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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Jellebeans, there is no specific “order” that the symptoms occur in, nor particular symptoms that are worse for everyone. Each person can suffer differently from this disorder because it depends on what parts of your brain are experiencing pressure and also on if/where your spinal cord is impinged.

Yes, eye pain can be a symptom, due to pressure on certain nerves. That “pressure” in your head seems most telling to me. Is it worse when you bend over? Sneeze? Have a bowel movement? Those things are typical of Chiari.

I’m sorry you are not receiving support from your partner. I “lost” my husband to this illness. He couldn’t handle it and left after 14 years, but not before becoming a mean, brutal alcoholic and taking all his hatred for the disease out on me. Then I thought I met someone else, and he went the same route in the end. Now, whenever I meet anyone, I tell them upfront that I have MS and Chiari, and they go away before I get a chance to get attached. LOL I’m prepared now to be “alone” for the rest of my life. My daughter says it’s because I’m “too strong” of an individual at THAT is what scares men off, but I see the fear in their eyes when I tell them, and I know what it really is. The last guy said that even though I’m doing fine now, he was afraid that “someday I’d get REALLY sick, and he’d have to take care of me”. Yeah, right!

Luckily, I have a very close, tight-knit family, so who needs men, right?

As for the doctors, I guess that we have to understand that Chiari is still a little-understood condition, that until recently, was only ever diagnosed post-mortem (after you were dead, during the autopsy!), so treatment has come a LONG way in a very short time. Doctors ARE very busy, and need to find time to be educated about these things, but unfortunately, the conditions that they treat more commonly have to come first on their educational and treatment schedules. Thankfully, there are Chiari centers and specialists popping up. Do some more research, Jellebeans – I bet you can find one in the UK, and they may be willing to see you without a referral if you present a good case to them. I spoke to the doctors at The Chiari Institute on Long Island, and they would have seen me if I could have got there.

And even without a diagnosis, a pain management specialist should be willing to work with you to help you get back on your feet. Often they don't KNOW where the pain is coming from, but they do know how to treat it.

Good luck to both of you!

MustangFilly





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