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bjune
1st January 2008, 04:03 PM
Hello to all! I see a lot of frustration in many people here, not unlike what I have gone through. I was told that I had a herniated thoracic disc and "mild" kyphosis six years ago. After months of trying to locate the source of my pain which was a wrap around the ribs type. I have had back pain for way more years than I can even tell you. Back then, I was told by a neurosurgon and an orthopaedic surgeon to just live with it. Now, six years later, I have tried chiropractic, massage, acupuncture and various medications. My pain is often time unbearable. I am on Oxicotin (10mg every 8 hours) I take Soma at bedtime as well as clonipin. I take Piroxicam every morning along with my Oxicotin. My pain is so intense that I catch myself holding my breath. I feel like I have a board stuck through my back coming out my chest. My kyphotic curve currently measures at 83 degrees. I wasn't told the degree six years ago, so I do not know if there is an increase. I drove 6 hours last week on icey roads to see a doctor that I hoped could offer me some kind of a word of incouragement. Didn't happen. He flat out told me that I would have to continue to live with it. I know the surgery to correct Kyphosis is "MAJOR", and I really don't WANT to have to go through that, but sometime I can't help but wonder, could it really help? Please if there is anyone that has had this done....I really do need advise

Thaleias spirit
1st January 2008, 04:12 PM
Hi there

I had a consultant tell me that once also, to just live with the scoliosis, that it couldn't get worse. Under advise from another consultant and people here i went to someone else who proved to be the person I did need and eventually had surgery done in 2006 for a 155 degree curvature.

I totally empathise with how frustrated you are feeling right now. Taking so much medications to try dull pain that bad is never good.

Can I ask where in the world you are? Someone here might just be able to point you in the direction of a consultant who might be able to help you with this.

chele

Simon
1st January 2008, 04:15 PM
hiya
so sorry your going though the pain i and many people on here can relate to it.
am not a expert but i think you need to go and see some other doctor one that specilises on complex spines.
were are you living as am sure there is lots of people on here who can suggest some hospitals
am having the operation this year and to tell you the truth i can not wait to have it done afte
r the many years i have had kyphosis.
keep smiling and am sure you will get the welcome like i did on here they are great.
i only joined this group 2 days ago and i have had a lots of support already.
simon

bjune
1st January 2008, 04:36 PM
Thank you for such quick replies! I live in Southcentral Kansas. The Doc I went to last week was in Kansas City.

Simon
1st January 2008, 04:42 PM
hi
am sure someone from this site will point you in the right direction am in the uk so aint got a clue about kansas.
Its a bit quiet in the forum due to xmas holidays but check back every day and someone will point you in the right direction
i hope you get on ok keep us informaed as i will to.....

GillyG
1st January 2008, 04:50 PM
Hi there to bjune and Simon :welcome:

I can't be much specific help to either of you as I have scoliosis, (for which I had very successful surgery 1 year 4 months ago aged 49) but I wanted to welcome you both to the site anyway. In actual fact my notes have refered to both thoracolumbar scoliosis and kyphoscoliosis, so I guess I'm a bit of both!

bjune - I would definitely echo the others in trying to seek out a spinal expert who may be able to give you more options. The amount and strength of medication you are currently taking would seem to be a poor option long-term, especially since you still have major problems with pain. Many of us on the site have been told previously that nothing can be done before finally finding a confident and competent surgeon who was willing to help. Don't give up.

Simon - I wish you the very best of luck with your upcoming surgery, I hope you have as fantastic an outcome as many of us on here are enjoying! :D

Happy New Year to all :spin:

Gilly xx

titch
1st January 2008, 11:39 PM
I'm not too hot on my US geography (and in any case, I know sometimes places quite far away are easier to get to than nearer ones due to better flight connections for example), but some doctors I know of who deal with extremely complex adult scoliosis revision surgery cases, which require the same kind of specialised techniques that are used in treating particularly complex kyphosis cases, are:
Dr Keith Bridwell, St Louis
Dr Frank Rand, Boston
Dr Mike LaGrone, Amarillo
Drs Serena Hu, Sigurd Berven & Vedat Deviren, San Francisco
Dr Oheneba Boachie-Adjei, New York
Dr Thomas Errico, New York & New Jersey
Dr Anant Kumar, Denver
Dr Stephen Ondra, Chicago

Many of the patients they deal with are people who have been told, even by respected surgeons (who simply do not all deal with these kinds of cases) that nothing can be done, or even that essentially nothing is wrong, so I would hope that one or more of them would be able to help you.

Meanwhile, welcome to SSo - I'm sorry for the pain and problems that have brought you here, but now you are here, we're with you all the way :-)

Amazed Jean
2nd January 2008, 12:55 AM
Welcome to SSO. Always nice to get another member on this side of the pond. I really think you should try to see a scoliosis specialist. Check with your insurance for who is close or call Twin City Spine Center in Minneapolis and see if you can get an appointment with Jon Lonstein. He is very knowledgeable and doesn't pull any punches. I am sure there are some good scoliosis guys in St. Louis but I haven't really looked. Just getting on the internet should give you some names to call.