Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

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  • CJS6571

    Torso numbness?

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    greetings all. Yesterday about mid-day my lower left back went numb. It feels like i got a half-shot if Novocain.  I can still feel touch, pain, hot, cold, but it has that feeling that it is going numb.Has anyone had lower back/side of torso numbness like this?my nero thinks my syrinx (c5-t10; 2mm at its wideat) is idiopathic and most likely asymptotic. They are doing an emg Thursday and brain...
  • KaranRobert2012

    Numbness to weakness

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    My husband has dealt with SM for over 12 years. Recently he has become very weak in his legs and some shortness of breath. He has had numerous tests to rule out heart issues and pulmonary issues. We believe it is his SM. We have almost one year old twins and wonder if picking them up and holding them has caused it to progress. He needs an MRI (just need to convince him to find a new dr and get...
  • jsj43

    Surgery results...?

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    Hello, just signed up to give and recieve any info on syringomyelia and the syrinx's we have.. Ive been through 6 mri's to monitor a sryinx found in my thoracic region. Have a ct scan this friday and a second opionion next week with a specialist. Ive read a few post realated to pain and symptoms on here but not much about having spinal decompression surgery, results of it, recovery, etc.. Has...
  • CJS6571

    Excellent video

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    If you haven't seen it, this is a great video that will surely help in understanding syringomyelia...maybe even worth sharing with our docshttps://www.youtube.com/watch?v=CNSCBfNPw7EThis one is much shorter, but not nearly as good:https://www.youtube.com/watch?v=IDER_L_z5Go
  • Megan0123

    Back Stiffness & Pain

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    Does anyone else experience lower back pain and stiffness while trying to sleep at night? I toss and turn all night because my back is sore. When I wake up in the morning it is so stiff. Once I start moving around it improves. I thought sleep and rest was supposed to make you feel better?!
  • Shevan

    Syringomyelia no chiari

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    I am new here to looking for info and people with similar symptoms. I do that have a chiari formation. The nuerosurgeon days my syrinx is to small for surgery but I seem this be loosing more and more feeling and strength in my hands every week. My feet have also started to go numb lately. I have pain in my torso and left shoulder blade. Stomach pain. Pain lime I have worked out when I haven't in...
  • Canuck1

    My story and what has helped

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    The interesting part of my story is the fact that while I have had symptoms for the past 40+ years, I wasn't actually diagnosed formally (via MRI) with having a Syrinx until I was mid 40's.  I may have been born with my Syrinx as it turns out and there is no sign of cerebrual leakage....it's just there.Over the years, I have seen a variety of doctors and specialists that assumed countless...
  • Jess31

    Syrinx failure?

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    i am new to the group and wondering if anyone has experienced similar symptoms. I have chiari malformation and syringomyelia and a vp shunt and syringo peritoneal shunt. The syrinx did decrease slightly in size after the syrinx shunt surgery but I think it is now failing. I have many of the usual chiari & syrinx symptoms but recently the back pain and pains in my arms have got worse. I know my...
  • Roni

    Adult tethered spinal cord with syrinx below L1

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    I am a 66 yr old woman with the above condition.  I have recently experienced a severe burning pain that begins in my lower back and rushes down my thighs.  I believe it is from the syrinx.  It leaves me nauseated and breathless, but passes in seconds.  I am now afraid to do any meaningful excercise and I would NEVER
  • Sam94

    meeting people I can relate to!

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    hello everyone! Im a 22 year old female, I was diagnosed with syringomyelia when I was around 13/14. My syrinx runs down a large portion of my spine.I had a decompression pretty quickly after the diagnosis as I had lost all my reflexes and could touch hot things. The decompression was a success and the syrinx decreased by 50%! My reflexes also returned and I can no longer touch hot things! I...
  • ellahollander

    Struggling and need some encouragement

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    I'm a 13 year old girl and was just diagnosed with syringomyeila. No one knows what caused it. The doctors can't fix me and all of my friends are being so weird. It's hard to because I have never even met someone with Syringomyeila and I just want someone who knows what I'm going through. Being in middle school is hard enough but when you add this- I'm just struggling. If you have any experience...
  • Megan0123

    Syringomyelia and Chiropractic Work

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    Has anyone, that has been diagnosed with syringomyelia, ever been treated by a Chiropractor? I am looking into seeing one but am unsure if it is safe to do so when a syrinx is present. I've had one person tell me they cannot be treated by a Chiropractor because of her cyst on her spine. I wasn't sure if this is just specific to her health issues or if this meant that anyone with a cyst on their...
  • Page90

    Lumbar/thoracic syrinx

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    I was diagnosed in June with syringomyelia. I do not have Chiari malformation (my regular doctor had a brain MRI done last year thinking my symptoms were coming from there rather than my back, and it was normal). A lumbar MRI this June revealed a syrinx from L5 up and continuing off the MRI so I don't know exactly how long it is, my neurosurgeon just ordered a full spine MRI to see. But he...
  • agarman84

    Feeling Lost

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    Hi! I'm a 32 year old female who was diagnosed with syringmyelia 11 years ago. As this time has gone on I now have chroic pain with my left shoulder being the worst. My syrinx is the entire length of my thoracic spine. My issue is, every doctor and specialist says syrinxes don't cause pain. I call that BS! I just feel lost any more as my pain interferes with my daily life. 
  • flowerqueen

    New to this looking for support

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    this page seemed to have the most people I can relate to .