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Intro: 20/F seeking opinions/feedback on scoliosis options

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  • Intro: 20/F seeking opinions/feedback on scoliosis options

    Greets! I am a 20 year old female in Phoenix AZ. I was diagnosed with scoliosis at age 10. At that time the curvature was 17 degrees. I was told that since the curve was less than 20 degrees, we would monitor the curve and consider bracing at a later time. I was given two basic stretches to do daily. Shortly after that, my family no longer had health insurance, so it was some years later until I saw a doctor.

    The next time I went to see a doctor was when I was 13. My curve was then measured at, I believe, 21 degrees. Still, since there was little monitoring between visits, bracing was not considered as an option. I was told that as long as I remained active, and continued doing the exercises and stretches, that they would simply monitor the curve. I next saw my PCP about 18-24 months later, because I was having spasms in my back. He referred me to an Orthopedic Surgeon who took x-rays and measured the curve at 38 degrees. They prescribed Ultram and ibuprofen for swelling and pain. This doctor was very adamant about surgery, and wanted to schedule something soon. I was young, and scared, so opted for physical therapy and a water aerobics class at my local gym. Two weeks later, I was in school, and stopped breathing. Went to the ER, and was prescribed Soma in place of the Ultram.

    I sought a second opinion several months after the first round of physical therapy didn’t seem to do much for pain/progression. I found a doctor at the Mayo Clinic who sent me to a physical therapist who had experience in the area of scoliosis. This doctor also suggested planning on surgery. The curve at this point was measured as 42 degrees. I was given a TENS unit, and went three days a week to the physical therapist. After physical therapy I had a child and discontinued treatment.

    Now, two years later, I am again seeking treatment because I am becoming severely symptomatic and it is beginning to significantly interfere with my quality of living.

    So far, there was little improvement from physical therapy. The TENS unit did seem to help with the pain while it was on, and just after it turned off. The water aerobics seemed again, only results while doing them. It gets worse when I sit for long periods of time, but notice that if I am active, my left arm goes numb below the elbow, and my feet swell.

    Pain, on a consistent day-to-day basis would rest between a 6 or 7 (on a scale fo 1 to 10). I do have bad days that could be called closer to an 8, or sometimes a 9. Medication now commonly used to control the pain is Lortab, and used at least once every two days; mostly once a day. I can’t use it at work because it makes me too tired.

    Most symptoms are in the back, between the shoulder blades on the left side, and the right side about 5-6 inches above my hips. It is not uncommon to have breathing difficulties and heaviness in my chest, as well as numbness/tingling in my left arm, and swollen feet.

    I saw another physician in March of 2006, who took x-rays, measured the curve as 48 degrees, and said that he wanted me to continue physical therapy, and come back for a re-evaluation in 6 more months. If the curve progressed significantly, surgery may be an option. Again I was prescribed Lortab for symptomatic control.

    I met with another physician this afternoon for a second opinion, seeking a provider that would be more aggressive aside from ‘watchful waiting’. As I did not have my x-rays with me, I was made to feel fortunate to have a total of 10 minutes of face-time with the physician. This doctor said that a curve progression of 1 degree per year is normal, and said that he may CONSIDER an MRI or bone scan contingent upon receiving my previous X-rays. In the end, he did not appear empathetic nor responsive to my request for aggressive treatment.

    In hindsight, I should have accepted the advice of my PCP in pursuing surgery. Now, it seems, I cannot locate a physician that will consider surgical intervention options, as each time I am met with the response, “wait and see.”

    While I’m gathering my medical records and X-rays, I’m seeking feedback, opinions and suggestions from members of this forum as to what I can do in the meantime to minimize pain (non-medicinally), and perhaps see if anyone may have any recommendations for a physician that may use a more aggressive treatment plan (i.e. surgery). Additionally, any feedback regarding chiropractic therapy (and recommendations) or other means of treatment would be appreciated.

    Thanks in advance for your replies.

  • #2
    Hi Mustang...

    Welcome.

    Since you're in a lot of pain, I think you're probably pursuing surgery because you see it as somewhat of an instant fix. While surgery usually does resolve pain, it's not guaranteed. And, the surgery can actually cause more pain. I don't want to scare you away from surgery. I just want you to be sure to consider what a huge step it is. A good surgeon will not rush you into surgery without considering other therapies first.

    You can find a list of scoliosis specialists here:

    http://www.srs.org/directory/directory.asp

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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    • #3
      Hi
      I was seeing a dr. who specialized in Osteopathic Manipulative Medicine. He used a combination of treatments that helped me. Chiropractic, accupressure, massage etc..... I also used a heating pad. My scoliosis was always progressing though, so I felt I had to have surgery and may return to him in a year or so because he also made my headaches practically nonexistent.
      Jenn
      37 y/o female
      60 degree lumbar
      45 degree thoracic
      1st time anterior/posterior surgery May 8th and 10th 2006
      T 5 to S 1
      NYC

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      • #4
        Remember to rule out other causes of symptoms before surgery

        Hi,

        I'm 23 years old and finished bracing for scoliosis 7 years ago when I was 16. At that time my (thoracic) curvature was 31 degrees and I haven't had it checked since then. I have had moderate to severe pain on and off between my shoulders and in my neck since then, which has gradually worsened, and am often tired.

        Like you, I have considered surgery on and off, and my orthopaedist recommended it to me initially (I was put off the idea because of a congenital heart defect which has been operated on three times). In my case, some of the symptoms (tiredness) might be caused by my heart disease.

        However, a relative of mine has been diagnosed with fibromyalgia, characterised by painful muscles, tingling and pins and needles, mental confusion, tiredness etc (the National Fibromyalgia Foundation has more information). Fibromyalgia is a syndrome (which actually exists) similar to chronic fatigue syndrome. The symptoms come and go, and generally do not worsen. I just thought I'd mention this to illustrate the point that scoliosis might mask other medical conditions that cause pain and neurological symptoms. When you consider surgery for the purpose of relieving symptoms, it's important to rule out other causes and conditions, otherwise you will be dissapointed (and still in pain) when surgery does not fix the problem.

        For myself, I have found yoga and light weights helpful, (and a massage when I can get it)! Although I love the idea of standing straight and tall after surgery, I don't think I would go through with it unless it was a last resort (at the moment I'm still to cowardly to get a follow up xray, but I will soon, I promise!)

        Comment


        • #5
          Thank you to all who replied to my post. Thank you very much for welcoming me into your forum, and for sharing any information that may be helpful. I am so glad to have found such a knowledgeable group of people on this subject. Although I have dealt with it for the majority of my life, I have mostly ignored it, (and my doctors) Thank you from the bottom of my heart! The information you have all provided is greatly appreciated. I look forward to talking with you all more in the recent future.

          Kendace

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