Severe Scoliosis curve over 100 degrees!!

[Koelrich]

Please help me find other people who are around my age (24), But WITH SEVERE Scoliosis I NEED TO KNOW if there is anyone out there whom I can relate to my curve was last @ 100+ 1 year ago. I can't go on like this because I am unable to manage my pain. If you look at my other post. I am in the Pain Clinic, I am taking my meds, etc. My Meds used to work pretty well, but THIS Winter has been SOOO bad. I have fell on the ICE a few times. I live on my own I am still able to walk upright (with Crutches). I used to be able to not have to use my crutches inside my apt. But Lately anything I can do I try when I am at home, to relieve the pain. Last July I was hit almost head-On by a Drunk Driver. (all that I got was a broken Nose) But!! My back has not been the same since. The EMT said because I had extra pillows around me when I drive, that is what saved me from snapping my back in the wreck. I have tried the usual list of things that other people talk about from the Pain Clinic. I am unable to get up in the morning, I feel like puking when the pain gets really bad. I am not going to let myself get to the point where I have to use a wheelchair. I used one when I was in High school when I had my left leg removed below the knee. When I got better, to were I did not use a chair again. I told myself I don't want to get that bad again. My Muscles went down very fast and it was 100 times harder to do things when I became upright again. I know that if I looses my muscles I am going to be dealing with a LOT MORE PAIN!. I wont be able to get that far. My pain level even with my pain meds (methadone, oxycodone, Diazepam) and heat belt in a normal day is a 7 out of 10. When My back is at its worst 8 to 9.5 At one point after I first visited the Pain Clinic last year I remember my pain really was easy to deal with. Like at a 4 maybe 5 on a bad day!! I don't know why (I guess I had a tolerance built-up) but that low pain number did not last long. Even when they increased my pain meds, my PAIN SEEMED TO INCREASE TOO? Because I can't get back to that point. I had cancer when I was younger and I remember them giving me medication that was put in by a timer and the machine sat on the bed next to me and it was VERY loud and it shook the bed when it would turn on every once in a while or when I pressed the button. I was like 6 or 7 years old at the time. I know beyond a shadow of a doubt, My pain level NOW is no where ever even close to what I remember it being when I was younger. I just don't want to hurt like this anymore. I would Like to know what Specific (Please list, or whatever) I am going to take the notes to my DOC. next apt, and start asking about anything you all can come-up with that you have had positive results. I am on a cancellation list hopefully with any luck they will call me Today (Monday) and tell me to come in and they will fit me in. Other wise my scheduled isn’t until the end of April.
Please remember, and I say this with ALL Respect to your situation but if you do not have SEVERE Scoliosis at least around 100 degrees, please let other people who have had the same condition. P.S. already tried injections of all sorts in my back already. If you can relate and there is nothing that you have found to help.. then let me know that too. Because I am sick in tired of listing to some doctors that Think that if they are not completely honest about how bad my (entire situation, not just Scoliosis) is So when I look for support I can't find people to relate to because they think if they don’t tell me how bad I am maybe I wont realize it on my own. My Point?? I have to go back to the Heart Clinic on wedsday, to do more studies (I was there 3 weeks ago) But I guess My heart is sitting sideways in my chest and is not showing much or very little difference between the time I am stressed, as sitting still. I did not know My heart was this way. My lungs are compressed THIS I can FEEL. So I have a TON of problems (there are other things too, but this is all that I am willing to share at this point), all I am looking for is to get back to a point where dealing with it is not AS BAD AS ... just deciding NOT to deal with this crap anymore!... I am not saying I wish to do this but, this is NOT living this is only sustaining for the moment.


Thank You, (sorry for such a long post, but I am in desperate need of advice)


ALSO even if there is a Hospital somewhere in the USA or Canada Mexico (I'll find a way to get there HELL OR HIGH WATER!! if the doctors know more than Stuart L Weinstein MD (who is my Orthopedic Surgeon) and Venkateswara Karuparthy, MD (who is my Pain Clinic Doctor) or are at least willing to go out a limb and try something unique.

Thanks again,
Kevin Oelrich

[txmarinemom]

Kevin, I don't have a 100° curve (I just had surgery on a mere 53° one 10 days ago), but I've got to ask you this anyway ...

Why are you dealing with pain mgmt vs. surgery on a 100° curve?? I noticed you didn't mention surgery at all - past or planned. Is there some reason you *can't* have surgery?

I realize Weinstein is the only SRS doc showing in Iowa City (and only 2 in the entire *state* ... remind me never to get sick there!), but bolting to another country to seek another opinion is a bit overkill. Looking at your age age (24, right?) and Weinstein's specialties (Adolescent, Juvenile/Infantile), I'd have to guess he's not the best doc for you even IF things weren't so urgent.

Don't give up, kiddo; if status quo isn't working, YOU have to take control and try something new.

Search MO, IL, MI and WI ... all easily within a day's drive. There are quite a few people on here I've seen mention Lenke, Bridwell and a few others in St. Louis - and I'm sure they'll speak up.

Pick the doctors, make initial calls, explain the urgency (100° will *probably* garner accellerated scheduling), set your appointments (be sure to grab your films, medical records, reports, *everything* from IA City so you can tell your new consults what you already have to save time and money) and hit the road.

Keep us posted, and best of luck!

Regards,
Pam

[CHRIS WBS]

Pam,

If you read his earlier posts, you will learn that this poor young man has already undergone two major back surgeries. And it's apparent from his post that he is dealing with many other physical impediments in addition to his scoliosis.

[Wishing]

Dear Kevin,

I'm glad you reached out to let us know of your distress. I'm sorry you have to deal with such pain and have to cope with so much. I wish you the very best and keep up the good fight until you have your situation under control. While it appears you have many complex issues, there has to be help for your situation.
I do not have the extent of issues you have. My primary high thoracic curve is 91 degrees, has severe restrictive lung disease, use a Bi-pap at night, have some pain but not uncontrollable, and I am flying out from Los Angeles to see Dr.Lawrence Lenke in St.Louis, Mo. this week. He has a lot of experience dealing with patients with severe scoliosis and also revision surgery. A consult with him might be worthwhile. Perhaps writing a letter to him explaining your complex medical and pain issues would be of help. You could discuss this with your orthopedist or primary care physician. I'm sure Dr.Weinstein and Dr.Lenke are colleagues and are familiar with each other's work. Perhaps your doctor could refer you to him or you could contact Dr.Lenke directly if you wished to do so. Or perhaps you might find another scoliosis expert to consult.
As far as dealing with your pain, I can't offer much help.I can merely offer some suggestions for you. There must be a cause of this severe pain. Have they discovered the cause? Is an MRI in order? I think the pain is a symptom of an underlying cause that must be addressed. It appears that your are at a threshold of having severe difficulty coping with your pain. I hope you get in to see your doctor today. It seems that you are at a crisis point and must see a doctor right away. Go to the E.R. if you have to, get the appropriate intervention and have them make an appt. ASAP to the appropriate doctor. Other questions come to mind: 1) Do you have an internist or PCP (primary care provider) who is coordinating your care. Maybe you should see him to have a review of your total medical situation and medications. Sometimes care can get fragmented between a variety of specialists. Perhaps you could ask him for a Treatment Team Review where all the experts dealing with your case could meet and discuss your medical management and plan and coordinate a future course of care. I don't know if they do this, but I know there is such a thing as Treatment Team Meetings. There is always a first time, and you could insist on it and periodic ongoing Treatment Team Meetings. Sometimes the right hand does not know what the left hand is doing and at times the complete medical record does not always show up when it is supposed to. 2) Do you have family or social support in dealing with these issues or in emotionally supporting you or in offering you some physical help? This is alot for a young person to cope with. Yank on some chains is you have to. Yank on a lot of chains. Keep us informed of your progress. 3) There is a big emotional side to dealing with all of this and it is hard not to get depressed. In fact, I think it would be normal to get depressed at times or to have difficulty overcoming feeling down. If this is an issue for you, it is important to discuss this with your doctor and get help.
This is all I can think of to offer you at this time. Keep up the good fight and be your own best advocate. I hope one day you'll look back and be able to say that most of this grief is in the past.

[Koelrich]

Don't Fight I just want help! I am sorry PAM that I did not "tell my whole story" in every POST I have over 43 charts in my records just at the UHIC alone. So It is a very unreasonable for me to each time I ask for help to give a full review of my history. I am thankful to everyone who posts for all of your ideas of what I should do. I am seeking to go ANYWHERE, just to get relief. I am 100% sure that if you call ANY! of the Doctors or (Med students, lol) they will know who you are talking about. If ask them if they know who Kevin Oelrich is they wont have to "Check their records" to recall what my case was about. It is a mixed basket, on one hand all of the problems gives me a sort of "Celebrity" but This is not the kind of Fame that I wish to have. I plan on donating my body to Science, maybe someday they can find something form my many related/non-related problems that I have been dealing with all my life to help someone wayy before it gets to the point of no return. My doctors used to use "ME" to punish or teach the med students a lesson by reviewing my ENITIRE medical history. Even when I had 20 charts. Which means they would have to dig through ALL of my Charts. When a snotty Med student first comes in to where you can tell that they learn to respect you and in turn RESPECT ALLL patients from their on, because they look like a deer in the headlights when they are mulling through all my records.
So, sometimes it is necessary to cross reference some of my posts if you are unclear about a certain point that I have made. Eventually you will get the whole story if you read all of my posts. But I still haven’t even came close to sharing all of my problems past/present. Like Prostate cancer when I was 4 ½ years old.
I am still playing the waiting game with my Pain Clinic. I was hoping to get in early this week So I am crossing my fingers. I’ll let you all know what they are going to do for me as soon as I am able to get in.

Thank You,
Kevin Oelrich

[Sherie]

www.spinal-deformity-surgeon.com/

Kevin

I'm so sorry to hear of your situation. My daughter just had surgery with Dr. Lenke in St. Louis, I posted a link to his website above. There are before and after pictures/xrays of some of his patients who have curves >100 deg under "Patient stories". He does many complex revision surgeries, people travel from all over the country to see him. He does about 250 surgeries/year. Please take a few minutes to check him out. I hope you can post here someday with a success story. Best wishes to you.

[txmarinemom]

As I've said since my first post on the topic, I hope you find the help you need.

[Koelrich]

As I've said since my first post on the topic, I hope you find the help you need.

I'm done posting; quite possibly for good. Without a doubt, I can do without *this*.

I don't quite see what you are saying. But I guess the interpretation of the words can be a direct result of the situation that the individual is dealing with.
I know I may have misunderstood your intentions, but I guess Everyone deals with the stress of their Scoliosis in their own unique way.
PLEASE, POST ANYTHING YOU CAN THINK OF THAT MAY BE OF USE . I am taking the notes to my Doctor, as soon as I get in. I am going to share your tips with him and we are going to find something that I can do, or some other kind of medication that I can take to help me with this.


THANK YOU, to everyone who has posted something of use. Please continue to do so I need all the help, hints, tips, or whatever you are willing to share about your situation.

Kevin Oelrich

P.S. Texas good luck with your recovery. I hope that you and EVERYONE else for that matter to get a handle on your Scoliosis before it gets out of hand.

[Susie*Bee]

Kevin--I too want to wish you the best in your search for relief and help. There have been many good suggestions and it sounds like you have a plan. Please keep us posted on how things go--and above all, hang in there!

I also sincerely believe txmm was not trying to be negative. She has been a help to so many on the forum. I hope you can see the positives about her sometime. That's said, I'm done for now on that subject. Let sleeping dogs lie...

I'll be praying for you, Kevin. You've had quite a life--and the type of notoriety no one would wish for. Again, hang in there. It will get better.

[ElleBelleCurvz]

hmm well kevin, i m truly sorry about any pain you have and sorry about how people have been fighting like this, ive had it happen recently as well...well anyways i actually agree to go get a 2nd opinion in the us, i wuld suggest minnesota as well, i live there and ive heard that theres som great surgeons, i read this one girl had 2nd bigget curve at 120 something and it got fixed at age two at gilettes childrens ;) hoping for the best, and im really sorry about how much pain you have :( i hope you can get a good surgeon somewhere or some kind of medication to help you along , im praying for u :)

[lelc2002@yahoo]

Hi Kevin- I had a 95 degree curve which was reduced to 60 by Dr. Boachie in NYC. If you check on the Discovery Channel site, you will see
he had done a young boy's surgery on "Surgery saved My Life "series. I believe his curve was more than 100, quite an extreme case. He is another surgeon that has experience with extreme cases.
Lynne

(fused T11-L5) Aug 2006

[Geish]

Kevin I do hope that you are able to get the help and pain relief that you need. That being said I feel like I need to defend TexasMM as well. She was not attacking you, and based on what I read in the first post I would have had no idea that you had prior surgery either. I also do not go researching posts from members to see if I can find out about their history. I believe she was trying to help and she was also protecting herself from someone that appeared to be trying to make her look stupid or uncaring for not doing said research. Please don't think I am attacking either. It would be a pity if we lose members from this board because they feel like their opinions are not welcome.

[Koelrich]

Kevin I do hope that you are able to get the help and pain relief that you need. That being said I feel like I need to defend TexasMM as well. She was not attacking you, and based on what I read in the first post I would have had no idea that you had prior surgery either. I also do not go researching posts from members to see if I can find out about their history. I believe she was trying to help and she was also protecting herself from someone that appeared to be trying to make her look stupid or uncaring for not doing said research. Please don't think I am attacking either. It would be a pity if we lose members from this board because they feel like their opinions are not welcome.

I understand what you are saying I just thought what TexasMM said was kinda rude. In my case I have too many problems to list. So I guess I failed because I did not post everything every time I post anything.

Thank You for you support though, I do appreciate it very much, please do misunderstand.

Thank You,
Kevin O

[Susie*Bee]

Kevin, I know I was going to leave this alone, but need to say something more too. Sometimes when we read the written word, we don't quite take it the way it was meant. And sometimes when we're not feeling well (that would include many of us--you and TXmm who just had her surgery a little over a week ago), people can be overly sensitive. I think that's what went wrong today. You were asking for help and she was trying to give some. It's just you both were on different wave lengths. Pam did nothing wrong--she was trying to be helpful.

I truly hope this works out. Maybe after everyone gets a good night's sleep it won't seem as big a deal. Everyone on the forum is here because they belong. We all have scoliosis and we all have needs to "talk" on this forum. The best thing about it is the sharing. Hopefully it is mostly sharing in a positive way and encouraging those that need it. It should also be a place where we can find acceptance. We all have enough going against us without finding it here too. I hope that you can understand what I'm trying to communicate. I'm not directing this just at you--but just in general-- let's try to find the positives and not dwell on the negatives when we read people's posts.

Again, keep us posted on how it goes with yor doctor search and all.

[Geish]

Susie*Bee I am so glad you are so much more eloquent than I am...your post is what I was trying to say. Thank you for the wonderful post. :)

[mariaf]

Kevin,

I haven't been on the boards much this weekend but I wanted to comment on this thread when I saw it.

First of all, I wish you all the best in finding help....truly. My son has scoliosis so I can feel for anyone suffering from it and they all have a special place in my heart.

I agree with the others that TXmm was not trying to be rude to you. I think as someone said the written word can be a misinterpreted sometimes. (Is it possible that you took what she said differently than it was meant?)

TXmm is a big help and support time and time again to members on this forum. I think you two just got off on the wrong foot. (She, understandably, did not realize you had prior surgery - and then things just kinda went downhill from there).

I agree that to lose anyone as a member would be sad. We are all here to help and support each other.

[Koelrich]

EVERYONE
Please list some of the medications that you have had that you would recommend using to get relief from the awful pain of Scoliosis.

Thank You,
Kevin
I am already taking 5mg Methadone(x3), 5/325mg Oxycodone (x4), Diazepam 5mg (x2). I already told them I wanted to discontinue the Diazepam because it is not helping my pain, its just making me tired.

[skoshi314]

I am here to get help for my Scoliosis. If I wanted to chat to a overweight, depressed, physic-O then I would go to MSN.


I AM HERE TO GET ADVICE !!!!!!!
I TRIED TO FIX THE PROBLEM, I asked several times to get back to the subject, but I guess this is not what I am going to get form this site. I am NOT GOING TO CHECK THIS ANYMORE, SO ANY FURTHER POST ARE A WASTE OF TIME!!! THERE ARE PERSONS ON THIS SITE WHO ARE HELL BENT ON MAKING THE LIVES OF OTHERS HARDER, even when they are at the end of their rope and are here as a last resort............. check the papers do whatever the hell you want I am out
Kevin,
Just in case you check, please remember that in most every situation, a person will get out of it what they put into it. I can promise you will not make any friends or get any helpful information if you CHOOSE to be rude and insulting. Unless you know someone personally, you have no right to make the above comments. EVERYONE I have encounted on this board has been kind, helpful, compassionate and so very willing to share their experiences with the only possible benefit being helping others. If you are willing to be one of those kind, helpful, compassionate and willing people then great, stay and benefit. If not, move on.

[Susie*Bee]

I think it's past time to begin a moratorium on this particular thread. Kevin, if you check again on this one, why don't you start a new thread about the meds you wanted input on.

Florence Littauer (sp?) wrote a book about silver packages--and I heard her speak about it once too, at a conference. But it was all about how words can be so exciting and thrilling and delightful-- like opening up a little present wrapped beautifully in silver paper, with silver ribbon and baubles-- and how it can buoy you up and help you through otherwise rough times, etc. Or words can be like the destructive sibling who comes and wrecks all you have been working on as you build a fantastic castle from your wooden blocks. Hours spent building; a mere second to destroy it all. Encouraging words; destructive words. This thread evolved into that destructive mode yesterday. We need to move back to the silver packages that have been built here--that is our strong point. The trust, acceptance, caring, sharing, understanding... the feeling that we are unified, regardless of whether we always agree with each other or not, because we are all battling this shared condition.

Everyone--let's just move on the best we can. We can't undo the emotional damage that both Kevin and Pam are having-- and all of us too, for that matter, but we can choose to start today as a new day and put aside these differences and move on. I think we can all learn from this episode.

[trulyaries]

Kevin -
Sorry I'm so late in posting but my drugs knockd me out last night at 8 p.m. If you are still checking, I think the advice one of the posters gave you is a good one - try to get a Treatment Team with all of your doctors. My feeling when I read your first post was that you might have a myriad of problems we don't know about that might be beyond the scope of this site, which may explain why your doctors are reluctant to operate on a 100 degree curve. They need to treat you in totality, not piecemeal. When someone who is suffering the way you are, it affects your body and mind. So lashing out the way you did is understandable, but not acceptable. I have been on this forum for 7 years and have never seen such a personal angry attack on another member, deserved or not.

And in my opinion, TXMM did not deserve it. Yes she is outspoken, yes she is fiery, yes she's the "pull yourself up by your bootstraps" kind of person, but she is also full of compassion and a wonderful source of information on this site, since she has been through so much herself. I suspected, then checked, and sure enough she is a Scorpio, and Scorpios sting back when attacked. That doesn't mean that she can't be hurt like the rest of us. I for one will start a 'Bring Pam back' thread because she has livened up this forum like no other.

[LorDon]

I know we are trying to move on here, BUT.....I feel compelled to reply to this vicious and unwarranted attack on Pam. I wholeheartedly agree with the ladies who have posted before me who bring many valid points to the table. Pam has a tremendous amount of knowledge and compassion that she freely gives to others and perhaps you (Kevin) should go back and read some of her old posts to see what I am referring to. Pam has a heart of gold and didn't deserve the attack that you launched.

All the best to you Kevin in your quest to find relief from your pain.

[Koelrich]

I tried to get back to the POINT that I needed to get information ON EVERYONE keeps LOOKING AT WHAT I SAID TO HER!!! BUT DO YOU NOT SEE THAT I first posted, she was very RUDE FIRST!!!, I CHANGED WHAT I POSTED, SHE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!


DID NOT LEAVE IT ALONE!!! SHE KEPT GOING ONN AND ONNN SOOOO SINCE THIS SITE STILLL IS ONNNN POOR PAM (I am not a mean person, all my life I have been on the short end of the stick. I am sorry about what I said, but IF I CHANGE WHAT I SAID ( even though you can on this site) she will keep nagging on me about it, SHE STARTED IT I outright ASKED MANY TIMES TO GET BACK TO THE FIRST QUESTIONS THAT I HAD. no one would get back even though I changed what I posted, I ASKED HER TO NO LONGER POST. I tried to resolve it between us on the PM section, but she still had to spit in my face "DOES THIS MEAN YOU ARE GOING TO STOP pm'ING ME!!!!!! Still NO ONE HAS BEEN GIVING ME SPECIFIC answers, SOOO since I already fixed my original post about her.... SHE HAS AND I GUESS ALWAYS WILL BE THE GOLDEN CHILD of everyone. you all are blind at my point of view on this. I checked today hoping it would be left alone and maybe with hope someone would answer my questions about meds, docs, other hospitals, but just a 1 or 2 people did and that was before all this was going on. EVERYONE HERE IT IS


PAM I AM SORRY
PAM I AM SORRY
PAM I AM SORRY
PAM I AM SORRY
PAM I AM SORRY
PAM I AM SORRY
PAM I AM SORRY
PAM I AM SORRY

WHAT DO YOU ALL WANT FROM ME I fixed it and you still will torch me. IF I FIX IT AGAIN SHE WILL HUNT ME DOWN AND KILL MY FAMILY!!! I am sorry but I thought I would be helped form the SCOLIOSIS WEBSITE where else can I go for this many people in one place, I DUNNO but (I am not just trying to pity myself) But, I cannot find people who are in a situation where my back is The former Pres of the Ortho association would not even operate on me, there is nothing left to do , I tired many times no one seems to care. PAM good luck on your recovery there are a lot of people who support you. I wasn't even looking for that I just needed something to share with my doc. I just got a call, I got on here to see what to tell him tomorrow, but I guess my apt @ 9:30 is just going to be another wall to throw tomatoes at and see what happens before my next appt with the clinic.
Like I said I am not a rude person, I may have been very rude about what I posted about PAM personally but I was not wrong obviously. I am only 85 lbs I don’t have a weight problem, but I can telll when such person starts to sit in font of their computer for so many hours a day and they have nothing else to do but hinder someone else’s search for a last chance (for me) to get the information I wanted because I am tired of being this way. everyone else has hope about fixing their situation I already have had surgeries and there is nothing UHIC said they could do, I attempted to look elsewhere. I am going to try to get in to the Saint Louis doc, I am going to ask for a referral. I don’t know if my Iowa Title 19 will cover it because when I tried to go to the MAYO in MN for other things they eventually told me they were no longer going to accept my CARD. I am out of options NOW I am out of sprit and I am done with asking for help. I am going to let things go like the UHIC wants me to do I guess, But if I get in to the Saint Louis Doc. Then I am even willing to move out of State to get what I need. because it is too damn cold In IOWA to live with this many problems. Now I know why my grandparents always went south for the winters. Good luck to everyone (even Pam like I tried to say before.)

Kevin Oelrich

[Sherie]

Kevin

I'm not going to get into all of this, I'm here to offer a suggestion.

Dr. Lenke trains fellows and he also travels around the country teaching pedicle screw placement, he's also made videos for manufacturers of the hardware he uses. In fact, he approached us about videotaping my daughter's surgery for teaching purposes but my husband didn't feel comfortable with it and the date didn't work out for us anyways. My point is, if Dr. Lenke is willing to take you on, maybe you can get some of the financial costs covered because of your unique case. I'm not sure the best way to approach this other than being right up front about your insurance and financial situation. Just a thought......

[scooter950]

Hi Kevin-

I couldn't read all the posts, and I don't know your entire history, but my suggestion is- has any doctor discussed an implantable pain pump? It's surgically implanted under the skin on your abdomen (or upper chest wall or back) and a concentrated narcotic is slowly released into your bloodstream. It is used to control chronic intractable pain. There's also the patches for severe pain- straight narcotic patches and plus you take oral narcotics for "break thru" pain.
You just have to be careful not to overdose- and patients have told me that they get used to the narcotic, they do not get "high", but they are able to function. It usually takes a higher dose in order get the pain under control initially, then the drug delivery is maintained at a steady rate. The implantable pump has to be recharged about once a month- which a nurse dies, with a needle and palpation, to feel where the entry site is before the med is injected.
I am so sorry you are suffering from such horrific pain, and I pray that you find relief soon. May God bless you and help you find relief- Jamie

[Writer]

Kevin,

Yours is an extraordinary case, but there are some others in that league. There are some things you can do. Here are Before-During-After photos of one woman who managed to get significant help when she was about your age.

http://www.schrothmethod.com/about.html

She was treated at the original Schroth clinic in Germany. They have the most experience dealing with a case this severe.

www.skoliose.com

If you can't get to Germany, there are two Schroth clinics in Wisconsin, probably the closest to you. Among other things the method is often effective at increasing vital capacity (lungs), which you've indicated is a complication in your case.

http://sdwpt.com/

http://www.scoliosisrehab.com/

They may suggest a brace, though it's usually prescribed for kids in the growing age. A brace properly fitted could reduce the abnormal loads on your torso and hence relieve pain. Here's a clinic where they have scoliosis experience.

http://www.prostheticsolutions.org/about.html

Best of luck to you.

[Aussiemum]

Hi Kevin,

I don't know if this is going to be any use to you what so ever but here in Australia we have a young girl called Emelina who's curve also reached 102 degrees and she had successful surgery. I know every case is different and I don't know your whole story either.

But if your interested she has a very comprehensive site www.emelinasscoliosis.com if your interested in having a read through!

All the best to you, wish I could be of some help.

Cheers
Del
xx

[CHRIS WBS]

Thank you so much for bringing our attention to this beautiful website. What a moving and inspiring account of this young girl’s heroic and courageous journey. I spent my lunch time the other day reading her site and it had me so choked up I began to cry. I love how she has dedicated her site to St. Gemma and her testimony to signs she received that this saint was watching over her. I’m quite familiar with the life of St. Gemma. I myself have had a life-long devotion to St. Therese and have also received revelations from this powerful intercessor before God who has been directing me through prayer. Both saints lived to only age 24. I’ve sent an email to this young lady to compliment her on her beautiful website and to let her know how much she has touched my life. Once again, thank you.

[jullie]

I also have 100 degree curve and I'm am on oxxygen 24/7 because it compresses my lungs i HOPE YOU CAN FIND HOPE AND HELP i'M 28 AND LIVE IN mn. AND MY DOCTORS AT THE tWIN CITY Sine Center say there is nothing they can do for me I had a full fusion done in 92. I still manage to keep volenteering and doing what I can so I do'nt get to depressed. I will keep you in my thoughts. please keep me posted.