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ladyluck
23rd August 2007, 02:14 AM
I'm 31 and have had mild scoliosis and moderate kyphosis since I was 16 (that's what the x-rays showed; don't know about the angles). I asked for an NHS operation when I was about 25. Before that I was totally ignorant about the condition. My GP called me neurotic and the surgeon said they only operate when organs are being crushed. This is only a cosmetic problem but it's ruining my life. I always feel stiff cos I'm constantly trying to hold myself so it's not as noticeable. If I don't have a coat on I'm constantly aware of it and avoid bending and putting my arms up. I've always made excuses when friends have invited me on a summer holiday or to a spa. I'm going to see a surgeon privately at the Stanmore hospital, but will be devastated if he refuses to treat me. I can't even begin to explain how depressed this has made me, although I know lots of people here have it worse. I've heard the operation's come a long way in the last 10 years and can be done via keyhole surgery. The question I have are:
Are there surgeons out there who will operate when it's only a cosmetic issue?
What are the chances of being paralysed if a nerve monitor is used?
How big are the scars with keyhole surgery?
How long will I be unable to bend for?
Is it possible to make the kyphosis angle completely normal?
How do I go about finding the best surgeon?
Where should I go next if Stanmore refuse me?
Any other relevant info is really appreciated. Thanks guys. x

Dune50ml
23rd August 2007, 03:46 PM
hi there,

look I know its easy to say but try not to get depressed over this I always used to wear huge jumpers and jackets as well, even in summer but lately I'm thinking to hell with it this is the way i am.

have you been checked out regulary since you were 16? if not then you are are making the right decision going to see a specialist. what i read is that they normal operate when a curve is over 50 degrees.
the nerve monitor is no garentee against anything going wrong in the operation they normal use the wake up method but the odds are definatly in your favour i have a large curve and was told there was only a 5% chance of something going wrong. I dont think they can ever make the curve normal im sorry to say and ive never heard of a keyhole surgery to fix kyphosis.

im sorry if this sounds very negitive. youll get lots of help and advice here and porb find im completely wrong!
best of luck

Seeking_help
23rd August 2007, 04:30 PM
Originally posted by ladyluck@Aug 23 2007, 12:14 AM
I'm 31 and have had mild scoliosis and moderate kyphosis since I was 16 (that's what the x-rays showed; don't know about the angles). I asked for an NHS operation when I was about 25. Before that I was totally ignorant about the condition. My GP called me neurotic and the surgeon said they only operate when organs are being crushed. This is only a cosmetic problem but it's ruining my life. I always feel stiff cos I'm constantly trying to hold myself so it's not as noticeable. If I don't have a coat on I'm constantly aware of it and avoid bending and putting my arms up. I've always made excuses when friends have invited me on a summer holiday or to a spa. I'm going to see a surgeon privately at the Stanmore hospital, but will be devastated if he refuses to treat me. I can't even begin to explain how depressed this has made me, although I know lots of people here have it worse. I've heard the operation's come a long way in the last 10 years and can be done via keyhole surgery. The question I have are:
Are there surgeons out there who will operate when it's only a cosmetic issue?
What are the chances of being paralysed if a nerve monitor is used?
How big are the scars with keyhole surgery?
How long will I be unable to bend for?
Is it possible to make the kyphosis angle completely normal?
How do I go about finding the best surgeon?
Where should I go next if Stanmore refuse me?
Any other relevant info is really appreciated. Thanks guys. x
Hi, I also suffer from Kyphosis so I can relate to you. I'm not the forum expert here nor have I had surgery (yet at least). I'll try to answer some of your questions the best I can and I'm sure others will correct me where I'm wrong.

1. Surgery for cosmetic purposes: From what I understand, this is very rare. Most surgeons only operate where there is significant paind and/or severe curvature (over 50 degrees). You should really have your curve measured to know where you stand. It also seems that it depends on each surgeon what they consider to be significant pain and severe curvature. You should get multiple opinions.

2. The risk associated with paralysis: From what I've read, it is a serious risk but not a significant risk (1% of surgeries).

3. Correcting to normal: I think it depends case to case, there are a few members on this forum who've had surgery to bring the kyphosis curve within "normal" ranges. Look up surgery pictures of ZeroDegrees, Phil, and Andy in this forum.

4. Bending: I believe bending for the first 6weeks - 6 months is restricted because this is the time it usually takes to have the fusion completed (for the most part).

5. Keyhole Surgery & Scars: I've never heard of the key hole surgery but the scars from this surgery are very large and usually run the length of your back. Small price to pay :D

6. Finding the best doctors: I think there is a NSF link in the general scoliosis page which lists surgeons. I personally would like to see surgeons that others have had success with Kyphosis as it is a more difficult surgery. Ask around this forum as plenty of ppl have had the surgery.


I guess the best thing is to try to keep positive. I feel the same way about kyphosis and I've become extremely self-conscious. Its summer here as well and I'd love nothing more than to just wear a t-shirt...but not yet :woe:

ladyluck
24th August 2007, 02:29 AM
Dune50ml: I was seen by a specialist when I was 25. I don't think the kyphosis is any worse since then. I get pain, but it's not significant. Seeking help: you say it's rare a surgeon will operate when it's cosmetic. So it has been known to happen? I'll look at the link you mentioned-thanks. I live in London, if anyone can recommend someone. I don't care if I can't bend for a year; I've had worse. I slept on the floor for 1.5 years in the hope it would improve it, and had to resign myself to the fact it didn't. This sounds crazy, but I somehow thought it would disappear if I slept on the floor for 6 years, which I was willing to do. It was very painful and I'd wake with a tender red mark on the curve. This is how desperately I want this to work. I can't remember where I heard it can be done via keyhole surgery-some website I think. Thank you everyone for your advice. xxx

tonibunny
24th August 2007, 10:14 AM
Hi Ladyluck, welcome to SSO :welcome2: I'm so sorry that your back is causing you so much distress.

I think you need to see the surgeon at the RNOH in Stanmore so you can get assessed and find out the degree of your curves. It's entirely possible that they have progressed to such a degree that would require surgery anyway. But, without knowing the size of your curves, it's difficult to advise you. Perhaps you could post us a picture of your back?

Kyphosis surgery is much more difficult than scoliosis surgery and I doubt very much that they'd be prepared to do it for purely cosmetic reasons. I've never heard of anyone having it done via keyhole syrgery. How will you feel about never again being able to bend or move the part of your spine that is fused, and having a long scar?

When are you going to Stanmore? The surgeons there are amongst the best in the country, so you'll know that you'll be getting the very best advice.

Good luck!

Toni xxx

Little Ali
24th August 2007, 07:38 PM
Hi there. Just wanted to say :welcome2: and I'm sorry you're feeling so low.

Can't really add anything to what everyone else has said but wanted to wish you good luck :squeeze:

Amazed Jean
24th August 2007, 10:41 PM
I just wanted to wish you the best. Good luck!

ladyluck
31st August 2007, 03:42 AM
Hi everyone. Thanks so much for your concern. It's nice to know people who don't even know me take the time to reply to my worries. Tonibunny: I won't mind a scar-no-one sees my back as it is anyway. At least I will feel like I look normal in tight clothes. As for bending: If I have to pick something up, I keep my back as straight as I do when standing and bend my knees so my bum nearly touches the floor, so I think I'll cope with not bending me back, as I'm so used to moving around without bending. I'm not rushing into it cos it is major surgery. I'll let you all know what happens. x

mark
31st August 2007, 09:25 AM
I agree with everything that has been said above. I like you have kyphosis whch has not been operated on and i can relate to everything you and others have said.

Toni is right you will not be able to make any decisions until you get the assessment done and you know the size of the curve and the surgeons reommmendations. To be honest if Stanmore are unwilling to do it i think you are going to struglle to find a surgeon else where who will.

The option of going private is always there but i think the operation is very expensive

I hope you find some answers. Stick around the site we a re friendly bunch who just want to talk with others in the boat as ourselves

mark

sins
1st September 2007, 10:41 PM
Hi ladyluck,
I can't imagine a surgeon would undertake a complex kyphosis surgery for cosmetic reasons. The risks would far outstrip the benefits.
Keyhole surgery was done by some surgeons for scoliosis surgery in the USA but has been abandoned due to not producing acceptable stable fusions over time.
Going private to a hospital like stanmore is a good idea.it's expensive, but you'll get a full and frank assessment by experts who will give you details of your condition and you know it'll be accurate.
Sins

Phil
2nd October 2007, 06:05 PM
I on a few occasions was refused surgery for kyphosis. However, as toni has said. Going to the right place is the key. When I knew the places to get refered to I had an open selection of surgeons who would operate.

Good luck.

ladyluck
21st October 2007, 12:03 AM
I will put up some of my pictures soon. I know the NHS won't do it, so I'll try privately. If I beg to be operated on and accept the risks, is it possible I'll find a surgeon who'll agree to help me? I don't want to spend 1000 on consultations for them all to say no.