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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  • marmaduke

    Looking for others who have Syrinx

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    I am a 50 yr old woman who was born with issues. I have recently been told I have Syrinx in two places. I had a brain injery as well as a humped back and one of the places I have the syrinx is in a spot where it could make me become a quadrapelegic. I am already a parapelegic and I'm really scared! The second spot is near the base of the spine which is one reason I am in this chair. I have lots...
  • wontgiveup

    Thoracic Syrinx

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    This is my first post.  In Dec. '16 I had a neurostimulator implanted to help with pain caused by CRPS.  All the wonky feelings that were supposed to resolve, never did.  The stimulator helped with the CRPS pain, but after 7months, we had it explanted because of loss of sensation, altered sensation, bowel changes, wierd itching/burning in flanks.  With it removed, I was able to have an MRI...
  • kduckett

    26 year old female.. help. :(

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    Hey there, I am new to this group. I am a 26 year old single mom of a 3 year and a 1 year old. I am in Alberta, Canada. In September 2011 I was in a serious car accident that I should have died in. I have been in extreme pain in my mid andlower back ever since. In October 2016 my pain got even worse and I was getting numbness and tingling in my legs. My doctor diagnosed me with sciatica. She said...
  • JoshP

    Post from South Korea

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    Hi, I'm a 20 male in South Korea. I've just got here to ask some questions about syringomyelia. I have a syringomyelia near T-4 level of spine, and I found it last October. I had no symptoms at all until last September but I suffer legs weakness with the feeling my calf strained , and frequent peeing (5-7 oz per void).Anyway, in South Korea, we have an online group of syringomyelia (also for ACM...
  • kduckett

    Anybody in Alberta?

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    I am wondering if anybody else on here also lives in Alberta. I am looking for names of neurologists and neurosurgeons thatI can see about getting a referral to. I recently found out I am going to be waiting over 3 years to see neurologists in my area.. Considering I have waited 6 years to get to this point i cant imagine having to wait another 3, maybe even 4 years, just to see someone. I get no...
  • spken82

    New and need help. Syringomyelia, no Chiari

    I am new to this group. I'm a 35 year old stay at home mom living in Canada. I have 5 and 8 year old boys.I started experiencing symptoms 4 1/2 years ago (mainly dullness in left leg/foot and weird sensations that would jump around). Took a while to get in to see a neurologist, who gave me an MRI. I was convinced he would say I had MS because my symptoms were so similar. He says no MS, it's just...
  • Noluck2017

    Recently diagnosed

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    Hi, I've been having back pain for a few years now. Started with pain zinging down left leg and stopping at knee.  Lumbar was the outcome determined, which was diagnosed as lumbar facet joint arthritis and degenerative disc. Facet block injections seemed to help.  Over the course of the last year I started getting tingling, spasms, stabbing pain in mid back.  During that same time I had a...
  • 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...
  • 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...
  • FloridaGuy

    Syringomyelia, tethered Anteriorly.

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    Hi everyone, My name is Ian. I'm a 50 year old male who had a spnal cord injury the day after my high school graduation.My syringomyelia is at C-6,7  and It has tethered itself to the "dura". the inside wall. From the MRI image it looks like it is tethered in 1 place anteriority & 2 places posterior.My Neurosurgeon says he can un tether the posterior, but it is to risky to manipulate the spinal...
  • 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...
  • 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...