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[dbobsnodgrass]

dear All! I have had Trigeminal Neuralgia for just over a year. The first line of defense is tegetrol; which was given to me in the form of carbatrol ER. Within 3 weeks I developed a rash, but the facial pain bothered me more. I worked as an LNA and the director of nursing asked me to pull up my smock top and sent me to the ER. I was diagnosed with toxic epidermal necrolysis, transfered to the Shiners Burn Center in Boston, for 5 days. I was put on Cyclosporine for a month. At which time my neurosurgeon said he couldn't touch me for six months. I was suppose to have a microvascular decompression surgery, instead, I had a full craniotomy. It lasted for two weeks. Three months late, I had a stereotactic radiation surgery, which lasted for two weeks. Two months later I had another stereotactic radiation surgery, which lasted for three months. I noticed great confusion, and I was falling down alot and my vision went from blurry, to double with constant shadows. I went down to Mass General Hospital, and the chief of neurology said I had one to many surgeries.
My three brain surgeries were done locally, with 2 neurosurgens from Manchester and 3 from Mass General. Seems as though the last one hit the myelin sheathing on my visual cortex and gave me cerebellar Ataxia, from radiofrq rariation exposure. Instead of having one attack, I get one every 3-4months, lasting 3-6 days. I use a cane, but still fall down alot. It was suggested that I use a walker, but I talked them into letting try out a quadcane instead, don't tell physical therapy I still fall alot. Sorry to give you such a long story, but background is important. With my cofusion, this took close to an hour to write. My best to all! bob

[JimReag]

Hi Bob, I have cerebellar ataxia which causes balance issues and falls. Somewhere in a forum, I read that a cane is for support, not balance, and a trekking pole (aka, walking stick) is better for balance. So I googled "trekking poles", ordered a couple, then made a few myself, and have really been impressed by their aid in balance. I am buying a 4-wheeled walker tomorrow because I tried it last week at a home health store and was surprised at how easy it was to get around with it. My wife said she hadn't seen me walk that fast or surefooted in a few years. Its called a rollator in some websites. It has brakes and a seat. I am hoping to use it to exercise my legs a lot more than I am now able to do. Don't hesitate to try some of these aids. Best of luck to you.
JIM