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Hoping to connect with others and get some clarity too

Hello, I have had scoliosis all my life I believe. It has progressed over the years, I am 54 years old. I also have a connective tissue disorder along the lines of Ehlers Danlos and/or Marfan Syndrome, though I don;t strictly fit the category of either one.  I began having some right leg weakness a few years ago, but didn't think too much of it/t wasn't bad. Around the fall of 2015 I developed foot drop in my right foot and it continues to this day. I can lift my toes, but not my foot, I can walk tiptoe and have strength in some areas of the foot, but cannot dorsiflex. At the time I began noticing it, I was about to have a second open heart surgery to replace my mitral valve, so I put looking into the foot problem on my to do list. I pointed it out to my doctor at the time and she said we would look into it after i recovered from heart surgery. I had x-rays done on my back in the spring of 2015 and I have severe  L5-S1 disc space narrowing, and severe lower lumbar facet
hypertrophy noted, among other mild and moderate abnormalities.  I was told at the time that there was not a surgical option for my problem, and that physical therapy and bracing if needed were going to be my best options.  I have been doing PT and have purchased a few different style braces. I asked the doctor again recently about the "no surgery" thing, and she said again that it would likely not lead to a good outcome for my problem and might even make things worse.  It is hard to walk normally and for long distances, and I have been gradually having more back discomfort, pain and twinges. I read on here so much about peoples surgeries and wonder still why it isn't recommended for me. Just curious if others have been told this and if they fully understand why. My doctor just says that the area of my problem would be a complicated and potentially dangerous surgery for fixing the nerve problem. thanks for listening! 


  • Raina5RRaina5 OregonPosts: 3
    Thanks  Kimmy72! :-)
  • Wal62WWal62 AustraliaPosts: 6

    Hi Raina5

    I'm new here to and 54 as well to boot, and living the "Pain Train". I had a S1,L4,L5 fusion 18 months ago after a very long history. Some might say my surgery was not a great success, trading one set of problems for another. Only I truly know that at that point I made the decision that was right for me then.

    I have noticed that there is some quite different approaches in Health Care Systems between Australia and The US, intricacies that I don't fully understand. My journey taught me a lot upon reflection, the most significant, not to stop looking and seeking advice. Whilst I don't advocate "Doctor Shopping" for the sake of it or medication accumulation etc. I do believe in seeking opinions from more than one specialist and pursuing various treatments if you can. You know your own body and there is definitely no one size fits all approach.

    Those reflections now have shown me that on my journey I met some good, not so good and downright not so good so called professionals. Keep pushing for answers and seek several professional opinions if you can. Learn to trust your "gut feeling". I have walked out on more than one consult because my gut told me to.

    Your health journey is not a single medical discipline approach and you will need to build "your team" as you progress. A good GP, surgeon, PT, chiro, family and friends or whatever as the case dictates

    I wish you well on your journey and I hope you progress with positivity and relief .

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