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Scoliosis- confused, worried and scared

Hello guys,

Wondering if anyone could help. I was diagnosed with Scoliosis at the age of 13, I am now nearly 20. When I was younger my doctor did not want me to get the operation done because he thought I might grow out of it as I grow taller.

About a year ago i've started to get terrible back pain, and i've only just started to go back through the channels of seeing the specialist etc! The operation is looking highly likely as my curve is now more pronounced than ever and my rib cage is twisted. I've had to stop working (I am a professional horse rider) for obvious reasons, but I am feeling so lost and alone at the moment.

I was wondering if the surgery would be a good option? Can anyone share some experiences with me(good and bad all welcome)?

Thank you in advance for your help.


  • LizLiz Posts: 7,832
    edited 08/07/2014 - 10:12 AM
  • Hi Chanel,

    I had the spinal fusion surgery at the age of 15. At the time, my curve was 40 degrees. After surgery it was corrected to only 9 degrees. This was fine for a few years, but because I was still growing, my curve worsened to 23 degrees by the time I was 19. I applaud you for making the decision to go through the proper channels to see a specialist, but I do want to warn you that not all orthopedic specialists are specialists at scoliosis. Make sure you do your research on what conditions they specialize in. Discuss in length with your doctor the pros and cons of having surgery. This was a step that I missed out on because I was still a minor and very in shock with the diagnosis (I was diagnosed on 2/16/95, and had surgery on 3/14/1995, just 29 days later!). The recovery time from the spinal fusion surgery is extensive, but if your condition has already caused you to have to stop working, this may not be an issue for you. Once the bone fuses together, you can likely return to your normal activities. I am a dancer, and only stopped dancing for about 6 months after my initial spinal fusion surgery. Because I was so active and so thin, I did have some trouble with the hardware, and had that removed 7 years later. If you are thin, this may also be a point of discussion with your doctor.
    If you have any other questions, please feel free to contact me through a private message, and I can give you any other specifics you may have about my experiences!
    Good luck!
  • Dear Channel,

    I was diagnosed with scoliosis at age of 13. It was present in LS region, about 40 degrees and the surgery was recommended. At that time, the physiatrist (who was wife of an orthopedist) said that she can't do more with exercise and that curvature can be only remedied by orthosis or surgery. She directed me to her husband who decided I should wear an orthosis and recommended to get examined by his friend, who was spine surgeon. After I started to wear orthosis, that surgeon recommended the surgery to remedy the curvature, but the problem was that he sought additional money. Although we have health insurance in my country that would cover such a surgery, doctors abuse their position and guarantee success only if they get additionally paid, usually by parents of their younger patients. As my family did not have such a money I did not get the surgery.

    However, I did not get any kind of other treatments since I was told that, except surgery nothing can be done! Thus, I did not seek doctors anymore, lived with mild pain until my 30's and then it started to get much worse and nasty. Now, at age of 32, I have severe "S" THL scoliosis, curvature of 50 degrees in each direction, accompanied with degenerative disease of whole spine, pain syndrome of whole spine, and also shortened i.v. space in the neck causing number of different painful and neurological effects.

    Now I, however, learned that there is number of options that can be offered by physical therapy and, to great extent it is helpful. The surgery is reserved as the last resort only if nothing would help. These methods of treatment were, of course, available when I was 13, but not offered from obvious reason. At this time, it is more difficult to get better than it was 20 years ago...

    Since my whole spine is affected, result of any kind of surgery is uncertain. If I, for example, go for a surgery in LS region to get rid of the pain from sciatica, and even if successful, the very next day I can get another nerve pressed by another disc that is affected by degenerative disease and then it would start all over again. Personally, I don't find going to dozen of surgeries as an option.

    What I do is an intensive physical therapy: electrical stimulation, use of heat, medical exercise and swimming (min 2 hours per day), pain relief and sedatives. I also adjusted my bed with a strong board to sleep better. I kinda find that way of life at this point more acceptable than life in the hospitals.

    What you can try to do is to find more medical opinions on your condition and also exhaust all possible alternatives prior deciding for a surgery.

    Hope you'll successfully cope! :)
    Scoliosis vertebrae THL
    Sy CC et CB
    Sy THS
    Sy LS chr
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