I just joined Connect. I really know nothing how it works. Was reading some posts & suddenly there was an empty block to "comment" in so here I am. I am 72 years old. Had tingling & aching down right arm for about 6 months when I was 48y/o. The did cardiac workup and numerous other testing with no diagnosis. Finally sent me to a Physical Therapist who after 2 weeks called the ortho who was seeing mee & told him I need an MRI & that something was wrong beyond her, in my back. Diagnosed 4 days later with Syringomyelia. While treatment decisions were being made I sneezed & lost most of the feeling in rt arm. I began having episodes of falling & the pain in my back increased. The neurosurgeon removed a benign tumor that was at C4 to C6 inside the cord. Emptied the syringes that were C4 to T2 & lower T into higher Lumber(can't remember exact spot for 2nd syrinx. Too lazy to look in the mounds of medical paper work I have) Hospital X3wks and Sister Kenny Rehab X4wks at Abbott Northwestern Hosp Mpls,Mn. Had to learn to essentially walk again. Have about 70% feeling in my feet now as I do in the rest of my body from breathing line down. What I do have is a neuropathy type feeling in a lot of the rest of the body which I take only a little med for as I have kind of gotten used to it. The other thing I have is pain in my back. Lower area, in the linear muscles that run up & down each side of my spide & then across the width of my back about where my bra strap runs.
I judge the pain high at first & was treated with narcotics
(Now referred to as Opiods) But after 6 months or a year I think between the continuing PT, my own regular swimming 3/wk, trying to walk as much as pain would let me and getting over the shock that I would live with pain for the rest of my life.....I was able to settle to a routine of life with a small amount of narcotics and obtain a pain level of 3 out of 10. Another important thing I learned was to pace myself, use ice everyday & take a nap everyday. This made it all manageable. But I did not make back to work. I had bee the Co-Director RN of a County Public Health Agency working 40 to 50 hours a week. I could not do it . I count my blessings everyday that I am not in a wheel chair, even though part of all this crap is my legs get weak at times & I can't walk very far. The second blessing being that I had a very good disability insurance policy that I wasn't even aware of.
A year after the first surgery they had to put a shunt in the cord to keep the CSF from getting back into the Syrinyxes, even though they had almost completely closed after 1st surgery....it was starting again. But the shunt worked .
Been 24 years & I am sorry to say about 2 years ago I began to slowly decorate. Pain is back to 7-10. Tremors. Walking more than 2 houses down the street is impossible due to weak legs & back pain. My pain meds have been raised. I have some ablasions done. Some trigger point injections. All of which help for a period of time. But not long enough. The raise in meds & procedures only began in the last 18 months when I was persuaded to go to a pain clinic. Thank God.