I have some questions about Chiari and Syringomyelia. I was diagnosed with Chiari and Syringomyelia in 1995 and decompressed then. My neck locked up before the surgery and I have lost significant range of motion side to side. My neck and shoulders are always stiff and sore. II often get the burning down my thoracic spine. My syrinx runs from the C-spine down the full length of the t-spine. I was diagnosed with Pseudotumor Cerebri in 2007 and shunted in 2008. I have had 3 shunt surgeries. The first two surgeries were done wrong and they implanted an LP shunt incorrectly. My last shunt removed the LP shunt from my spine and repaired my lower cord, and moved the shunt to my brain. I don't really get many headaches anymore but my neck and shoulders are extremely tight. I've got cranial nerve damage to the III cranial nerve. I've found that Baclofen works pretty well for the tightness in my shoulders and neck but I am having to supplement the Baclofen with a small dose of Xanax to keep my neckand jaw loose. I am just wondering if there are many folks out there who have Chiari, Syringomyelia and Pseudotumor Cerebri? I honestly have never met anyone like me and the doctors don't seem to know what to do with me sometimes. I have been a lot more symptomatic the last couple of years and I'm wondering if that is just all part of it. I'm also getting older too and have had multiple falls where I have hit my head. It is hard to sort out sometimes what causes what. I'm 46 now, so I may just be aging. I don't know, and there really isn't anyone much that I can find to ask. Does anyone have any advice? My daughter has a Chiari also, but she doesn't have all the other stuff too. I've been dealing with this stuff a long time but I've been a little stumped lately because often I can't tell which condition is making me sick. It is hard to go to doctors and ask them because they don't seem to have many patients like me, or have ever had many patients like me. I also have some auto-immune reactive arthritis which causes inflammation in my neck and I am gluten intolerant. I've noticed that the gluten can cause inflammation to get worse and increases the neck pain. I kind of feel like a freak when I go to a general practitioner because it is almost like I have a bunch of things that they have not really treated much before and that they have never had one person with all of the stuff at one time. Any advice would be appreciated. Thanks
I was originally diagnosed with pseudotumor cerebri, then later diagnosed with Chiari. They never brought up the pseudotumor cerebri again. I guess since my optic nerve wasn't an issue they just ruled it out. I adore my surgeon but I really don't care for the neurologists at my clinic. I hope you can find some answers soon.
Crystal