasn't thinking properly. I was helped by my GP with a mild anti-anxiety medication and that made a huge difference, for starters, I began to sleep again. From then on I thought about it in a practical manner. I was fortunate in that I was able to get fit. As my fitness grew, a feeling of indestructibility grew and I knew I could do "this thing" as I referred to surgery. By the time my date came round I felt unafraid, just that I wanted to get this thing over with, so I didn't have to think about it any more. It was like, "Enough already!" I was ready.

I guess we all reach that stage (if we're lucky) and it's probably a different process for us all.

golfnut
12-20-2012, 07:36 PM
Susan,
I can just say "ditto" to everything Jane and Jennifer said. I second guessed myself a zillion times during my 13 month wait for surgery. In spite of my fear and my doubts, epecially since I had minimal pain, I was also excited about getting a straight back. I tried to believe that it was in my best interest for later years to stop progression of the curve. I thought I would be giving up a year of my life for the surgery and recovery and it was more like a month. I was off all pain meds except Tylenol by 5 weeks. My recovery was so much less stressful than my pre-op months. I think you will feel better after you get a second opinion. I was convinced that Dr. Lenke was the surgeon for me. Having faith in your surgeon is half of the battle.

tae_tap
12-20-2012, 08:17 PM
Susan,

I believe you were the one that told me the first step was to find a doctor that you trust and to let go of all the "what if's". For those of us in the medical field, transitioning from the care giver to the patient is a tough step. But that is what you need to do, put aside everything and become a patient.

My surgeon made a point of building a friendship/trust relationship before we even discussed a date. You will know the doctor that is right for you, you will feel it with every part that it was a relationship meant to be. I am going to say to you know, forget all the if's and dig deep for that courage. I found it in prayer and support from many I met on this site.

Till then, take care of yourself. A jacuzzi is not a bad idea, it has reduced my post surgical pain tremendously and wish I had one prior to surgery.

Tamena

Irina
12-20-2012, 10:06 PM
I want to second what Tamena said - you will know in your heart who is the right doctor for you. Count days down to your second opinion appointment and see what happens. May be you should give yourself a break in decision making process until then. And it won't be a bad idea just to stop reading scary stories :-) I think you've learned about all the risks already - take a vacation from reading too much and think about holidays.

Best of luck and I will be thinking of you on January 7.

Confusedmom
12-20-2012, 11:50 PM
When you do make your decision, write down all the reasons you decided the way you did. I have to be constantly reminding myself of the reasons I decided to do it. Big progression. Many years ahead of me. Great surgeon. Family who could help me get through. Insurance worked. A few months of pain when standing gave me a glimpse of my future. Osteopenia meant I couldn't put it off forever. A grandmother disabled by back pain. Now, my recovery is taking a long time (9 months and still have pain), but when I think rationally about these things I know I made a sound decision, and I can live with it. My second guessing always comes because I wasn't in much if any pain at the time of my surgery and I wonder if I should have waited longer. I would think at age 66 with significant pain, it would be a reasonably straightforward decision. (But believe me I GET the second-guessing!!!) Have you talked to Linda Racine? I believe her practice treats a lot of older patients, so she might have some feedback on Wolpert's comment.

Best of luck,
Evelyn

susancook
12-21-2012, 01:53 AM
I think that I am losing it....I thought that I saw an email from Linda earlier when I was OHSU saying the adults with idiopathic scoliosis don't have changes in their balance [or imbalance]...now it is not there. Maybe I was reading someone else's blog.....

First of all, thank you to Tamena, Karen, Irina, Jennifer, and Evelyn...did I miss anyone? Just read your supportive comments and recommendations and I started to cry. The good kind of cry that comes from knowing the people just like me understand. I had a rough day. First I got out of bed and went to the toilet quite early. I always sort of lean forward when I am sitting on the commode. Well, I tried to stand up and my legs were weak and felt like jelly, so I crawled [hands and kneees] back to bed and did some stretching [and praying]. Something must have gotten back into the place that it belonged in my back, because when I tried to stand up again, I was OK. I sent a message about the incident to Dr. Hart. When I saw him on Tuesday, he was mildly concerned [my read] and ordered a MRI [not today, just routine]. The earliest that they had an appointment was in 9 days, I explained to the tech the problem, but he said that he couldn't do it any faster if it was "routine". Then I went to OHSU for an R lumbar corticosteroid inj. at 10 AM. I was in such pain that I brought my heating pad to the waiting room. The inj went well [I'm giving up on Versed, I don't seem to get any sedation from it]. Then I tried to get dressed and my right thigh [quads] wouldn't work. Like I couldn't lift my leg except manually [my hands lifting it up]to walk. Dr. Chen helped me get dressed. They gave me a wheelchair to the car after Dr. Chen and the "fellow" said that they thought many it was from the lidocaine, but don't worry. Then Dr. Hart's office called and said that he had ordered an emergency MRI at 7 PM based on my getting out of bed experience and the other times that I told him about at the appointment. So, since I live an hour away, we drove to my brother's house which is close to OHSU for takeout lunch. I couldn't get out of the car! I tried to walk forward and while I could put some weight on the leg, I couldn't lift it with the quad muscles, just by lifting it with my hands/arms. Then I figured out that I could walk backwards, sort of shuffling and could sort of drag my R leg along. I got into my brother's house and up the stairs all backward, got on his couch with my heating pad [took the Lyrica that Dr. Chen had just given me] and I rested for a couple of hours. Amazingly, my R leg improved and moved OK although it felt weak. I was really scared! Now it is late and the lidocaine/steroid inj seems to already provide some relief! I am thrilled! My back is buzzing and hurts some, but no where near last night. Such a day! I am already planning to wake up with minimal R back and anterior thigh pain. Keep me in you thoughts!

I will copy all of your sage advice, print it out and read it daily with some advice that Ed gave me. I have so much anticipation about my second opinion...mostly good, but so much rides on it. Thanks Irina for sharing so much with me at lunch on Saturday near San Francisco. Wait until all of you see her postop pictures in her slinky new dress! She is already a very beautiful woman and looks like a model....but after her surgery....well, she will look even more phenomenal!

To bed soon and thoughts of a better tomorrow. Did anyone see the movie "Flowers for Algernon"? I feel like Algernon, who has been given a reprieve from his disability [in my case with all of my steroids and ablations] only to find that with time he deteriorates back to a disabled mouse.

Thanks for sharing some "confidence". Susan

PS: I have ordered a disc of my xray [Ed, thanks for your suggestion!] I will post it [if I can figure that out] and everyone can give their opinion about my balance. I might even take a picture of me in an old two piece suit....maybe.

susancook
12-21-2012, 02:29 AM
12-19-2012, 11:19 PM#12
LindaRacine
Moderator

Join Date: Sep 2003Location: Northern CaliforniaPosts: 5,857

Most people with idiopathic scoliosis do not have coronal imbalance. It's relatively unusual, especially in kids, for someone with idiopathic scoliosis to not be balanced.


Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
I'm sarcastic... what's your super power? --Unknown
---------------------------------------------------------------------------------------------------------------------------------------------------
Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
http://www.scoliosislinks.com/AboutMe.htm


I just got back into my thread and found Linda's comment as #12, then I copied it and went back in and #12 is Confusedmom....my computer is doing strange things!

I started the thread about balance and I'm working to undertstand it by reading medical articles [my field os OB GYN, so it is tough trying to understand orthopedics that I learned in 1968!]

Susan...OK, I will take pictures of me in my swim suit for your comments...just don't put it on my Facebook page!

susancook
12-21-2012, 03:09 AM
Report of my xray from OHSU, just found it in my Inbox:

IMPRESSION:

Unchanged S-shaped scoliosis of the thoracic and lumbar spine.
Increased positive coronal imbalance when compared to the previous
exam. [Now 11.2 cm, last year: 4.1cm]

Exaggerated lower thoracic kyphosis, unchanged. Severe multilevel
lower thoracic and lumbar spine degenerative disk disease.

Attending Radiologists: Craig Brooksby,
Author: Craig Brooksby,

So now I will do a medline search on coronal imbalance!
Good thing That I am retired and have time to do my homework
Susan

Wish2bstraight
12-21-2012, 02:22 PM
Susan,

We have spoken before. Maybe my story will help you. My lumbar curve is 80 degrees. I have lost 1 inch in height this year alone. My predicament is that I am not in alot of pain, but when it comes, watch out. Over the past few years I have had different issues with pain in my left leg and most of the pain has gone away with physical therapy, but I noticed that my curve was getting worse.

So off to a doctor in Boston I went. My doctor told me it was my decision whether to have the surgery, which he said he could correct about 50 percent. he also informed me that if I do not have the surgery, there is a good chance that by the time I am in my 70's I will have so much leg pain that I may be bedridden. No that's not for me. I have two very small grandchildren I want to play with and watch grow up.

Even though in my mind I knew that surgery was the right thing to do, I was still ambivalent. Then I talked to someone who had the surgery when she was around 62 (I'll be close to 63). She is now around 70 and wall papers, gardens and plays with her grandchildren. Now I go to my lawyer to be sure that all my legal papers are in order (just being overly cautious). She said to me, get the surgery before it's too late. Her aunt waited until she was in so much pain that she couldn't stand it, but it was too late and the doctors could not do anything for her.

That was the final straw for me to be sure that even though I won't be able to bend and twist I need to have the surgery. What still concerns me is, yes, how will I do everything. My ride to work is well over an hour and I sit at a desk all day. How will I turn to get a piece of paper or a pencil. How do I file papers in the drawer that it hurts to bend over now. Well, the answer is, you'll figure that out when the time comes.

I'm still very nervous about the surgery and start to shake while writing this, just thinking about the surgery date that is coming up shortly, but this is the hand that was dealt me and I must move on. Petrified I am to say the least, but I just keep in mind that I don't want to be in bed for the rest of my life.

I have your e-mail address. If you would like, I will send you the journal the 70 year old woman sent to me. It helped me make up my mind.

Libby

susancook
12-21-2012, 03:37 PM
Susan,

We have spoken before. Maybe my story will help you. My lumbar curve is 80 degrees. I have lost 1 inch in height this year alone. My predicament is that I am not in alot of pain, but when it comes, watch out. Over the past few years I have had different issues with pain in my left leg and most of the pain has gone away with physical therapy, but I noticed that my curve was getting worse.

So off to a doctor in Boston I went. My doctor told me it was my decision whether to have the surgery, which he said he could correct about 50 percent. he also informed me that if I do not have the surgery, there is a good chance that by the time I am in my 70's I will have so much leg pain that I may be bedridden. No that's not for me. I have two very small grandchildren I want to play with and watch grow up.

Even though in my mind I knew that surgery was the right thing to do, I was still ambivalent. Then I talked to someone who had the surgery when she was around 62 (I'll be close to 63). She is now around 70 and wall papers, gardens and plays with her grandchildren. Now I go to my lawyer to be sure that all my legal papers are in order (just being overly cautious). She said to me, get the surgery before it's too late. Her aunt waited until she was in so much pain that she couldn't stand it, but it was too late and the doctors could not do anything for her.

That was the final straw for me to be sure that even though I won't be able to bend and twist I need to have the surgery. What still concerns me is, yes, how will I do everything. My ride to work is well over an hour and I sit at a desk all day. How will I turn to get a piece of paper or a pencil. How do I file papers in the drawer that it hurts to bend over now. Well, the answer is, you'll figure that out when the time comes.

I'm still very nervous about the surgery and start to shake while writing this, just thinking about the surgery date that is coming up shortly, but this is the hand that was dealt me and I must move on. Petrified I am to say the least, but I just keep in mind that I don't want to be in bed for the rest of my life.

I have your e-mail address. If you would like, I will send you the journal the 70 year old woman sent to me. It helped me make up my mind.

Libby

I would love the journal, thanks! I am very close to deciding to have surgery. I have a second opinion lined up for January 7th in San Francisco where my son and his wife and kids live. Having surgery and recovery there is a real option. Bothof them are graduates of UCSF as Family nurse Practitioners. I had a corticosteroid inj yesterday and now can function instead of sitting or lying on the floor after 4-5 minutes. Thanks for your story. Anyone that is not ambivalent is NUTS! It would be ideal if we could have a crystal ball and you have a twin and one has surgery and the other doesn't and you can see what happens. Well. we don't.....bummer. My inj lasts a few months, so I can go to Mexico with my husband in Jan. The prospect of traveling was depressing to me before the inj, and now I can stand and walk with very minimal pain.

I will be 66 at the time of probable surgery. We will see what Dr. Hu says. I hope to have surgery [wow, I said it!] in late February-early March.

You will be able to function at work with some changes. And that periodic pain will be in the past. I am semi-retired and do international health. I just returned from FIJI and Papua New Guinea for 3 months. With all of my procedures, I did well until the last week, which fortunately was in a beautiful hotel and I could just relax and jump in the pool. I know that I cannot live on these bandaid procedures. I am lucky to have a "pain time out".

Again, thanks for writing. I am so much more self assured after reading everyone's responses. I have decided to just "Go for it" when I have said the final "yes" to surgery and just let go and have TRUST in my surgeon, whoever that is. I am going to take a picture of that surgeon and me and focus on that picture and say, "trust" anytime that I have doubts. I am very visual and I think that it will help. I also have some supportive comments gathered from others that I will send via return email if you would like. One is from Ed and while I cried when I read it, it really spoke to me.

Take care and keep me posted on your progress.
HUGS, Susan

gardenia
12-21-2012, 05:20 PM
I am 62 soon to be 63. I used to live in the peninsula before moving to Baja California where medical availability is nill. Fortunately, my daughter got accepted at Washington University a private institution versus UCSF for her PHD in research. Both schools ranked 3rd in the nation for research.

Long story short, I did a search for the top doctors on spinal scoliosis and found that Dr Bridwell is among the tops for years. I came, consulted, had insurance denied then re-considered, had my surgery on Nov 27, 2012.

Out of the hospital for over a week+. Pain in hips and butt mainly but today the pain in the back where the muscles and nerves were cut have awoken.... I am speculating months of pains. However, either I did this or live in a wheelchair with constant pain.

My curves were close to 90+ and it was time.

I came to St Louis because both daughters are doing their PhDs in his state. One graduated from UC Berkeley and the other from UCLA. If they did not beg me to come here and be closer to them, I would without a doubt gone to UCSF.

A medical teaching school is the best for this kind of surgery. They are constantly learning and improving their methods of success. For them it is the advancement of science versus the increase in the bank accounts. My dr Bridwell actually spoke to the xrays more than to me. He got very familiar with all aspects before starting the job.

He knew that I had bone spurs in my bottom spine and had a neurologist in the OR if and when there was a problem which I did have a small dural tear.

I can tell you that I do not regret this. I have been in pain, I have cried a lot so far, I have been reduced to asking for every little thing I need (and it has not been a month yet) but deep inside I know that I will be much better in 3,6, 12 months.

I was curving one degree each year, top and bottom. But only the bottom curve got corrected, Dr B believes that the top curve will remain constant and be supported well by the fix in the lower curve. I don't feel stiff, I don't golf, play tennis, dance the tango etc so I don't think I will miss much. I haven't even bowled for years.

I just want to be able to see and carry my grandchildren if my girls ever decide to dedicate time to romance (after their degrees). And, they both want to return to California.

My advice is to do it and make sure you trust your doctor. I have heard great things about the team at UCSF but stay with the ones with the most experience in case something happens and they have seen it many times before. i.e. instead of some doctor with less experience and says: oops!

Good luck. I wish I could be more positive but even sitting here writing this long answer is giving me inmense pain. Back to bed.

You can also contact me separately via email or phone.

tae_tap
12-21-2012, 06:35 PM
Gardenia,
You amaze me being able to communicate so soon after surgery. I was a mess for the first couple weeks and cried over everything from my kids using all my shampoo without asking to my husband not being able to find my frozen ice cups. But I think it was the mixture of the narcotics and my body being so exhausted because I hard such a hard time sleeping. Give it time it will pass and you will look back and laugh about the tears.

Susan,
Be careful with traveling, especially to Mexico. This is prime flu season and sometimes it takes a while to get over sickness. Not to mention traveling can be exhausting on the body. You want to be in the best physical condition that you can be prior to surgery.

Tamena

loves to skate
12-21-2012, 07:16 PM
Susan,
Your situation sounds so much like mine except I was not referred to a scoliosis specialist. Instead I was sent to a Neurosurgeon who told me he wouldn't touch me until I was in a wheelchair. I went home crying because I didn't want to ever be in a wheelchair. I didn't know what to do but I was desperate because I couldn't get any pain meds from the Doctors where I lived. I ended up going to a Chiropractor and spend over $5000.00 for traction therapy. It helped me for a time, but in about 6 months, I was back to square one. By the time I found my surgeon with the grace of God through my grown up godchild (she worked for Dupue) I was practically begging the Doctor to operate on me. Because of all the time lost, my spine collapsed even more and I was fortunate that Dr. Rand would even consider operating on me. Even though I still have pain, it is nothing like before surgery and I can do most anything I want to do now at the age of almost 73. Where would I be if I didn't have the surgery? The forbidden wheelchair of course. Yes, I was terrified of the surgery, but it was a very easy decision for me to make because I was terrified of the future if I didn't have the surgery.
Anytime you want to talk to me on the telephone, just PM me and I will give you my phone number.
Sincerely, Sally

titaniumed
12-21-2012, 09:24 PM
Susan

Here are a few quotes and notes on confidence...

ďCourage is resistance to fear, mastery of fear, not absence of fearĒ. Ė Mark Twain

ďOptimism is the faith that leads to achievement, Nothing can be done without hope and confidenceĒ- Helen Keller

ďWe gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face....we must do that which we think we cannotĒ-Eleanor Roosevelt
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Flow your confidence from the inside out. Donít hang it from the praise or accolades or reinforcement of others.

Find your way forward. Confidence is not the absence of fear, but instead feeling the fear, and finding your way forward.

See it in your mindís-eye. Picture it. Visualize the confident you, and drink often from your fountain of images.

Flip the switch. Itís like flipping a switch. Itís an emotional and mental state that you can drive from. You just might have to turn it on. For some, this means fake it till you make it. (I disagree with faking.....lets face it, be honest about it. Know your confidence, be sure)

Donít let critics limit you. Donít let other people push your buttons, and know how to push your own.

Sometimes you need the critic to tell you that you canít, to figure out that you can Ö but donít become reliant on reverse psychology to make up your mind.

Know that confidence comes before competence. Donít fall prey to the "if Ö then" trap (If Iím competent, then Iíll be confident.") Instead, anchor your confidence to the belief that you will get better with practice. Expect great things from yourself and make them happen.

Let your confidence bloom as you do. You might be sapling where somebody else is a sage, but donít let their shadow overshadow you. Simply recognize the stage you are at, and be confident in your ability to grow. Your capacity is a powerful thing.

I hope this helps some....
Ed

thatrobyno
12-22-2012, 10:40 AM
Hi Susan, I just wanted to drop a line since I'm in the same boat. The personal advice given to me personally by a few folks who had the surgery was to wait as long as I possibly can -- especially if I can string together some good days without the fusion. The problem is, my "good days" are few and far between.

I think it's the irreversibility of the decision that frightens me. The looming feeling of "what-if-my-results-are-worse-than-my-presurgical-state"?

I've mentioned before that I'm a yoga teacher -- one of my students had a partial fusion when she was in her late teens -- and she still cries and cries about her loss of function. And she only has about 3/4 of the fusion I would. She's in excellent physical condition, but she's in pain much of the time. And she's only in her late-twenties. Her experience scares me.

Folks here gave me the advice to speak to other people who got the surgery from my doctor. I think it's great advice. I'm going to ask for a list of names when I see him in a couple weeks. I want to see people in person, watch them move, ask questions face-to-face. Maybe that will help your decision making process, too?

On the flip side of the coin, maybe you can speak to some people with large curves who opted NOT to get surgery. Really weigh both sides.

I know my input is not so helpful, since I wavering just like you. But wanted to let you know I support you, you're not alone. It's this state of limbo that we're hanging in that feels very lonely.

Hope you have a great day! -- Robyn

jrnyc
12-22-2012, 12:30 PM
hi robyn
sending you a PM

jess

susancook
12-22-2012, 05:49 PM
Hi Susan, I just wanted to drop a line since I'm in the same boat. The personal advice given to me personally by a few folks who had the surgery was to wait as long as I possibly can -- especially if I can string together some good days without the fusion. The problem is, my "good days" are few and far between.

I think it's the irreversibility of the decision that frightens me. The looming feeling of "what-if-my-results-are-worse-than-my-presurgical-state"?

I've mentioned before that I'm a yoga teacher -- one of my students had a partial fusion when she was in her late teens -- and she still cries and cries about her loss of function. And she only has about 3/4 of the fusion I would. She's in excellent physical condition, but she's in pain much of the time. And she's only in her late-twenties. Her experience scares me.

Folks here gave me the advice to speak to other people who got the surgery from my doctor. I think it's great advice. I'm going to ask for a list of names when I see him in a couple weeks. I want to see people in person, watch them move, ask questions face-to-face. Maybe that will help your decision making process, too?

On the flip side of the coin, maybe you can speak to some people with large curves who opted NOT to get surgery. Really weigh both sides.

I know my input is not so helpful, since I wavering just like you. But wanted to let you know I support you, you're not alone. It's this state of limbo that we're hanging in that feels very lonely.

Hope you have a great day! -- Robyn

We are struggling with the same issues. Whenever I have had a problem in the past, I could usually fix it by spending money, going back for more education, trying harder, intervening with some different conversations or interpersonal skills, or having a small surgery [ankle fractured] or just waiting it out....none of those are working. Instead of looking at ALL of the people that are so happy with their fusions, I think about the woman who is in a nursing facility who was in a coma, the teenager that died, the one with permanent foot drop, and the ones that post on the "I'm sorry that I had surgery" [I reread that last night....got to stop doing that!]. The person that started the thread about being unhappy for 20+ years and taking LOTS of drugs and is in such pain and it ruined his life is my biggest nightmare, that just plain scares me. You comment about the irreversability of the surgery also worries me alot. You can't go back to the surgeon later and say, "Just take this all out, it's not working for me."

I had lunch with Irina who has a BIG surgery scheduled on March 5/7. She seems to have gone past constantly thinking about the negatives because she has such faith in her surgeon and she can't continue to have any quality of life in the shape that she's in and will probably progress [Irina, hope that i spoke accurately for you!]. Irina ia a quite stunning, beautiful young woman [40's, but looks like she's in her early 30s] who has thought this whole thing out, and after her surgery will not have her back hump and will be even more gorgeous than she is curently. She told me that she will not be wearing any more pants after surgery, just beautiful dresses. She was very inspiring for me. She also wrote on a thread how she loves to travel with her husband, but she is so limited by pain and needing to lie or sit down. She really spoke to my needs and concerns. She did meet up with a woman who had a full fusion and she watched her move. The woman dropped her napkin on the floor and got up, bent at the knees and simply picked it up. She said that the woman looked so normal in what she did. Irina demonstrated the moves [in the restaurant] that the woman used and I was impressed! I think that that will help me and I that her so much so giving me such a boost. When she talked, I held back tears so many times as she touched on my fears and worries and hopes that are in my heart.

Right now I am in a honeymoon period as far as my back goes. A week ago, I was on the couch with my heating pad taking pain killing analgesics because my R L4 nerve incapacitated me so. I couldn't stand for more than 4-5 minutes and I sat or laid on the floor in the supermarket, waiting for an airplane to load, waiting in line at the OHSU Pharmacy for more drugs [the lady behind me offered to hold my place in line while I have a seat 20 feet away], in the Y waiting for my daughter in law [someone tapped me on the shoulder while I was lying, huddled up on the floor and asked if she should call 911] and other times when I simply sat down on the floor against a wall wherever I was if there were no seats [few seats are comfortable for me]. I am 66 and have no shame and just sit or lay down when I am in severe pain and try to find the ice bag that I carry with me. I pop some more pain pills [I carry those too]. ....But now I feel pretty good for the moment as I had another steroid inj a couple of days ago and all of the rest of my inj have not run out therapeutically yet. So, I am starting to forget laying on the floor at the Y and think, "Maybe I could do it without surgery", and then I remember night when I was laying on the sofa with cold packs crying in pain and if the surgeon had knocked on the door, I would have say, "Just fix my back now in the dining room table, I can't take it anymore".

So many wonderful people on this forum have inspired me and encouraged me....but the haunting doubts of the "what ifs" still whispers in my ear. I have been volunteering, doing medical work in Fiji for the past 3 months. Fortunately, all of those bandaid procedures kept me going [I even had a denervation the morning that I left for Fiji!]. The L4 pain didn't really kick in until my last week when I was in a resort resting. The people that I served asked me, "When are you coming back?" I would be emotionally torn by that question as part of me thought that I could come back in 2 years after recovery from my fusion [T3-Sacrum] and the other part of me thought, "Maybe never, as I will be in chronic pain". I just beat myself up so much and the tears are right there.

Thanks for your comments. You have allowed me to write down my fear and experiences and look at them. Sorry that this is so lengthy.

Where do you live? Coffee, sometime? Probably impossible! I would love to have dinner in my living room with you, Ed, Karen, Sally, Gayle, Linda, Gardenia [I could serve enchilandas!], Jennifer, Jane, Tamena, Evelyn, Libby, Robyn, and Irina and so many others that I cannot think about right now [since I cannot see the keyboard since I am crying from remembering and rethinking everything that I have just posted] and we could look at each other face to face and I could hear their stories in person and watch them move and accomodate their hardware. I'm such a dreamer!

I am struggling right now for a variety of reasons. I look forward to a second opinion on the 7th of January. HUGS to you, Susan

JenniferG
12-22-2012, 11:52 PM
7th of January is not far off. I'm thinking that it will help make the decision for you. I hope he's the kind of person you can trust and put your faith in, then just let it all happen - and give up the struggle.

susancook
12-22-2012, 11:54 PM
12-19-2012, 11:19 PM#12
LindaRacine
Moderator

Join Date: Sep 2003Location: Northern CaliforniaPosts: 5,857

Most people with idiopathic scoliosis do not have coronal imbalance. It's relatively unusual, especially in kids, for someone with idiopathic scoliosis to not be balanced.


Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
I'm sarcastic... what's your super power? --Unknown


---------------------------------------------------------------------------------------------------------------------------------------------------
Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
http://www.scoliosislinks.com/AboutMe.htm


I just got back into my thread and found Linda's comment as #12, then I copied it and went back in and #12 is Confusedmom....my computer is doing strange things!

I started the thread about balance and I'm working to undertstand it by reading medical articles [my field os OB GYN, so it is tough trying to understand orthopedics that I learned in 1968!]

Susan...OK, I will take pictures of me in my swim suit for your comments...just don't put it on my Facebook page!

I think that my diagnosis is "Adult Onset Degenerative Scoliosis". I read somewhere that those of us that are older at the onset of scoliosis have either idiopathic or degenerative. I"m melting, I'm melting...that is whatever KIND or diagnosis that I have it's one where I lean markedly to the right [physically, not politically]....it looks pitiful....
Susan

susancook
12-23-2012, 12:21 AM
7th of January is not far off. I'm thinking that it will help make the decision for you. I hope he's the kind of person you can trust and put your faith in, then just let it all happen - and give up the struggle.

I have so much riding on that visit. According to what I have heard, I have 30 minutes [or less] with the doctor and I need to be examined, ask a few questions [yes, I have limited my questions to the most important], and to make up my mind about the person with whom I am going to give over my life. I believe that I need to decide soon as I am currently in a honeymoon phase of back treatments in that the corticosteroids are still working and the warranty on my denervations has not worn off [I think that they said that it usually is good for 1 to 1.5 years]. I have thought about this for a year now and almost said yes last year...but something wasn't right.

I have made a contract with myself that when I do "make the decision" to have the surgery, that I will let go and relax and put my faith 100% on the surgeon. At that point, I doubt that I will ask more questions and not ask the kind of hardware or give my opinion on levels to be fused or approach. I have decided to take a picture of me and the surgeon and to focus on that picture daily and say to myself, "I Trust You to take care of me". I am almost 66 and a half, so I am not getting any younger. I do not have osteoporosis, don't smoke, no diabetes, all other body systems are OK. In general, I am a very strong assertive person....funny, flexible, and a risk taker. I am a dreamer and very imaginative, generally an optimist.

You are so right that my appointment will help me. If I decide to have surgery with her [yes, a woman surgeon], I hope that I don't lose my composure and start crying in the appointment. I have so much emotion built up, so much riding on my hope for this visit. Maybe I should have a glass of wine before the visit to calm down....no, that isn't a good idea, forget that. Just lots of deep breaths and ohmmmmmm. My son [34, family nurse practitioner] is coming with me. Initially, he was very against the surgery, but recently when he saw my change in my posture and saw me laying on the ground in pain, I think he's less vehement against the surgery. He is a great kid, and I trust his opinion.

Still unsure how one let's go and transitions to have faith in the surgeon. Irina has done it, I will send her an email for some help. I think that I am honestly close to committing. Writing here and getting out my thoughts on paper [and crying over the computer as I did it] has been therapy for me. And I do see a therpist for depression, so I will talk to her. Some of my depression stems from my being angry about my scoliosis....which doesn't fit into my retirement life plan. I am also angry about how the recent pain management MD didn't do anything for 6 months. My brother says to me, "Susan when are you going to let go of that one?" I'm working on it.

WOW! Thanks to everyone that reads this and supports me. I REALLY need support and I am finding it here.
Gratefully, Susan

susancook
12-24-2012, 01:42 AM
How did any of you transform from the "I'm afraid of surgery, I will have a bad outcome" to "Let go and TRUST". I feel that I am slowly collapsing and that at my age of 66, I will just start to progressively go down hill. My curve is stable from last year, but my coronal balance has greatly increased. I lean markedly to the right....when I look in the mirror, it's quite pitiful. I ruminate so much and worry about surgery and making a decision. I am my worst enemy. I need to come to peace with the surgery option and I wonder how others were able to let go and just go for it.

Thanks in advance for your help with my problem. Susan

JenniferG
12-24-2012, 02:58 AM
I'd never had surgery in my life. I dreaded the thought that one day I might need surgery for some reason. Then suddenly I needed this huge surgery. Nobody could have been more fearful than I was. I went to pieces after being told I needed the surgery. Couldn't sleep or think properly. I got help from my GP. I'd never taken anti-anxiety meds before but they worked so well, I am now of the opinion, if you need medication, take it and make your life better. Suddenly I was able to sleep again and I could think constructively about the surgery. Gradually I gathered information about it, and worked on getting fit. Both these helped, but getting fit made me fearless. I know not everyone is fortunate enough to be able to get fit as I was. So, with medication, getting answers to my questions and getting fit, I came to terms with the need for surgery and the acceptance of what must happen.

It's probably different for each person, I doubt it's ever easy. But I think pain and desperation also drive us to the conclusion that we must have this surgery. I wasn't at that stage yet, so perhaps it was harder for me. But I got there in the end and so glad I did!

susancook
12-24-2012, 05:07 AM
I'd never had surgery in my life. I dreaded the thought that one day I might need surgery for some reason. Then suddenly I needed this huge surgery. Nobody could have been more fearful than I was. I went to pieces after being told I needed the surgery. Couldn't sleep or think properly. I got help from my GP. I'd never taken anti-anxiety meds before but they worked so well, I am now of the opinion, if you need medication, take it and make your life better. Suddenly I was able to sleep again and I could think constructively about the surgery. Gradually I gathered information about it, and worked on getting fit. Both these helped, but getting fit made me fearless. I know not everyone is fortunate enough to be able to get fit as I was. So, with medication, getting answers to my questions and getting fit, I came to terms with the need for surgery and the acceptance of what must happen.

It's probably different for each person, I doubt it's ever easy. But I think pain and desperation also drive us to the conclusion that we must have this surgery. I wasn't at that stage yet, so perhaps it was harder for me. But I got there in the end and so glad I did!

Thanks Jennifer for your thoughts. You are right, I need a get healthy plan! I will start an exercise program to strengthen my legs and try to find a water areobics class. Maybe that will help me feel more in control. I don't think that I need medicine, but I will go to a counselor and try to sort out my feelings and fears. Right now, I sleep OK, but maybe if I get closer to surgery, I might have some problems, so I will keep it in mind. I really think that I will feel more solid about my decision after my second opinion. I need to let go and trust that someone with more knowledge about my problem is in command. then I can stop second guessing. Thanks again for your support, Susan

leahdragonfly
12-24-2012, 10:30 AM
Hi Susan,

I think trust is definitely the key. You have to decide which surgeon you trust and can work with to get through this. Once you decide to trust, you need to let the surgeon do the worrying for you, since that is what they have gone to years and years of schooling for. I know it is hard for us medical types to shut it down and let someone else be in control of decisions for our body, but I think it is the only way to make peace with your need for surgery.

Please do yourself a favor and stop obsessing about the bad outcomes. Stop searching for posts about bad outcomes, and please stop reading the posts about people who regret being fused. You are really torturing yourself. It will not change the fact that you need surgery. Just say no!

I offer this advice in the most gentle, supportive way imaginable. I see you struggling with this decision, and I want to help you get to the point of peace with your decision. It occurred to me that you are still so conflicted because you have not met the right surgeon for you yet. Maybe you will click better with Dr Hu. Not every surgeon is going to be the right fit for every patient. I truly know how busy it is at OHSU, and if you don't trust, it could be easy to leave there thinking it is not the right fit for you. Only you can decide.

Please also be prepared that you could end up disappointed in your second opinion if it is not everything you are hoping for. I got two other opinions (one in Eugene, one in Portland) and found both of them to be disappointing, and the Portland one especially, as I have mentioned, to be confusing. I wrote a thread about it at the time if you are interested.

Best wishes, and please try to stop tormenting yourself by reading so many medical articles. I know, because I did it too, and it really did me no good at all. This time you are going to have to be the patient, something we nurses hate to do!

Take good care, know we are here for you.

susancook
12-24-2012, 02:53 PM
Hi Susan,

I think trust is definitely the key. You have to decide which surgeon you trust and can work with to get through this. Once you decide to trust, you need to let the surgeon do the worrying for you, since that is what they have gone to years and years of schooling for. I know it is hard for us medical types to shut it down and let someone else be in control of decisions for our body, but I think it is the only way to make peace with your need for surgery.

Please do yourself a favor and stop obsessing about the bad outcomes. Stop searching for posts about bad outcomes, and please stop reading the posts about people who regret being fused. You are really torturing yourself. It will not change the fact that you need surgery. Just say no!

I offer this advice in the most gentle, supportive way imaginable. I see you struggling with this decision, and I want to help you get to the point of peace with your decision. It occurred to me that you are still so conflicted because you have not met the right surgeon for you yet. Maybe you will click better with Dr Hu. Not every surgeon is going to be the right fit for every patient. I truly know how busy it is at OHSU, and if you don't trust, it could be easy to leave there thinking it is not the right fit for you. Only you can decide.

Please also be prepared that you could end up disappointed in your second opinion if it is not everything you are hoping for. I got two other opinions (one in Eugene, one in Portland) and found both of them to be disappointing, and the Portland one especially, as I have mentioned, to be confusing. I wrote a thread about it at the time if you are interested.

Best wishes, and please try to stop tormenting yourself by reading so many medical articles. I know, because I did it too, and it really did me no good at all. This time you are going to have to be the patient, something we nurses hate to do!

Take good care, know we are here for you.

Thanks Gayle, I will stop reading bad outcome threads and doing research. Research is what I have done for a living. I just keep reading until I find the answer or have completely understood the topic. I have so much emotionally invested in this second opinion. I am confused and frustrated. I wish in some ways that someone could just make the decision for me....but that is not going to happen, obviously it needs to be my decision. I guess that Dr. H sort of made the decision for me when he said something like, "I don't know why anyone in your situation wouldn't want to have surgery". Sometimes I just want to put my head in a hole and pretend that all of this doesn't really exist....sort of like running away. I can't believe that I am paralized in making this decision as I am so assertive and confident in so many other areas. I keep thinking that maybe it really isn't too bad and I can just hang on like I am and make it work. Especially since my curve didn't get worse....but like someone said before, it's not so much about the curve as it is about the degeneration of the vertebrae that support the curve. I actually feel better now as the steroids are still working. In some ways, it is a bad time to make a decision as I can get out now and do things that I could not do last week before the injection. But that is my last L4 inj for another 8 months and I remember what I felt like and the disability that I had before the injection.

Thanks to eveyone who is supportive and trying to help me. Susan

thatrobyno
12-24-2012, 03:38 PM
Susan, my "big" appointment with my surgeon is on January 10th, just 3 days after yours! We will have to compare notes. I'm sending you good vibes. And, you probably already do this, but one of the best pieces of advice I got before seeing my surgeon is to write down every single question you have. When they're in a rush, and you're anxious and nervous, it's easy to forget questions. My surgeon always looks a little nervous when I take out the yellow legal pad :) but I always get the answers I'm seeking.

Happy holidays to you. I hope you can have a peaceful New Years and be gentle to yourself. That's my intention this holiday season...to allow my head to stop spinning and to breathe and enjoy every moment I can.

xoRobyn

susancook
12-24-2012, 03:53 PM
Thanks Robyn, I hope that you have a great Christmas and the best for the new year! I am going to try to take a few days off from worrying...ha! ha! ha! or should I say, ho! ho! ho!
Take care, we will compare notes. I will send you a Private Message. Susan

Pooka1
12-25-2012, 11:12 AM
55 yo w painful collapsing degenerative scoliosis and stenosis fixed this am

http://drlloydhey.blogspot.com/2011/11/55-yo-w-painful-collapsing-degenerative.html

23 degree Preop curve w Spondylolisthesis and stenosis.
L1-iliac instrumentation and fusion w multilevel laminectomies.

Surgery time: 3 hrs 10 min.
Ebl: 800 cc.
Complications: none.

susancook
12-25-2012, 05:43 PM
55 yo w painful collapsing degenerative scoliosis and stenosis fixed this am

http://drlloydhey.blogspot.com/2011/11/55-yo-w-painful-collapsing-degenerative.html

23 degree Preop curve w Spondylolisthesis and stenosis.
L1-iliac instrumentation and fusion w multilevel laminectomies.

Surgery time: 3 hrs 10 min.
Ebl: 800 cc.
Complications: none.

I wish that he had written more information. My main problem seems to be degenerating discs and arthritis....like all of them and "severe"....whateveer that means. And the this new change in coronal balance which I don't understand. I have stenosis of L4 and 5....and lots of other vertebrae, I think.
Thanks for the info.

Could any older women [like 60s and above] who have late onset degenereration scoliosis who never had earlier back surgery send me a note to tell me hiw they are doing? How was the surgery and recovery? Maybe I will start a new thread if I do not get responses. I have difficulty trying to understand how the younger people's surgeries and recovery fit with mine. With so many degnerating discs and arthritis, I imagine that the surgery and recovery are different....think that I wil start a thread...so please respond there if you area member of our unique group!

Susan

naptown78
12-25-2012, 07:03 PM
I wish that he had written more information. My main problem seems to be degenerating discs....like all of them and "severe"....whateveer that menas. I have stenosis of L4 and 5.
Thanks for the info.

Could any older women [like 60s and above] who have late onset degenereration scoliosis who never had earlier back surgery send me a note to tell me hiw they are doing? How was the surgery and recovery? Maybe I will start a new thread if I do not get responses. I have difficulty trying to understand how the younger people's surgeries and recovery fit with mine. With so many degnerating discs, I imagine that the surgery and recovery are different....think that I wil start a thread...sp please respond there if you area member of our unique group!

Susan

Susan,
I think you misunderstand when you think that Adult Onset Degenerative Scoliosis patients are part of a unique group...those of us that have have scoliosis for most of our lives also have degenerating discs and all kinds of funky things going on in the our vertebrae and vertebral spaces that cause pain. I did not have surgery until I was 48, and had DDD with stenosis causing sciatica much like yours. I have also had problems with a 14 cm forward sagittal imbalance.

My point is that your recovery should you choose to have surgery, would be very similar to any other person with IS. Don't discount the stories of someone here just because they might not be exactly your situation.

You will know when you are ready. The choice will be clear when you find your surgeon. You haven't found him ( or her ) yet. May you have peace in your search.

Pooka1
12-25-2012, 07:40 PM
My point is that your recovery should you choose to have surgery, would be very similar to any other person with IS. Don't discount the stories of someone here just because they might not be exactly your situation.

Two points here...

1. Based on her MRI report, they claim all that damage is SECONDARY to a 36* curve. I am not clear how they determine that rather than the smallish curve collapsing due to severe DDD but there you are. So I was wrong in suggesting Susan was somewhat different because I assumed she did NOT have idiopathic scoliosis but rather adult degenerative. And by the way, I think surgeons should be warning these folks with smallish curves to continue to monitor for damage and not just for progression. Bracing claims to halt progression but if there is still a world of damage possible with a smallish curve then brace wear can and should be further questioned.

2. The level of satisfaction with surgery tends to scale with pre-op pain levels per Linda. Since Susan has very high pain, she is more likely to be satisfied with any lesser post op pain. So her recovery might not be similar to someone who had little pain pre op.

backissues
12-25-2012, 09:21 PM
In the meanwhile, you might want to buy yourself a "cane seat."

http://www.walmart.com/ip/21108211?adid=22222222227015571721&wmlspartner=wlpa&wl0=&wl1=g&wl2=&wl3=21486607510&wl4=&wl5=pla&veh=sem

I found it indispensable and used it for many years, especially at airports, touring, and shopping when a cart was not available. I found that leaning over, or sitting, took the pressure off the nerves and helped with the pain going down the leg or periformis.

Good luck!
Irene

susancook
12-26-2012, 01:55 AM
Two points here...

1. Based on her MRI report, they claim all that damage is SECONDARY to a 36* curve. I am not clear how they determine that rather than the smallish curve collapsing due to severe DDD but there you are. So I was wrong in suggesting Susan was somewhat different because I assumed she did NOT have idiopathic scoliosis but rather adult degenerative. And by the way, I think surgeons should be warning these folks with smallish curves to continue to monitor for damage and not just for progression. Bracing claims to halt progression but if there is still a world of damage possible with a smallish curve then brace wear can and should be further questioned.

2. The level of satisfaction with surgery tends to scale with pre-op pain levels per Linda. Since Susan has very high pain, she is more likely to be satisfied with any lesser post op pain. So her recovery might not be similar to someone who had little pain pre op.

Sharon: This didn't make sense to me either. I thought that the scoliosis in degenerative adult onset scoliosis was secondary or caused by the integrity failiure of the vertebrae. I will ask my spine MD about that: The chicken or the egg thing. I had my back checked many times just as a part of a general physical while I was in the Navy for 30 years. While I do not think that I had any back xrays done during that time, I really don't think that I had anything major going on scoliosis wise.

I agree with Linda's and your statement. It makes sense that if you have lots of pain preop, that you are not blown away or disappointed with the postop pain. Then, you are finally pleased when the pain subsides [says she who was a heating pad accross the back of her back since I have severe lower back apin and connot go to sleep until it lets up!]

susancook
12-26-2012, 01:58 AM
In the meanwhile, you might want to buy yourself a "cane seat."

http://www.walmart.com/ip/21108211?adid=22222222227015571721&wmlspartner=wlpa&wl0=&wl1=g&wl2=&wl3=21486607510&wl4=&wl5=pla&veh=sem

I found it indispensable and used it for many years, especially at airports, touring, and shopping when a cart was not available. I found that leaning over, or sitting, took the pressure off the nerves and helped with the pain going down the leg or periformis.

Good luck!
Irene

Thanks, Irene. I will check into it! Susan Beats lying on the ground.....

loves to skate
12-26-2012, 07:22 PM
Susan, your mailbox is full.
Sally

susancook
12-27-2012, 12:38 AM
Susan,
I think you misunderstand when you think that Adult Onset Degenerative Scoliosis patients are part of a unique group...those of us that have have scoliosis for most of our lives also have degenerating discs and all kinds of funky things going on in the our vertebrae and vertebral spaces that cause pain. I did not have surgery until I was 48, and had DDD with stenosis causing sciatica much like yours. I have also had problems with a 14 cm forward sagittal imbalance.

My point is that your recovery should you choose to have surgery, would be very similar to any other person with IS. Don't discount the stories of someone here just because they might not be exactly your situation.

You will know when you are ready. The choice will be clear when you find your surgeon. You haven't found him ( or her ) yet. May you have peace in your search.

Thanks for responding. The main difference that I see between many of the IS and us w/ adult onset degenerative scoliosis is the magnitude of the curve and the amount of time that we have been affected. You are very right, aging takes a toll on everyone w/ degeneration and stenosis and ah....how could I forget arthritis.

Right now I am in a bit of a frenzy as I am going to meet my second opinion [Dr. Hu] in 10 days and I am very nervous! What is she going to say? Will she say that I need to have more procedures or physical therapy [now x 1.5 years] and wait for surgery until things get worse? Will she say that I am OK as I am and just go home? Will she think that a surgical correction will help me? If she does say that....do I want surgery? Is she going to say to wait for surgery? I feel like I am auditioning! I have even started to plan my outfit!

I surely do need peace. Thanks for your advice. Susan

susancook
12-27-2012, 12:39 AM
Susan, your mailbox is full.
Sally

Sorry...I dumped some...Susan

susancook
12-29-2012, 11:00 AM
Obviously, I am struggling. I seem to ask the same question over and over again and expect different results. I read and retread posts, and I hear the message, "you'll know when it is time to have surgery". Yesterday, I think that I went beyond that point. We had a busy day, and I went shopping and to a reception. I was beyond over the top. I was in severe pain when we got home. I took all my pain meds plus and nothing helped. This morning, I feel pretty good and yesterday is just a blur. Maybe, I don't know when to get go and say, "enough". I am afraid that when I do have surgery (did I just say WHEN and not if?) that I will wonder what I waited so long.

I know that each person is different, but I wish that there was some meter that said, "You have exceeded reasonable pain, surgery will be scheduled". Having just written that, I think that I want someone to make the decision for me and I know that only I can make that decision for myself. But I keep going in circles and coming back to the same place. There is a missing piece to my dilemma, and I cannot figure out what it is. Why can't I figure out that I need to have surgery? Meanwhile, I find myself in excruciating pain, in the evening....
Susan, usually not an indecisive person.....why now?

Pooka1
12-29-2012, 11:13 AM
Hey Susan,

Do you think it is fear of the unknown? Maybe you could talk to several patients who have had the surgery. Maybe you can also find some people with similar pain levels as you who did not have surgery. Everyone is different but if you talk to enough people you might find an answer for your situation.

I agree this decision is no easy task. I would not be able to decide for many adult patients whereas the decision for both my daughters was a no-brainer... it was obvious that surgery would be better than no surgery. It's about letting go of the fantasy of normal and cutting losses. It was not a hard decision from a technical/medical standpoint. There is a reason virtually all orthopedic surgeons recommend fusing large progressive T curves in kids. Surgery is not only the last resort but the only resort to hope to salvage a normal life.

In the case of adults with lumbar involvement and pain and where the curve obviously won't literally kill you, there is a spectrum of considerations and plenty of grey area. None of that conduces to making the decision easy. Don't beat yourself up over not deciding.

Good luck.

golfnut
12-29-2012, 01:28 PM
Susan,
I tend to agree with Sharon that it is probably the fear of the unknown that is making it hard for you to be decisive about surgery. It is a difficult decison for all of us, but one that most haven't regretted. I had to also factor in that I didn't have much pain and was going to give up many activities that I enjoyed. As it turned out, I am back to all activities I had prior to surgery with the exception of high impact exercises. It is a tough surgery and a long recovery, but for me, the period of time that I waited for surgery was by far the most difficult. I am sorry you are so stressed. I hope that you will feel more decisive after your appointment on the 7th.

I definitely am glad I didn't wait any longer due to my age (60). Dr. Lenke said that I could wait a couple of years since I wasn't in much pain, but didn't recommend waiting until I was 70 because the "results aren't as good and the recovery is tougher".

JenniferG
12-29-2012, 02:19 PM
My feeling is that you haven't yet found that surgeon to trust. When I saw my surgeon, I didn't know him from a bar of soap. He was pleasant but distant and rattled off risks and complications like a tape recorder. He said I needed surgery within 12 months. I went off with my surgery date 3 months hence and fell into some sort of anxiety/depression. I couldn't think straight. I couldn't imagine having this surgery. I ended up cancelling. Over the following months I did my research and got questions answered, but importantly, I researched my surgeon, spoke to people who knew him or knew someone who'd been operated on by him. There were many. I didn't get one single bad report. Everyone raved over his skills. I got stories about how he'd changed lives, given people back their lives. I heard about very complicated but successful surgeries. Gradually I came to trust this man who I'd only met once.

I suspect a second visit might have sped up the process. It ended up 9 months by the time I had the surgery. But I felt confident he would do the right thing by me and I think that's what I needed to believe.

gardenia
12-31-2012, 04:55 PM
I mentioned that once I met Dr Bridwell, my brain told me 'go ahead'. At 62, after working so many years in corporate jobs in the computer business travelling for meetings with top executives etc. one starts trusting her 'gut feelings'. And, gut I have (baby fat) and otherwise.

Never considered the after the surgery phase. First week at the hospital was a total blur because I was heavily doped due to the dural tear or whatever which I can't remember.
Second week at the hospital was quasi normal but food was terrible.

Coming home. Rented a one bedroom across the hospital area which was a great choice by my husband. There are wide and clean hallways which I walk several times a day in circles. I can lay down or walk. Sitting is out most of the time for longer than an email.

Caregiver: my husband at 24x7 every minute I moan, he is there knowing that I am doing something I should not. I try to do things like reaching backwards etc. He now helps me with turning because he can see that I am not rolling top and hips together (he is very strict), won't let me relax one leg out in a froggie position because according to his description and doctor's paper document, I am pulling the screw attached to my hip. Oh, but it feels so good.

I will correct the nurses at Dr Bridwell that in the future telling patients that they could go home to a third floor without elevators is not an OK advise. I had problems climbing and they almost being carried up by husband and 2 daughters then down by myself. The next 3 days, I was in pain and tears. So, that passed and learned that I could have never done the walking I am doing here in the hallways in my daughters 2 bedroom condo with dead ends.

So, after the 3-4 days of miserry, my next desire was to visit the St Louis Cathedral specially after xmas (decorations etc). I wanted to go to mass but it would have been too long. I am no longer a practicing Catholic nor is my husband. Both daughters were baptized by not in the Catholic church because they did not have practicing good parents...

WE all went. I walked a lot and along the way did my prayers while looking at the prescious mosaic. One daughter took many photos as she is an archeologist and this might help her sometime in life. The other was less impressed. but, my intentions was to have the family in there to receive whatever those big domes on the ceilings were able to impart.

I want to believe that it is not only prayers from friends, family or myself for a rapid recovery but if there is a God and I took my girls into the sanctity of this place (I've been in there alone twice this past year and have felt feelings that I could not explain) that something in that church as a conduit from heaven above would transfer something into my daughters lives. I was not thinking about conversion but certainly something magic that they would have in their lives (like taking your car thru a car wash - pay $2 more and get a coating of wax- why not? when will you have the time to wax your car properly).

Does this make sense? I assure you I am not drugged at this time. But at 62, one can make up anything that makes sense even spiritually.

So, go meet with Dr Hu with a blank mind. No baggage, tell her your concerns and see what she has to offer. You will hear BS or you will hear confidence based on experience if she has it. Trust your feelings, ask questions and forget the 15 minutes allowance. Take someone with you that has your list of questions because you will not remember. The doctor and her entourage (I am sure she will have a fellow and maybe some interns) will not leave the room while you are in mid-sentence.

Remember that the appointment is about evaluating how good this doctor is in fixing your plumbing or spine. You need someone who can do the job correctly without causing other problems because they were not experienced enough to have expected it.

For example: Dr Bridwell wanted to make sure that I did not smoke nor I have diabetes. He said that another Dr. is having problems with someone he operated with diabetes.

Once your surgeon is done in the OR and you are in the hospital to get some monitoring until they can ship you home (don't ask to go home before you are ready regardless of how bad the food is) I had my husband sleep in the same room and it was a blessing. Those call buttons work but the staff is usually busy with other patients. So, if you have to go potty plan on waiting 10-15 minutes or an eternity - else your caregiver can take you.

Nights can be terrible without help and specially if you can't sleep. I have been on ambien for over 10 years and Dr Bridwell would not let me take it becasue the combo with other narcotics would mess me up. Like I can sleepwalk - yeah done that many times at home. but, looking at the clock until 4am is not helping with the healing. After, many nights for this, I had to fight it out with Dr Bridwell and convinced him to let me have one at night. Otherwise, it was no sleep, no rest, no use....

Good luck and please let us all know of your every step. There are many of us here to help sometimes I don't read blogs with old headings but then I find new things in them. So, maybe it is good to start a new heading.

You have my email ccmail4g@gmail.com ED is wonderful, he has supported me a couple of times directly. We are all here with one common problem that our friends and family cannot comprehend.

gardenia

titaniumed
12-31-2012, 10:51 PM
I keep going in circles and coming back to the same place. There is a missing piece to my dilemma, and I cannot figure out what it is. Why can't I figure out that I need to have surgery? Meanwhile, I find myself in excruciating pain, in the evening....
Susan, usually not an indecisive person.....why now?

Susan, The going around in circles will finally grow old and only after you are totally comfortable with the right surgeon, confident in that persons expertise, will you make the decision.....The one thing that happens is we end up building up such a high tolerance to pain that we have to have someone notice and say something like ďyour laying down on the floor againĒ as a friendly reminder that the pain really is out of control. I know this because I was there.....it was ridiculous. I waited 34 years.

My 74 year old neighbor had some sort of back problem last year and was in surgery within 5 days......was fixed up and lifting bags of fertilizer a few weeks later. He decided that he wasnít going to go through spine pain any longer than necessary. My jaw was hanging for a few days on that one. wow! Talk about a quick decision....and of course less stress.

These are two extremes in decision making.....Iím not saying wait 34 years or do it in the next 5 days....just pointing out the two differences in the thought process.....

I had trips out in Hawaii years ago where I was dying.....It was so bad....10 level pain on vacation for 2 weeks at a time. I was scuba diving with 9-10 level pain.....crazy stuff. The other divers could hear me moaning under water.

All these extreme pain events did add weight to the decision making scales of decision.

Ed

titaniumed
12-31-2012, 11:09 PM
Right now I am in a bit of a frenzy as I am going to meet my second opinion [Dr. Hu] in 10 days and I am very nervous! What is she going to say? Will she say that I need to have more procedures or physical therapy [now x 1.5 years] and wait for surgery until things get worse? Will she say that I am OK as I am and just go home? Will she think that a surgical correction will help me? If she does say that....do I want surgery? Is she going to say to wait for surgery? I feel like I am auditioning! I have even started to plan my outfit!

I surely do need peace. Thanks for your advice. Susan

Excellent!

I didnít see this post....I wouldnít worry about Dr Hu, she is fantastic....and brutally honest. She will not push you, it will be totally your decision, as should be. You donít have to make any decisions there at that meeting. No stress.....

Relax! Breathe! (smiley face)

Happy New Year!

Ed

Pooka1
01-01-2013, 10:25 AM
Excellent!

I didn’t see this post....I wouldn’t worry about Dr Hu, she is fantastic....and brutally honest. She will not push you, it will be totally your decision, as should be. You don’t have to make any decisions there at that meeting. No stress.....

Relax! Breathe! (smiley face)

Happy New Year!

Ed

This really illustrates the difference between what many kids/parents are facing and what many adults are facing. The surgeon told me point blank, no build up... my daughters needed surgery. Thrown in the deep end. At no point was I asked to consider it or go home and mull over it or come back with a decision at a later date or anything like that. I think the authorities might have stepped in had I refused, at least on the first kid and probably on the second. The surgeon knew their lives would have been ruined or worse absent surgery so that's why he left me with no choice basically or that's how I took it both times. Because they had such fast-moving curves, I would liken their fusions to surgery to remove my diseased appendix or fixing my ruptured ectopic... everything is weighed towards the surgery with no counter reason.

I have never seen an adult spoken to in that way on the group. It is really a maddening set of grey areas for them it seems. I don't fault anyone for not deciding.

Good luck to everyone.

Susie*Bee
01-01-2013, 11:19 AM
Sharon--not all doctors are that way with adult patients. I remember quite distinctly that that is why one Chicago member did not like my surgeon-- she wanted a doctor who would tell you "yes, you need surgery" or "no" or "not yet". Mine gave you the facts, the scenarios based on what was happening, and said you would know what to do when it was time, but it was your decision. Or you could just do nothing if that is what you decided, but then you would have those consequences. It IS your own life, after all. No matter how skilled your surgeon is, there are risks. Some don't want to go there and would rather risk ending up in a wheelchair with their chest caved in.

It is funny (peculiar) that though we think so differently in so many ways, I had almost written a post to Susan about "the fear of the unknown" and got too busy and then yours appeared... (smile)

Susan-- having been down that same road, it is a roller coaster ride. Many steps of the process are, up until the time of the surgery... The decision making process is very difficult, but it is the highest of the hurdles to leap over. I haven't gone back and read all the posts people have written in this thread, but I'm sure they have been very positive. Don't worry about the Wolpert book. It is excellent in so many ways, but I also found fault with it in what he said about older people and the time it takes to heal, etc. I think it is because he was younger and his knowledge base was with the younger set. You don't want to wait too much longer though, as the bones get more brittle with age and it does get a little trickier for the surgeons, although I think Linda has said they have done surgery on people much older. Some surgeons don't go past a certain age though.

One thing my surgeon had said that would help me to know if it was time to have surgery or not was if it was affecting my every day life. Is your back causing you to not do things you would normally be doing-- going out in the evenings or shopping with friends for the day? When I got to the point where I couldn't even carry a 9x13 dessert in to school because it was too heavy, or want to do anything in the evening, or go anywhere anymore, I realized it was affecting my life in such a way that I wanted to get it over with. I figured the sooner we went through with the surgery, the sooner the healing could begin and I could start living my life again. I am not one of the athletes on board here, but live a decent life, work full time at an elementary school and am very busy there, just managed having my whole family here (10 of us) for a week, doing the cooking, etc., and I consider that to be pretty good.

Best wishes as you work through this decision-making process. Relax a little and try to let your mind and emotions slow down a little for your appointment. It should go well.

susancook
01-01-2013, 01:05 PM
This really illustrates the difference between what many kids/parents are facing and what many adults are facing. The surgeon told me point blank, no build up... my daughters needed surgery. Thrown in the deep end. At no point was I asked to consider it or go home and mull over it or come back with a decision at a later date or anything like that. I think the authorities might have stepped in had I refused, at least on the first kid and probably on the second. The surgeon knew their lives would have been ruined or worse absent surgery so that's why he left me with no choice basically or that's how I took it both times. Because they had such fast-moving curves, I would liken their fusions to surgery to remove my diseased appendix or fixing my ruptured ectopic... everything is weighed towards the surgery with no counter reason.

I have never seen an adult spoken to in that way on the group. It is really a maddening set of grey areas for them it seems. I don't fault anyone for not deciding.

Good luck to everyone.

I totally understand that the procedure is elective and my choice, but it might be helpful to at least get some sense of the surgeon's inclination towards whether surgery is a good idea for me or not. Everyone has his or her individual pain tolerance. I get that. I like honesty. Wonder how I could word some question to get her opinion more?
Susan

Pooka1
01-01-2013, 01:17 PM
I totally understand that the procedure is elective and my choice, but it might be helpful to at least get some sense of the surgeon's inclination towards whether surgery is a good idea for me or not. Everyone has his or her individual pain tolerance. I get that. I like honesty. Wonder how I could word some question to get her opinion more?
Susan

You could ask if she would choose surgery for herself or her sister or mother given your radiographs and history of pain. Some doctors are so clear on the need for surgery that they volunteer this comment. If the surgeons are not clear about what they would do then that is good to know also. But you need a range of opinions.

You might also always ask about whether your surgical window might close and you will not be able to get surgery even if you wanted it. Ask what would close your window and when you could expect the window to be closed on you, if ever. I imagine some are relieved to know the window has closed on them so they don't have to decide. Think about if you might be in that category.

susancook
01-01-2013, 01:21 PM
Sharon--not all doctors are that way with adult patients. I remember quite distinctly that that is why one Chicago member did not like my surgeon-- she wanted a doctor who would tell you "yes, you need surgery" or "no" or "not yet". Mine gave you the facts, the scenarios based on what was happening, and said you would know what to do when it was time, but it was your decision. Or you could just do nothing if that is what you decided, but then you would have those consequences. It IS your own life, after all. No matter how skilled your surgeon is, there are risks. Some don't want to go there and would rather risk ending up in a wheelchair with their chest caved in.

It is funny (peculiar) that though we think so differently in so many ways, I had almost written a post to Susan about "the fear of the unknown" and got too busy and then yours appeared... (smile)

Susan-- having been down that same road, it is a roller coaster ride. Many steps of the process are, up until the time of the surgery... The decision making process is very difficult, but it is the highest of the hurdles to leap over. I haven't gone back and read all the posts people have written in this thread, but I'm sure they have been very positive. Don't worry about the Wolpert book. It is excellent in so many ways, but I also found fault with it in what he said about older people and the time it takes to heal, etc. I think it is because he was younger and his knowledge base was with the younger set. You don't want to wait too much longer though, as the bones get more brittle with age and it does get a little trickier for the surgeons, although I think Linda has said they have done surgery on people much older. Some surgeons don't go past a certain age though.

One thing my surgeon had said that would help me to know if it was time to have surgery or not was if it was affecting my every day life. Is your back causing you to not do things you would normally be doing-- going out in the evenings or shopping with friends for the day? When I got to the point where I couldn't even carry a 9x13 dessert in to school because it was too heavy, or want to do anything in the evening, or go anywhere anymore, I realized it was affecting my life in such a way that I wanted to get it over with. I figured the sooner we went through with the surgery, the sooner the healing could begin and I could start living my life again. I am not one of the athletes on board here, but live a decent life, work full time at an elementary school and am very busy there, just managed having my whole family here (10 of us) for a week, doing the cooking, etc., and I consider that to be pretty good.

Best wishes as you work through this decision-making process. Relax a little and try to let your mind and emotions slow down a little for your appointment. It should go well.

Thanks, Susie, your point about whether the pain disrupts your everyday life is good. I have some good days (mostly when I don't do much) and some totally awful days, particularly when I walk and stand a lot. I have difficulty carrying my 2 month old grandson. I am 66 and fairly flexible. I wonder how the progression will look and whether I will be in a wheelchair in 5 years....and then the possibilities of surgery might be limited. I need to re-look at my questions for Dr. Hu and see if she will give me some insight into what my future will be like if I do not have surgery. I feel that I am on the scoliosis fast track as it has been about a year since I first knew about the scoliosis and degeneration.

One part of relaxing is figuring out that I do not need to decide about surgery at this appointment. Originally, I thought that I would, but now I think that I probably will not.
Thanks for your support. Susan

Susie*Bee
01-01-2013, 01:23 PM
Susan-- this is me, Susie, not Pooka, but I would imagine she (Dr. Hu) would let you know what your progression is potentially going to lead to, and based on that knowledge, you can make a pretty good decision. Others have asked questions such as "if I were your sister, (mother?) what would your recommendation be...?" Most surgeons don't want to leave you floundering without recourse past the point of being able to have a viable surgery. I'm sure she'll be able to help you see where you stand and what lies ahead. Ask her advice. Be yourself and tell her how confused you are about this. A doctor who knows that a patient is concerned and has been trying to become informed (reading Wolpert, being on the forum asking questions, etc.) should be very open to answering your questions and quenching those fires that keep bursting into flame full of anxious thoughts.

Susan-- I typed/posted this before I saw the one you wrote to me... so I am adding on now. I do have to say that with some of us (not all, but with me and some others) the surgery is not a panacea where you can do everything you used to do. Lifting is still difficult for me and I can't lift things much more than 20 lbs. But grandsons can climb up into Grandma's lap, and I can pick them up for a super short "quickie"...

Yes, you don't have to decide everything at this appointment. You'll need some time to think it over and discuss it. Take care.

susancook
01-01-2013, 01:24 PM
You could ask if she would choose surgery for herself or her sister or mother given your radiographs and history of pain. Some doctors are so clear on the need for surgery that they volunteer this comment. If the surgeons are not clear about what they would do then that is good to know also. But you need a range of opinions.

You might also always ask about whether your surgical window might close and you will not be able to get surgery even if you wanted it. Ask what would close your window and when you could expect the window to be closed on you, if ever. I imagine some are relieved to know the window has closed on them so they don't have to decide. Think about if you might be in that category.

Sharon, can I hire you to come with me for the appointment? I'd treat you to lunch! Susan

Pooka1
01-01-2013, 01:29 PM
Sharon, can I hire you to come with me for the appointment? I'd treat you to lunch! Susan

Susan, you can do this. You're qualified. You don't need me or anyone. :-)

susancook
01-01-2013, 01:46 PM
Susan, you can do this. You're qualified. You don't need me or anyone. :-)

Your confidence in me is appreciated. I have never been so stuck in my entire life on a decision. Indecision is not my style....I am not known as a woman who takes prisoners! I have read and re-read this thread and others seem to know me better than I know myself. I do need to be able to 100 percent trust my surgeon. I worry that I only have 30 minutes with Dr. Hu, but I can come back. I need to better understand the change in coronal balance. I asked my physical therapist and she said something like the muscles are no longer able to hold the spine upright.

Have a great new year! Susan.....offer is still open for lunch......

JenniferG
01-01-2013, 02:47 PM
You could ask if she would choose surgery for herself or her sister or mother given your radiographs and history of pain. Some doctors are so clear on the need for surgery that they volunteer this comment. If the surgeons are not clear about what they would do then that is good to know also. But you need a range of opinions.



That's exactly what I asked my surgeon. "If it was your wife in my position, what would you recommend for her?" Surgery. It did help the decision to go forward.

tae_tap
01-01-2013, 03:04 PM
Your confidence in me is appreciated. I have never been so stuck in my entire life on a decision. Indecision is not my style....I am not known as a woman who takes prisoners! I have read and re-read this thread and others seem to know me better than I know myself. I do need to be able to 100 percent trust my surgeon. I worry that I only have 30 minutes with Dr. Hu, but I can come back. I need to better understand the change in coronal balance. I asked my physical therapist and she said something like the muscles are no longer able to hold the spine upright.

Have a great new year! Susan.....offer is still open for lunch......


Susan,
I will tell you what my doctor said when I was researching and trying to understand every aspect (when my expertise is in feet, not backs): " it is your turn to be the patient and only that". In other words, you are going to drive yourself completely insane if you use your energy understanding every little technical aspect of your condition/surgery.

I also asked him what he would say if this was his wife, and he said " sister, it's time"! But he also said that we needed to become friends and once that relationship was established we would discuss a date.

It is hard when you are in the medical field not to pick throu every scenario and want to know 100% of the facts and statistics, but at some point we too have to let go and just trust that we have the education and knowledge to pick the best doctor for our situation. For me prayer was a big part. Through prayer and trust I was able to make that first step. And your advice from the beginning to let go of the "what if's" and trust all will be fine.

Tamena

susancook
01-01-2013, 06:35 PM
Thank you, thank you, thank you to everyone who has offered suggestions and support. I will re-read this thread often and revise some of my questions....yes, Linda, I have limited my questions to my doctor!
Susan

Irina
01-01-2013, 11:25 PM
Susan,

I know it is very hard, but try to relax before the appointment with Dr. Hu - you don't have to decide anything at this appointment. You get to know the doctor, see what she has to say, go home, sleep on it and see what happens. If you choose your questions carefully, you'll get all the answers. I did - Dr. Hu covered most of the questions I had in our conversation and I only had a few left and she answered all of them.

Confusedmom
01-03-2013, 11:51 PM
Susan,

A little off topic here, but have you had a bone-density scan? That could possibly help you make a decision. When I found out I have osteopenia, it was one more check mark on the side to have surgery sooner, rather than later.

Best,
Evelyn

susancook
01-04-2013, 03:41 PM
Susan,

A little off topic here, but have you had a bone-density scan? That could possibly help you make a decision. When I found out I have osteopenia, it was one more check mark on the side to have surgery sooner, rather than later.

Best,
Evelyn

Scan was great! Solid bones! Something like + 1.5. Something is at least OK! Susan

susancook
01-09-2013, 12:49 AM
However, you have to be very sure about this surgery. Otherwise you might end up without pain but bitterly disappointed because you've lost flexibility. Or bitterly disappointed because you've still got a bit of a lean when standing...that sort of thing. Because there are cons as well as pros for this surgery, so you have to know in your mind that you absolutely must have it and for all the important reasons. To arrest progression, to reduce/remove pain.

The above statement I found in a message a few pages back and I think that It summarizes my hesitation. How can anyone be "very sure" about the surgery?

So....where am I?....I went for a second opinion w/ Dr. Hu and loved her! She recommended a 2 days surgery w/ T3-sacrum fusion and repair of discs, stenosis, and other degenerative stuff. Se said that mortality w/ the surgery for my age and surgery were 1/100. Scary. Her surgery scheduler called me today and I told her that I still need to think about it. Is there some hole that I can crawl in? HELP! Where can I find peace with this? Dr. Hu said that I would be progressively degenerating if I did not have the surgery. I think sometimes that I can manage like I am and just continue to have steroid shots and denervations....and then I think, That's crazy! How can I do that for 20 more years......
Susan

JenniferG
01-09-2013, 03:05 AM
No pelvic fixation, Susan?

99 out of 100 patients survive and that would include patients with other health problems. The odds are very good.

Pooka1
01-09-2013, 05:51 AM
So....where am I?....I went for a second opinion w/ Dr. Hu and loved her! She recommended a 2 days surgery w/ T3-sacrum fusion and repair of discs, stenosis, and other degenerative stuff. Se said that mortality w/ the surgery for my age and surgery were 1/100. Scary. Her surgery scheduler called me today and I told her that I still need to think about it. Is there some hole that I can crawl in? HELP! Where can I find peace with this? Dr. Hu said that I would be progressively degenerating if I did not have the surgery. I think sometimes that I can manage like I am and just continue to have steroid shots and denervations....and then I think, That's crazy! How can I do that for 20 more years......
Susan

I agree with Jennifer that the people who have problems or worse probably had co-morbidities. Kids with significant health problems sometimes have problems with fusion whereas the vast majority of otherwise healthy kids sail through. You seem to be generally healthy apart from your back.

It's good that you didn't schedule because you shouldn't feel like you are being rushed. You need to own this decision.

You may be able to manage now but Dr. Hu told you it would be getting worse. Based on what you wrote, there is NO CHANCE you might plateau on the worsening. So your choices are wait to see how much worse it gets and see if you can handle it or you can fix it now. Looking at this from the outside, any decision you make would seem defensible.

Maybe you can follow up with asking so what if it gets worse. What would that mean? It would probably help you to know if avoiding the flexibility loss of a lumbar fusion now may result in loss of mobility itself in the future.

You should also ask how long you can expect to get the steroid shots both at the present pace if it doesn't worsen significantly and at an increased pace when you deteriorate significantly. If your cortisol levels crash, you'll feel crappy on top of having severe back pain.

There are no angels looking out for back patients. You are on your own.

Good luck.

Irina
01-09-2013, 11:31 AM
How can anyone be "very sure" about the surgery?



Susan,

I asked myself the same question - how can I be 100% sure about this surgery and I think that the answer is that nobody can be absolutely sure. You just make the best decision you can and do not look back.

I compared the things I was able to do 5-10 years ago with what I can do now and I know that in another 5-10 years I will be able to do even less. Three doctors telling me "it will get worse" only confirmed what I knew already. So, I decided to be proactive and don't second-guess myself anymore.

Best of luck with your decision!

golfnut
01-09-2013, 04:01 PM
Susan,
Have you looked at a thread I started "Looking for People Who Have Returned to Athletic Activities after Spinal Surgery"? In my signature, there is a link to a video of me playing golf. On the thread that I started, you can see a video of Donna playing tennis, Doreen archery shooting, Ed snow skiing, etc. Anyway, one definitely looses flexibility with spinal fusion, but it doesn't stop us from returning to most activities.
Best of luck with your decision. I struggled with it as well, especially since pain was not an issue at the time.

JenniferG
01-09-2013, 04:21 PM
Susan,

I asked myself the same question - how can I be 100% sure about this surgery and I think that the answer is that nobody can be absolutely sure. You just make the best decision you can and do not look back.

I compared the things I was able to do 5-10 years ago with what I can do now and I know that in another 5-10 years I will be able to do even less. Three doctors telling me "it will get worse" only confirmed what I knew already. So, I decided to be proactive and don't second-guess myself anymore.

Best of luck with your decision!

Irina, being "very sure" isn't quite the same thing as being 100% sure. Since there are never any guarantees, we can't be 100% sure, therefore, we need to settle for "very" sure. This can be based on stats such as the one Susan quoted that one in 100 don't survive the surgery which means 99 in 100 do survive. But I would suspect that figure is based on all patients, including those with other, risky medical conditions.

There is risk of death in all surgeries, not just spinal fusion surgery.

JuliaAnn
01-09-2013, 05:54 PM
I have followed this thread with interest. Due to my severe injury last July, I didn't have an option on surgery.

My scoliosis was slowly collapsing and I had degenerative discs that caused pain for at least 10 years before my injury. During those 10 years, I used conservative non-medicine methods to manage the pain - a TENS unit, home traction machine, massage, wearing a brace, physical therapy, heat and ice packs.

During those 10 years I sought surgery twice but was told I was too old. That made me so mad! I was about 43 years old the first time and about 49 the second time I sought surgery, I can't remember. I figured it would be way easier to recover from major surgery while I was healthy than wait until I was completely collapsed. It just didn't make sense to slowly lose so much mobility and function and health when I knew surgery would give me back the stability my spine lacked. When I injured my back in July, I was relieved that finally I would be able to get my back fixed. I had surgery on October 2nd at the age of 53 and have just begun my fourth month of recovery.

As for trusting a surgeon... after having gone through so many years of conservative treatment and being told I was too old, I finally decided to trust God to use even a crummy surgeon if I could find one. Last year I was in serious pain and disability so I could no longer physically shop around for a surgeon. I could barely manage sitting in a car having someone else transport me anywhere. But I was at great peace when I decided to trust God to work everything out. I did an internet search for scoliosis surgeons in Raleigh, NC and found Dr Hey. He was the only surgeon I called and I didn't even bother to get a second opinion. I didn't know anything about him, other than finding his blog so I didn't even know he was a fantastic surgeon. I'm glad I trusted God to work everything out.

When I saw Dr. Hey, he asked if I wanted any injections. I told him no because that would only mask the problem and would not make my spine stable. He completely agreed. My insurance required all possible conservative methods were tried before surgery would be approved. Fortunately, I got approval for surgery without the injections. I'm glad about that.

As for losing mobility... I have been slowly losing mobility over the past decade anyway so it didn't matter to me whether surgery would make me lose even more. I am fused from T1 to pelvis, with 29 bolts and an 18" incision. I use grabbers for a lot around the house. I do have teen sons at home so they get things out of low cupboards for me. It is wonderful not having the constant dreadful pain I had before fusion. The pain I have now is all "healing pain" which is good, unlike the "sick pain" I had before. Healing pain is bearable!

This was my first ever surgery and it wasn't as bad as I thought it would be. The recovery pain has been bearable with pain medication and support. During the first 24 hours after surgery, I didn't know I could press the morphine button often. In the middle of the night, a nurse came into my room and said to me "You've only pressed the morphine button 3 times in 4 hours. Is everything ok?" I told her I didn't want to get addicted. She said "Honey, you can press it once every five minutes!!! So watch that clock on the wall. When five minutes have passed, you can press the button!!!" She was amazed that I had born so much pain with almost no medication. I was glad they figured out that I wasn't using the button and encouraged me to use it. Pain medication is good!

I have no regrets whatsoever about getting surgery. Yes I've lost some flexibility but I was slowly losing all flexibility before surgery anyway. Yes, I'm having a lot of pain in recovery, but I know this is temporary. If I did not have surgery, the pain would only get worse. I'm looking forward to being able to hug my grandchildren again without fearing they'll throw my back out. I'm looking forward to being able to using my sewing machine without a lot of pain. I'm looking forward to being able to sit in any chair, anywhere in the world! Sitting was so uncomfortable that I stood a lot and had to quit going to church and even visit friends because most seats caused my vertebrae to slip and nerves to pinch. I am now 54 years old and instead of dreading growing older with pain that only gets worse, I'm getting a life back. 2013 is a very good year already.

Susan, I hope you find peace in your decision. I care about you and I'm keeping you in prayer.

susancook
01-09-2013, 07:50 PM
No pelvic fixation, Susan?

99 out of 100 patients survive and that would include patients with other health problems. The odds are very good.

Unsure about pelvic fixation....exactly what is that? Susan... Last night I was talking to my husband about the 1 in 100 risk and told him that when Dr. Hu said that, I immediately said to her, "I don't smoke, and am about normal weight, not hypertensive". She replied , "Then maybe you are on the other side of the 1%". I said to my husband, "I was trying to convince her that I was less that 1% risk." He replied, "You were trying to convince yourself". Hmmmmmmm..................

susancook
01-09-2013, 07:56 PM
Susan,
Have you looked at a thread I started "Looking for People Who Have Returned to Athletic Activities after Spinal Surgery"? In my signature, there is a link to a video of me playing golf. On the thread that I started, you can see a video of Donna playing tennis, Doreen archery shooting, Ed snow skiing, etc. Anyway, one definitely looses flexibility with spinal fusion, but it doesn't stop us from returning to most activities.
Best of luck with your decision. I struggled with it as well, especially since pain was not an issue at the time.

I have read your thread and appreciate those that responded. I used to backpack....Dr. Hart said, Probably not", but Ed seems to make it work. Susan

golfnut
01-09-2013, 08:05 PM
JuliaAnn,
I just got chills reading your post. Maybe you could copy and paste it in a new thread so that it gets read by more people.

susancook
01-09-2013, 08:13 PM
I have followed this thread with interest. Due to my severe injury last July, I didn't have an option on surgery.

My scoliosis was slowly collapsing and I had degenerative discs that caused pain for at least 10 years before my injury. During those 10 years, I used conservative non-medicine methods to manage the pain - a TENS unit, home traction machine, massage, wearing a brace, physical therapy, heat and ice packs.

During those 10 years I sought surgery twice but was told I was too old. That made me so mad! I was about 43 years old the first time and about 49 the second time I sought surgery, I can't remember. I figured it would be way easier to recover from major surgery while I was healthy than wait until I was completely collapsed. It just didn't make sense to slowly lose so much mobility and function and health when I knew surgery would give me back the stability my spine lacked. When I injured my back in July, I was relieved that finally I would be able to get my back fixed. I had surgery on October 2nd at the age of 53 and have just begun my fourth month of recovery.

As for trusting a surgeon... after having gone through so many years of conservative treatment and being told I was too old, I finally decided to trust God to use even a crummy surgeon if I could find one. Last year I was in serious pain and disability so I could no longer physically shop around for a surgeon. I could barely manage sitting in a car having someone else transport me anywhere. But I was at great peace when I decided to trust God to work everything out. I did an internet search for scoliosis surgeons in Raleigh, NC and found Dr Hey. He was the only surgeon I called and I didn't even bother to get a second opinion. I didn't know anything about him, other than finding his blog so I didn't even know he was a fantastic surgeon. I'm glad I trusted God to work everything out.

When I saw Dr. Hey, he asked if I wanted any injections. I told him no because that would only mask the problem and would not make my spine stable. He completely agreed. My insurance required all possible conservative methods were tried before surgery would be approved. Fortunately, I got approval for surgery without the injections. I'm glad about that.

As for losing mobility... I have been slowly losing mobility over the past decade anyway so it didn't matter to me whether surgery would make me lose even more. I am fused from T1 to pelvis, with 29 bolts and an 18" incision. I use grabbers for a lot around the house. I do have teen sons at home so they get things out of low cupboards for me. It is wonderful not having the constant dreadful pain I had before fusion. The pain I have now is all "healing pain" which is good, unlike the "sick pain" I had before. Healing pain is bearable!

This was my first ever surgery and it wasn't as bad as I thought it would be. The recovery pain has been bearable with pain medication and support. During the first 24 hours after surgery, I didn't know I could press the morphine button often. In the middle of the night, a nurse came into my room and said to me "You've only pressed the morphine button 3 times in 4 hours. Is everything ok?" I told her I didn't want to get addicted. She said "Honey, you can press it once every five minutes!!! So watch that clock on the wall. When five minutes have passed, you can press the button!!!" She was amazed that I had born so much pain with almost no medication. I was glad they figured out that I wasn't using the button and encouraged me to use it. Pain medication is good!

I have no regrets whatsoever about getting surgery. Yes I've lost some flexibility but I was slowly losing all flexibility before surgery anyway. Yes, I'm having a lot of pain in recovery, but I know this is temporary. If I did not have surgery, the pain would only get worse. I'm looking forward to being able to hug my grandchildren again without fearing they'll throw my back out. I'm looking forward to being able to using my sewing machine without a lot of pain. I'm looking forward to being able to sit in any chair, anywhere in the world! Sitting was so uncomfortable that I stood a lot and had to quit going to church and even visit friends because most seats caused my vertebrae to slip and nerves to pinch. I am now 54 years old and instead of dreading growing older with pain that only gets worse, I'm getting a life back. 2013 is a very good year already.

Susan, I hope you find peace in your decision. I care about you and I'm keeping you in prayer.

Julie Ann: Your message has brought tears to my eyes. You have addressed so many of my weaknesses and concerns. Want to be my scoliosis coach?

One thought that I had on reading your post on pain: the pain that I feel right now leaning ever so slightly forward to type this really doesn't have any purpose. The pain after surgery is healing pain and at least has a purpose....So, maybe it might feel a little less or at least like it is doing something positive???? Maybe I've gone off the deep end, huh?

Your comment about seeking help from God, brought a smile to my face. Feeling very alone and frustrated with my indecision and reading everything that I could [Medline searches, medical textbooks...and yes, almost all of the hundreds of threads on the "First Surgery" section [that's plain nuts!, sorry Gayle, I said that I would stop reading the forum and the bad stuff, but I couldn't
;+{. ],] I decided to pray. Mind you, I consider myself religious, but don't go to church often....well, almost never. I used to go when I was in the military as I figured that when I went to war, I really needed God on my side. So, I prayed and asked God to help me figure this all out: To give me peace and help me make a decision. That evening, I had the worst back pain in a while, and I decided that maybe God way saying, "See, how does this feels....want to be like this for 20 more years?" I thought that it was ironic that I was in such pain after I had an afternoon self prayer session...but that night really was a decider for me...and I have thanked God for help....he [she] knows what gets my attention.

I know what you mean about choosing comfortable chairs. I constantly scan a room that I go into trying to find a comfortable chair.

Thanks for taking the tim to tell me your story. It has helped me more than you can appreciate. HUGS and the best for 2013.
Susan

JenniferG
01-09-2013, 09:14 PM
Unsure about pelvic fixation....exactly what is that? Susan... Last night I was talking to my husband about the 1 in 100 risk and told him that when Dr. Hu said that, I immediately said to her, "I don't smoke, and am about normal weight, not hypertensive". She replied , "Then maybe you are on the other side of the 1%". I said to my husband, "I was trying to convince her that I was less that 1% risk." He replied, "You were trying to convince yourself". Hmmmmmmm..................

Have a look at the photos in my signature. The "after" x-ray shows the iliac bolts (I think they're called) into my pelvis. I believe (someone may correct me) they give added stabilisation during fusion.

susancook
01-09-2013, 09:25 PM
Susan,
I will tell you what my doctor said when I was researching and trying to understand every aspect (when my expertise is in feet, not backs): " it is your turn to be the patient and only that". In other words, you are going to drive yourself completely insane if you use your energy understanding every little technical aspect of your condition/surgery.

I also asked him what he would say if this was his wife, and he said " sister, it's time"! But he also said that we needed to become friends and once that relationship was established we would discuss a date.

It is hard when you are in the medical field not to pick throu every scenario and want to know 100% of the facts and statistics, but at some point we too have to let go and just trust that we have the education and knowledge to pick the best doctor for our situation. For me prayer was a big part. Through prayer and trust I was able to make that first step. And your advice from the beginning to let go of the "what if's" and trust all will be fine.

Tamena

Not easy being a patient....I'm trying. Susan

susancook
01-09-2013, 09:52 PM
First of all, thank you so much to everyone who has posted support here for me and to those who sent me emails and calls. I surely needed your help!

I have decided to have surgery, probably at the end of February with Dr. Hu at UCSF. Deciding to actually have surgery and trusting someone with my life has been a very difficult process.

Here are the details of the visit with Dr. Hu and what she [we?] is/are planning [most of these notes were taken by my son Marcos, a family nurse practitioner]:
➢ If NO surgery is done, expect to be more crooked (not morally)and in increased pain.
If done sooner rather than later, the curve will be smaller and surgery easier.
➢ Denervation Procedure (Susan had this done months ago) Dr. Hu suspects these may hasten onset of scoliosis/coronal imbalance.
➢ The longer you wait, the more surgery will be needed.
➢ Susan has relatively good flexibity now
➢ Q: “Would you recommend I have surgery?” A: “Yes”
➢ Q: Who does well with this surgery?
o People on few narcotics [esp long term]
o Recent onset or worsening of spinal tilt
o Functional limitations
o People with High Cardiovascular fitness

2) The Surgery

➢ Could be done within 2 months (March)
➢ SURGERY LIKELY TO IMPROVE FUNCTION, BUT UNLIKELY TO IMPROVE CURRENT PAIN [I will call her about this, maybe we misunderstood her....I REALLY want my sciatic pain GONE!]
➢ Goals of surgery:
1) Straighten thoracic spine to stop the kyphosis/scoliosis and improve mobility
2) Fuse lumbar spine damaged by osteoarthritis to stop degeneration and tilting of spine
➢ Approach: 2 separate surgeries (done 2-5 days apart), usually Tuesday and Thursday
o Fuse L4/5 with S1 -approach from lower abdomen/lateral (Anterior Lumbar Interbody Fusion or ALIF).
Vascular surgeon there to aid approach. This approach causes less damage to musculature.
o Hardware and bone grafts for Thoracic spince –approach from posterior(Posterior Spine Fusion or PSF + Extreme Lateral Inerbody Fusion or XLIF)
➢ Complications: 5-10% Psoas Nerve Numbness from stretching it; 1% chance of death for my age and surgery [YIKES!!!!!!];
Infection/severe hemorrhage/paralysis/heart attack numbers not given.
➢ Leave Hospital after 7-10 days, once able to walk stairs, stool unassisted [unsure what my son means here...], out of bed unassisted, pain controlled.
Chance of death for my age and surgery: 1/100 [YIKES!]
Does not usually use bone growth stimulators
Recommends consider rehab facility after surgery

I was pretty overwhelmed [and dazzled] by Dr. Hu and our discussion. She spent an hour with my son and me. I was very nervous before we went in to see her. She immediately made me feel at ease. My biggest concern was that she would not offer to do my surgery...if she had said that, I would have started crying and fallen apart.

This morning while driving with my husband into Portland, I suddenly started to cry. I have NO IDEA why I was crying.

I made the final decision to have surgery this morning after reading some supportive emails from some of you on this forum [thanks!]. It was the final piece of confidence that I needed. I called Dr. Hu's scheduler and left a message. Hopefully, I will have surgery in late February 2013.

I am exhausted and confident. I am going to carry a picture of Dr. Hu glued to the back of my cell phone with the word, "Trust". I need that visual reminder. I am also going to learn self-hypnosis and go to a medical hyponotist to better learn self-control and relaxation. I saw a mental health therapist this afternoon [I have been seeing him for depression, some of which has been caused by my scoliosis pain and disability] and we reviewed my decision making for surgery. That helped alot.

So...now I need to find the gym and local swimming pool and get going! I feel driven to be in good shape. Strengthen my thighs [will be thighs of steel!] and improve my cardio-vascular fitness.

Your twisted Sister, Susan

Confusedmom
01-09-2013, 11:34 PM
Susan,

Congratulations on making your decision. For what it's worth, it seems like the right one to me. I would not hesitate to have this surgery if I had severe scoliosis-related pain. Also, I will just mention that I, too, was extremely freaked out about the chance of death. But my local surgeon said it was less than the chance of getting struck by lightning. (Dr. Hu's % sounds high to me, but maybe it's the age difference.) Also, Dr. Lenke's nurse told me he had not had a single patient die in the five years she had worked with him. So you might ask Dr. Hu that question--I suspect her statistics might be better than average, as well. Finally, maybe think about asking for Valium or something else that you can take to relieve your anxiety prior to surgery. (Regular SSRIs like Lexapro and Prozac are a no-no because they have blood thinning properties.)

Good luck! It sounds like you are headed in the right direction!

Evelyn

Irina
01-10-2013, 12:19 AM
Congratulations, Susan. The hardest part - making the decision is over. You sounded much better and more at peace on the phone. I am really-really happy for you - you need this surgery because there are only so many injections you can get. I am pretty sure that Dr. Hu meant that the surgery is likely to improve function and reduce pain. Otherwise, how can you have one without another - improved function without pain reduction? You will feel even better after you speak with Dr. Hu patients - that helped me a lot and may be, depending on the date you get, we'll meet at the UCSF hospital and moan together :-)

susancook
01-10-2013, 01:37 AM
Congratulations, Susan. The hardest part - making the decision is over. You sounded much better and more at peace on the phone. I am really-really happy for you - you need this surgery because there are only so many injections you can get. I am pretty sure that Dr. Hu meant that the surgery is likely to improve function and reduce pain. Otherwise, how can you have one without another - improved function without pain reduction? You will feel even better after you speak with Dr. Hu patients - that helped me a lot and may be, depending on the date you get, we'll meet at the UCSF hospital and moan together :-)

Just think Irina, I might have my surgery the week before you. Dr. Hu could "practice" on me and then be more skilled with you! HUGS, Susan

golfnut
01-10-2013, 08:34 AM
Congratulations, Susan, on making your decision for surgery. I think you will feel more at peace. You just needed to find the right surgeon which is the biggest step of all. Now, for the training! I kept a log of what I did for exercise each day and continued it after surgery. Buying a pedometer was useful to me. We are here for you!

JuliaAnn
01-10-2013, 07:57 PM
Susan, I'm so glad you have made a decision! Mental battles over decisions can be so draining. You made the right decision. I'm really glad I was able to help you by sharing my experience.

There might be times after your surgery in the early recovery where you might doubt having gotten surgery. Now, before surgery, is a good time to remember how difficult your life is so you can use those thoughts after surgery. Usually, we make a scrapbook of the good times in our life. Before surgery was the first time I ever actually wanted to remember the bad time, so that my recovery would be all the more sweet.

When I was at two months in recovery, I regretted getting the surgery. But then my sons told me "Mom! Don't you remember how much pain you were in? And how you could only sit in one chair in the whole house? How you quit sewing and walking and baking? And how you never wanted to go anywhere because you didn't know if you might hurt worse after?" I had completely forgotten how frustrated I was, how limited I was, how declining I was. I'm glad my kids were there to help me through the most difficult period of recovery. They reminded me the pain I was in was now temporary. How wonderful to know that I was healing and no longer declining!

Now at 3 months and one week in recovery, I fully remember how difficult the past five years were. I remember my short temper with my kids and grandkids. I remember feeling so very old and fragile, a thought that frightened me because I wasn't ready to sit in a wheelchair. I had given up on dreams, not realizing surgery would give me my dreams back.

You seem like a wonderfully energetic person, full of life. Make a point to focus on what will be in your future, all the good that is yet to come. You will be SO glad that you got surgery over with so you can move on to more living. I'll be thinking of you in the weeks to come.

JenniferG
01-10-2013, 11:32 PM
Congratulations Susan! I think you just made the best decision. Fill your spare time with doing whatever it takes to get fit and healthy. It's the one thing we have control over to help our odds for a good outcome.

susancook
01-11-2013, 12:23 AM
Susan, I'm so glad you have made a decision! Mental battles over decisions can be so draining. You made the right decision. I'm really glad I was able to help you by sharing my experience.

There might be times after your surgery in the early recovery where you might doubt having gotten surgery. Now, before surgery, is a good time to remember how difficult your life is so you can use those thoughts after surgery. Usually, we make a scrapbook of the good times in our life. Before surgery was the first time I ever actually wanted to remember the bad time, so that my recovery would be all the more sweet.

When I was at two months in recovery, I regretted getting the surgery. But then my sons told me "Mom! Don't you remember how much pain you were in? And how you could only sit in one chair in the whole house? How you quit sewing and walking and baking? And how you never wanted to go anywhere because you didn't know if you might hurt worse after?" I had completely forgotten how frustrated I was, how limited I was, how declining I was. I'm glad my kids were there to help me through the most difficult period of recovery. They reminded me the pain I was in was now temporary. How wonderful to know that I was healing and no longer declining!

Now at 3 months and one week in recovery, I fully remember how difficult the past five years were. I remember my short temper with my kids and grandkids. I remember feeling so very old and fragile, a thought that frightened me because I wasn't ready to sit in a wheelchair. I had given up on dreams, not realizing surgery would give me my dreams back.

You seem like a wonderfully energetic person, full of life. Make a point to focus on what will be in your future, all the good that is yet to come. You will be SO glad that you got surgery over with so you can move on to more living. I'll be thinking of you in the weeks to come.

Thanks....especially for the recovery timelines for feelings about the surgery. I know that people are different and my timeline will be different, but I appreciate your sharing your emotional ups and downs. I am not in alot of pain most of the time, but occasionally, I am toast! I am 66 and Dr. Hu says that I will only go downhill...after all it's called "degenerative scoliosis" not regenerative scoliosis. I do forget the painful times and sometimes am in denial, "It's not too bad, really, I had a good day". Then I realize that I sat around all day and did little and I forget the day that I laid on the floor at the international gate waiting to load the plane or the afternoon that I laid on the floor at the Y and someone wanted to call 911.
Someone suggested that I should write down the reasons that I want to have surgery and then look at the postop when I have regrets.

I print out all of your blogs and keep them to help me understand what will happen. Thanks again for sharing.
Susan

susancook
01-11-2013, 12:52 AM
The scheduler from Dr. Hu called back promptly at 0900 as promised and we set a date of March 12 and 14. After we got off the phone, I thought, my God, I made a date for surgery on the Ides of March! So I went to the internet and discovered that the Ides Of March is the 15th. After making the appointment, I called Irina who was wonderfully supportive of me.

I felt a relief after making the schedule.

Later, in the afternoon, I started to feel sad and thought about what I would be losing with the surgery. I am fairly flexible [I did some gymnastics in high school] and enjoy curling up. I know [intellectually] that I am doing this for some current pain, but mostly for the probability that I will make progressive decline in spinal health over the next 20 years [the name of my conditon is "degenerative"]. In some way this is a noble cause....but am I ready to lose my spinal flexibility and take on A LOT of extra pain...some of which may never go away for a future that is unsure? What if I beat the odds and did not decline progressively in the future and then had surgery that created disability? I went to REI to look for a rain hat and jacket and then went through the luggage section. I thought, "Why don't you replace the duffle bag that was trashed in Fiji a few months ago, so that you have luggage to return and do more medical work in the future?" [I headed a women's health project in FIJI for 2 months, then did a malaria eradication project in Papua New Guinea from Sept-Dec]. And then I thought, I'm not going to be able to go back to Fiji, so forget it. Then, I slumped a little more into regret and feeling down. I swore to myself that I wouldn't do that after I committed to surgery and a surgeon....but I am feeling down. Then I went to Sur la Table [sale] and my back was killing me. I saw a paneni [spelling?] maker on sale for my daughter but figured that I couldn't buy it because I couldn't carry it to my car, in fact at that point, my back hurt so much that I wondered how I would make it to the car. I did buy it and asked the salesperson to carry it for me.

I am still feeling in a slump....kind of down. I wish that I could have an hour of feeling how it would be postop and maybe that would help me now with my indecision/regret. I need to get myself together and be proactive and get ready for the surgery. But now I am numb and tired. Susan

PS: Later....got to start relaxing and trusting....TRUST....so, I glued a picture of Dr. Hu on the back of my cell phone above the words, "TRUST" and "In it to Win It". Maybe if I look at it multiple times daily, I can relax and let go....and why did I think that after I made my appointment that I could relax for more than a few hours? Silly dreamer, I am....

susancook
01-11-2013, 02:03 AM
Have a look at the photos in my signature. The "after" x-ray shows the iliac bolts (I think they're called) into my pelvis. I believe (someone may correct me) they give added stabilisation during fusion.

Boy, it surely does look like those pelvic bolts are there to stay! I can't imagine what it looks like when they are screwing those bolts into place! YIKES!!!!!Thanks for sharing, Susan

JenniferG
01-11-2013, 02:14 AM
The scheduler from Dr. Hu called back promptly at 0900 as promised and we set a date of March 12 and 14. After we got off the phone, I thought, my God, I made a date for surgery on the Ides of March! So I went to the internet and discovered that the Ides Of March is the 15th. After making the appointment, I called Irina who was wonderfully supportive of me.

I felt a relief after making the schedule.

Later, in the afternoon, I started to feel sad and thought about what I would be losing with the surgery. I am fairly flexible [I did some gymnastics in high school] and enjoy curling up. I know [intellectually] that I am doing this for some current pain, but mostly for the probability that I will make progressive decline in spinal health over the next 20 years [the name of my conditon is "degenerative"]. In some way this is a noble cause....but am I ready to lose my spinal flexibility and take on A LOT of extra pain...some of which may never go away for a future that is unsure? What if I beat the odds and did not decline progressively in the future and then had surgery that created disability? I went to REI to look for a rain hat and jacket and then went through the luggage section. I thought, "Why don't you replace the duffle bag that was trashed in Fiji a few months ago, so that you have luggage to return and do more medical work in the future?" [I headed a women's health project in FIJI for 2 months, then did a malaria eradication project in Papua New Guinea from Sept-Dec]. And then I thought, I'm not going to be able to go back to Fiji, so forget it. Then, I slumped a little more into regret and feeling down. I swore to myself that I wouldn't do that after I committed to surgery and a surgeon....but I am feeling down. Then I went to Sur la Table [sale] and my back was killing me. I saw a paneni [spelling?] maker on sale for my daughter but figured that I couldn't buy it because I couldn't carry it to my car, in fact at that point, my back hurt so much that I wondered how I would make it to the car. I did buy it and asked the salesperson to carry it for me.

I am still feeling in a slump....kind of down. I wish that I could have an hour of feeling how it would be postop and maybe that would help me now with my indecision/regret. I need to get myself together and be proactive and get ready for the surgery. But now I am numb and tired. Susan

PS: Later....got to start relaxing and trusting....TRUST....so, I glued a picture of Dr. Hu on the back of my cell phone above the words, "TRUST" and "In it to Win It". Maybe if I look at it multiple times daily, I can relax and let go....and why did I think that after I made my appointment that I could relax for more than a few hours? Silly dreamer, I am....

No no no! Someone here just said she was down because the surgery would take away all her dreams when in fact it will give her back all her dreams. And this is true! This is going to make your dreams possible, not take them away.

I can remember thinking my back was only going to get worse and I felt old already and what a grim future I had, then I was offered surgery and I realized I had a chance to grow old doing what I wanted to do, not sitting in a wheelchair. I feel thirty years younger than I am and know anything's possible. If you want to go to Papua New Guinea, then make plans! They desperately need malaria eradication projects. Or go to nearby East Timor, the poorest nation in Asia, where my friend recently volunteered for three weeks - there is so much to do!

leahdragonfly
01-11-2013, 07:11 AM
Hi Susan,

Congratulations on your decision and setting the dates! You are finding your peace. You can do this.

One thing I did for several months before surgery was when I was having back pain or a bad day, I would write down all the sensations and pain. Then, when I had a good day where maybe my back felt not so bad and I stated to doubt, I could whip out my descriptions and remind myself why I had decided for surgery. I wonder if that would be helpful for you.

Now, don't look back and start to what-if yourself about future worsening. I love what Dr Hu said, it is degeneration not regeneration! Good point. You know in your heart you will not get better, so that is why you have found yourself with a surgery date.

Have you explored the Peggy Huddleston (name?) pre-surgical anxiety tapes? Several people here found them very helpful. I almost bought them, never did, but I could have used them to ease pre-surgical fears and worries. Let me know if you can't find reference to them, and I will look up the name of the tapes.

We are all here to help you, Susan! You are going to do great.

Irina
01-11-2013, 11:40 AM
Susan,

After I booked the date, I also had these dreadful "what-ifs" on several occasions. If I had a good day, I would start doubting myself and driving my husband nuts. When that happened, he would give me the best reality check - he would say: "Let's go for a walk". Half-an-hour later we'll return home with back pain, but happy and at peace with my decision. We had this drill several times and I already knew and laughed at his "Let's go for a walk" routine.

So, may be you can ask your husband when you have a bad moment to tell you: "Let's go for a walk, Susan"? Worked like magic for me :-)

Susie*Bee
01-11-2013, 03:58 PM
Susan-- I've been following your posts and am so excited that you set your dates. Almost everyone has those up and down thoughts-- we used to refer to that period of time after making the decision until the surgery as a big roller coaster ride. Your emotions and thoughts go up and down all the time. How many times did I ask myself "What have I gotten myself into?" I didn't read all the posts in this thread, but Gayle had a good way of dealing with her ups and downs, and I have to admit that Irina's husband is very clever! (You can tell him I said so!, Irina) Jennifer too-- it only gets worse, not better-- your quality of life is not going to improve miraculously. You give up some things with the fusion, but gain others that are much better. Your back will be stabilized so you won't have to worry about it getting worse and worse with time.

You may be out of commission for awhile, but that isn't like the trade-off of not doing anything and just getting worse and worse. I've been "out" 5.5 years now and have continued to get better each year. You can do this! One thing I personally would not trade is the strength of character it has given those of us who have had our surgeries. It builds character. Strength. Determination. And you know that you WILL work, step by step, during the healing time. It's similar in a sense to going through childbirth. Some of us had our babies naturally and worked through the pain-- maybe using our breathing techniques and whatnot. But we looked beyond the pain to the prize that was ahead. There was a goal that helped us through. Same with this. Your eyes need to be on the prize--ultimately spinal reconstruction to stabilize your back and hopefully ease your pain. Your trust needs to be with your doctor (and if you have faith, there also), and try not to let your eyes drift off the prize. It sounds like Dr. Hu is an excellent doctor and your outcome should be great. I wish you all the best.

susancook
01-11-2013, 11:03 PM
Susan,

After I booked the date, I also had these dreadful "what-ifs" on several occasions. If I had a good day, I would start doubting myself and driving my husband nuts. When that happened, he would give me the best reality check - he would say: "Let's go for a walk". Half-an-hour later we'll return home with back pain, but happy and at peace with my decision. We had this drill several times and I already knew and laughed at his "Let's go for a walk" routine.

So, may be you can ask your husband when you have a bad moment to tell you: "Let's go for a walk, Susan"? Worked like magic for me :-)

I went to Costco today, does that count? Got out of bed late because the increased dose of Lyrica makes me too sedated. I could barely walk as my R thigh hurt so much Went to town for a pap smear/biopsy....fun.....then did some errands. Pain actually got better, so I ventured to Costco. I couldn't load the car as it really hurts my back to lift. Made dinner with moderate pain...cooked chicken from Costco made dinner easy.

I have been looking at Dr. Hu's picture on my cell phone above the words "TRUST". I think that's beginning to help. Susan

Irina
01-11-2013, 11:13 PM
Costco does count :-) Good to hear that a picture is beginning to help.

Are you planning things to do while recovering? This will keep you in a positive mood. Something you always wanted to do, but didn't have time for (not ice-skating, of course :-) I just bought an accent reduction CD for windows so that I not only listen to it, but see on the screen how the teachers move their lips etc. I always wanted to take some accent reduction classes, but never had time. Now, here you go. I am going to practice every day when recovering, and then you, guys, will give me a test :-)

susancook
01-11-2013, 11:18 PM
Susan-- I've been following your posts and am so excited that you set your dates. Almost everyone has those up and down thoughts-- we used to refer to that period of time after making the decision until the surgery as a big roller coaster ride. Your emotions and thoughts go up and down all the time. How many times did I ask myself "What have I gotten myself into?" I didn't read all the posts in this thread, but Gayle had a good way of dealing with her ups and downs, and I have to admit that Irina's husband is very clever! (You can tell him I said so!, Irina) Jennifer too-- it only gets worse, not better-- your quality of life is not going to improve miraculously. You give up some things with the fusion, but gain others that are much better. Your back will be stabilized so you won't have to worry about it getting worse and worse with time.

You may be out of commission for awhile, but that isn't like the trade-off of not doing anything and just getting worse and worse. I've been "out" 5.5 years now and have continued to get better each year. You can do this! One thing I personally would not trade is the strength of character it has given those of us who have had our surgeries. It builds character. Strength. Determination. And you know that you WILL work, step by step, during the healing time. It's similar in a sense to going through childbirth. Some of us had our babies naturally and worked through the pain-- maybe using our breathing techniques and whatnot. But we looked beyond the pain to the prize that was ahead. There was a goal that helped us through. Same with this. Your eyes need to be on the prize--ultimately spinal reconstruction to stabilize your back and hopefully ease your pain. Your trust needs to be with your doctor (and if you have faith, there also), and try not to let your eyes drift off the prize. It sounds like Dr. Hu is an excellent doctor and your outcome should be great. I wish you all the best.

Thanks, Susie. When I had my second child natural childbirth at a birthing center, right before he was born, I remember thinking, "I'm going to die soon". Then out popped an 8# baby!
When Dr. Hu told me that it would be a 2 day surgery [with a day in between], I was surprised as Dr. Hart said 1 day. Dr. Hu said that I would have to stand up and walk some between the surgeries. My son, the nurse practitioner said, "You won't want to get up and walk". I replied, "Oh yes I will. Whatever they ask me to do to get better." I'm stubborn that way.

The surgery has so many unknowns. I'm in the medical field and I remember all the bad outcomes. I am trusting my life to a doctor that I have met for one hour!

I see the "prize" and I wish that there was some sort of guarantee that it would be mine: that is a good fusion, recovery in a year or so and mostly pain free spinal life. If I knew that the prize was mine, then I could relax more. I trust Dr. Hu, but I am sure that she has had bad outcomes.

I start hypnosis therapy next week. Maybe I can relax more. Think I'll go get a glass of pinot gris for relaxation. Susan

susancook
01-11-2013, 11:24 PM
Costco does count :-) Good to hear that a picture is beginning to help.

Are you planning things to do while recovering? This will keep you in a positive mood. Something you always wanted to do, but didn't have time for (not ice-skating, of course :-) I just bought an accent reduction CD for windows so that I not only listen to it, but see on the screen how the teachers move their lips etc. I always wanted to take some accent reduction classes, but never had time. Now, here you go. I am going to practice every day when recovering, and then you, guys, will give me a test :-)

Planning to do while I recover? I was going to take lots of good drugs!

Seriously, you have started me thinking about it and I will figure something out. Maybe I can learn to speak Russian and we can talk? I do like your accent, it makes you more intriging!

Susan

leahdragonfly
01-12-2013, 09:59 AM
Hi Susan,

here is a link to the Peg Huddleston pre-surgical relaxation tapes I mentioned above:

http://www.healfaster.com

Several people here have used them and found them to be very helpful. They are also available on amazon.com

Irina
01-12-2013, 12:19 PM
Planning to do while I recover? I was going to take lots of good drugs!

Seriously, you have started me thinking about it and I will figure something out. Maybe I can learn to speak Russian and we can talk? I do like your accent, it makes you more intriging!

Susan

Sure, Susan - I'll teach you Russian :-) But seriously, it's good for us to have something positive to look forward to. I always needed some goals in my life - whether it's getting Masters' degree or remodeling kitchen or planning European vacation next year. Without these goals to look forward to my life seems bleak. That's why I am setting little goals to work on during my recovery - not only while on drugs, but even after that because I would have a lot of down-time before going back to work. I need to keep myself busy or I'll go ku-ku.

If you have skype, we can chat after the surgery. You will do fine - you are a captain (read this somewhere and was very impressed!). May be you can tell me stories about your life in military - I would be very interested!

susancook
01-12-2013, 11:23 PM
Sure, Susan - I'll teach you Russian :-) But seriously, it's good for us to have something positive to look forward to. I always needed some goals in my life - whether it's getting Masters' degree or remodeling kitchen or planning European vacation next year. Without these goals to look forward to my life seems bleak. That's why I am setting little goals to work on during my recovery - not only while on drugs, but even after that because I would have a lot of down-time before going back to work. I need to keep myself busy or I'll go ku-ku.

If you have skype, we can chat after the surgery. You will do fine - you are a captain (read this somewhere and was very impressed!). May be you can tell me stories about your life in military - I would be very interested!

What a nice idea....skype. I'm so happy that you will be in the hospital part of the time that I am! I can watch you run up and down the halls while I'm falling on the floor trying to get out of bed! Skype would be great!

From what Dr. Hu said, little ole ladies like me usually go to a rehab facility postop for a week or so. I plan to stay in the SF area for 6 weeks postop, so maybe the last week, if both of us are able to get out, maybe a lunch together with our chauffers?

I will find a hobby postop. I plan to record a lot of music, soft classical for calming moments and country western for getting goof sh.. kicking when I get out of bed and walk down the hall!

Mark and I both spent 30 years in the military, all Navy for Mark [he graduated from the Naval Academy] and 20 Navy and 10 in the Army for me.....5 on active duty and 25 in the reserves. I do have some very funny stories! You could tell me stories about being in Russia and I will tell you sea stories. Postop should go quickly! Hahahahahahahahahahaha Susan

Irina
01-12-2013, 11:33 PM
What a nice idea....skype. I'm so happy that you will be in the hospital part of the time that I am! I can watch you run up and down the halls while I'm falling on the floor trying to get out of bed! Skype would be great!

From what Dr. Hu said, little ole ladies like me usually go to a rehab facility postop for a week or so. I plan to stay in the SF area for 6 weeks postop, so maybe the last week, if both of us are able to get out, maybe a lunch together with our chauffers?

I will find a hobby postop. I plan to record a lot of music, soft classical for calming moments and country western for getting goof sh.. kicking when I get out of bed and walk down the hall!

Mark and I both spent 30 years in the military, all Navy for Mark [he graduated from the Naval Academy] and 20 Navy and 10 in the Army for me.....5 on active duty and 25 in the reserves. I do have some very funny stories! You could tell me stories about being in Russia and I will tell you sea stories. Postop should go quickly! Hahahahahahahahahahaha Susan

Deal! I have some good stories too. We'll exchange skype IDs in email.

susancook
01-12-2013, 11:36 PM
This sounds strange....guess that I best stay in counseling, but has anyone been sad preop mourning the future loss of what they have before surgery? I feel somewhat sad and down. I realize that when I am postop that I will never been the same. I know, I'll be better postop....but there is a part of me that doesn't want to let go of what I have now. Sure, I'm in pain now, but I'm trading it for an unknown, that could potentially be worse than I am now. I also realize that the name of my scoliosis is "degenerative" and that doesn't sound good, but there is a fantasy part of me that says that I might be OK in the future. Who am I fooling? I could barely walk out to the parking lot today after shopping [short trip]. What's wrong with me? I made a committment to myself that when I made the surgery date that I would just relax and trust my doctor. I don't think that my doctor is the problem. My intellect knows that I need to have the surgery, but my heart isn't all there....Susan

naptown78
01-13-2013, 09:07 PM
Susan, I'm so glad you have made a decision! Mental battles over decisions can be so draining. You made the right decision. I'm really glad I was able to help you by sharing my experience.

There might be times after your surgery in the early recovery where you might doubt having gotten surgery. Now, before surgery, is a good time to remember how difficult your life is so you can use those thoughts after surgery. Usually, we make a scrapbook of the good times in our life. Before surgery was the first time I ever actually wanted to remember the bad time, so that my recovery would be all the more sweet.

When I was at two months in recovery, I regretted getting the surgery. But then my sons told me "Mom! Don't you remember how much pain you were in? And how you could only sit in one chair in the whole house? How you quit sewing and walking and baking? And how you never wanted to go anywhere because you didn't know if you might hurt worse after?" I had completely forgotten how frustrated I was, how limited I was, how declining I was. I'm glad my kids were there to help me through the most difficult period of recovery. They reminded me the pain I was in was now temporary. How wonderful to know that I was healing and no longer declining!

Now at 3 months and one week in recovery, I fully remember how difficult the past five years were. I remember my short temper with my kids and grandkids. I remember feeling so very old and fragile, a thought that frightened me because I wasn't ready to sit in a wheelchair. I had given up on dreams, not realizing surgery would give me my dreams back.

You seem like a wonderfully energetic person, full of life. Make a point to focus on what will be in your future, all the good that is yet to come. You will be SO glad that you got surgery over with so you can move on to more living. I'll be thinking of you in the weeks to come.

Such a good post...and great things to remember. I am one year out from my second revision surgery, doing great and still sometime wonder why I had surgery in the first place. It is easy to forget the pain I had prior to surgery as I am in no pain now.

It still amazes me though the simple things I can do now that caused me such intense back pain before. Even in my twenties, I remember sitting at the sewing machine with my back all stoved up for hours. At Christmas time, wrapping presents was not pleasant either as it always caused my back to hurt. Standing at the stove, shopping, going to the grocery, my job...as I got older it just got worse. At 45 I felt 30 years older than I really was.

Susan, I can do all of these things now without a thought and with no pain. I can stand in any line as long as I wish just like anyone else. And I can tell you that I could only stand for 5 minutes pre-surgery. Granted, I cannot carry heavy weights or run. But I didn't do those things before...
My back is still flexible enough to sleep in a semi fetal position if I want, I can pull my knees to my chest for a stretch. ( You shouldn't do this for several months following surgery). It's taken me awhile, but I am finally able to say I would do it again.

Its a big surgery and can have some big rewards. Look forward, be positive and before you know it it will be April and it will be all over!

susancook
01-14-2013, 01:05 AM
Thank you to everyone for suggestions and support. I assumed that my opportunities to curl on my side in the fetal position will non-existent after the surgery, but Naptown said that it is till possible? Things are looking up, then. I assumed that such a position was not possible.

I have concluded that not having surgery really isn't a good option for me. If my spine is truly on a down hill slope, then I will only get worse and surgery in the future, if I wait, will only be more difficult. I am still angry that this happened to me [why me?] and that I don't have much of a choice really, unless I want to become more and more inactive and have more pain. Guess that I am angry. There does not appear to be a way that I can control the situation.

Susan

leahdragonfly
01-14-2013, 07:51 AM
Guess that I am angry. There does not appear to be a way that I can control the situation. Susan

Hi Susan,

I feel for you as you make your way through this decision-making mine-field. Right now you're suffering a little bit of scheduler's remorse. It happened to me, and I am sure it is very common. You can move past it. Pull out your list of reasons why you decided to have surgery, and keep referring to it.

I think you have done a lot and can continue to work toward controlling your situation as much as possible. You have made many supportive friends here on this forum. You have realized that not having surgery is not a viable option. You have worked hard and traveled to find an excellent surgeon who you are comfortable with. Next step is to work really hard on optimizing your cardiovascular condition as much as possible before surgery. Remember, those thighs of steel! You need them!

Yes, I agree, our situations with our backs are disappointing and just not fair, but I know you are strong enough to move past that. Keep your eyes on the prize! You have a lot of support here. Chin up my friend!

susancook
01-14-2013, 03:49 PM
Hi Susan,

I feel for you as you make your way through this decision-making mine-field. Right now you're suffering a little bit of scheduler's remorse. It happened to me, and I am sure it is very common. You can move past it. Pull out your list of reasons why you decided to have surgery, and keep referring to it.

I think you have done a lot and can continue to work toward controlling your situation as much as possible. You have made many supportive friends here on this forum. You have realized that not having surgery is not a viable option. You have worked hard and traveled to find an excellent surgeon who you are comfortable with. Next step is to work really hard on optimizing your cardiovascular condition as much as possible before surgery. Remember, those thighs of steel! You need them!

Yes, I agree, our situations with our backs are disappointing and just not fair, but I know you are strong enough to move past that. Keep your eyes on the prize! You have a lot of support here. Chin up my friend!

Thanks Gayle...words of wisdom from someone who has been there multiple times....you are my hero!. I have started my list of why I need the surgery and why not to have surgery.The side of NEED is more compelling.

To day the thought of canceling the surgery occurred to me briefly. I don't know where it came from, it just broadsided me! And then I thought, "If not now, when?". The timing is actually convenient [well, somewhat....who has months to just heal and take drugs?]. Got to get that thought out of my head! Susan

susancook
01-16-2013, 03:05 AM
I sent some questions to Dr. Hu about pain after surgery. She said that "with the length of time that you have had the sciatic pain, she is not sure she can reliably improve this". Am I bummed! My anterior thigh hurts so much and the thought of this not improving after surgery is frustrating. I'll be really bummed if I lose the mobility of my back, go through all of the surgical pain, only to still have sciatic/leg pain. ;+[ Susan

Pooka1
01-16-2013, 05:49 AM
I sent some questions to Dr. Hu about pain after surgery. She said that "with the length of time that you have had the sciatic pain, she is not sure she can reliably improve this". Am I bummed! My anterior thigh hurts so much and the thought of this not improving after surgery is frustrating. I'll be really bummed if I lose the mobility of my back, go through all of the surgical pain, only to still have sciatic/leg pain. ;+[ Susan

Well it would be pretty huge also if you avoided future nerve pain with the surgery. Isn't that one of the reasons to have surgery?

For the benefit of others who struggle through years of sciatica, how long did you have that pain? I bet many don't know that if you wait too long, not even surgery can help in some cases.

Good luck, Susan

loves to skate
01-16-2013, 02:21 PM
Susan,
I guess I missed your post where you said you decided to have the surgery. You will have a lot of anxious moments before your surgery, but try not to think of the negatives. Even though I still have pain, I am not disabled to the extent that I was prior to surgery. Pain can be dealt with but disability like you have now will not improve unless you have surgery. Imagery was a big help to me. I imagined myself going for walks, shopping, museums and all the things you can do while walking. I imagined myself back on my roller skates. Imagine yourself back in Fiji helping all those ladies in Fiji who need you so much.
I will be going on a Clipper Ship cruise next week in the Leeward Islands, something I could never have been able to do before my surgery.
You will be in my thoughts and prayers.
Sally

susancook
01-17-2013, 02:29 AM
Well it would be pretty huge also if you avoided future nerve pain with the surgery. Isn't that one of the reasons to have surgery?

For the benefit of others who struggle through years of sciatica, how long did you have that pain? I bet many don't know that if you wait too long, not even surgery can help in some cases.

Good luck, Susan

I have had R sciatic pain that radiated to back and my buttocks for about 1.5 years. It just started in my anterior thigh about 9 months ago. I have had 3 corticosteroid inj: 1st lasted 1 month, 2nd lasted 2 months, and 3rd lasted 4 days. I was hoping that the third one [done in Dec 2012] would last a couple of months. The pain amangement MD at OHSU said that I could only have 4 in a year and that I would have to wait 4 more months for another. Presently, I can stand for about 5 minutes tops before thigh pain sets in [if that long].

I was trying to interpret what she [Dr. Hu] said. I think that she means not to get my hopes up, that surgery is not a guarantee for fixing the pain. My physical therapist today said that sometimes with chronic pain, your body has pain pathways set up and that chronic pain may permanently change your perception of pain along those pathways.

Still bummed, but now, more than before, I believe that I need to have the surgery. Still not happy about it, but now at least am on the team!

Susan

susancook
01-17-2013, 02:37 AM
Susan,
I guess I missed your post where you said you decided to have the surgery. You will have a lot of anxious moments before your surgery, but try not to think of the negatives. Even though I still have pain, I am not disabled to the extent that I was prior to surgery. Pain can be dealt with but disability like you have now will not improve unless you have surgery. Imagery was a big help to me. I imagined myself going for walks, shopping, museums and all the things you can do while walking. I imagined myself back on my roller skates. Imagine yourself back in Fiji helping all those ladies in Fiji who need you so much.
I will be going on a Clipper Ship cruise next week in the Leeward Islands, something I could never have been able to do before my surgery.
You will be in my thoughts and prayers.
Sally

Have fun on your cruise! Yes, surgery is March 12 & 14 in San Francisco. You are totally right, my back will not improve on it's own. My new motto is, "If not now, when?" OK to wait if your back isn't deteriorating and you have time to spare. At 66, I am not getting any younger! And now I have a coronal balance of 11.something.

I will try imagery. Do you have a tape or book that you could recommend? I started in hypnosis today....I have 4 more sessions.

Mark and I are going to Mexico for 3 weeks starting on Saturday. I am not on any pain meds....we'll see how I survive! Maybe Margaritas?

Susan

susancook
01-23-2013, 08:29 PM
In Mexico...barely made it on and off the plane as the walking was awful! Having difficulty walking. Surgery date has changed as Dr. Hu is going out of the country. Now really convinced that I DO NEED SURGERY!!!!!!!!!!!!!!!!!!!!!!!
Susan

Irina
01-23-2013, 08:53 PM
When is your new surgery date?

susancook
01-25-2013, 06:30 PM
When is your new surgery date?

Just received an email. It will be the 19 and 22 of March.
Susan

golfnut
01-25-2013, 06:46 PM
Susan,
Sometimes it's easier to KNOW that you are making the right decision when you have pain. Since I didn't have much pain, I really second guessed myself constantly. In spite of that, I have never regretted having surgery at age 60. You are making the right decision for a happy, healthy, active life with much less pain!

JuliaAnn
01-25-2013, 08:05 PM
Susan, how long will you be on your trip? I hope you have time to rest your back before returning. Sorry that you have so much pain. I agree that the pain makes the decision for surgery easier. I'm in my fourth month of recovery and I feel better now than I have felt for literally years! You will be so glad you got surgery. You'll be able to do so much more.

I hope you're having a wonderful time now. I'd love to see a photo of you enjoying that balmy sunshine!

susancook
01-26-2013, 07:32 PM
Susan,
Sometimes it's easier to KNOW that you are making the right decision when you have pain. Since I didn't have much pain, I really second guessed myself constantly. In spite of that, I have never regretted having surgery at age 60. You are making the right decision for a happy, healthy, active life with much less pain!

We are in Puerto Vallarta, Mexico. We came here 3 years ago and I walked around for hours without pain. We just came back from grocery shopping and I had to stop every block to sit down. Boy, are those benches dirty. I got back to the hotel and on the final steps, my husband said, "Just go for a walk and you know that you need surgery". Irina, he appreciated the comment that your husband said!

So, I'm on my heating pad and trying to recover. Yes, it does make the surgery situation more appealing. Right after surgery, when I first walk, I will be looking for right leg pain.

Thanks for your support. I really need it. I am still afraid.....Susan

susancook
01-26-2013, 07:37 PM
Susan, how long will you be on your trip? I hope you have time to rest your back before returning. Sorry that you have so much pain. I agree that the pain makes the decision for surgery easier. I'm in my fourth month of recovery and I feel better now than I have felt for literally years! You will be so glad you got surgery. You'll be able to do so much more.

I hope you're having a wonderful time now. I'd love to see a photo of you enjoying that balmy sunshine!

WOW four months since surgery and you feel great! That gives me some hope. Our trip is for 3 weeks. Rest before surgery, ha! I have so much to do when I get home.

I would post a picture but I have not set anything up to do that yet. Send me your email via a private message and I think that I can send you one via my phone email.
Susanna

golfnut
01-26-2013, 10:53 PM
Susan,
It's normal to be afraid, however, most of the things I worried about didn't happen. I had no problem stopping pain medications and I had worried terribly about going through withdrawal. I also feared extreme pain and I didn't have it. You just have to bite the bullet,hope for the best, and take one day at a time with the attitude that you will continue to improve and your future is going to be better because you had the guts to have the surgery now. I realize that I had a smoother recovery than many, but many others who have smooth recoveries move on with their lives and quit posting.
You have everything going for you. You'll do just fine!

susancook
01-28-2013, 09:12 PM
Trying to feel more confident about surgery. Part, well most of me wants to back out. When I feel ok, I think that maybe the X-ray is wrong and that I don't have degeneration. I do believe that I have a stenosis since my butt and thigh hurt when I stand or walk. I only had one visit with Dr. Hu, maybe I need her reassurance that things are as bad as I think that they are.

As I figure it, maybe I have 2 choices:

- to not have surgery and possibly watch my discs degenerate and my vertebrae become more stenotic. Then maybe need surgery when I get worse and am older ( new readers, I am already old!). But maybe, maybe I could be OK without surgery.

- to have surgery means that I will have the change and inconvenience of fusion from T3 to sacrum. Pain after one year and for the rest of my life could be more pain, the same pain, or maybe less pain or no pain. Maybe I will have more disability or maybe my number was up and I am the 1 of 100 that Dr. Hu gave me as statistics for death at my age with my projected surgery.

Maybe I should meet again with Dr. Hu. Where is my confidence? (Curse word deleted)
Susan

susancook
01-28-2013, 09:29 PM
Trying to feel more confident about surgery. Part, well most of me wants to back out. When I feel ok, I think that maybe the X-ray is wrong and that I don't have degeneration. I do believe that I have a stenosis since my butt and thigh hurt when I stand or walk. I only had one visit with Dr. Hu, maybe I need her reassurance that things are as bad as I think that they are.

As I figure it, maybe I have 2 choices:

- to not have surgery and possibly watch my discs degenerate and my vertebrae become more stenotic. Then maybe need surgery when I get worse and am older ( new readers, I am already old!). But maybe, maybe I could be OK without surgery.

- to have surgery means that I will have the change and inconvenience of fusion from T3 to sacrum. Pain after one year and for the rest of my life could be more pain, the same pain, or maybe less pain or no pain. Maybe I will have more disability or maybe my number was up and I am the 1 of 100 that Dr. Hu gave me as statistics for death at my age with my projected surgery.

Maybe I should meet again with Dr. Hu. Where is my confidence? (Curse word deleted)
Susan

Confusedmom
01-28-2013, 10:32 PM
Susan,

I think you should meet with your surgeon or possibly another surgeon (for second, third or whatever opinion). Your case seems like pretty much of a slam dunk for surgery now. But, I TOTALLY get the indecision and focus on risks. That's me! But you have to balance the risks of surgery with the risks of NOT having surgery. If you don't, it seems pretty certain degeneration and pain are in your future. Those can cause functional disability. If you do, you likely will have a reduction in pain, if not elimination, and you will trade off a loss of flexibility. Try not to worry so much about the risk of death and other risks that just are very rare complications. You have a top surgeon, which should help reduce those risks.

Best,
Evelyn

tennisplayer
01-29-2013, 11:49 AM
Susan,
This is Gretchen's husband, I will tell you her experience. She had degenerative lumbar scoliosis which had progressed over the past 3 years along with spinal stenosis. She is 70 and still was able to play tennis several times a week. Although the curve was only 34 degrees from observation she had significant changes over that time. It was a difficult decision. Her surgeon did the anterior part (actually from the side) on November 12. It was complicated by a heart rhythm problem so the posterior part wasn't done until Dec. 7. She was very weak and it was a difficult time. However, she made it through that and when her surgeon last saw her several weeks ago he thought that she was doing amazingly well.

Gretchen is able to walk for 30 minutes at a good pace without a problem. She still is taking pain meds but has cut down alot and will go for 7-8 hours without any med. The problems she presently has: 1) difficulty with regulating the bowels- more often lately too loose so we have stopped the miralax for now,2) she does get some swelling of the lower legs- left leg more than the right- the surgeon thinks that will go away but no one really seems to know why it occurs- we control it by periodically lying in bed with her legs on two pillows and using compressive stocking occasionally although they are not comfortable, 3) she has to sleep on her back and used to always sleep on her side, hoping she will be able to do that once she has achieved fusion, 4) her surgeon still wants her to wear her brace when she is up and that is hot and uncomfortable, 5) she gets depressed sometimes thinking that she should be further along even though it is less than two months from her operation. Although she still has back pain she no longer has leg pain as she did before surgery. She still is not fully independent- cutting toenails, shaving her legs, removing her socks- and that bothers her but I'm sure others on this forum who are further along can give you better information about that.

Gretchen does feel that she will be able to return to tennis in the future. She had the same doubts you have. I am a physician and have had patients in the past with similar problems who did not have surgery and developed other complications such as difficulty breathing due to compression of the lungs from the deformity. She felt too that it would be better to do the surgery while she was in pretty good condition rather than wait a few years when she would be older yet. Getting some regular walking exercise before surgery does help.

Susan, I don't know if this information is helpful to you. It is a difficult decision. Whatever you decide to do will be the right decision for you.

Dick

susancook
01-29-2013, 04:01 PM
Susan,
This is Gretchen's husband, I will tell you her experience. She had degenerative lumbar scoliosis which had progressed over the past 3 years along with spinal stenosis. She is 70 and still was able to play tennis several times a week. Although the curve was only 34 degrees from observation she had significant changes over that time. It was a difficult decision. Her surgeon did the anterior part (actually from the side) on November 12. It was complicated by a heart rhythm problem so the posterior part wasn't done until Dec. 7. She was very weak and it was a difficult time. However, she made it through that and when her surgeon last saw her several weeks ago he thought that she was doing amazingly well.

Gretchen is able to walk for 30 minutes at a good pace without a problem. She still is taking pain meds but has cut down alot and will go for 7-8 hours without any med. The problems she presently has: 1) difficulty with regulating the bowels- more often lately too loose so we have stopped the miralax for now,2) she does get some swelling of the lower legs- left leg more than the right- the surgeon thinks that will go away but no one really seems to know why it occurs- we control it by periodically lying in bed with her legs on two pillows and using compressive stocking occasionally although they are not comfortable, 3) she has to sleep on her back and used to always sleep on her side, hoping she will be able to do that once she has achieved fusion, 4) her surgeon still wants her to wear her brace when she is up and that is hot and uncomfortable, 5) she gets depressed sometimes thinking that she should be further along even though it is less than two months from her operation. Although she still has back pain she no longer has leg pain as she did before surgery. She still is not fully independent- cutting toenails, shaving her legs, removing her socks- and that bothers her but I'm sure others on this forum who are further along can give you better information about that.

Gretchen does feel that she will be able to return to tennis in the future. She had the same doubts you have. I am a physician and have had patients in the past with similar problems who did not have surgery and developed other complications such as difficulty breathing due to compression of the lungs from the deformity. She felt too that it would be better to do the surgery while she was in pretty good condition rather than wait a few years when she would be older yet. Getting some regular walking exercise before surgery does help.

Susan, I don't know if this information is helpful to you. It is a difficult decision. Whatever you decide to do will be the right decision for you.

Dick

Thanks Dick and Confusedmom, your posts are so helpful. I am a PhD prepared nurse practitioner, so I have worked both clinically in an outpatient setting and at a research center doing hormonal research.
I know that things will get much worse before they get better. Tell your wife that many people between 2 weeks and 2 months regretted having surgery. At 4 months, most people said that they were happy that they had surgery. Maybe that will help Gretchen some. Everyone one in my family is so supportive. I delude myself to think that I won't get worse in the future, but, after all, the condition is called degenerative for a reason. Thank you, thank you, thank you to both of you and all that have been supportive.

Gretchen walked 30 minutes without leg discomfort? I am awed. My leg pain starts as soon as my foot hits the floor in the morning.

I will try to set up another meeting with Dr. Hu via phone as I live about 1000 miles away from her. If I rephrase my questions, I think that I will get the answers that I need. I have been seeing a therapist for depression, some of which was brought on my back pain. I asked him about Dr. Hu's comment that she could fix my back, but not my pain. He said that every conference that he goes to the caveat is not to say that the surgery will fix pain, because maybe it will not. I think that she did not want me to be disappointed if I still had pain after recovering from surgery.

Susan

golfnut
01-29-2013, 07:47 PM
Susan,
I was fearful before surgery that I would be possibly giving up my active, enjoyable life by having surgery, especially since I had little pain, however, that has not been the case. When asked about serious complications from the surgery, Dr. Lenke said it was less than one per cent. I've never heard that one out of 100 don't survive. I think that sounds extremely high. If you were younger and this indecisive, I might recommend that you wait, but you are in considerable pain and also reaching the age where I think most surgeons would prefer to do the surgery now. Dr. Lenke told me when I was 59 that I could wait a few years since I wasn't in pain, however, he suggested that I not wait too long because the correction would not as good and the recovery could be more difficult. I hope you can find peace with your decision for surgery. FYI: I played golf yesterday, took a bike ride, and also went on a long walk. We had unseasonably warm weather and I couldn't resist being outside. Think positively and be confident that you are making the right choice.

JenniferG
01-29-2013, 09:50 PM
Susan, my surgeon didn't give me any guarantees either. He went to great pains (mine!) telling me the list of risks and complications. He said he could only correct me a maximum 60% but I got better than that. None of the risks or complications (2 pages) actually happened. If you could spend a few days with me now, I'm sure it would soothe your nerves and help clear away your doubts.

Just today I gave my daughter a hand with her housework. The kids went back to school after Summer holidays. The place was a mess. I scrubbed walls, floors, bath, toilet, shower cubicle, windows, mirrors. I vacuumed inside, swept outside, folded laundry. Hours later, I came home with not so much as a twinge. And I'd already done a 5am 2.5km walk before going over there. Before surgery I couldn't have stood long enough to do most of those things. I hate blowing my own trumpet like this, but it's true and it's possible that you could have such an outcome.

Ok, it's true that not everyone is as lucky as I have been. But the vast majority of us is glad we had the surgery. Most of us are vastly better off than pre-op, it's hard to deny. There are still a few "works in progress" on this forum and I have not lost hope that those will have their problems resolved eventually.

naptown78
01-30-2013, 07:22 PM
Susan, my surgeon didn't give me any guarantees either. He went to great pains (mine!) telling me the list of risks and complications. He said he could only correct me a maximum 60% but I got better than that. None of the risks or complications (2 pages) actually happened. If you could spend a few days with me now, I'm sure it would soothe your nerves and help clear away your doubts.

Just today I gave my daughter a hand with her housework. The kids went back to school after Summer holidays. The place was a mess. I scrubbed walls, floors, bath, toilet, shower cubicle, windows, mirrors. I vacuumed inside, swept outside, folded laundry. Hours later, I came home with not so much as a twinge. And I'd already done a 5am 2.5km walk before going over there. Before surgery I couldn't have stood long enough to do most of those things. I hate blowing my own trumpet like this, but it's true and it's possible that you could have such an outcome.

Ok, it's true that not everyone is as lucky as I have been. But the vast majority of us is glad we had the surgery. Most of us are vastly better off than pre-op, it's hard to deny. There are still a few "works in progress" on this forum and I have not lost hope that those will have their problems resolved eventually.

Well I will toot my own horn too! I have had any number of people tell me that they can't believe that I have had the extensive back surgeries that I have had. If they didn't know, you can't tell by looking at me. I look like anyone else. I work a busy full time nursing job, which involves many hours on my feet.

I agree with Jennifer, if you could just spend a day with some of us you would feel so much better. We aren't robots or stiff. We look like anyone else and can do many of the things you want to do.

I have been in alot of pain which caused major disability in my life. There was a time only 3 years ago that I could barely walk across my living room. It was a miracle that I managed to work my job.

The flexibility I have lost is nothing compared to the life I have regained. So what that I can't turn my whole head to see behind me? I adjust and just turn my body. So what that cutting my toenails is a little more challenging? I can still do it, it just takes more time. So what that I can't run? I can walk for hours. And so what that I can't slouch? I have gotten more complements on my posture than ever!

A secondary benefit: this makes you tough. After this you can survive anything.

susancook
01-31-2013, 02:19 PM
You guys are awesome! I need to see someone with a fusion to sacrum doing things. That might reassure me. I went out walking with my husband and friends to a Wednesday art walk. I was in a lot of pain but smiled and drank wine. I came home and went straight to my heating pad. Today, I woke up and could hardly walk. Now, I have been on my heating pad for a while, and I feel better.

So, maybe more evidence that surgery should help me. I just wish that Dr. Hu could give me some chance that the surgery will decrease my pain. It would be such a bummer to be 66, be fused to sacrum and have the same pain. I really need to talk to her about what is the possible reduction in pain that I could anticipate. I know that there is no guarantee. I get that. I just want a little bit of hope.

Thanks so much to everyone that has responded. I will cut and paste all of your responses and save them to read. I also will copy some responses and paste them in my room at the hospital. In my professional life, I am decisive. This scoliosis surgery really has me baffled.

Again, my gratitude.
Susan

loves to skate
01-31-2013, 06:59 PM
Hi Susan,
Yes, I am back home from my cruise. It was a great experience and something I never would have been able to do prior to my surgery. Before surgery, I was in about the same shape as you are. I could barely walk to my mail box without pain and I had to sit in my kitchen to prepare a meal because I couldn't stand for more than 5 minutes. As you know, I still have pain, but not like before surgery. On our cruise, I had very little pain, did a lot of walking on different islands walking up and down hills. On board ship, I climbed three flights of stairs several times a day since our cabin was on the bottom floor where some of the crew stayed. I did Zumba a couple of days and one evening, I climbed the ratlines up to the crows nest about halfway up to the top of the fore mast. What an awesome sight it was and a great feeling of accomplishment. I am so blessed.
Susan, you need to start imagining the things you will be able to do once you have your surgery. There really is power in positive thinking. I hope this helps you some. The relaxation/healing CD that I listened to was Peggy Huddleston's. There also is a book, but I didn't have time to read it because I only learned of it one week before my surgery. If you can't find a copy, send me your address and I will send you my copy. I believe she has a website.
Take care, Sally

susancook
01-31-2013, 07:31 PM
Hi Susan,
Yes, I am back home from my cruise. It was a great experience and something I never would have been able to do prior to my surgery. Before surgery, I was in about the same shape as you are. I could barely walk to my mail box without pain and I had to sit in my kitchen to prepare a meal because I couldn't stand for more than 5 minutes. As you know, I still have pain, but not like before surgery. On our cruise, I had very little pain, did a lot of walking on different islands walking up and down hills. On board ship, I climbed three flights of stairs several times a day since our cabin was on the bottom floor where some of the crew stayed. I did Zumba a couple of days and one evening, I climbed the ratlines up to the crows nest about halfway up to the top of the fore mast. What an awesome sight it was and a great feeling of accomplishment. I am so blessed.
Susan, you need to start imagining the things you will be able to do once you have your surgery. There really is power in positive thinking. I hope this helps you some. The relaxation/healing CD that I listened to was Peggy Huddleston's. There also is a book, but I didn't have time to read it because I only learned of it one week before my surgery. If you can't find a copy, send me your address and I will send you my copy. I believe she has a website.
Take care, Sally

Sally, I am glad that you enjoyed your cruise. I enjoyed reading all that you did. Our vacation to Puerto Vallarta has been great for me as it is showing me what I can and cannot do. I am going on a horseback riding trip tomorrow to a waterfall. My husband is worried about me being in pain, but us scoliosis warriors are great at gritting Through it. It amazes me how I can be in severe pain and still put on a social smile. I will do the horse ride and then retreat to my heating pad. Too bad that the horse doesn't have a little plugin on his butt for my heating pad.

On the bright side, I swam 25 laps in the pool the last 2 days. The pool is super warm and I bought these really cool googles, NOT. Gives me a sense of accomplishment and some great thinking time. Thanks Gayle for your suggestion for swimming.

Adios, Susanna

golfnut
01-31-2013, 09:52 PM
Susan,
25 laps is great. You said you would like to see someone who has been fused to the sacrum. If you go to my signature, you can see a video of me playing golf 1 year after being fused T4-sacrum. I am now 2 years post op and have more flexibility than the video taken at 1 year, but it might give you some reassurance that it is not like being in a straight jacket.

susancook
02-08-2013, 03:36 PM
My surgery is next month. (Expletive deleted) I need some suggestions on decreasing anxiety. I think about the surgery almost every waking hour and sometimes find tears welling in my eyes. I worry about every detail in an effort to control the situation and cannot let go.

I trust my surgeon....why can't I let go and just trust her? That was the "plan", but it's not working..
HELP!
Susan

Irina
02-08-2013, 04:52 PM
My surgery is next month. (Expletive deleted) I need some suggestions on decreasing anxiety. I think about the surgery almost every waking hour and sometimes find tears welling in my eyes. I worry about every detail in an effort to control the situation and cannot let go.

I trust my surgeon....why can't I let go and just trust her? That was the "plan", but it's not working..
HELP!
Susan

Keep busy as much as you can. Not just physically, but mentally busy. If you're not at work, read something that will just suck you in - John Grisham, Michael Connelly. Their books are hard to put down. You'll be drawn into legal drama and your mind will take a brake from medical drama :-)

leahdragonfly
02-08-2013, 08:53 PM
My surgery is next month. (Expletive deleted) I need some suggestions on decreasing anxiety. I think about the surgery almost every waking hour and sometimes find tears welling in my eyes. I worry about every detail in an effort to control the situation and cannot let go. I trust my surgeon....why can't I let go and just trust her? That was the "plan", but it's not working..
HELP! Susan



XANAX!

Seriously though, some here have taken an anti-anxiety med in the weeks prior to surgery. Better living through pharmaceuticals. I had to take something to help me sleep the last weeks prior to surgery.

Also, daily physical exercise, as much as possible. Swimming is great! I am glad you are enjoying it.

I think many of us were simply terrified the last month before surgery. There is no easy cure, but as suggested, stay as busy as possible.

You can do this, Susan, and you're going to do great.

Fondly,

jane d
02-08-2013, 10:03 PM
Susan, prayer helped me the most. My own prayers and those of my friends and family. I am one who tends to worry and I like to be in control of everything but I found I had to let go and trust God as He is the only One in control of everything anyway. I learned this the hard way years ago as I took care of my parents who both developed primary brain rumors 3 years apart. He gave me strength during that trying time and I can say that I had not one sleepless night before my surgery. My recovery has gone exceedingly well except for the return of some sciatic pain as you know. I am a very active person and am doing about all now at 6 months that I did in the past but am feeling better than ever since I can stand forever without hurting, no longer feel like I'm collapsing inside, my rib is off of my pelvis, etc. I have been driving since 6 weeks after surgery(off all pain meds by then) and living a normal busy life. Xanax scares me a lot! I have a son who became addicted to it and had a very hard time getting off of it. I would avoid it at all costs. Staying busy is also helpful toward getting your mind off of the surgery. I think you will say after this surgery that it was not nearly as difficult as you had imagined. I will be praying for you.
Jane

JenniferG
02-08-2013, 10:47 PM
I'm with Gayle. Get help. There's a time and a place for anti-anxiety medication and that time is now, for you. It's nothing to be ashamed of. I got help too, because initially, I just couldn't comprehend that I would need such an invasive surgery. It definitely helped. With the anxiety eased, you may be able to see this surgery for what it is...something that's going to greatly improve the rest of your life.

susancook
02-08-2013, 11:25 PM
I am having surgery for degenerative disc disease, stenotic discs, and kyphosis. I just read something on spine-health that said that multi-level fusion does not help the pain for degenerative discs. So now, I am bummed. I am feeling pretty hopeless. So, after all of the surgery, I will still have most of the pain? Damn.

Susan

jane d
02-09-2013, 08:59 AM
Susan, I was 66 at the time of my surgery and had all of the same spine issues as you. All of the pain in my spine is now gone. My lumbar curve was 68 degrees and now is about 23 degrees. I had the issues of kyphosis, a lot of degeneration throughout my entire spine, arthritis, etc. a cage was put in at L4-L5. I have some sciatic pain but not enough to take pain meds for it. I had really bad pain in my lumbar area before surgery and now none. I stand straight and no longer need a walking pole to help me endure walking as before surgery. I would go through surgery again tomorrow knowing the good outcome I have had.
Jane

susancook
02-09-2013, 09:54 AM
Susan, I was 66 at the time of my surgery and had all of the same spine issues as you. All of the pain in my spine is now gone. My lumbar curve was 68 degrees and now is about 23 degrees. I had the issues of kyphosis, a lot of degeneration throughout my entire spine, arthritis, etc. a cage was put in at L4-L5. I have some sciatic pain but not enough to take pain meds for it. I had really bad pain in my lumbar area before surgery and now none. I stand straight and no longer need a walking pole to help me endure walking as before surgery. I would go through surgery again tomorrow knowing the good outcome I have had.
Jane

Thanks for your reassurance. I am glad that you are pain free and you have given me some hope. L4 must be a vulnerable vertebrae. I have maxed out on my steroid injections.

I wonder if my worry about surgery is normal or if I am over the top. I am thinking of flying down to San Francisco to talk with Dr. Hu.

I am looking for reassurance. I know that a guarantee of being pain free after surgery may be unrealistic. I will send you a pm. Susan

AngieM
02-09-2013, 11:03 AM
Susan, I just read through most of your thread to update myself regarding your concerns. You certainly are doing everything you can to allay your fears and doubts, but they keep returning. So I feel that I have to ask you, have you thought about getting more opinions from other top surgeons? I am sure you have one of the best, but they all vary in their technique. I was also told at one time that I would need two surgeries, posterior and anterior, and I wasn't sure I was up for that. So I waited. And I am quite a bit your senior, did not have back pain, and I'm not sure what amount of degenerative disc disease. In any case, I couldn't be more grateful to this forum for sharing their experiences. My surgery was in September and from the moment I woke up afterward, I have loved my new, strong back... You have probably heard this before, if you are uncertain, see more of the most experienced doctors until you are satisfied.
AngieM

JenniferG
02-09-2013, 04:46 PM
I think Angie's nailed it. Is Dr. Hu the only surgeon you've seen? Perhaps visit one more and specifically ask the questions about the DDD and your chances of having that pain relieved. I have been to Spine Health and seen a lot of misinformation there. I think your anxiety is such that you need to do this for yourself. Then, if your anxiety continues, anti-anxiety medication will help you.

Susie*Bee
02-09-2013, 04:56 PM
I am about 98%(?) sure that my information said that I had DDD also, but I have two houses and my info is at the other one... I have occasional aches and pains every once in awhile when I overdo, but who doesn't? I don't have anything that I need any pain meds for. I think the main thing a surgeon wants to explain and make perfectly clear prior to surgery is that the surgery isn't necessarily a panacea and isn't a guarantee to relieve you of pain. We all wish it were, though... How much easier these decisions would be! I'm so sorry you are going through so much turmoil-- but over the years I've seen some others struggle and struggle also.

Confusedmom
02-09-2013, 10:32 PM
Just a note on anxiety meds. Don't use an SSRI like Prozac or Lexapro. They have blood-thinning properties, so could contribute to blood loss during surgery. Dr. Lenke encourages his patients to get off of them before surgery. My understanding is that Valium is okay. Your surgeon or primary care doc should be able to write a script.

Also, I agree with getting one more opinion. Someone else just posted that Dr. Hey will do long-distance consults, if I remember correctly. Might just ease your mind a bit.

Best,
Evelyn

susancook
02-11-2013, 01:03 AM
Thanks everyone for your support. Yes, I have seen another first notch scoliosis/deformity surgeon who said some of the same things. Some info was different. Susan

Irina
02-12-2013, 04:32 PM
Susan,

I think about you often - may be you need to meet with Dr. Hu as soon as possible (not the day before your surgery) AND get a third opinion from someone else. I think that some of your fears might be coming from different opinions on one-stage vs. two-stage surgery.

I have three opinions - I just told myself that I won't make any decision until I see at least three doctors. All three said that I need a two-stage anterior-posterior surgery. If only one of them said he'll do posterior only, be assured that I'd be going for a forth, fifth and so forth opinion. So, if you go for a third opinion and hear two-stage, it will be 2 vs. 1 in favor of a two-stage procedure.

When I met with Dr. Hu for the first time, even thought I liked her a lot, I told her that I am not ready to book the date yet. We scheduled a follow-up appointment three months after the intial one. During these three months I did my best driving myself and people around me crazy, but by the end of this period I went to Dr. Hu's appointment calm and confident in making my decision. May be if you see her one more time and discuss pain issue afther the surgery, you'd feel better.

susancook
03-04-2013, 06:15 PM
I have my surgery 2 weeks from tomorrow in San Francisco w/ Dr. Serena Hu. YIKES! Since I last wrote, I have thought a lot about my saddness and feelings of lack of control about the surgery and have had some hypnotherapy [live] and have listened to tapes. I am in a better place now, and feel that I am being proactive about my degenerating back and that this is the right decision for me at this time. I have stopped reading the thread, "I wish that I did not have surgery". It was making me crazy.

I have talked w/ Irina a few times and have emailed her. She has her surgery tomorrow and I will post what her husband communicates. I will also visit her next Sunday in the hospital. She seems to be in a good place now.

I am feeling more confident that having the surgery at this time is my CHOICE and that I have stacked the deck in favor of success. I have chosen a surgeon that feels competent and caring and I have a very supportive family. The worry about long term neurological damage and long term pain still worries me some, but I am trying to let go of the worry and trust in Dr. Hu's competency and God. I have decided that anyone that goes into this surgery and says that he/she is 100% confident is lying, but that you need at least a 95% confidence. I am closer to 98%. The enormity of the 2 day surgery is impressive, but not overwhelming. I am not afraid of short term post-operative pain, for at least 6 months, ....I will deal with it.

Suggestions for the next 2 weeks would be appreciated. I leave for SF on Wednesday with a short vacation in Southern Oregon on the way. I have my mattress topper, tons of constipation stuff, my favorite cologne, an appointment for a pedicure, clean undies, and music on the ipod. I even bought one of those hygiene extension sticks, which I think is very funny!!!!! I hired a cleaning lady who is freshening the house today....hahahahaha, like it needs so much more than just freshening since I have neglected it since I have been in so much pain. She no doubt sees it as job security. My pain management MD in Portland just gave me some Nucynta which takes the edge off the pain and I can at least pack and not be on the couch all day. She suggested another procedure on my back, which I declined. Even she says that it is time for surgery!

I will reread all of the blogs that mention getting ready for surgery and Linda's info on line. Please spare me any bad experiences at this time as it is a challenge to keep it all together.

Thanks, Susan

loves to skate
03-04-2013, 06:52 PM
Hi Susan,
I am so glad to hear that you are in a better place. That 100% comes the day of surgery when you are on the gurney just before the give you something to knock you out. God will be right there with you every step of the way. You will have many people praying for you.
Sally

JenniferG
03-04-2013, 07:20 PM
I'm glad to hear you're feeling better about the surgery Susan. Also, I think the little holiday along the way to SF will help. Are you going to take before and after photos of your back? I wasn't going to, but got talked into it and am so glad I did. I think I only viewed the surgery as a way to ease the pain but the cosmetic improvements are really gratifying.

Thinking of Irina tomorrow and know we'll be behind you both, all the way.

golfnut
03-04-2013, 07:51 PM
Susan,
I am glad to read that you are feeling better about having surgery. No one takes the decision for surgery lightly, but we weigh the pros and cons and make the decision that we think is right for us.
I don't know if you have your hair colored or not, but if so, I would recommend having it done right before your surgery. I also had a throw away razor taped to a long plastic handle for shaving my legs. I used it for many months. I bought slip on Sketcher tennis shoes that I could put on and take off independently with a long shoe horn.
Best of luck! The waiting was the most difficult time for me.

susancook
03-04-2013, 10:27 PM
Hi Susan,
I am so glad to hear that you are in a better place. That 100% comes the day of surgery when you are on the gurney just before the give you something to knock you out. God will be right there with you every step of the way. You will have many people praying for you.
Sally

I will need drugs to get to 100%....but I see your point.
Susan

susancook
03-04-2013, 10:30 PM
Susan,
I am glad to read that you are feeling better about having surgery. No one takes the decision for surgery lightly, but we weigh the pros and cons and make the decision that we think is right for us.
I don't know if you have your hair colored or not, but if so, I would recommend having it done right before your surgery. I also had a throw away razor taped to a long plastic handle for shaving my legs. I used it for many months. I bought slip on Sketcher tennis shoes that I could put on and take off independently with a long shoe horn.
Best of luck! The waiting was the most difficult time for me.

Thanks. No hair color, but do have leg shaving needs. I will try to hookup my razor....or just go Northwest Natural....just kidding.
I have lots of slipon shoes, but will consider a pair of Sketchers.
Susan

Confusedmom
03-05-2013, 10:43 PM
Don't know if you meant the pedi is before surgery, but you might wanna postpone that. They will want to see your unpolished toes as an indicator of circulation. At least that was the policy at Barnes-Jewish.

My best recovery tools, though an investment, I admit, we're: iPhone, memory foam mattress and risers for the clothes washer/dryer. If you have the inclination to get any of these, shopping might be a good distraction. Also movies, exercise (if possible) and easy-read books. Think Hunger Games or Fifty Shades. These are good pre- and post-op.

Oh, if you do go shopping, pick up a few tank tops or loose fitting bras. The regular ones are uncomfortable for a while. I'm assuming you've got grabbers and the sock tool. Also long-handled shoe horn and elastic shoe laces for tennis shoes.

Don't be afraid to post for reassurance. I posted a freak-out email the night before surgery. The responses really helped calm me down.

Best wishes,
Evelyn

susancook
03-06-2013, 02:30 AM
Don't know if you meant the pedi is before surgery, but you might wanna postpone that. They will want to see your unpolished toes as an indicator of circulation. At least that was the policy at Barnes-Jewish.

My best recovery tools, though an investment, I admit, we're: iPhone, memory foam mattress and risers for the clothes washer/dryer. If you have the inclination to get any of these, shopping might be a good distraction. Also movies, exercise (if possible) and easy-read books. Think Hunger Games or Fifty Shades. These are good pre- and post-op.

Oh, if you do go shopping, pick up a few tank tops or loose fitting bras. The regular ones are uncomfortable for a while. I'm assuming you've got grabbers and the sock tool. Also long-handled shoe horn and elastic shoe laces for tennis shoes.

Don't be afraid to post for reassurance. I posted a freak-out email the night before surgery. The responses really helped calm me down.

Best wishes,
Evelyn

Thanks, Evelyn. I have most of those items. I did purchase some shirts for under my brace. I am surprised that I am so relaxed about the surgery as I was a basket case all weekend. Maybe I am in denial.
Susan

JenniferG
03-06-2013, 02:38 AM
Many of us calm right down prior to surgery, sort of "let it all go" type of thing. All I felt in the last few days is, "let's get this show on the road! I've waited long enough!"

susancook
03-06-2013, 02:50 AM
Many of us calm right down prior to surgery, sort of "let it all go" type of thing. All I felt in the last few days is, "let's get this show on the road! I've waited long enough!"

I have researched everything obsessively. Irina said, "I just want to get this over". I know what she was talking about. I just want to DO IT. I trust my surgeon and decided that I was not going to be the 1/100 little old ladies that dies from the surgery. Let go of that one.

Thanks for your encouragement. Susan

mabeckoff
03-06-2013, 09:18 AM
You will be in my prayers

golfnut
03-06-2013, 08:56 PM
I started looking to the future by thinking positive thoughts like "One week from now, I'll have a straight back and no rib hump." or "One month from now, I will be well on my way with recovery." I also had plenty of books to read and signed up for Netflix. For the first time in my life, I didn't feel guilty about taking a nap in the middle of the day or watching a movie while resting.

susancook
03-08-2013, 12:57 AM
Irina's surgery went well. If it had not, I would have difficulty looking forward to surgery.
I am on vacation with family and friends. We are going up to Crater Lake tomorrow which should be covered in snow. I will work on getting in some zen zone. Susan

leahdragonfly
03-08-2013, 09:55 AM
Hi Susan,

you sound good! Day by day you are getting there.

I got my legs waxed a week before surgery since that lasts longer than shaving. Believe me, I did not care one little bit about how my hairy legs looked for many weeks after surgery. I don't think you will, either! I also treated myself to a "back facial" at a nice spa a week before surgery. I convinced myself it might reduce the bacterial count on my skin. It felt nice at least, and I did not get an infection after surgery!

Don't forget to visit the dentist and have your teeth cleaned before surgery. I made sure and do it several weeks before so that any bacteria released into my blood from the cleaning would be long gone by surgery day. You definitely don't want to have to lay in the dentist's chair for awhile after surgery!

We're thinking of you as your day gets close.

tae_tap
03-08-2013, 10:50 AM
Susan,
Keep the faith and positive thinking going. I am praying for you as each day draws closer.

Tamena

susancook
03-08-2013, 09:41 PM
Hi Susan,

you sound good! Day by day you are getting there.

I got my legs waxed a week before surgery since that lasts longer than shaving. Believe me, I did not care one little bit about how my hairy legs looked for many weeks after surgery. I don't think you will, either! I also treated myself to a "back facial" at a nice spa a week before surgery. I convinced myself it might reduce the bacterial count on my skin. It felt nice at least, and I did not get an infection after surgery!

Don't forget to visit the dentist and have your teeth cleaned before surgery. I made sure and do it several weeks before so that any bacteria released into my blood from the cleaning would be long gone by surgery day. You definitely don't want to have to lay in the dentist's chair for awhile after surgery!

We're thinking of you as your day gets close.

You and I are on the same wave length. I had my teeth cleaned 2 weeks ago. I will figure out the wax thing. I will be in Oakland for a week before my surgery, so will check out waxing. One thing that is an advantage, is that being 15 years into menopause, hair growth is slow and sparse.

I didn't make it to the dermatologist, but he/she can wait. My prev MD moved, so I need to start all over again. I have a pain management MD lined up at OHSU for after I return to PDX. We also bought. A condo in PDX, so that I can do my PT at OHSU.

I think that I will buy some Hebiclens and have my husband wash my back for a few days before surgery. Infection worries me.

I will call you next week for your suggestions for last minute confidence. I owe you an explanation about changing doctors.

Surgery is in less than 2 weeks. My right leg and right butt hurt so much from stenototic L4, that it is a reminder that I do need surgery. My Left butt, sciatica has started to hurt. When I look in the mirror, I markedly lean to the right, thus my coronal balance is 11! If I don't have surgery, maybe I would fall over! My left hip and the Meralgia Paresthetica has started to hurt again, so maybe I need another steroid inj in the femoral nerve area.

I have decided that I want to see the OR. To me, the more machinery and people, the more confidence it would give me. I would actually like to walk to the OR (day one, not day 2). I guess that I don't need to worry about getting to surgery on time on the second day, huh? We will need to go to UCSF quite early on Tuesday as I need to be there at 0600 and my son lives in Oakland and we need to go through rush hour traffic, actually it is probably early for rush hour traffic.

I have an appointment with Dr. Hu the day before surgery for last minute questions and I want my husband to meet her. She is amazingly calming and relaxed.

One thing that frustrates me is that she is unsure that my sciatic pain will be better after surgery. That would be a real bummer, to put it mildly. I am trying to relax and just "go with it" and whatever happens, happens, but it is not easy. I will ask her about the pathophysiology of that. My PT thought that maybe the pain pathways had been too long established. Wish that someone had told me about that 6 months ago....but then again, I was still under the umbrella of the steroid injection and was pain free.

Susan

susancook
03-08-2013, 09:51 PM
Thank you to everyone for your good wishes. I am totally amazed that I am so relaxed now, as I was even thinking of canceling a month ago. I do not think that I would have cancelled as once I commit to something, I don't back out. I feel that I am proactively choosing surgery as the alternative is a progressive decline where surgery would be more difficult and have more risk and less correction. A friend has an aunt who waited until she was in severe pain and 80, and no one would do surgery for her.

I welcome all prayers and good thoughts on the 19th and 22nd. Susan

Doodles
03-11-2013, 10:52 PM
Susan--
So glad you have reached that relaxed stage. I felt that too. We will all be thinking of you and praying for a great outcome! Janet