This is a disorder with brain outlet crowding and cysts in the spinal cord. Having this condition means that you likely will be treated very poorly by the medical community because imaging is poor and people don’t want to believe your symptoms. The signs of myelopathy (spinal damage) that one can have can be very non-specific – gait issues, somewhat hyperactive reflexes etc. which can be discounted. I have on brave soul who was wheelchair bound before she received much help- and only then with help she received from th Chiari Institute in Florida. She put together a list of resources she found helpful and I have included them here verbatum:
The Chiari Centre in New York, which provides videos, doctors, all the information you ever need on Chiari and Syringomyelia
http://www.chiariinstitute.com
Conquer Chiari – This is a very informative site on both Chiari and Syringomyelia and they send you out regular newsletters on any current and updated information.
Self help groups that are exceptionally good with a whole lot of information to learn. Able to talk with other people who may think they have this disease or are in fact diagnosed with this disease, or loved ones wanting information on the subject:
http://health.groups.yahoo.com/group/chiari/ – this group works together with the Chiari Institute and you can easily hook up with doctors and nurses as the site is frequently visited by Dr. Balonesese, himself, from the institute.
Another great self-help group with some Saskatchewan people on it is:
http://groups.msn.com/arnoldchiarimalformation – This has lots of good information and good people to talk with.
Any more links? – let me know.
addendum-
list of other links here:
http://matthewschiari.webs.com/chiarisupport.htm ca
http://WWW.ASAP.ORG
THE OTHER LINKS YOU HAVE LISTED DONT WORK
I have had surgery for a brain tumor, January of 07′, my doctor also found my Chiari/syrgo. at this time. It meant nothing to me when he first told me, as I was concerned with the impending surgery. However, three months after surgery, the severe pain began, and three years later, it continues, only now it is traveling to my legs, although not as severe as the pain in my arms, or the tingling, numbness of my fingers, neck cracking, sharp pains in the neck when I turn my head, and the horendous headaches, ear-ringing, and the complete disabling effects of this , the pain is obviously starting to affect my mobility. I may also add that I have met with little concern with Doctors who have no idea what to do with me. I am sure they think I am completely making this up, looking for attention, whatever. I have nowhere to turn, as I am at the mercy of the medical field to help me, if they say I must suffer, then what am I to do? I could take countless drugs, but then, my quality of life is only worse than it is now, at least I can still think for myself….If anything, I would like the medical field to re-examine what they feel is the “norm” in terms of the pain caused by the Chiari Malfunction. As with any illness, normal doesn’t always fit the patient. I realize I may not fit the “box’. but what I am living is real, what I am going through daily is real, and what my pain is, is real…..I am so tired of being sick, in pain, headaches, lethargic, depressed, unmotivated, isolated, and just plain tired……..
Have a long, long history from age 13 to 48. I won’t bore you with my story, however, I wanted to comment. I couldn’t find help in my city as, like most of the readers know, not many docs are familiar with Chiari/Syringomyelia. I went to the internet and found a specialist in Canada (there were four at that time), I researched them and then picked one. I by-passed my doc and wrote directly to him giving full history and current problems. He promptly answered, asked my doc for referral only, and was pleased to help. I flew there, was assessed, given time to make a choice for surgery and a couple of months later the surgery was performed and I was back home in four days.
Am I glad I did it? Yes. The outcome has slowed progression. My doc said I would be left with some things and could still continue with deterioration however, just knowing I can do things now to slow it down is great.
My advice is to take charge of your own situation. Don’t become too frustrated with your doc. Just go looking for someone in the know. My own doc at home is happy and proud of me for taking the initiative as she was the first to admit that she knew absolutely nothing about Chiari/Syringomyelia and that now she knows more just because of my case. So don’t feel like you are stepping on toes. Just take care of yourself by taking control.
My daughter also has chiari malformation and I have many symptoms also can I ask what specialists you found and who you used and where? We are in Ontario, Canada and I can’t find any specialist for chiari just neurologists who have done a few operations so far for my daughter. Thanks for any info you can provide we would greatly appreciate it.
Kim
Dr. Dan Heffez, originally from Montreal but now in Wisconsin, would be an option.
http://www.wichiaricenter.org/
Good people in Denver and Florida as well but don’t know much about them
Hello,
I read your post and I hope you still check this out. My wife is struggling with Chiari and having a very hard time finding treatment. I am willing to send her anywhere (I’M in Alberta) for help, her condition is debillitating. I will do the research, but if you get this and remember, do you know the names of Chiari specialists? I would do exactly the same thing as you did. Thank you for replying, if you get this.
Brian Work,
I would suggest Dr. Dan Heffez – formerly from Montreal – who works at the Winsconsin Chiari center. He has done a study showing Fibromyalgia patients with chiari benefit from surgery
The URL is:
http://www.wichiaricenter.org/
I have heard of a good center in Florida as well – help me out here people!