Spinal Fusion AGAIN??!!

[Amanda21_FL]

Hello everybody

My name is Amanda. I am twenty-one and had a spinal fusion in which they attached two medal rods to my spine when I was 15 due to my 56 degree angle. Everything was going pretty well after surgery for the first few months until slowly, but surely I started having back pain as I did before. Everythings seems to be getting worse to me. I went to the doctor when I was 16 and they said that the curve I had was normal after surgery. It didn't feel normal that's for sure. Anways, so there are a few things that are bothering me now to an extent that I can't handle it anymore. I was just wondering if from anyone else's experiences before their second surgery if they had the same problems?! I am afraid of going to the doctor again although I know I have to because I HATE Hospitals and doctors especially after the first surgery!

Whenever I go out to eat I have to sit in a booth as it hurts my back to sit up against a regular chair. When I sleep I have to sleep while holding something against my chest because my ribs stick out as weird as that sounds, but it's very uncomfortable. My right shoulder blade sticks out a LOT more than the left that it's noticable to a stranger. Also one of my shoulders is higher than the other. My mother and I can also see the curve in my spine as we did before my surgery which really scares me. I know I am rambling and I am going to have to go to the doctor anyway. But it would be great to hear from someone who has been there before and knows how I feel and what I am going thru. I really wish I knew about this site before I had my first surgery.

Thank you to everyone who replies to this message. I appreciate any input. Even if it's sharing your own experiences that are totally different from mine. Thanks to everyone for their time.

Take Care,
Amanda

[kristen]

hi amanda,
My name is Kristen. I totally understand what you are going through I just had my 4th operation in the beginning of September and I wish I knew about this site before my first surgery. My first one was to correct my 70 and 60 degree curves in 1996. The second was in 1998 to remove the hardware because of pain and I was really uncomfortable all the time, they thought my body was rejecting the rods. Come to find out in 2001 my spine was cracking around the center, and my curves were returning, so I had another operation to correct them. This time they had to put the rods higher to get better support. All of this sounded great at the time, I thought I finnally was going to get some relief of all this pain. But around june of this year I returned to the doctors because the pain never went away, only to find out one of the new rods they put in had imbedded itself in the muscles around the top of my spine. So theres my fourth surgery to have the tops of my rods cut off. I know this probably isn't very reassuring to you. but I am fully aware of the pain you are going through, And how it feels to be noticably crooked to complete strangers. I hope you don't fell alone in all of this, because you're not. feel free to write with questions or comments.
kristen

[Amanda21_FL]

Hey Kristen

Thanks for posting with your story. I'm sorry to hear that you had to go through so much with your scoliosis! I only pray that everything will get better for you.

It is great to know that there are other people out there who are going through this with me. I hope that from reading everyones replies that I can be more knowledgeable when I see the doctor and be more aware of whats going on. I think that this might help prevent the mistakes like the ones that you experienced. Thanks again for sharing your story with me.

I actually had a question that I was going to ask you, but it won't come to mind right now!! I'll be sure to write again once I do think of it

Again I thank you for your post and hope that you become stronger as time goes by.

Take Care,
Amanda

[scarlett03]

hi amanda!
i know just how you feel. my first surgery was when i was about 13, for a 68% curve. i was fused and rods inserted. in 1996, i was 17, and had another surgery to remove the rods because of the same pain you talk about....in school, the chairs were so uncomfortable because my rods were palpable from my skin. the doctors even said they could feel the rods with their hands. so we had them removed. in 1999 i went back because i know my own back, and knew it was curving worse, and didnt understand why. i thought the fusion should have prevented progression. but they blew me off, saying a 5-10 % curve progression was normal. well, this year, i went again, to find out my curve is back to over 60%, and apparently the first fusion didn't take well. i seem to think of this as very odd and unlikely, but, fortunetly, after finding this site, i see that lots of people go through this. so i dont feel as bad. next month i go in again to schedule my next surgery, to re-fuse my spine again, this time a major surgery, through my back and chest.
so, you are right to be concerned. i'm so frustrated that my curve is so obvious and disgusting (TO ME). i'm married, but still feel very insecure about that, and feel sorry for my hubby, who has to live with it. i am hoping this next surgery not only stops my progression, but is also able to correct it alot. i wear my hair long, to cover the curve (which makes my right shoulder blade stick out so much, just like yours). i look forward to the day where i can feel free to chop my hair short without worrying about my back. and able to be able to wear my hair up when i get dressed up for our military balls and such.
hope you feel better knowing you are not alone.
if you need anything, all of use are willing and able to talk!
~gail

[Amanda21_FL]

Hi Gail

Thanks for posting and sharing your story with me. I'm so sorry to hear about everything that you are going through. I know exactly how you feel about being so self concious. I've always been that way about it. And like you I know my own back and can tell that something is wrong even if the doctors say I'm crazy

I thought that I was alone for a while until I found this website. When I read other peoples storys (like yours) and can say "oh my gosh, I feel like that too" it in a way makes me feel a little bit better about it to know that I'm not alone in finding a way for it to be corrected.

I pray that your next surgery is succesful and you can finally cut your hair short and feel comfortable and beautiful. I'm sure that your hubby thinks your beautiful no matter what your back looks like

Take Care,
Amanda

[Amanda21_FL]

Update

Hello everybody

Yesterday and Today I've been on the phone trying to make an appointment with a spine specialist. It's very hard to find one in my area. I've actually found one that I'm waiting to call me back, but it's almost three hours away. But I would rather drive the distance to speak with someone who knows what they are talking about than to keep wasting my time in my hometown.

This past week I have been to the ER twice. The first time was due to some really bad pain I had been having for a week, but me and hospitals don't mix well! My mother had to force me to go. Come to find out the doctors said that I had just pulled a muscle and sent me home with some pain pills. The second time the pain was in a different area, but was so bad that I could barely move or even sit down or lay down! I don't know where it came from or why, but I knew my rods may have something to do with it. The doctors this time said that when I came to the ER the first time the doctors were wrong and I didn't pull a muscle, but they think that my rod may possibly be pinching a nerve. They said the same thing about this visit. Now mind you they weren't sure and told me I needed to go to my doctor and get a referral to see a spine specialist. And of course once again they sent me home with more pain pills.

Yesterday I went to my doctor who is clueless as to what could possibly be wrong and sent me home with a "referral" (she wrote down on a piece of paper a prescription would normally be on "Refer to Ortho for spinal fusion/scoliosis" and some other whoopla that I couldn't read) and of course more pain pills.

I've been very upset because none of these doctors are trying to find out whats wrong with me. All they are doing is sending me off with pain pills. All of these pills are very strong and put me in a comma. I have a life to live and a daughter to take care of. How am I suppose to live like this until I can be seen by someone who knows whats going on?! My doctor tried to make me an appointment with an ortho in my area, but it woundn't be until mid November. So she expects me to hang around and take pain pills until then and just hope that nothing is getting worse in the process!! So I've been making phone calls on my own and that's how I got where I am right now. So I only hope that I can make an appointment with this spine specialist very soon and they can solve this problem instead of jacking me up full of pain pills!!

Wish me luck everyone!! I will try to keep everybody updated on what happens and I hope that all of you have better luck than me! Thanks for reading

Take Care,
Amanda

[danell34]

oh,Amanda!!! I wish you all the luck. I'm a little bit older then most that had this done, my parents left my scoliosis untreated. At 34 I had my spine fused (4 mo.s ago) with rods,srews, ect. T4-L5. I also wish I found this site before my surgery. My curve was 50 degree and they said it would progress, but the pain was unbarible! But... now I'm leaning forward and to the left so now they are telling me they need to go down to my S1, I too dread another surgery, my poor husband has to carry the load, we have four kids ages 4- 15 yrs. old and having to care for me it's like having five kids!!! I hope your get a good specialist I KNOW TAKING PILLS SUCKS!!!! darn scoliosis!!! I didn't know people had there rods taking out? I also hate the way I sit and the way my body looks now, even my but looks different, they told me cloths would fit different but I didn't know I couldn't were jeans!? I'm in sweats and cotton pants,yuk!!! Like I said my poor husband cuz he didn't marry me like this!!! well, this has been long enough!! Really the best of luck to you, it's nice communicating with people with similar conditions. Let us all know how it goes! Danell

[jerseymurrays]

It's been a while since you posted on the board but just in case others read this post they will have more info -- I know about your frustration first hand. I had my surgery 10 years ago and am having some problems. It took my two months convinving Air Force doctors that I needed to see a specialist. One of the doctors actually recommended I needed lumbar support and should use an old dish towel wrapped in duct tape! Most of them are amazed at the fusion and on several occasions called other doctors in "to take a look." I finally started seeing a specialist at U of Penn in Philadelphia. As a matter of fact, I am seeing him again tomorrow for the continued pain I have in my hips. I believe that I may have the beginnings of arthristis and would like suggestions like proper excersise or therapy. I am hoping that another surgery is not in the future. My suggestion for finding a specialist is looking near universities -- I know there are several excellent schools in Florida and may have orthopedic or spinal specialists. I am fortunate to be surrounded by the best medical training institutions.

And, just like the other women that posted I share the same self image. As I get older I worry about it more. I won't wear a tank top or something form fitting if my back looks uneven. I switch between short hair and long, but feel like long hair might hide it. I am married (7 years) but, you know, he knew about my issues before he married me. He saw it and married my regardless. Marriage isn't about marrying someone because they look great and always will! I am sure you have super qualities despite your scoloisis that endear you to each other. As mature adults you know that bodies will change -- you get use to it.

Don't worry about what other think! Enjoy yourself and do what makes you happy. There's so many people that have scoloisis anyways! If you need to talk or ask questions please feel free to email me.

[Jane]

Here we go again...

Hello Amanda:

I have had two scoliosis corrections, the first when I was 16 - 25 years ago where I had the Dwyer Procedure done to 10 vertebrae in my Lumbar spine - this was after I fell off a roof and fractured the 10 vertebrae and xrays determined I had hereditary scoliosis. Since then, I've had 3 children delivered by C-Section.

I'm 42 now and over the years developed scoliosis in the upper part of my spine. In April last year I had a full thoracic spinal fusion done with the Luque instrumentation. I have 1 vertebrae left that has been untouched by a surgeon - this is now the one giving me grief. I experience sharp stabbing pain in my back on the left side which is due to a staple from the Dwyer procedure piercing into something in my spine. It feels like I have fallen and landed on my tailbone - needless to say, I'm having more surgery done to correct this in about a year because I'm still fresh out of surgery according to my doctor. This will be a 3rd radical surgery which the doctor does not want to do because it means he's going to have to remove the entire first surgical procedure and reconstruct my spine developing a new shape to the lumbar region then fusing it all again. I can't wait for that - pain? Yes, but I'll manage...

Don't be afraid of what comes your way, one tends to develop a tolerance to the pain - you also become a roadmap for CN railway so it appears. We do have to be thankful that there are highly skilled doctors who dedicate their lives to fixing we broken down people - for that I am truly grateful. We can thank family female genetics for the root of our troubles - thanks mom!

All in all, we can only smile and crawl back into the brace that has been customized especially for us - how special is that?? Anyways, keep smiling and enjoy your medication...

Jane
Cambridge, Ontario

[Ellen Kiley]

muscular imbalance

I am a yoga teacher who has had several scoliosis operatoins, have been in your position. Finally I am ok but it was a long road. You need the right doctor, the one who gave me a life back was Dr. Oheneba Boachie-adjei. I don't know how many operations he still does, but he's something close to a God and I'd take his recommendation. I too was terrified to have another surgery, for good reason - there are a lot of botched ones - but he saved my life.

The thing is that they don't tell you is that you come out of surgery with the same huge muscular imbalance that you had before. Technically, the muscular imbalance could be the cause of the spinal curvature in the first place, nobody knows which comes first (chicken or egg). So you have to deal with the muscular imbalance. You have to work at it all the time, you have to find help, qualified yoga teachers or Alexander technique, massage, meditation. I am writing a book, but wish I could be everywhere at once.

Where ae you?

[sonia]

my third surgery

I am a yoga teacher who has had several scoliosis operatoins, have been in your position. Finally I am ok but it was a long road. You need the right doctor, the one who gave me a life back was Dr. Oheneba Boachie-adjei. I don't know how many operations he still does, but he's something close to a God and I'd take his recommendation. I too was terrified to have another surgery, for good reason - there are a lot of botched ones - but he saved my life.

The thing is that they don't tell you is that you come out of surgery with the same huge muscular imbalance that you had before. Technically, the muscular imbalance could be the cause of the spinal curvature in the first place, nobody knows which comes first (chicken or egg). So you have to deal with the muscular imbalance. You have to work at it all the time, you have to find help, qualified yoga teachers or Alexander technique, massage, meditation. I am writing a book, but wish I could be everywhere at once.

Where ae you?

Hello Ellen,

I was reading your post,I am new to this forum, and you don't know how you made my day! This September I am have a posterior/anterior fusion with instrumentation at HSS with Dr. Boachie. To read about how you feel he practically saved your life is music to my ears. I really don't want to have this surgery, I have two girls ages 10 and 8 and my husband works long hours and I hear that this surgery has a long recovery. He said that by improving my Saggital plane imbalance and fixing my pseudarthrosis at t-10 and t-11 i would be able to have a straighter posture. I am experiencing neck pains and shoulder pain which i never had and I hope that Dr. Boachie can fix me. I am terrified to have this surgery, I am 41 and I know that my recovery is not going to be like the previous surgeries. How did you feel when you came out of the anthesia? How was the hosital staff? I have exercised all my life so I have good muscular tone, do you think that will make the surgery easier? I' am going to physical therapy now and still excercising so that I can be in optimum health for the surgery. I hope you continue to do well. After my recovery I am going to start doing pilates, I have tried yoga, but it doen't work well for me. Again it was so comforting to me reading your success story with Dr. Boachie, I really feel that he is going to help me. Thank you!

Sonia

[Jacque's Mom]

Alexander Technique

Sonia, I had two office visits with Dr. Boachie and I must say he was such a wonderful person and I have never heard anything bad said about him. Fortunately I did not have to have revision surgery but if I did, he would absolutely be the one to do it. You are in fabulous hands and HSS is the best hospital. I had my partial rod removal there and it is top notch. I also wanted to mention what Ellen said, "Alexander Technique". I am living proof that the AT works! After a total of three surgeries, I was still experiencing pain. Nothing further could be done by surgeries so I went on the internet to find help myself - after all, you have to be your own doctor to some degree. I read a posting on a UK Scoliosis website about The Alexander Technique and had never heard about it. I found a teacher in NYC and went faithfully for one year every single week. Initially I thought since I tried everything else imaginable, this too will be a waste of money, but that is so far from the truth. It is now two and a half years that I go but now it's once a month. It's hard to explain what it is so google it and there is plenty of information on the web. Certainly you have to recover first but then look into it and try it. It really does work for me and has given me my life back. Good luck with Dr. Boachie and your recovery. LYNN

[susannajon]

Hi Sonia,

My daughter was operated on by Dr. Boachie, and he has the hands and heart of an angel. You have made the right choice. The Hospital for Special Surgery is ranked number 2 for orthopedics in the US, and I would argue that Dr. Boachie is the best revision surgeon out there. Everyone I know who has been operated on by him has had an excellent outcome. I will try to answer your questions.

Q: How did you feel when you came out of the anthesia?
A: There's no nice way to say this. You will feel like you've been hit by a truck, but you may not remember it. They get you hooked up to the pain pump immediately, and the pain management team will get you comfortable as soon as possible.

Q: How was the hosital staff?
A: 99% of the staff are wonderful. The night nurses can be less than stellar. Have someone stay with you if at all possible, so you have an advocate.

Q: I have exercised all my life so I have good muscular tone, do you think that will make the surgery easier?
A: Absolutely. The better shape you're in, the easier your recovery.

I've attached a before and after picture so you can see a sample of Boachie's work. I wish you the best of luck with everything!

[sonia]

Dr. Boachie

Hi Sonia,

My daughter was operated on by Dr. Boachie, and he has the hands and heart of an angel. You have made the right choice. The Hospital for Special Surgery is ranked number 2 for orthopedics in the US, and I would argue that Dr. Boachie is the best revision surgeon out there. Everyone I know who has been operated on by him has had an excellent outcome. I will try to answer your questions.

Q: How did you feel when you came out of the anthesia?
A: There's no nice way to say this. You will feel like you've been hit by a truck, but you may not remember it. They get you hooked up to the pain pump immediately, and the pain management team will get you comfortable as soon as possible.

Q: How was the hosital staff?
A: 99% of the staff are wonderful. The night nurses can be less than stellar. Have someone stay with you if at all possible, so you have an advocate.

Q: I have exercised all my life so I have good muscular tone, do you think that will make the surgery easier?
A: Absolutely. The better shape you're in, the easier your recovery.

I've attached a before and after picture so you can see a sample of Boachie's work. I wish you the best of luck with everything!

Hi Susanna

Thank you for taking time to read my post and answering my questions. Your daughter looks incredible, the improvement is so noticeable. I've been very depressed about my surgery schedule for Sept. 2005. But I have been hearing so many positive things about Dr. Boachie and HSS I have to be positive and believe that all will turn out well. It is just the thought of going through this again that is making me crazy. However I just started taking anit-depressants and I still exercise (as much as my back allows me to). Since joining the forum I have received a lot of info on pilates, yoga, and the Alexander method. Everyone has been so informative, I didn't realize that there were so many people with the same problem, because I have never come across anyone who has had scoliosis, and I feel that everyone here understands so much of what I'm going through.

Thanks again and send my regards to your daughter, she looks beautiful.

Sonia

[sonia]

Sonia, I had two office visits with Dr. Boachie and I must say he was such a wonderful person and I have never heard anything bad said about him. Fortunately I did not have to have revision surgery but if I did, he would absolutely be the one to do it. You are in fabulous hands and HSS is the best hospital. I had my partial rod removal there and it is top notch. I also wanted to mention what Ellen said, "Alexander Technique". I am living proof that the AT works! After a total of three surgeries, I was still experiencing pain. Nothing further could be done by surgeries so I went on the internet to find help myself - after all, you have to be your own doctor to some degree. I read a posting on a UK Scoliosis website about The Alexander Technique and had never heard about it. I found a teacher in NYC and went faithfully for one year every single week. Initially I thought since I tried everything else imaginable, this too will be a waste of money, but that is so far from the truth. It is now two and a half years that I go but now it's once a month. It's hard to explain what it is so google it and there is plenty of information on the web. Certainly you have to recover first but then look into it and try it. It really does work for me and has given me my life back. Good luck with Dr. Boachie and your recovery. LYNN

Dear Lynn

Thank you for sharing your experience with me. I do agree with you about being your own doctor. I have been searching the internet for information about my problem and it seems to be very common with scoliosis patients. I've read many articles on the internet and articles recommended on this forum and they have been so informative. I understand exactly what I have, what it means, the the different ways of correcting it. I believe my doctor when he says that both posterior/anterior fusion is best for me since I had the same problem after my 1st and 2nd surgeries. I swear to you this will be my last surgery! I am looking into the Alexander Technique as well as pilates.
After my surgery i will be in a brace for six months, after i get the OK from the doctor, I am starting my own rehab! Thank you for your kind words.

sonia