Need some feedback

[philfista]

I have scoliosis , two 90 degree bends ,nice. My pelvis and shoulders are level which is the only good thing. Doctors will not fix it so im looking for another type of cure. What do you think? Has anybody tried this?

http://www.erikamaude.com/welcome.html

[FiniteJane]

Hi Philfista,

I contacted the erika maude clinic several months ago. They emailed me an information form and a price form (I've attached them for you). I tried contacting them several times after that and have gotten no response. Erika's clinic uses the Katharina Schroth Method - I don't know too much about this except that it involves lots of exercises and rotational breathing. I found a clinic in the US that follows the same method. They have been excellent in answering my questions. Their address is: Scoliosis Rehab Inc. http://www.scoliosisrehab.com/

I plan on trying treatments from Dr Woggon – Clear Institute and from Scoliosis Rehab Inc.

[Cakedec]

Why won't they fix it?

Dear Philfista,

What doctors did you see for your scoliosis? Were they scoliosis specialists?It seems strange that they wouldn't want to fix two 90 degree curves as that is when it may effect your lung function. Do you know that your curves can keep progressing?

Not sure about your age, or how the scoliosis is affecting you, but I would encourage you to keep looking for another dr. to treat your curves. The older you are before surgery, the less they will be able to straighten them out to. My curves were 70 and 76 and at age 47, they were only able to straighten them out to 40 and 46 degrees. So I hope you don't wait too long!!

You can try exercise and it does help you feel better, but it won't straighten your back! Good luck and let us know how your treatments go.

Deb

[macky]

I totally agree with Deb. I think it would be good for you to get a second opinion from an orthopaedic specialist.

Macky

[philfista]

I know it sounds strange i show non of the normal symptoms. my lung test came up to 110% for my age. I train in the gym and still manage to deadlift 300 pounds.
In clothes you would never know I had Scoliosis.

They were so facinated in my back the sent me to the top man in London who could not believe it. So because of that they won't do anything about it.

I keep telling them im not that bothered now but what happens in 20-30 years when im not that fit and my recovery is slow.

I could go private but that loads of money.

Im going round in circles.

[macky]

Just had to say I am stuck for words. I honestly have never heard of anyone like that before. Really interesting. How old are you Philfista??

Macky

[philfista]

Im 35 . I am going to continue to search for a cure. I was told in the past not to exercise as this would make my back worse. I stoped for a while which i feel made my back worse. So i started exercise again and it feels better. I think that most doctors don't know what they are talking about.

Because I dig holes in the road all day this put lots of strain on my back which seems to help. This may sound strange but I do 10 shovels on my left side and 10 on my right to keep me balanced and it works. Over the last year i have managed to take some of the strain off the painfull side of my back by packing the otherside with a little muscle.

This is why I think exercise is the way to go .

[gerbo]

no way will exercise do anything substantial to two 90 degree curves.

Why not ask your GP to send you for a second opinion in a different hospital, he/she can easily do that.

[gardenjen]

Schroth program

Philfista-
I will be taking my 22 year old daughter to ScoliosisRehab for two weeks beginning on 9/25. We don't expect changes in "Cobb angles" at her age (although we would be happily surprised if there are) but hope that she can maintain current curves/slow progression with the program. Checked into SOS in London. Much less expensive in London than WI, but timing won't work for us. I agree that exercise is worth trying - and seems to be standard care in many European countries (at least Germany, Spain, and now the UK), but likely most effective when the exerciser is young (<18) and flexible. I'm pretty sure I've read about people on this website that have curves of >/=
90 degrees reduced to considerably smaller numbers with surgery, though. Hopefully one of those experienced readers will comment.
-Jen
Chelsea, MI, US
P.S. Deb/Cakedec: So glad to read about how well you've been doing. You've been in my thoughts daily!

[sweetness514]

Just had to say I am stuck for words. I honestly have never heard of anyone like that before. Really interesting. How old are you Philfista??

Macky

I know a woman who had the surgery like me by the same doctor, and her brother has a 90 degree curve, he's middle aged and is doing very well. I'm really not surprised by anything when it comes to any health issues, it's amazing how we are all so different.

[Karen Ocker]

curves 90/90

Even though you seem to be doing well with such large curves your discs are being worn unevenly and in time it will indeed cause nerve pain. And you will probably progress--you could reach 100deg in 10 years.
I had a major curve at 14 of 100 deg and it was terrible.

I agree with the other suggestions.

[macky]

Sweetness, I think it is good isnt it ,that we are all so different. Then there can be hope for nearly everyone.
I get so pleased when I hear of people doing so well without surgery. I do like reading your posts, you have a great way with words. Yours truly here just plods along.
Phil you said you saw the top man in London. I gather that he would have been a scoliosis specialist. Just wondering did he have any comments about the future and when you get older, what effect your scoliosis would have on you then?

Macky

[sweetness514]

Macky,

you truly make me feel good, you're so sweet I actually like to post on forums b/c I'm a Francophone first and ever since I write online I learn so much and practice my English.

[philfista]

The Doc did'nt say much about the future . They are just going to monitor it each year. Usual lecture . Not sure what my next plan of attack is yet. Anybody else have the same problem.

[titaniumed]

Philphista,

Usually if a patient presents themselves on the board, one of the first questions I have is "How old are they?" So, I looked at your profile,
found your website, and you say" in 1997 around my 11th birthday" which would mean that you were born in 1986? So that should make you about 23 right?

http://www.erikamaude.com/partI.html

Quote from your website:
In 1997 around my 11th birthday my mother noticed a slight hump on my right shoulder when I bent forwards. We consulted our GP who dismissed it saying that he had seen a lot worse and not to worry. My mother consulted the Internet and thought maybe I had Marfan's syndrome - she persuaded our GP to refer me to Dr Child, who said I had not got Marfan's but scoliosis, which should be carefully monitored. It was not.

On your post dated 08/28/06,on this board, you mention that you are 35 yrs old.

Im 35 . I am going to continue to search for a cure. I was told in the past not to exercise as this would make my back worse. I stoped for a while which i feel made my back worse. So i started exercise again and it feels better. I think that most doctors don't know what they are talking about.

Because I dig holes in the road all day this put lots of strain on my back which seems to help. This may sound strange but I do 10 shovels on my left side and 10 on my right to keep me balanced and it works. Over the last year i have managed to take some of the strain off the painfull side of my back by packing the otherside with a little muscle.

This is why I think exercise is the way to go .

Please correct me if Im wrong here, my math sure has gottten rusty in my old age. Im 50, the new 30, so I really dont know my own age sometimes LOL

Ed