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

[golfnut]

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]

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]

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]

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]

At peace and made a decision

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]

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]

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]

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]

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]

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]

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]

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]

SURGERY DATE SET......what have I done?

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]

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]

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!