Syrinx or Syringomyelia

MangoAmanda
MangoAmanda Posts: 22 Member
edited November 9 in Health and Weight Loss
Hi all,

I don't know where else to post this, and I did a search in the forum, and found no topics on this. I was just diagnosed with a T4-T5 "mild" Syrinx. This was found after a VERY bad slip on the ice that resulted in daily pain, numbness, tingling, burning, icy sensations from my toes to my face... muscle weakness & spasms in my full back, the list goes on. Good news is that they found no tumors/cancer, so it's most likely from the trauma for the accident, so I'm remaining optimistic. I also have a good website that on the subject that I've signed on to, but I figure, the more the merrier, for information out there.

I'm wondering if anyone else out there has the same thing, and what you are doing to help it. I'm more interested in handling the pain with natural method... diet and exercise. My strength has greatly decreased... I cannot run at all anymore, only walk, and weights are extremely difficult as I start to shake even doing evil squats and lunges without weights now. Yoga is OUT as I just shake the whole entire time doing it, but pilates seems to be fine. I use to be go hard or go home, but that has completely changed (and I miss it)

Thanks so much for any advise, and best wishes.

Replies

  • MangoAmanda
    MangoAmanda Posts: 22 Member
    bump
  • MrsSWW
    MrsSWW Posts: 1,585 Member
    bump
  • irenec8
    irenec8 Posts: 13 Member
    Hey Amanda,

    I was just diagnosed with ideopathic SM 2 1/2 months ago. I didn't not suffer a trauma, there is no tumor or chiari malformation. I too have had my back muscles spasm and tingling in my hands, shooting pains in the arms and legs making it difficult for me to walk or lay down. I have headaches daily that develop into migraines. I am on an an anticonvulsant called Gabapentin which helps with nerve pain and headaches. I also have my back up meds for muscle spasms and my migraines. I too was an extremely active person. My day job as a case manager in NYC requires I take the train a lot and walk A LOT to patient homes. I exercised regularly on top of that. I'm looking into foods that will help me manage the chronic pain. I hear cranberries have not only antioxidant properties, but are also helpful in those who experience chronic pain. I'm meeting with a physical therapist soon so I can learn how to strengthen my body in safe ways. If you aren't already doing so, I would suggest that you seek a PT who specializes in neuropathic disorders and spinal cord injuries. I agree that I would prefer not to go the medicinal route, but in the meantime, I will do what I need to do while finding the right strategy that works for me. Please keep me posted on how you're doing.

    Most importantly, you're not alone. Stay strong!
  • scrappy25
    scrappy25 Posts: 77 Member
    If it's mild it's probably just and imaging finding and not clinically symptomatic, especially if you didn't have any symptoms before your trauma. I work in imaging and we follow patients for decades with mild syringohydromyelia including some of our techs and they havn't changed or become symptomatic. Best wishes.
  • irenec8
    irenec8 Posts: 13 Member
    Yes, fortunately some people's syrinxs do not progress and some patients are also asymptomatic. For some, it could be coincidence that a syrinx is found during imaging and the patient could potentially be suffering from a plenitude of issues that could potentially be the cause of their symptoms. However, for people who are symptomatic, it's good to discuss the ways in which we can reduce those symptoms despite syrinx growth and/or worsening of neurological symptoms.
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