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the_trunk
23rd April 2009, 11:19 AM
Hi!

As I mentioned in another thread, I have got a 50 degree Scheurmann's kyphosis that is really bothering me..
Is there anyone who've heard of anyone with a similar curve getting a surgery, or of any surgent willing to operate on anyone with a mild kyphosis?

I'm willing to take all the risks and I can go basically anywhere in the world to get the surgery done..

Take care you all

mark
23rd April 2009, 12:37 PM
Hi

The rule of thumb goes like this

up to 40 degrees is classed as normal

40 70 or 80 is usually physio

above 80 and some surgeons say 90 is where operations are usually considered

If you went private your looking at about 30 thousand English Pounds for the op and you can add more ontop for x rays, mri scans and consultations (which are 250 pounds ago)

I hope that helps in some way

ponkopalin
23rd April 2009, 01:11 PM
Hello, I have been diagnosed with a curve of "something more" than 50 degrees. You can check photos of my back in the thread I started.. does my back look similar to yours?

I was diagnosed using a kyphometer and will get x-rays done shortly.

My specialist (I'm from Slovenia) said they do surgeries for curves greater than 70 degrees and I have seen some sites that mention 60 degrees as candidates for surgery.

For example:

http://health.nytimes.com/health/guides/disease/kyphosis/overview.html


Also 20-40 is quite a wide range, 40 is already quite big.



Fon et al measured thoracic kyphosis in children younger than 10 years and in adolescents aged 19 years and younger.4 (http://javascript<b></b>:showcontent('active','references');) In those younger than 10 years, he found that the average kyphosis was 20.00 with a standard deviation (SD) of 7.85 for boys and 23.87 with an SD of 6.67 for girls. Shelton et al have reported on the diagnosis and management of kyphosis in adolescents.5 (http://javascript<b></b>:showcontent('active','references');)
In adolescents, the kyphosis had increased to an average of 25.11 with an SD of 8.16 in boys and 26.00 with an SD of 7.43 in girls. Females, on average, have slightly greater kyphosis in the thoracic spine throughout life. This difference between males and females increases further when they are older than 40 years.
In women aged 50-59 years, the average kyphosis measured 40.71 with an SD of 9.88, while men in the same age group had an average thoracic kyphosis of 33.00 with an SD of 6.46.

http://emedicine.medscape.com/article/1266349-overview

the_trunk
23rd April 2009, 03:51 PM
Hi!
A big thanks for the quick replies, guys!

Mark:
Hm, are you sure about that? I've read that surgery is generally considered when the curve is at least 70 degrees and sometimes even at 60 degrees.
According to a specialist I talked to these are just to be seen as general guide lines, not as definite limits. If the patient really wants it surgery can be done just because of cosmetic factors.
As I said, I'm desperate.
And yes, I'm going private, but 30 thousand pounds? :/ I read some people saying around 20 thousand pounds, is that not enough?

Ponkopalin: I really doubt that your curve is above 50 degrees as mine is exactly 50 degrees and it's waaay more curved than yours.
You're back is fine! hehe

mark
23rd April 2009, 04:11 PM
Where abouts in the world are you

Like i said it depends upon a lot of factors like the surgeon, age of patient, fitness, mental health, reasons for surgery (if you telll a surgeon its purely for cosmetic purposes he's more likely to knock you back, thats fact, ive had it several times) results of mri scan etc etc

The figures i gave are a general rough guide

You need to find yourself a surgeon first and go through all the tests

Kyphosis is a lot more dangerous to operate on than scoliosis due to the nature of the curve and Scheuermann's is the most difficult kyphotic condition to treat, thats a fact, some surgeons won't even treat very large curves. Mines over 100 degrees and i have had a hell of a time finding a surgeon to treat me.

If you want read my story its the pinned thread above

r.e costs

theres 17 thousand pounds worth of hardware going into your back (depending on length of rods number of screws etc). Surgeons fees and then your bed time as well as meals etc etc etc it all adds up

mark
23rd April 2009, 04:37 PM
I wish you all the best of luck in finding a surgeon

If you look in the general forum theres a pinned post giving details of surgeons and where they reside

mark

Unregistered
24th April 2009, 06:03 AM
Hi!
A big thanks for the quick replies, guys!

Mark:
Hm, are you sure about that? I've read that surgery is generally considered when the curve is at least 70 degrees and sometimes even at 60 degrees.
According to a specialist I talked to these are just to be seen as general guide lines, not as definite limits. If the patient really wants it surgery can be done just because of cosmetic factors.
As I said, I'm desperate.
And yes, I'm going private, but 30 thousand pounds? :/ I read some people saying around 20 thousand pounds, is that not enough?

Ponkopalin: I really doubt that your curve is above 50 degrees as mine is exactly 50 degrees and it's waaay more curved than yours.
You're back is fine! hehe

Hi this is sally
I just wanted to get a few points across. I do agree with everything Mark has wrote. I had surgery three and a half years ago for my s kyphosis. I had always thought that my curve was about 110 but the doctor just informed me that it was over 120.(first surgery) I am fused and roded with two screws in every vertabra from T2 to L2. I also have several screws in all my cross links. I also had my disc's removed from the front at T4 threw T 11. I also have about three cross links for extra support threwout the spine. I just want you to know that my 120 plus curve could only be corrected to a 53 degree curve so you see even after having the extensive surgery my curve is still larger then yours. I do know that there is not one doctor ware I am from that would ever perform this extensive dangerous surgery on someone for just cosmedic reason's. It is just to dangerous and it also is more dangerous and extensive and painfull then having a scolosis surgery. I would never get this surgery for cosmedic reasons it was to dangerous and I was in surgery for over ten hours. That is not good having to be under that long. I had to have the surgery because of the size of my curve and the curve was still progressing. I was 35 at time of my surgery. I went to the doctor because I could barley walk anymore and the pain in my back was unbearable, this is when they discovered that I had s kyphosis and in just a few months I had the surgery. The pain is so bad I wish I had died after I had woken up. The recovery period last over a year and it is one painfull year. With this surgery there are also still going to be long term problems and there will be some things that you will not be able to do anymore. My pain after healing was not as bad as before but with it came new pain and new problems. Having the rods and fusions in your back also puts stress on the remaining good ones. I was in a car accident. I was rear ended a year and a half ago. My vertabra above the fusion and below the fusion took the brunt force of the accident. Last March I had surgery to correct the C5/C6 disc and vertabra that were injured in the accident. I had a plate and four more screws put in from the front along with a discectomy and fusion. I also three weeks ago just had another surgery. I had to have a cerviclethoracic fusion from C4 to T5. This also was caused from the accident. I had some of the older harware removed and replaced had extension pieces hooked on and everything extended all the way up to C4. I am now fused,rodded,screwed and a few more things from C4 to L2. This is really the longest fusion that my doctor has had to do. But because of the car accident I also damanaged the lumbar disc's right below my kyphosis fusions also and will need to have surgery sometime in the future to correct this. I only have 3 vertabra left in my neck at c1,2,3 that have no hardware in them. These vertabra will be under great stress now and I am not sure how long they will last. All of my thoracic vertabra have rods and hardware in them and the first two lumbar ones do as well. In the lumbar spine I only have L3.4.5.vertabra left and two of them are going to need surgery on sometime down the road they most likely will fuse them all and extend the fusion up to the bottom of the old one.
Anyway my point is this, I really hope that there are doctors out ware you are as there are here that would not ever think about doing surgery on a 50 degree curve that is almost in the normall range for just cosmedic reasons. This surgery is not a surgery to have done for merly cosmedic reasons. Not when you would be dealing with the after affects the rest of your life. If my curve was 50 I would be extermly happy.
I only right this to try to show or tell you the problems that you could have after the surgery if you were still thinking of doctor shoping untill you found someone to do it. Really it would not be worth it in your case. In my case it had to be done as it was still progressing and already over a 120 degree curve. I still cannot believe that I am fused from C4 TO L2. My surgery three weeks ago lasted about eight hours and that was also dangerous and really painfull. I was in the neuro icu for a few days and in a regular room on the neuro floor for eight days. These surgerys are taken very seriously. I am again in a big brace that supports not only my back but my neck and my head also. Much more then my TLSO brace and I thought that brace was bad.
Sorry this was so long and most likely confusing but it is really hard to get my point across and try to do it so I do not up=set you. I really hope I did not up set you but it scares me thinking that you would consider this surgery when you curve is close to a normall one. You could have more problems and pain if you were to have surgery and it would last you a lifetime.
Sally

mark
24th April 2009, 09:03 AM
Hi Sally

Its good to hear from you i have missed reading your posts. I am so sorry to read about the complications you have been having and the car accident you were in. Everything you have said (andit was eloquently put) (SP) i completly agree with. Once again i'm sorry to read about the accident and the progression of your curve. Wow that is one hell ofa long fusion you have had to have done. I really admire the guts you have had to go through it to be honest i would have probably given up. Would like to see you post more often here your always forthright honest and compassionate in your views

Once again i completly agree with everything you have said

Take care of yourself and i hope your recovery from your most recent surgery is going well

Mark

the_trunk
24th April 2009, 09:29 AM
Hi guys!
Thank you so much for taking the time to give me such long replies!

Mark:
I read your story, I really hope that you'll get your surgery. It seems so wierd that you're having problem getting a surgery done if you've got a 100+ degree curve.. I've seen people having 70 degree curves getting surgery done..
Best of luck to you.
I live in Sweden. Traveling to, let's say, the UK would be no problem for me.

Sally:
Thank you for your post.
It has made me thinking..
I hope everything will work out for you.. are you currently in a lot of pain?
The thing is just that I believe that on smaller curves, there will also be less problems. (Correct or not..?) I'm also only 20 years old.
And when you say that there will be things I won't be able to do, what kind of things do you mean? Except for bungyjumping etc I've heard that it's possible to do basically anything.

The long-term effects and problems are the only thing holding me back from getting a surgery done. I could take the pain during the recovery, that's no problem.
If I would be lucky enough to stay out of car crashes etc, how big is the risks that there will be problems with my spine in the future?
Has anyone got any kind of statistics? That would be very helpful as I then would be able to calculate the benefits vs. the risks.

And when you say "just for cosmetic reasons" I have to disagree with you.. let's say like this, this is disturbing me constantly. Ever since my teen years I've always been thinking of it, I never ever bend in front of people and I'm walking around all stiff like some soldier, I hate my body and the way I look and I want to kill myself.
I'm also afraid that my curve will progress.
To show you how badly I want this: If the risk for paralysis during the op would be at 10 % I would still consider doing surgery. It's just the long term problems that's scaring me.
I think it's very individual what the gains/risks from surgery


Thank you again guys and I really hope that you'll get your quality of life back.

mark
24th April 2009, 09:54 AM
Hi

Sally's right in that certain sports especially impact sports are a def no no for the first year as the fusion takes a long time to heal. After that well its up to the individual. Rollercoasters are out too due to the impact on the spine and you can't drive or get in a car for a while too (just in case of accidents). Your spine will be a new alignment so muscles you have not used for years will need to be strengthened.

Personaly i would not bungy jump with a fusion no matter how long after. I'm probably going to have sacrifice a lot, i climb, do the odd bit of moutaineering and run a lot so some of that is going to have especially where ropes are involved the risk of a fall and a sudern jerk on the spine or bouncing of rocks is just too great a risk.

I don't think (icould be wrong) that the degree of curve matters that much when operating they still have open your spine up and insert someform of hardware and they sew you back up again. The average (from reading) length of surgery seems to be anywhere from 8 hours to 12 and where an anterior or posterior release is needed thats two 8 operations 3 days apart (some surgeons do both at the sametime) again thats up to the surgeon

Your looking at least 3 days in ICU and then a week on the wards then antwhere between 6 weeks to 6 months to recover then another 6 months to get back to some form of pre op state so your basically looking at a year.

Longterm, well its very rare these instrumentation break but it does move and curves have known to progress so you have to take that into consideration. To be honest if you come to the uk you will probably be offered physio for 6 months to a year first then they will monitor you to assess the progress of the curve then they will decide on the course of action. I think its very rare that someone goes in and gets the op within a month so to speak

I hope that helps some what. I can understand your feeings i went through it all and still suffering psycologically as well as physically. The only problem is its such a damned dangerous operation

If you need any further info please free to send me a pm

I dont want to appear as if there is no hope for you but you really need to see a surgeon who specialises in spinal related conditions not just a run of the mill orthopedic surgeon.

mark

the_trunk
24th April 2009, 11:44 AM
Hi Mark!
Heh, you're fantastic man. Much love for the effort you're putting in here to help everyone.
Fun to see you enjoying climbing and mountainering. I love trekking and climbing, and at the moment I'm working as a power line repairer. Heights are exciting hehe.
But quiting those things isn't a problem.. I enjoy running and working out at the gym though, that's no problem to do after surgery right??
Btw, anyone except me who's got big lung volume? Mine's at over 7,5 liter hehe. That's a thing I think I have to thank my Scheuermanns's for.

"Longterm, well its very rare these instrumentation break but it does move and curves have known to progress so you have to take that into consideration. To be honest if you come to the uk you will probably be offered physio for 6 months to a year first then they will monitor you to assess the progress of the curve then they will decide on the course of action. I think its very rare that someone goes in and gets the op within a month so to speak"

Darn, that's what expected.. The thing is I really don't have the time or the money to do physio and wait a year. Do you think there are surgents who answer to emails, or will there be someone else answering them?
If I get a straight no right away I don't have to go there unecessarily.

Thank you again Mark for all the information you have given me. Good luck with everything!

mark
24th April 2009, 11:49 AM
Hi

Thanks for the lovely post

Wow thats a big lung volume

You could try e amiling the surgeon direct

You would have go to google and put in the name of the hospital and search for the surgeon they may have e mail addresses on there otherwise phone you may get the advice directly over the phone

If you look in the general forum there are loads of hospitals and surgeons mentioned in that thread

Happy hunting

mark

teebee
25th April 2009, 01:47 PM
Hello all...my quarterly check in. Mark is spot on. My son had surgery in August to correct his curve, which was close to 90 degrees. His diagnosis was 5 years ago at almost 70 degrees. NO surgery until over 80. Physio before that.

My son has had great success, but now is limited somewhat due to his fusion T3-L2 (can't remember if that is exact...would have to go look at the charts). He is back in the pool getting stronger every day.

teebee

Unregistered
25th April 2009, 04:58 PM
Hi!
A big thanks for the quick replies, guys!

Mark:
Hm, are you sure about that? I've read that surgery is generally considered when the curve is at least 70 degrees and sometimes even at 60 degrees.
According to a specialist I talked to these are just to be seen as general guide lines, not as definite limits. If the patient really wants it surgery can be done just because of cosmetic factors.
As I said, I'm desperate.
And yes, I'm going private, but 30 thousand pounds? :/ I read some people saying around 20 thousand pounds, is that not enough?

Ponkopalin: I really doubt that your curve is above 50 degrees as mine is exactly 50 degrees and it's waaay more curved than yours.
You're back is fine! hehe

Sorry this is Sally. I will have to find my pass word soon so I do not have to keep posting under unregistered.

I have to comment on this statement that you have worte as it is really up-seting me. Why would you make a comment to Ponkopalin and then write You're back is fine! hehe. The hehe part is what seems so rude to me.

On the other hand. If I would have known that my scheuramann's kyphosis was at a 50 degree curve many years ago and had it followed for a few years to see if it would progress instead of never going to the doctors I would have had my surgery way before it got so out of controll at over a 120 degree curve. I knew I had a problem and I ignored it and never went to the doctor for it even when it became so painfull. I suffered with being picked on from a early age with how my back looked back then. I just never knew what it was I thought I was lazy and making my back look the way it did. Also my parents were always yelling at me to sit up and why did I have to always look like I did. They always told me nothing was wrong with my back so I just never went to a doctor untill at the age of 35 it became so out of controll that I was missing so much work and in so much pain and as I said in the past at times I had to crawl aroud the house because the pain just would not let me even stand up or sit up.
I waited for so long and my curve was so large and would have even progressed even more that even now that it is fixed to the best they could get it I will have problems for the rest of my life. I can not say if all my problems would be from my kyphosis surgery as I have had several surgery's after from being in a car accident. My injury's even from the car accident may not have been so bad if I had not had all the stress focused on the areas above my fusions and below them. It is hard to say. I think that if before my first surgery and if the doctors even found out that I only had a 60 degree curve but they new that the curve would rapidedly progress that they would have chosen to do my surgery way back then.
My point to you is that if your surgeons could find out that your back is going to continue to progress for the worse and continue to then surgery could be in your furture as you do not want it to progress to the point like mine and Mark's did. However you say in one of your posts that you do not have any wedge shaped vertabra and that is a indacater that your back would progress. To have scheurmann's kyphosis you would have to have wedge shapped vertabra.
Lets say you had x-rays in 6 months to a year from now and they were measured at a higher degree then 50 then surgery would benifit you as it would stop it from progressing. Yes, fixed at a much lower degree would make the surgery less painfull and the out come so much better.
I have a great deal of pain now but because of the extent of all my surgery's and the car accident it would be unfair for me to say what acctivies you could not do if you were to have the surgery. My fusion is so long that there will be things that I can't risk doing as I only have the first three vertabra left in my neck that are any good and they are going to be taking all the stress. My sistuation will be different now as my problems are not just from Scheuramann's kyphosis any more.
Good luck with everything and let us all know how things work out for you. As I say my surgeon with my fisrt scheurmann's surgery got my curve down to 53 degrees and he is happy with that. I would have liked it to be more like 40 or 30 but anything is better then 120 right?
Sally

Unregistered
25th April 2009, 05:13 PM
Hi!
A big thanks for the quick replies, guys!

Mark:
Hm, are you sure about that? I've read that surgery is generally considered when the curve is at least 70 degrees and sometimes even at 60 degrees.
According to a specialist I talked to these are just to be seen as general guide lines, not as definite limits. If the patient really wants it surgery can be done just because of cosmetic factors.
As I said, I'm desperate.
And yes, I'm going private, but 30 thousand pounds? :/ I read some people saying around 20 thousand pounds, is that not enough?

Ponkopalin: I really doubt that your curve is above 50 degrees as mine is exactly 50 degrees and it's waaay more curved than yours.
You're back is fine! hehe

Sally again
Forgot to say somthing about the price of my surgery as you were wondering about the issue.
Just for my first scheurmann's kyphosis surgery the amount it cost was large.
The surgery was over $150,000 thousand dollars. This did not count the years of physical thearpy and follow up visits and follow up x-rays that need to be done at least the first year after the surgery. This was just for the surgery itself and my time in the hospital. I also ended up back in the hospital for another week for complacations 3 weeks after the surgery and that was another 70,000 thousand dollars. (FLUID AROUND MY LUNGS AND MY INSIDE SUTURES IN MY CHEST HAD RIPPED APART) Talk about extreme pain!
My surgery was well over ten hours long and it was a anterior and posterior surgery. The cost of post surgery intensive care, the neuro intensive care unit, I was in there for four days. The neuro floor I was in for another eight days. The hardware alone was over 12 thousand dollars. This was just from my first surgery for scheurmanns kyphosis not for any of my other surgery's. So I just can't see how someone could pay for this privately. No way I could have.
Anyway any questions you may have I will try my best to answer them.
Sally
and yes I am a bad,bad speller sorry

titch
25th April 2009, 09:00 PM
Also 20-40 is quite a wide range, 40 is already quite big.
Just thought I would note, for interest sake, that while "normal" kyphosis is considered to have a range of 20 degrees, lordosis has an even wider range, being approx 30-70 degrees.

mark
25th April 2009, 10:09 PM
Hi Saly if you have problems logging drop me aq pm and will see if i can sort it out for you

Thanks once again for such a elequant post

And yes my spellings crap too so i never noticed any

Take care

Mark

Unregistered
26th April 2009, 01:44 AM
Hi Saly if you have problems logging drop me aq pm and will see if i can sort it out for you

Thanks once again for such a elequant post

And yes my spellings crap too so i never noticed any

Take care

Mark
Thank's Mark, I will need some help as I can not remember my password.

So I thought that I would fill you all in on the cost of my last surgery as I am actually shocked myself. I ususally would not talk about the cost but many people seem interested in it. I knew that the surgery would be up in cost but not this much. It is the cost of my hardware this time that is out of the world. I had my last surgery wich was a cerviclethoracic fusion with hardware and what not from C/4 THREW T/5 three and a half weeks ago. I was in the nero intensive care for a few days and on the regular nero floor for a week.
I got a statement in the mail today and this does not even cover the whole bill it doesn't even have the surgeons bills listed on this statement and I had a nero surgeon, orthopedic surgeon,orthopedic assastance and some others.
So far the cost has come up to $117,936.48. For my hardware alone the cost is so far $65,917.00.
I just can not believe the price of all the hardware. If I were to add up all the rest of my hardware(I had said the one surgery the hardware was ten thousand but I think I got that wrong and would have to look it up) from the last few surgery's I could not even imanage how much money it would be. The $65,917.00 was only for the hardware at C4 to T5. Remember I have hardware from C4 to L2 and also more hardware that was put in the front at C5 /C6. I just find this amazing. This surgery certainly was more expensive then I had first thought at least the cost of the hardware was anyway.

Unregistered
27th April 2009, 02:40 AM
Hi Saly if you have problems logging drop me aq pm and will see if i can sort it out for you

Thanks once again for such a elequant post

And yes my spellings crap too so i never noticed any

Take care

Mark

Sorry to put this here Mark.
I am not much on computers and I don't even know how to send you a PM, I can't figure out how to get my password. I know the sally333 part of course. So if you could send me a PM I would appreatiate it. Thanks
Sally

nutmeg
27th April 2009, 11:14 AM
Sally, I don't think you will be able to read a PM if you can't log in .

There is a special thread (at the bottom of the "front page") to help people who have lost their passwords - if you post your email address there it won't show up for everyone to see, but the moderators will be able to see it, and one of them will send you a new password to your email address

sally333
27th April 2009, 04:45 PM
Sally, I don't think you will be able to read a PM if you can't log in .

There is a special thread (at the bottom of the "front page") to help people who have lost their passwords - if you post your email address there it won't show up for everyone to see, but the moderators will be able to see it, and one of them will send you a new password to your email address

Thank you, nutmeg

the_trunk
5th May 2009, 01:48 PM
Sorry this is Sally. I will have to find my pass word soon so I do not have to keep posting under unregistered.

I have to comment on this statement that you have worte as it is really up-seting me. Why would you make a comment to Ponkopalin and then write You're back is fine! hehe. The hehe part is what seems so rude to me.

On the other hand. If I would have known that my scheuramann's kyphosis was at a 50 degree curve many years ago and had it followed for a few years to see if it would progress instead of never going to the doctors I would have had my surgery way before it got so out of controll at over a 120 degree curve. I knew I had a problem and I ignored it and never went to the doctor for it even when it became so painfull. I suffered with being picked on from a early age with how my back looked back then. I just never knew what it was I thought I was lazy and making my back look the way it did. Also my parents were always yelling at me to sit up and why did I have to always look like I did. They always told me nothing was wrong with my back so I just never went to a doctor untill at the age of 35 it became so out of controll that I was missing so much work and in so much pain and as I said in the past at times I had to crawl aroud the house because the pain just would not let me even stand up or sit up.
I waited for so long and my curve was so large and would have even progressed even more that even now that it is fixed to the best they could get it I will have problems for the rest of my life. I can not say if all my problems would be from my kyphosis surgery as I have had several surgery's after from being in a car accident. My injury's even from the car accident may not have been so bad if I had not had all the stress focused on the areas above my fusions and below them. It is hard to say. I think that if before my first surgery and if the doctors even found out that I only had a 60 degree curve but they new that the curve would rapidedly progress that they would have chosen to do my surgery way back then.
My point to you is that if your surgeons could find out that your back is going to continue to progress for the worse and continue to then surgery could be in your furture as you do not want it to progress to the point like mine and Mark's did. However you say in one of your posts that you do not have any wedge shaped vertabra and that is a indacater that your back would progress. To have scheurmann's kyphosis you would have to have wedge shapped vertabra.
Lets say you had x-rays in 6 months to a year from now and they were measured at a higher degree then 50 then surgery would benifit you as it would stop it from progressing. Yes, fixed at a much lower degree would make the surgery less painfull and the out come so much better.
I have a great deal of pain now but because of the extent of all my surgery's and the car accident it would be unfair for me to say what acctivies you could not do if you were to have the surgery. My fusion is so long that there will be things that I can't risk doing as I only have the first three vertabra left in my neck that are any good and they are going to be taking all the stress. My sistuation will be different now as my problems are not just from Scheuramann's kyphosis any more.
Good luck with everything and let us all know how things work out for you. As I say my surgeon with my fisrt scheurmann's surgery got my curve down to 53 degrees and he is happy with that. I would have liked it to be more like 40 or 30 but anything is better then 120 right?
Sally

Nooo, I see what you mean Sally.. The part "hehe" shouldn't be there.
Sorry Ponkopalin if you thought I was being rude, I just wanted to say that you're back looks fine and not abnormal. I promise you, it's a huge difference between your back and my 50 degree back.

And no Sally, I have wedge shaped vertebrae. It was a poor doctor who really didn't know much about Scheuermann's who said so.. I later went to a specialist who said it's without a doubt a Scheuermann's.
Hm, I must say thank you very much for your advice.. Maybe the best thing I can do is to see if it's going to progress..

Does anyone have a specialist in The UK that I can send an email to and see if I can make a booking sometime in the future?
Thank you so much for the help and all the advice, Sally :)
How are things with you? Still in a lot of pain?

Mark: How are things with you? I read that you have a pre-op date sometime soon.. Nervous?? Hope everything will turn out great for you!!

tonibunny
5th May 2009, 03:09 PM
If you like I can give you the phone number for my surgeon's secretary, who handles his private consultation list. He's based in London and is one of the best surgeons in the UK. He would definitely tell you if surgery was a viable option for you :) PM me if you'd like the number.

mark
5th May 2009, 04:48 PM
Have a read of this journal and see what you think

http://www.iol.ie/~rcsiorth/journal/volume5/issue1/sch.htm

mark

mark
5th May 2009, 05:04 PM
Please note the paper gives conflicting signals

Typically patients, who are unhappy with their appearance, are skeletally mature and whose kyphosis measures at least 60 degrees can be considered for surgery.

The operative word hear is considered that does not gurantee the surgeon will say yes

The other paragraph of interest is

Importantly these patients must understand the magnitude of the surgery, the risks involved in even the most experienced hands and the likelihood that the kyphosis may not be able to be corrected to an unnoticeable degree. Surgical correction is not common for Scheuermann's kyphosis.


and the summing up indicates my firmly held belief of how difficult it is to get surgeons to operate on us Sceuermann's sufferers

Symptoms warranting surgery are rare.

Unfortunately thats the way the cookie has crumbled

ponkopalin
5th May 2009, 06:47 PM
No, no, don't worry, I wasn't offended. I just don't post here much :). I had x-rays done yesterday, but didn't get results yet. And they took them while I was lying down, to get standing x-rays I would have to go to another hospital.. don't know how much good these will be. I'm mostly bothered by pain, not so much with appearance.. It's weird how some people with greater curves than mine seem to have less pain.

mark
6th May 2009, 01:10 AM
Hi Ponkopalin

The usual position for taking x rays of kyphotic spine to work out the cob angle is a standing up x ray. Sorry to read about the pain what do you do to manage it. I usually just grin and bare it or go out for a long run and get the endorphins working. I agree how weird it is when it comes to the amount of pain that we all suffer from. I suppose each individual back is different and we all have different pain threshholds

the_trunk
7th May 2009, 12:02 AM
Mark: Thanks for the journal! It was interesting to read.
The 60 degree limit is irritating! What if my curve would be at 60 degrees 10 years from now??
Well, I'll still do all I can to get a surgery done and I won't stop until I've got a no from all good surgeons out there..
My mind is set, I want this.

mark
7th May 2009, 12:20 AM
Yes dude i love your spirit, you know what you want and your going to push for it, i can totally empathise with you. Stay strong mate, where all here to give you all the support and advice we can

I would go into the general forum look up all the hospitals in the UK who perform the surgery and bombard them all with emails

Hopefully one will come back and take a look at your case

again stay strong and keep your determination up

take it easy mate

mark

Simon
7th May 2009, 01:33 AM
MR wILLIAMSON AT HOPE HOSPITAL IN MANCHESTER IS TOP OF HIS LEAGUE MATE HES BASED IN SALFORD THE SPINAL UNIT THERE

the_trunk
7th May 2009, 05:48 PM
Mark: Thank you for all your support and advice.
I cant describe how much it means to me.
I wish you the best of luck with your operation, hope everything will turn out ok for you. I'll be thinking of you and I'll continue to check your thread, please keep us updated.
And yes, bombarding all available surgeons is precisely what I'll do! :)
Stay strong mate


Thank you Simon, I'll send Mr Williamson an email.

What do you guys think of this letter, is my tone to brusque?


I'm a 20 year old male from Sweden named
A couple of months ago I was diagnosed with Scheuermann's Kyphosis with a 50 degree Cobb angle.
This condition is causing me a lot of pain, which I've been doing physio therapy and alternative methods to get rid of with no results.

My major problem is cosmetic though. I've been hating my hunch back and my body for all my life and don't want to live like this. It's ruined a lot of my self esteem and made me completely avoid contact with girls. I can never relax around people and I'm extremely conscious about my condition all of the time.
It's also gotten somewhat worse lately, and I'm terrified that the curve will continue to progress.

I've read a lot about Scheuermann's and I know that a surgery to correct a Scheuermann's deformity is a major operation with a lot risks of complications and I do know that the curvature generally has to be at least 60 degrees to even consider a patient for surgery.
Even so, my mind is set. I want a surgery done, regardless of the risks and pain.

Soo, my question is: Is there any point for me to travel to The UK for a consultation, is there even the slightest chance that I can get a surgery done, or will you just give me a straight no? If so, please tell me, as it in that case would be a big waste of time and money for me.

Best Regards

mark
8th May 2009, 09:03 AM
I would re word the last paragraph and say something like

I would be obliged if you could let me know what your opinion about my case and whether you think it would be worth travelling to the UK to seek a private consultation with yourself.

Or words to that effect

THe first paragraph

you might want to get the rid of with no results and put something like i have not seen any positive results from the physio and exercises that i have been prescribed

ponkopalin
8th May 2009, 07:53 PM
Hi Ponkopalin

The usual position for taking x rays of kyphotic spine to work out the cob angle is a standing up x ray. Sorry to read about the pain what do you do to manage it. I usually just grin and bare it or go out for a long run and get the endorphins working. I agree how weird it is when it comes to the amount of pain that we all suffer from. I suppose each individual back is different and we all have different pain threshholds

Yeah, that's what I've read about the x rays.. I also run and it's somewhat better when I'm exercising. I also tried NSAIDS (diclofenac), but I don't think they do anything for me and my stomach doesn't handle them well.
I tried doing some exercises that the physio recommends for a couple of months, but they are not very effective. Even though I only get muscle pain..
It's worst when I am standing still for long periods of time or sitting in a chair with bad back support. I was working through the winter and even though it was a desk job, it didn't go too well regarding pain. When my back muscles get overworked they need a couple of days to return to normal, sitting in a comfortable chair, in such times running is painful too. And I only get pain in the thoracic area.
Anyway I did the x rays and I'll see the specialist wednesday. It was supposed to be this week, but the x rays didn't arrive yet.

mark
8th May 2009, 08:26 PM
I hope the x rays show what and where the pain is coming from at least then they will be able to give you some coping mechanisms to deal with the pain

ponkopalin
13th May 2009, 07:12 PM
Ok, I just came home from the visit.. Apparently my kyphosis is 45 degrees, but I also have scoliosis with a double curve of 15 degrees and I'm showing first signs of "degenerative changes," whatever that means. He said surgery isn't performed for cases like mine and recommended some sort of therapy (physio? but different from what I've been doing so far, so I'm gonna try that).
He didn't take the time to explain so I don't know what I'm gonna be doing.

http://img4.imageshack.us/img4/2/xray1w.jpg
http://img27.imageshack.us/img27/5816/xray2.jpg

Here are my x-rays, I glued them to my monitor with duct tape and took a picture :).

the_trunk: I apologize for posting my stuff in your thread..

the_trunk
27th May 2009, 04:44 PM
Hi again guys!

I did send emails to a lot of different doctors!
Some of them have replied. And guess what, great news!! :D
For example:

"Thank-you for your email.



Mr Ember is a spinal consultant and has a lot of experience in correcting curvatures. Unfortunately he is away until Thursday of next week, so I am unable to ask him his opinion of your case as you describe in your email. However, I have spoken to the spinal nurse specialist here in the spinal unit in the meantime, and she assures me that it is untrue that you will not be considered for surgery unless your curvature is 60, and that you would indeed be a candidate with a curvature of 50."

And from another one:

"Thank you very much for your email. Mr Boeree has now had the opportunity to read your email and has replied as follows:

"Yes, it would be worthwhile travelling to the UK to see me if you wish. The basis of a decision is Not by any measure of the X-ray angle (and I would want to check that anyway) but the cosmetic/psychological impact the deformity has on the individual".


Yaay! :D:D (Oops, let's not get carried away now.. I always do and often get dissapointed, hehe)

The only question now is if I should just go to the first doctor I can find, or if I should pick and choose with care..
Do you think there is big differences between different clinics in how much an operation would cost, and of course the skill of the surgeon??

Take care y'all!

cherrybird
27th May 2009, 09:25 PM
Thats great that they have responded. I think it would be worthwhile researching the surgeons, and going with recommendations rather than going for the first one who says yes. It's great you have had some positive response it makes a great difference to your confidence. Good luck with researching.

mark
28th May 2009, 08:26 PM
Glad to read you been so lucky in finding surgeon's who are so positive. I wonder if we have a new debate here on private and state clinics, i've fought for years on the good old nhs for surgery with a curve of 100 degrees (ish), with lots of dissapointments, i wonder if i was linning there pockets with my hard earned cash i would have to fight so hard.

I'm not against private health care at all i just wish these surgeons would be as positive with state cases as well as private's then we would all be batting on a level playing field.

I know surgeons have to use nhs monies wisely but when i see certain proceduries being performed on the nhs it makes me so so so angry.

I hope you manage to find someone who is both willing, good and doesnt fleece your bank account too much

mark

mark
28th May 2009, 10:34 PM
just read my post back, i hope i didnt accross all sour grapes, i aren't and that wasnt my intention, i'm happy for you i really am, i just hate injustices and the post code lottery that is our wonderful health care service

ponkopalin
29th May 2009, 07:37 PM
the trunk: That is good news :). Do you have any word on price?

And to anyone... do my vertebrae look wedge shaped? :D