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View Full Version : kyphosis questions. Please help!



ladyluck
6th January 2009, 03:56 AM
Hi all,

I'm 31 with a moderate kyphosis (I don't know the degrees, but that's what my medical records say). I was refused NHS treatment in London around 8 years ago. I get mild pain, but get very down about how I look and I want to have surgery privately. I've watched a two hour scoliosis surgery on youtube and am prepared for the scar and loss of flexibility. In fact the surgeon says the scar isn't that bad, but I've heard differently on here. Which is true? The surgeon in this video said the chance of being paralysed was 1 in 100,000, so why are surgeons so against doing it for cosmetic reasons?

Does anyone know anything about this advanced surgery?
http://uk.youtube.com/watch?v=3UEh9XeB1Ec

I read on another site that when it's cosmetic but really effects a person, surgery can be done, so there must be a surgeon in the world who would help me. I'm willing to travel anywhere in the world. I've read in the US it's $250,000. How much is it in the UK? My friend asked her orthopedic surgeon who said 20,000. Is that about right? Why are the prices are so different?

Also, would the metal work protrude?

My curve is not as bad as some of the troopers on here, but it's dominating my life. I don't bend in public and am never relaxed. I slept on the floor for 1.5 years to try and fix it, which was painful, but shows how much I want this. I stopped when I saw no impovement. I really can't explain how badly this is effecting me. For instance, I don't know how I'd cope with hiding my hump when travelling around with a pushchair and bending down to attend to children.

So, to recap my questions are about the scar, metal protruding, advanced surgery, cost in UK and if it's possible to find a surgeon who'll do it for cosmetic reasons (it's also mental reasons too).

I tried to put a pic up once but was unable for some reason. I'm not too good with computers.

Thanks in advance. I know I'm really neurotic.

Simon
6th January 2009, 01:22 PM
Hey ladyluck

My name is simon and i am 34 had my kyphosis surgery in april last year so now coming up to 8/9 mths post op

First off i will show you some before and after pics

BEFORE

http://i254.photobucket.com/albums/hh99/sibow123/myback002.jpg

BEFORE AGAIN

http://i254.photobucket.com/albums/hh99/sibow123/myback004.jpg

XRAY BEFORE

http://i254.photobucket.com/albums/hh99/sibow123/sideon.jpg

AND AFTER SCAR AND XRAY AND A NICE STRAIGHT BACK

http://i254.photobucket.com/albums/hh99/sibow123/sidespine.jpg

SCAR AFTER SURGERY 5 DAYS POST OP

http://i254.photobucket.com/albums/hh99/sibow123/operationpics007.jpg

AND SCAR YESTERDAY

http://i254.photobucket.com/albums/hh99/sibow123/jan2009007.jpg

AS you can see am doing great my curve was around 96/100 degree before surgery and now its within normal limits .

The price of surgery private is prob around 15/20 thousand pounds .

I had my surgery due to mainly cosmetic reasons but also pain 2 mine was done by mr williamsons at the spine centre at hope hospital manchester so it is possible to find a surgeon that does operate for cosmetic reasons only .

my metel work does protrude slightly but that becouse am so skinny and the screws they put in have to be lond otherwise it jusr wouldnt hold your back up but as you can see by the recent picture its not that bad if you look closely you can just about see the screw heads ..

And the question on parallelization is a good question but with recent medical techniques now using spinal cord monitoring its very very slim indeed ....

Hope this help you a little bit

Simon

titch
6th January 2009, 01:49 PM
Good to see you again - I'm glad you've found your way back here :)

If the curve is not big enough to warrant surgery (usual cut offs are min 40 for scoliosis curves, and I think it is 70 for kyphosis curves - certainly not lower than 60 at any rate), then it is very unlikely that you'll find a surgeon who will operate regardless of whether you are paying privately, and in fact if you find one who is willing to operate on an adult with little pain and a curve below the normal operative limits then you should probably be very suspicious of them and their reasons.

That said, as Phil replied to your previous post, and as Simon has said here, it is possible to get surgery for largely cosmetic reasons if your curve is of surgical size. The fact that you get red marks on the hump if you sleep on a hard surface suggests it may be large enough, so it's well worth seeing someone else about it. You should not have to pay privately - it may be easiest to pay for private consultations in order to find the right person for the job, but you should then be able to transfer to their NHS list for the surgery.

You posted before that you were planning to see someone from Stanmore - were you able to do that in the end?

ladyluck
6th January 2009, 03:42 PM
Simon: you look fantastic and must be really pleased. How is the pain?
Titch: I still haven't seen anyone. I'm really scared they'll turn me down and it'll be like a death sentence for me.
The surgery seems very successful, so when it's ruining my life like it is, I think it's crazy that they won't operate.
I could guess the degrees myself. How is it measured?

titch
6th January 2009, 04:54 PM
You have to have an xray to be able to get an idea of the degrees, so if you've got one it's certainly possible to take a guess, although it will not be nearly as accurate as a specialist measuring it (you've got to pick suitable vertebrae to measure from to get it accurate, and even then 2 specialists my measure a curve several degrees differently because it relies on so many factors (some measure from the top of the chosen vertebrae, others from the bottom or middle, and also a small change to the line you're measuring from, so that the slant does not *quite* match the slant of the vertebra can make a difference of a couple of degrees to the eventual measurement).

It can't really be judged on posture, because with scoliosis it can hide itself quite well, so that a small curve with significant rotation can actually cause more cosmetic issues than a larger curve with less rotation for example. With kyphosis, the appearance of it can be affected by things such as the amount of lordosis in the lower spine, and whether the person has forward head carriage. Forward head carriage can certainly make it look worse, but is not necessarily linked to kyphosis (many people lose their cervical lordosis) and does not affect the measurement of it - so it is possible for a moderate kyphosis to look worse than it measures, if you see what I mean (of course if this is the case, cervical lordosis and lumbar lordosis can sometimes be positively affected by physiotherapy).

Sorry that's not a lot of use to you, but if you do have an xray to take an estimate from, I'm sure that a link on how things are measured can be found.

Little Ali
8th January 2009, 01:07 AM
Woah! 15,000-20,000! That is a lot of money!!

jollop
11th January 2009, 02:11 AM
hi im judith im 37 years old i have had two spine operations i had the harrington rod inserted when i was 11 years old im in constant pain daily my advice to you would be stay as you are i wish i never got any operations imited movement because of the rod

Little Ali
11th January 2009, 03:08 AM
Hi there,
I'm ever so sorry to hear about the pain you're suffering Judith. Have you seen a specialist about it? I think you should if you're in constant pain. There are some very good spinal consultants and advanced medical techniques that could help you.

Harrington Rods aren't used anymore because of the problems they caused for lots of people so Ladyluck, I still think it would be worth investigating if you really want something to be done. No harm in doing the research so you can make an educated decision.

Having said that, fusing the spine does still cause limited movement and there are always risks as is the case with any surgery.

jollop
11th January 2009, 04:08 AM
hi im glad to here they dont use these rods anymore iwas asked by my doctor to get injections in my lower spine every month but im not keen on injections

Simon
11th January 2009, 03:03 PM
Hey

Sorry your experiencing pain The injections are not so bad you can have them with sedation if you so wish so you wont feel anythink ..

jollop
12th January 2009, 08:35 PM
hi simon its judith you look perfect after your op your back looks so straight.im trying to find a good private consultant would you have any ideas

Simon
12th January 2009, 08:56 PM
Hey judith

If you let us know were abouts you are in northern Ireland or if you are able to travel we might be able to point you in the right direction there is a couple of members from across your area so they might be able to guide you also .

Yes am very very pleased with my spine its only been 8 mths but my surgeon has done a great job .

jollop
12th January 2009, 09:16 PM
hi simon its judith i live near belfast i just feel so let down with my consultant.his only answer is to get injections.i have xrays and the rod seems to have moved.but he says
the xrays are normal.thanks for your reply

Simon
12th January 2009, 09:26 PM
Hey

Who is your specialist i have listed a few here for you

Ireland (all Dublin based)

Mr Patrick Kiely...............Our Lady's Hospital for Sick Children, Crumlin
Mr. Jacques Noel..............Our Lady's Hosp. Crumlin.
Mr Frank Dowling ............ Our Lady's Hosp. Crumlin (retiring shortly)
Mr Damian McCormack ... Temple St & Cappagh Orthopaedic
Mr. Paul Connolly..............Temple Street.
Mr Ashley Poynton .......... Mater Misericordiae, Mater Private, Cappagh, Beaumont
Mr Keith Synott .......... Mater Misericordiae Hospital
Ms Noelle Cassidy............Cappagh and temple St


Northern Ireland
Mr Niall Eames.............. Musgrave Park and Royal Victoria, Belfast.
Mr Alistair Hamilton ........Musgrave and Royal


If you can are you willing to go private and also have had a mri scan done yet or ct .. ??

jollop
12th January 2009, 09:34 PM
i should be seeing mr eames but everytime i get an appointment i see a mr shimick.my rod seems to be sitting sideways pushing at my left side.im in agony everyday.i would travel anywere to get help thanks

GillyG
12th January 2009, 09:43 PM
Hi Judith, hope you don't mind me butting in here, but it seems to me that you need to insist on an appointment with Mr Eames himself. All too often we get nudged onto the registrars lists and, great though some of them may be, they just don't have the expertise deal with the more complex cases. Bully it out and insist on seeing him - it's the only way ;)

jollop
12th January 2009, 10:03 PM
hi gily g your not butting in at all ive been fobed of all my life,i dont have a social ife because i am so concious of the shape of me.its only a few months that im using this pc.and ive realised i can do more to get help its nice to talk to people in the same situation your in thanks
.

ladyluck
16th January 2009, 03:17 AM
Titch: thanks for the detailed info. I did have an x-ray, but I'll need to get a copy of it. I read that a normal kyphosis is 20-40 degrees; a mild one is 45-50 degrees. Mine was classed as moderate, so I'm guessing that must mean over 55 degrees. So, if they operate over 60 degrees, do you think I could find a surgeon willing to operate? They surely can't ruin my life over 5 degrees.

Judith: I'm so sorry to hear about your pain. You might like to google boswellia for pain relief. It's a natural product, but if sceptial, remember a relation to asprin came from the bark of trees. I've not tried it, but it sounds safer than popping pain killers every day.

Thanks for all your help guys. Anyone else have anything to add?

mark
16th January 2009, 10:31 AM
Hi Lady luck

It all depends upon the consultant some don't operate until the curve is above 70, some 80 my curves around about a 100 and my consultant is reluctant to operate.

I know its frustrating and i have had a lot of heartache in finding the consultant i am know under.

mark

jollop
23rd January 2009, 07:02 PM
hi gilly g i went to my gp today and he said my back is in a really bad state.my back is so bad that i will need surgery again..he said the discs in my back are all wearing away and causing all the pain i have.he put me on pain killing patches to ease me a bit until i get an appointment with a consultant.

GillyG
23rd January 2009, 07:32 PM
I'm very sorry to hear the news but at least your GP is doing something about it! Did he give you any idea how long you might wait to see a specialist?

jollop
23rd January 2009, 07:40 PM
hes trying to get me an appointment as soon as possible.i was discharged from hospital 10 years ago as my consultant said he couldnt do anymore for me.then in august last year my gp referred me to the hospital again as the pain was so bad .i couldnt get out of bed it was so painful.:)hopefully i will get sorted out soon thanks gilly g

Little Ali
23rd January 2009, 11:24 PM
I'm really sorry to hear about how bad your back is, but very glad your GP is helping you. I hope you get things sorted soon. We're all here to support you :squeeze:

jollop
24th January 2009, 01:22 AM
hi little ali hopefully things will be sorted soon .the pain is driving me nuts.the pain patches should ease the pain for a while.it was a choice of injections or patches.im a chicken .so i chose the patches:D

hvdeen
1st February 2009, 04:39 AM
hello judith-I am so sorry to hear all that you have gone through! I last visited this site in April of 2008 and haven't been on here in awhile. I just want to say that I really hope things now get sorted out and your pain is decreased significantly! Doctors can be idiots, no offence but they can make our lives miserable. I am glad your gp isn't and is doing something for you. I had bad doctors up until I switched back to a doctor I had as a kid and she noticed how crooked my back was when no other doctor saw anything wrong and sent me to a specialist. I have/had kyphosis really bad and I couldn't work any longer due to pain and could have been avoided if the doctors I had went to had just opened their eyes. Thankfully the specialist I have is absolutely amazing and has treated me so well-finally a great doctor! I really hope you end up with a great specialist who will help you and listen to you instead of saying it is fine. If you ever need to vent-I am all ears! It can be very helpful sometimes!

jollop
1st February 2009, 07:39 PM
thanks hydeen.your reply is very true.the last operation i got was about 14 years ago.i asked the surgeon what he had done when he operated.i meant did he remove the harrington rod or anything like that.he said well it was like hoking and poking down the coal mines and i got there in the end'.he still didnt say what he done.it was a nurse who said he took some bone from my right hip .and grafted my discs with it.he had no manners.:)

Abbi
2nd February 2009, 09:10 PM
i should be seeing mr eames but everytime i get an appointment i see a mr shimick.my rod seems to be sitting sideways pushing at my left side.im in agony everyday.i would travel anywere to get help thanks


Hi Judith,

Welcome to Sso! (Sorry I am a little late with that....I have not been that active recently!) Just out of interest - how did you find the site? I am a fellow Northern Irish girl.... I was under Mr Hamilton, and had surgery in 2005 under Mr Eames. Discharged in April 2008.

I am surprised that you have been seeing other surgeons at appointments. Everytime I have went, I havwe always seen either Mr Hamilton or Mr Eames (with a fair share of medical student having a look!) I reckon that you need to insist on seeing Mr Eames. I do believe the clinic times have changed now from a Wednesday to and Thursday. Another girl who used to post on here (Maggie) is seeing Mr Eames now on a Thursday evening.

All the best with everything,

Let us know if we can be of anymore help to you :)

jollop
4th February 2009, 12:18 AM
hi abbi i came across the scoliosis site as i was trying to see if i could go private to get some answers about the pain im in.im waiting on an appointment for mr eames.i hope i see him and not someone else.it so frustrating getting thrown from post to pillar>:|

GillyG
4th February 2009, 10:35 AM
Judith, when you get your appointment date, give the hospital a ring and check that you are definitely down to see Mr Eames and not one of his minions (good as some of them might be, they are unlikely to have the depth of specialised knowledge that is needed in your case) If not, explain your situation of being passed from pillar to post and ask to put onto Mr Eames's list. It works for me whenever i find I've been put on the registrars list :)

the_trunk
3rd April 2009, 02:39 PM
Hi!

Ladyluck, how is it going? Any progress with your problem?
What kind of kyphosis have you got?

I totally know what you mean about avoiding bending forwards.. I've got a postback kyphosis (I think) and I never bent forwards around people.. Never feel comfortable, always walking around with trunk uplifted and shoulders back like a stupid soldier..

Does anyone know of a surgeon willing to perform surgery primarily because of cosmetics?
And is it possible to correct a kyphosis if it's a non-Scheurmann's?
I think my kyphosis is around 60 degrees, and I'm really worried that it's gonna get worse, as I'm still only twenty years old..
I've also got a mild scoliosis which has made the kyphosis a lot worse on the right side of my body..

Take care all