Is it not a cyst that forms on the spine which I assume puts pressure on the nerves? I would imagine that it would be extremely painful or cause a lot of numbing but shutting down the electric pulses to your brain. Do you have any paralysis?
No, I don't have any paralysis yet. So far just pain in my neck, back, shoulders, arms and lI have been diagnosed last June. Haven't met anybody with the disorder yet. The doctors don't know much about it. looking for somebody Who has Syringomyelia.
I have a syrinx, or syringomicil. it's actually a fluid filled cyst on the inside of the spinal cord as it gets bigger it starts causing numbness and tingling as it starts pressing up against the spinal cord. mine started with my hands tingling then eventually cramping up. severe headaches and back aches as well. I've had multiple surgeries for it and it's finally gone/under control. I get an MRI about once a year to check on it. they usually try to drain it and if are lucky that works and it doesn't come back....usually. mine did so then they put a shunt in to keep it continually draining. that seems to be working the best. I do remember I had surgery abòut 7-8 years ago. I'm trying to remember if my neuròsurgeon removed jùst a cyst which had developed or the syrinx, it totally worked and changed my life! check with your doctor if you have had an MRI and ask him if you have Arnold Chiari Malformation. it's where the back part of the brain tonsils (yep you have brain tonsils!) grow down into the whole in the skull where the brain and spinal cord connect. there isn't room when this happens do it causes syringes and headaches and all sorts of unpleasantness. surgery is the only way to correct it if you symptomatic. feel free to message me. I've got Spina Bifida and with over 30 surgeries, one-this being brain surgery, I'm pretty well versed in the subject. good luck!
klent- how fast was your progression of Syringomyelia? I have been diagnosed in June but have been noticing symptoms for last 2 years my syring is not very big yet 11 millimeters but I wonder how fast it grows?
Hi Swiderski19,Kent and Princess tibia !! I was diagnosed with Syringomyelia in 2004,my Syrinx went down my entire spinal cord. It was caused from a back injury. I had a herniated disk @L4 and an uprooted nerve @ S1. I had hurt my neck and upper back in the early 70's and learned how to live with the pain, I got hurt on the job in Jan.2001 and forced myself to continue working 12 hr shifts @ the hospital. I finally came to accept that I couldn't do it any and quit my job. I have gone to so many Dr.s trying to find out what was wrong with my back. I was seeing a pain specialist in late 2003 and he ordered a mri of my LS when I went in to get the results he told me I had an Syrinx and it looked like it was going up into my TS, I had a mri on my TS and sure enough it was there and looked like it was going up into my CS so I had another mri and sure enough it was there in my CS. He sent me to a local neurological surgeon and he told me I didn't need surgery, I asked for a second opinion and went to Tyler to see a surgeon there. He took one look @my mri and said that I needed surgery immediately on my CS 5,6,and7. He is a wonderful Dr. before he did my surgery he asked if I cared for him praying for my surgery him and the anitheisioligist both held my hands and had prayer.I wasn't scared anymore he replaced those vertibrae with cadavers put a titanium plate and 3 screws in. After my 6 wk. check up mri my Syrinx had drained and has not returned. I have a lot of nerve pain top to bottom, I have problems with my arms,hands,legs,and feet.I have a lot of back pain. Sorry for such a long note