Flat back and leg pain

[Jilly]

I am new to this forum and it has been very helpful. I had surgery in 1962 at age 12. I was the 13th person to have Harrington rods with Dr. Louis Goldstein. Original curve was 67 degrees and I am fused from T7-L2. There are no local doctors who treat older adults. The orthopedic surgeons and rehabilitation docs can't seem to get past the -"what do you expect at your age?" "If you lost weight you wouldn't have these problems." answers. I am having increasing problems with shortened muscles in my thigh and calf due to flat back syndrome. Physical therapy gave me some good stretches and strengthening exercises. I go monthly for therapeutic massage with quad stretching. I am trying at all costs to avoid revision surgery. I have had periods of extreme pain and muscle spasms over the years but thankfully right now I am relatively pain free. Greatest discomfort is legs - I can't walk any distance without pain and my hips and knees are effected. Since this is a new phase of living with scoliosis I am still adjusting to the long term outlook. I am discouraged - thought I had taken care of this 43 years ago! Now I am faced with it effecting my life once again. I work fulltime and have never allowed my back to interfere or slow me down - now I feel like that is changing. I am open to suggestions, commiseration and support.

[LindaRacine]

Hi Jilly...

I'm sort of in the same boat, although I don't have flatback. I have periods of more intense pain, and during those periods, I wonder why I'm waiting. Then, I'll be somewhat normal (having pain on and off every day, but I can live with it), and think I should avoid more surgery for as long as possible.

I can tell you that I've known several people who avoided surgery too long, and who ended up with permanent nerve damage that causes pain in their legs. That would be the best reason, in my mind, to have surgery now rather than later.

My advice would be to start looking into traveling to see a surgeon who treats a lot of flatback. Even if you've decided to definitely not have surgery, it might be helpful to know what it is you're avoiding. Where do you live?

Regards,
Linda