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curvy
28th October 2005, 06:35 AM
Hello from California, Scheumanns

I am beginning to understand why there needs to be different forums. With all the different types of spinal differences(hate to call them deformaties)
Mark, I have been reading your story and we have very similar stories. I was just diagnosed with Schuemanns Disease(Kyphosis with minor scoliosis).

The Drs did find a "curve" in my spine when I was a teenanger but for some reason I became defiant and rebellious and refused to wear a brace...well theres seems to be no proof that is works. Anyways to make a long story short. I am now 44 been to several Drs over the years...even had an Othapedic physician tell me my pain is caused by depression geese slightly before your age around 31. Even my Ex husband said I should have my back checked out!
Been through drugs, physical therapy, chiropractors, you name it.

So because of the pain and other symptoms, I saw a Dr last week who again mentioned all the non-surgical thingies :yawn: :nut: and did mention new enhancements to surgery :clap: but gave me all the resources to research....life in California now with malpractice suits so high but a good thing to do research first on my own....Anyways went through MRI and X-rays and plan to go see one more Dr. from Stanford Hospital (known to have the best Drs!) so............ I hope its ok to go on and on now for the hopefully useful info that I found out so far.......................
1) More history shows that Kyphosis does progress over the years even with a brace so this maybe the deciding factor to get the surgery done when your younger especially if the pain is high
2)www.iscoliosis.com gives the latest techniques....its geared more towards the less younger than me haha only per winkle but a wealth of info.
3) Seems the greatest complaint of surgery is the bone graph.....which the pain can be more severe than our disease....well on this site there is something about this new synthetic that they use BMP :-? check it out seems most patients bodies respond well.
4) VAST less invasive...they cut 4-5 incisions enter through the side with microscopes than may either do anterior posterior or both depending on severity.
5) I have sooooooooo many more questions BUT the good news is the above mentioned seems to work well on Kyphosis. phew well thats it for now I already missed Survivor .

I am new as of today so I hope to definitely find more people. It seems to me how crazy it is that they are still even doing "bone" graphs....we really need to do our HOMEWORK and of course not to mention I AM SCARED SHITLESS about this surgery....hope to log in again soon...

:rox:

mark
28th October 2005, 09:39 AM
Hi Curvy

:welcome: to SSo i hope you stick around we have a few on here with Scheuemann's who post on regular basis, Johns just come out of surgery last week for a 90% curve, he should be back home this week, so hopefully he will be upto posting his experiences

Read his surgery thread in general his partner has been keeping us up to date with his progress through Marmyte (Becky)

Try not to worry about the surgery (iknow easier said than done) we are all here to give you all the support you need.

feel free to post anything we are a wacky old bunch here

BeckyH
28th October 2005, 12:16 PM
glad to see you here curvy after we met on NSF. latest news on john is that he should be out of hospital tomorrow. i know he'll be pleased to have another fellow sheuermanns (i've really got to learn how to spell that) and his story is pretty interesting - he chickened out of surgery twice before he had it last week! but i visited him a week ago and even at 3 days post op he was saying how glad he was that he'd finally gone through with it.

because i had anterior surgery, my bone graft came from a rib the doctors removed and i went for an appointment this week and have been given the go ahead to return to normal - i'm 15 weeks post op tomorrow! recovery isn't normally quite so quick, my surgery has been pretty minimal but if you have any more questions, feel free to ask

sins
28th October 2005, 03:00 PM
Welcome Curvy!
It's good to see you over here on SSO.Hope you enjoy being part of our friendly community.
Sins

tonibunny
28th October 2005, 05:18 PM
Welcome to SSO Curvy! I'm glad you've found us :-)

:welcome2:

Abbi
28th October 2005, 08:04 PM
Hi Curvy! :welcome2:

Little Ali
28th October 2005, 09:03 PM
Hiya! :wave:

mark
28th October 2005, 09:14 PM
Hello Curvy, Andy is all so a new member and has sheuermann's he as posted a picture of his back in the welcome thread for him in the General forum.

Hope you are getting used to the site

mark

curvy
29th October 2005, 03:19 AM
Hi ALL, :wave:

Thanks for the warm welcome :squeeze:

Becky can you ask John how long he will need someone at home to help him change dressing and things like that. Im divorced so live alone. I plan on staying with family but don't know how long I will need too.

Well I will definitely keep in touch. And Becky please tell John even the newcombers have him in their thoughts and wish him the best. :bestwishes:

Anyways I need to wait for my first Dr to get back from a seminar and surgery to sit down and have a question and answer meeting ugh not for another 2 wks and I need to wait for him to schedule an appointment with the physician at Staford. By all means if anyone has any questions relating to Schuemanns let me know hahah I may have the answer too..... done so much research :surfin:

Well the weekend is finally here.... :cheers:

Oh and my name is Christina

BeckyH
29th October 2005, 02:57 PM
christina - depending on what your doctors/nurses say, i'd imagine you'll have dressings on for no more than 3 weeks after surgery (and you'll be spending at least one of those weeks in hospital) but really, i'd urge you to get nurses to deal with them, as they're used to it and will be quicker and more skilled than family members. i don't know if you have similar in the states but here we can have a nurse come out to see us and change dressings and do a wound check in our home if we can't get out to see them.

you'll not be allowed to bend, twist, lift etc for MINIMUM 6 weeks so that's how long you'll probably need help. it also depends on how quickly you feel better and how soon a surgeon lifts restrictions. i know that after a few weeks some people manage on their own if they have somebody to stock their freezer for them - even getting showered and dressed is a huge challenge at first and you also get very tired (you'll have a shower and want to go back to bed)

hope i've not frightened you, i'm just trying to be realistic :-) i felt better pretty quickly, but i have a lot of things on my side: i'm 18, i had my family looking after me, i only had 5 vertebrae fused and i'm very determined

Amazed Jean
29th October 2005, 07:24 PM
Curvy, Welcome. I live in the state of confusion and in Oklahoma. I'm 54 and would really like to hear how things are going for you. good Luck!

sins
5th January 2006, 01:10 AM
has anyone heard if Christina has had surgery yet? Just wondering!
Thanks,
Sins