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ash
10-08-2007, 05:58 PM
I'm new to the forum, although I've been reading each and every post for the last several months. I'm 41 and I'm contemplating surgery. I'm scared out of my mind, but I'm also scared about doing nothing. My thoracic curve is progressing - now about 70 degrees. I'm having lower back pain every day and many days of pain in upper back as well. You brave souls out there are an inspiration to me. I just don't want to be worse off than I am now. I know this is a common scenario. My pain now is not unbearable, but I'm afraid if I wait too long, I won't be a good candidate for surgery, and I will not have as good of a correction. Any thoughts, anyone? I appreciate any words of wisdom!

Singer
10-08-2007, 06:15 PM
That's a pretty big thoracic curve. If it's progressing and if you are advised by a couple of sciolosis specialists to have the surgery, I'd say the younger the better.

Suzy
10-08-2007, 10:36 PM
Hi Ash,

Welcome. I wonder what is it that scares you out of your mind in regards to this surgery. I believe for most it is the fear of the unknown. Here on this forum you will find out answers from those who had the same fears and faced them head on. We are here to help you with all the honesty you can handle! Sometimes too much when it comes to personal hygiene! LOL!

When I was told surgery was in my future my first emotion was fear and disbelief. I spent hours and hours on this web site. I had all my questions answered and was able to ask my Dr. pertinent questions as my surgery approached. You will find others with a similar curve that can let you know how their recoveries went. We are all different yet we have found many similarities in our recoveries. We will help you through your journey.

I have my life back at over 1 1/2 years post op. I was getting so bad I was looking forward to my surgery as it approached!

Best wishes, Suzy


2/22/06 49* lumbar curve now 8* T10-L4 @Age 43

nkittelson
10-09-2007, 01:14 AM
i suggest get it down asap. if you curve has been progressing it wont stop more than likely. its better to get it now then when its too late..

3 months post op -- and doing ood

geo
10-09-2007, 11:39 AM
Hello there, glad you have joined - this was the best place for me when I started to finally deal with my situation.

I'll second what Chris says, and recommend that you go to see a couple of surgeons who do this surgery (I looked for those on the scoliosis research society list). That would probably be the best first step, if you haven't done so already.

I had a 55 degree thoracic curve at the time of surgery, and knew it was only going to get worse, since that is all it had been doing for years. Like you, I was having a lot of pain in my lower back, probably because my lumbar curve was getting larger to compensate for my growing thoracic curve. It got to where things like vacuuming would knock me down, sometimes literally to my knees.

Science says that your curve will progress. I think that with the opinions of multiple skilled surgeons, you can come to a decision that's right for you. I wish you the best - this is the hard part!!

crepehanger
10-09-2007, 03:11 PM
You are in the right place! you are right about this being a common scenario among us, BUT, our problems, decisions, pain and anxiety levels are not understood by most of the people we deal with. I cannot tell you how valuable this forum has become to me, because the members are the only people in my life who truly comprehend what we go through. So, welcome to the forum! I must agree with you about the age thing. The younger members bounce back faster than we older folks do, but I must say that I am glad I was able to wait until 2007 to take advantage of all of the current research. Those of us past our twenties just know we have to be a little more patient with our recovery. But we can still get great corrections and results. Good Luck with your research and decisions. Lisa

nzgirl
10-09-2007, 06:27 PM
Hi Ash,
I think you're in that spot where all of us have been at some point, where there is a decision to be made about surgery. It's pretty frightening to face the prospect of surgery, but for most of us who had pre-op pain we found a significant reduction in this post op. Your curve is about where mine was when I had surgery too. The advice I was given about progression is that it is best to do it prior to the spine becoming 'unbalanced' as in your neck and lumbar spine are out of alignment.
Get more than one opinion if you can, and talk to some good physical therapists who know about scoliosis and can prepare you for surgery, or help you manage your pain and strengthen your back if you choose not to go that way.
You'll find lots of support on here, welcome to the exclusive club of people with curves ;)

ash
10-09-2007, 10:24 PM
Thanks so much for all your replies to my first post. I appreciate all the advice. I'm really touched by how many of you responded. It means so much to speak to people who live with scoliosis. I will see Dr. Pashman (in L.A.) on November 2nd - see where my curve is... :)

Shari
10-10-2007, 02:54 AM
Hi Ash,

I want to welcome you also!!! We all seem to fear that our first post on here will not be responded to, but that is never the case. I know I was scared to death, not only about the surgery, but to put my feelings out there to a bunch of strangers with the added fear of not being accepted.

That will never be the case here!!! None of us can answer every question, but there always seems to be someone that can, or someone that can point you in the right direction. That's what makes this a great place to be!!! We care, and that's all that counts.

You will find people here that will search for the answers just to help you. It's a great place to express any fears, concerns or just vent without judgement.

I still feel lucky to have found this forum,
Shari

CHRIS WBS
10-10-2007, 01:37 PM
[QUOTE=Suzy]I wonder what is it that scares you out of your mind in regards to this surgery.

Duh??? How Ďbout death, paralysis, pain, massive blood loss, nerve damage, chronic pain, disability, repeated surgeries, and more, all of which have been reported here.

Chris

ash
10-10-2007, 10:16 PM
Yes Chris, those are all the things that turn my thoughts from "I'm ready to go through this surgery," to ..."Am I crazy!" I'm so afraid I'll be worse off than I am right now - and I'm not too bad off right now. If I were in horrible pain, surgery would be an easy decision - but my pain isn't that bad most days. It would be easy if someone would just tell me that I HAVE to have the surgery - but I don't think that's going to happen. I have a great life and I don't want to ruin the rest of it. On the other hand, if I don't have surgery, my future may be ruined by the progression of the curve. Do I sound like a Psycho?????? I'm so confused. I said before that my curve was 70 degrees, actually I think it was more like 60 the last time I saw a Dr. I guess I'll have to wait for my appointment.
Ash

Singer
10-11-2007, 07:16 AM
Ash, your thoughts are exactly the ones I had before surgery. I stewed about whether or not to have surgery for a year. It's a very tough decision to make and you're 100 percent normal. Take a deep breath, live your life, and try not to think about it too much before your appointment in November. You will have much more clarity AFTER you talk to a specialist.

nathan
10-11-2007, 08:18 AM
HI ASH

i am a forty had my first surgery in march of 07 i was also scared out of my
mind but you can't let fear stop you from doin the right thing i think the longer you wait the more the curves will progress.
i had my surgery in march of 07 that about 7 month ago i want lie to you
some day are good and some bad but i still don't regret that i had the surgery but i do regret that i did not do it sooner.



nathan

CHRIS WBS
10-11-2007, 10:22 AM
Ash,

I know exactly where youíre coming from. Iíve been hanging around this forum for two years now. Iím 58 with a 75į lumbar curve, but unlike most people here, I did not experience any symptoms whatsoever (other than height loss) until two years ago. Now pain is intermittent. Last week it was so bad that I could barely sit which prompted me to call one of the surgeons I saw in Chicago last year, and I have an appointment next week. This week I feel great. Last night I even went for a brisk 45-minute walk in the cool autumn air and I felt so good. Now Iím back to asking myself ďAm I crazy to consider this?Ē Maybe follow-up x-rays that show further progression will be the deciding factor for me. In addition, next Saturday Iím going to the second meeting of the Chicago Chapter scoliosis support group. The woman hosting had two surgeries earlier this year at age 61. Although sheís relieved to have this all behind her, sheís now experiencing a problem with leaning to the left. Iím looking forward to seeing her again as well as hearing from others about their experiences.

Chris

vndy
10-11-2007, 11:46 AM
Ash,

Talk to the people who are supportive. It really helped me to hear my boyfriend and my mother and stepmother tell me they would have made the same decision, after I made the decision to have surgery on my own. It's a big deal, no one denies that, but just committing to doing something proactive is a really good feeling. That said, I agree that you have to just live your life and be happy until you see the specialist and are in a position to make a decision.

Good luck.

CStadler
10-11-2007, 05:20 PM
I am only 3 weeks post op and I too was scared out of my mind. This forum and the wonderful people on it helped me realize it would be ok. I went into surgery relaxed and calm and I think that is important. My fusion is from T8 to the sacrum.

I am so glad already that I had this done. I feel like I was in good physical condition and that helps tremendously and each day I feel stronger and stronger.

I know I could not have continued enjoying life the way I wanted to had I not had the surgery so I looked at it like what is a year out of my life when I have so many good years ahead to look forward to pain free.

The surgery wasn't nearly as bad as I had made in seem in my mind. Yes there is pain but the nurses are very good at making sure your pain is controlled.

In the end it is your decision. This is just one more persons sucess and happy ending.

Good luck.
Carol

Shari
10-14-2007, 02:43 AM
I think that no matter what age we are, or what shape our backs are in, we all have the same kinds of fears and concerns.

Even though we all have scolisosis, it is amazing to me how we tend to differ in our degrees and symptoms. We also all have different mind sets, and we really have no right to judge one another for the decisions we make in our lives concerning how we choose to deal with it.

It is hard to disagree with someone who doesn't have the chronic pain, when they choose to not have the surgery. But how can you not take the chance to make your life better when you are in constant pain???

Just a question?,
Shari

Susie*Bee
10-22-2007, 06:33 PM
Ash-- I was in your spot less than a year ago and opted for surgery last May. I didn't want to wait until it was too late. One constant reminder to me of the need to go ahead was a dear friend who had surgery (without instrumentation) as a child--probably about 50 years ago, spent a year in a cast, but has had her curve progress dramatically to where it is about 100*. They have made so many strides in scoliosis surgery since that time. She is so crippled now and has been to see many doctors, but she is too damaged and too fragile to have any revision surgery. I didn't want that to happen to me because I put off surgery too long. I, too, have many questions about whether or not I'll be "well" at some point, when I recover from the surgery. It could be that I won't ever be 100%, but at least I shouldn't get more crooked. The only thing my friend can do now for her severe chronic pain is to have a morphine pump surgically implanted-- and she doesn't want to do that and lose control. I guess you just have to weigh the possibilities and pray hard. Good luck with your decision!

Suzy
10-23-2007, 10:40 AM
Well YET AGAIN you, CHRIS WBS, put a negative spin on a question.

"I wonder what is is that scares you out of your mind in reguard to this surgery"
"Here on this forum you will find out answers from those who had the same fears and faced them head on."

I thought if Ash addressed SPECIFIC fears we could address them. Next time read the WHOLE reply and not just pick out the parts you can address negative and rudely.

ash
10-25-2007, 09:06 PM
Thank you for all your comments, everyone. I'm trying to stay positive about this whole thing - I'm trying not to think about people I know who have been over-medicated in the hospital, and contracted a staff infection. I don't want to put blinders on, but it helps me to hear all the positive stories. I've heard good things about Dr. Pashman and about Cedars Sinai Hospital which makes me feel better. This is so difficult. I'm so afraid I'm going to make the wrong decision and regret it for the rest of my life. I do have pain daily and I have had tingling in my legs, feet and hands for about 5 years - these things make me think it's time to do something. Ugh!

Shari
10-26-2007, 12:33 AM
Ash,

No matter what decision you make can only be made by you!!! Naturally your family and loved ones will support you, and so will we!!!

It's never an easy decision to make for any of us, and you will find people here that are on opposite sides of this debate, and that's allright, because this is really a support group.

Do what you feel in your heart is the right thing to do. That's what matters most. We'll be here either way.

You know your body best, as we all do, and for me constant pain made me make the decision to have surgery. But everyone is different.

Just know you're not alone,
Shari

ash
10-26-2007, 07:49 AM
Thanks, Shari!
Ash

CHRIS WBS
10-26-2007, 10:09 AM
Hi Ash,

I donít know if you saw my recent post where I report a seven degree progression in one year. Iíve been in denial for too long thinking that this thing will stabilize on its own and Iíll live out the rest of my life with maybe a few aches and pains here and there. NOT! I would not have believed it if I hadnít seen it with my own two eyes. My scoliosis is progressing rapidly and causing dangerous changes to my vertebrae. Left untreated, in ten years I will be terribly deformed and probably in a wheelchair, if Iím even able to sit. I once again looked at a slide presentation of Dr. Boachieís that shows an elderly woman with a severe lumbar curve who is nothing but skin and bones because her abdominal organs have become so crowded, food canít pass through her intestines. I donít want that to happen to me if I can prevent it. Ask yourself this, ďIf you were diagnosed with cancer, would you deny yourself treatment for fear that you may end up regretting it?Ē I know how scared you are; so am I, but Iíve decided to let go and let God. As a matter of fact, a couple of weeks ago in church one Sunday I prayed and asked God to push me to do whatever it is I have to do. He sent me pain that week which led me to contact the surgeon so I could see for myself that I cannot postpone treatment much longer. I truly believe that.

Chris

ash
10-28-2007, 11:50 PM
Thanks Chris.
It's funny that you prayed for a sign - I did the same thing and had severe pain for several days. Whether it was a sign, or somehow psychologically self-induced, I'm feeling better about going through with surgery. I've come to the conclusion that whatever you do in life there will be people who tell you not to do things, or that you can't do something for one reason or another. I think surgery is the right choice for me. I don't want to turn out like Susie*Bee's friend. God willing I'm looking forward to living a long life and I think it's best to fix this problem now, rather than wait until it's too late.

Everyone has been so helpful with their comments. Thanks!

By the way, anyone out there have tingling in hands and legs? And Lynne, if you're out there, do you mind if I ask what kind of intestinal problems you were having. I'm having problems in that department as well.....

Thanks!

Susie*Bee
10-29-2007, 07:50 AM
Ash-- it sounds like you've gotten a lot of good advice and encouragement. I think you'll find that when you make the decision about surgery for sure, you'll have a real sense of relief. With that decision, one tremendous hurdle is behind you. Then you can change your focus to preparing for the surgery and recovery. At least that's how it was for me. My faith that the Lord would see me through it all, regardless of how it all went, was my anchor--and whatever scenario my imagination would take with the outcome, that faith always made it turn out alright. It gives you a very real sense of peace going into the surgery. As it was, my surgery went fine and he was able to correct me more than he thought he would. It is a whomping surgery and recovery takes awhile, especially for older people like me. I don't know how old you are--but younger adults and teens bounce back much quicker. Regardless, I am sure I won't ever regret the surgery. And again, every time I see my friend, the sight of her re-confirms how right my decision was for me. Best wishes.

ash
10-29-2007, 03:33 PM
Thank you, Susie*Bee.
I'm 42 years old. Diagnosed at 12 with 28* curve. Braced for a year or so - then ignored until now. I'm glad you're doing well! I'm trying to let go of the fear and focus on the surgery and recovery.
Ashley

CHRIS WBS
11-14-2007, 09:38 AM
Ashley,

Thought you in particular might find the following of interest since you are having surgery by Dr. Pashman who is obviously one of the best. In the hands of a very talented and skillful surgeon, thereís always hope even with the most challenging cases.
http://www.espine.com/scoliosis-surgery-newspaper.htm

Chris

DebbieM
11-14-2007, 01:49 PM
Hi Ash

Dr. Pashman did my surgery 1 month ago. I love that man. I had 3 opinions before i had met with him. I feel that he is the BEST there is for this kind of surgery. There was an incredible article in the RJ newspaper in Las Vegas about a chef here in LV that had surgery performed by him, and he was in bad shape. One of his curves was 70+ degrees. He had 3 surgeries because he had the old fashion harrington rods in his back that needed to be removed. I believe he is truly the best!!!

Best of luck to you