I have Syringomyelia. I had a sucessful surgical procedure at UCLA Medical several years ago to stop the upward progression of the cyst into my cervical area at C-7. Like so many others with tramatic Syringomyelia it took years of severe pain and many doctor visits before my diagnosis. I was a very active T-5 Paraplegic with a full time job, a Masters in Rehabilitation Counseling and a girlfriend with two young kids I was helping to raise when I started getting extreme pain in my lower back in 2004. It got to a point where I would go to work, spend my lunch break stretched out in my car, finish work, drive home and crawl into bed because I could not sit up any longer, the pain consumed my entire life. Then I started loosing strength and sensation in my upper limbs that really scared me. It was very frustrating being told I shouldn't have pain below my original level of injury, it must be psychological, there is nothing we can do. Finally after several MRIs I was told I had Syringomyelia. My cyst started at T-11 (previous archnoiditis from a failed Baclofen pump appeared to be starting point) and had grown all the way up to C-7. The longer I sat in my chair the more fluid would fill the cyst putting more and more pressure on my spine causing the pain. The UCLA surgery was sucessful in curtailing the growth but I can no longer sit in my chair for long periods of time without lying down to relieve the pressure and pain. I had to go out on permanent disability and drastically change my life style. I now live with three to four good days a week and three days very limited activity out of bed. Is it an ideal situation, absolutely not, buy my family and I make it work.
Wheelin, I wish you would try using a zapper. They reduce the quantity of bacteria in your body overall. The electrical current does not penetrate organs (or, for example, your liver or your spine), but the reduction in bacteria seems to help your own immune system get caught up on killing the rest of the bacteria that shouldn’t be there. My theory is that the zapper would give you some pain relief if bad bacteria has anything to do with the pain you are experiencing. My zapper is a Syncrozap ($300), but my spare zapper is from ctbusters.com ($35),...very basic.
Post by missnicole on Sept 16, 2019 14:28:18 GMT -8
I've been to multiple specialists and different neurosurgeons that believe this is syringomyelia with hydromyelia and that the shape of the syrinx is unusual which one thought there was a tumor. I have had chiari decompression done to see if that would help get rid of it/make it smaller. Still waiting to see what my results are. Does anyone else have a different shape to their syrinxs?