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onebabyfrog
04-13-2004, 07:28 PM
Hello,
I am new.... so I hope I am doing this right.
I was diagnosed at 8 with adsolescent idopathic scoliosis.(excuse the spelling....please)
My mom and step dad picked gravity inversion as the treatment. Well that did nothing. I have a lower curve and a upper twisted curve.
Since age 16 I have lost 3 inches in height. I don't remember the degrees but I see another Doctor Monday and will ask since I just had X-rays done again friday.
I am now 38 and now I have degenerative joint disease in my spine.Some days it is so bad I can barely move . I have always had back pain and have been on a lot of different meds, nothing works for a long time.


:confused: Where do I begin looking for new treatments and possibly surgical treatment if necessary. I am desperate to find relief. The doctors in this small town think celebrex and a heating pad is the answer to every ache.

MaryK
04-23-2004, 12:37 AM
There is a holistic method that might help while you search for options. The aromatherapy oil called helichrysum helps with pain. My dad has neuropathy that causes a great deal of pain, he's on ssi disability now. The helichrysum lessons the pain a great deal allowing him to sleep. drive, and sit comfortablly. I would suggest reading up on it first, but it might help. You rub a few drops on the affected area. Helichrysum is one of the oils okay to use on the skin.

I also suggest finding a surgeon outside of town that will take you seriously. There are other painrelevers! There are also injections that help in some cases. I don't know what herrington rods could do for you, but it couldn't hurt to ask about it. I've also read that relaxation exercises help with dealing with pain. Deep breathing is one that is mentioned often in articles. It's difficult at first, but relaxation techniques do help!

God bless!

Maggiebelle
04-26-2004, 11:22 PM
I wish you luck and I am curious if the degenerative joint problem is related to scoliosis. Please let me know. Thank you and good luck.

Danite
05-05-2004, 09:48 AM
Good morning, I'm so glad that I discovered this NSF Forum as an Individual with Scoliosis and a survivor of Spinal Fusion, it is very comforting and sad that this service is necessary. Scoliosis has many faces as we all know, I recieved the first Spinal Fusion in the State of Michigan in 1954. It was an experimental surgery with only an estimated 50-50% chance of success, and less then that of ever walking again. After over ten hours of surgery and many specialist, I became a live experiment and a sample for the Hospital.
I do not have any kind of metal or rod in my back, and presently my curvature has become much more noticeable and painful. I only take Ibuprofen 600mg for some form of pain control by choice. I can not walk, sit or stand very long without changing my position, and I'm presently employed full-time as a Vocational Rehabilitation Counselor. Buying a home and have two wonderful daughters, one with Scoliosis.
I would like to ask that if you know of any non-profit, disabiity rights organization, or agencies that is looking for an Advocate or leader for their fight for inclusion of individuals with Scoliosis, please forward then my email or reply to this posting.
Thank you and dream the American Dream, fight for your rights and inclusion. Never say never.

Susan101
05-28-2004, 08:38 AM
Originally posted by onebabyfrog
Hello,
I am new.... so I hope I am doing this right.
I was diagnosed at 8 with adsolescent idopathic scoliosis.(excuse the spelling....please)
My mom and step dad picked gravity inversion as the treatment. Well that did nothing. I have a lower curve and a upper twisted curve.
Since age 16 I have lost 3 inches in height. I don't remember the degrees but I see another Doctor Monday and will ask since I just had X-rays done again friday.
I am now 38 and now I have degenerative joint disease in my spine.Some days it is so bad I can barely move . I have always had back pain and have been on a lot of different meds, nothing works for a long time.


:confused: Where do I begin looking for new treatments and possibly surgical treatment if necessary. I am desperate to find relief. The doctors in this small town think celebrex and a heating pad is the answer to every ache.


hello, although I am a lot older than you I have two daughters of 17 and 22. I am sorry to hear you are still getting a lot of pain and discomfort.

I would advise getting in touch with the Royal National Orthopaedic hospital, Stanmore, Middlesex, England. They are extremely good with scoliosis treatment. My operation was 35 years ago, and afterwards all the pain I had felt before went. You would have to get permission through your doctor to have them communicate with you. But I think it would be worth it.

Susan101
05-28-2004, 08:40 AM
P.s when I was there I saw a lot of girls from other countries being treated(altough I expect there would be a cost)