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 problems were either nerve damage or mental. Starting at 17, I began having less feeling and burning sensation in my right thigh. I would have other symptoms such as gall bladder area pain, amonth other. As I have gotten older, the symptoms seems to have gotten worse and some of the treatments that seem to alleviate pain are becoming more frequent. I recently went through an extenstive nerve conduction test and the doctor determined I apparently have lost sensation in my ankles..didn't really notice. Anyways, what has worked and what hasn't worked over the years:
What has worked: (In order of preference)
1. Cortizone shots to affected area in back - This has varied but typically mid back (more on why down below)
2. Shiatzu massage/massage - Massage done right can be amazing.
3. Traditional Accupuncture - Visited a doctor in Ottawa, Canada that would use over 30+ gold tips in a session, followed by heat lamp that was amazing.
3. Pain and muscle relaxants - The current cocktail of choice is Baclofen and Diclofenac. I have been on everyting from Lyrica to countless others that really did little for me. I use meds as last resort. I was completely against muscle relaxants up until a recent bout where simply put..if the nerve acts up, you will likely have muscle tension that exaserbates the problem. Baclofen has helped get me over the hump.
I do not support or suggest watching out for:
1. Chiropractors - A chiropractor actually introduced pain in mid back through heavy manipulation. I am confident this made things worse for me.
2. Physio - Did NOTHING and found accupunture (from Physio specifically) or electrical muscle stimulation more painful or useless.
3. Be careful of aggressive Spinal Surgeons - I have seen multiple neurologists, neurosurgeons, spinal therapists..etc. Based on concensus and everything I read, only do decompression as a last resort. I have nothing planned and will hold off even with symptoms getting worse.
4. Flying is brutal, take care of yourself - I don't completely know why and have heard conflicting stories about what is the cause or net impact. But, I have had situations where I lost sensation and had severe back pain on extensive round the world travel for work. Travel is a fact of life, suggest booking yourself in for a massage, getting the extended leg room..whatever. And, what how you sleep (position) on the plane.
I could go on and and on with some of the successes and horror stories. But, the one thing I want to stress for all is there is NO ONE ANSWER to solving your problems. What I would ask of the group is simple: Are there any clinical trials, experiments..some facility in the US that has a clue on Syrinx treatment?
Hi there, I'm a 30 yr old wife & mother of 3, I found out about my syringomyelia about 1 1/2 yrs ago, after complaining of neck pain I was orderd a MRI, well nuero symptoms weren't too far behind. I have a very large syrinx at C4 - T2 and it takes up the entire width of my spinal cord. I have extreme pain in my neck and upper back, numbness & tingling in both arms and sometimes my legs. I have...