I have a Chiari Type 1 malformation of 5mm descent, diagnosed in 2011. I found this site on an internet search and signed up last week. I wanted to thank everyone who posted to my member page and welcomed me. I would have posted sooner but I am in the middle of a flare up and it has been all I can do to get through my work day. Headache, fatigue, blurred vision, the works. It is the worst one I have had in 10 years. I am wondering if everyone else experiences symptoms in bursts or is it more a constant thing. I have some symptoms that are constant, but many seem to increase in intensity suddenly along with new ones appearing; then after a time it settles down again. I am also interested in how long it took folks to be diagnosed. Looking back and knowing what I know now, I had symptoms of Chiari all the way back to early childhood; of course there was no way to test for it back then. I have had these strange symptoms that doctors could find no reason for, all my life, it was a total fluke that I was able to have an MRI done last year when once again I found myself suffering from severe headaches, only this time I had sudden onset high blood pressure. They were going to do a CT scan, but I had one a few years earlier that showed nothing, so I asked if they could do a different test. As luck would have it there was a mobile MRI unit at the hospital that day, so they did an MRI instead. We were looking for aneurisms which killed my father’s brother at 39 years old but found the Chiari instead. I have yet to get a doctor, other than my GP, to take it seriously, even though it would explain most if not all of my symptoms. So now I am looking for a good neurosurgeon who will take this seriously. I have already found a “neighbor” on this site who has made a recommendation that I hope to talk to my GP about next week, and get a referral, wish me luck. Anyway enough of my ranting, I look forward to learning more about this defect and how to live with it.
Sorry I missed welcoming you. I am glad you found us and as Emmaline said go with a Neurosurgeon before a neurologist. I don't want to discourage you either but I will say don't give up if some neurosurgeons dismiss you. The first 2 I went to did to me because my herniation was small by the report, The report was vague and just said greater than 5 mm. They both dismissed my complaints that it was cervical stenosis, one of the 2 neurosurgeons did a cervical fusion to see if that would alleviate the problems which it did not. The other NS ordered a CINE MRI for me Which showed blockage. So the NS who did my cervical fusion literally just did my decompression (July 16th 2012).
Great information in the welcome tab and the resource tab as well as you might find a great recommendation for a NS in your area or not to far from home.. Need anything give a holler.
Sorry I haven't welcomed you to the group sooner....so...................WELCOME TO THE GROUP!!!!! Let us know if you need help getting around the site.
So glad you have an appt with a NS..I have to agree 110% with my friends Emmaline and Michael when they said to go straight to the NS....personally, the only things I got from NL's were frustrations and co-pays...not ONE bit of useful info...but that is me.....maybe other folks have been lucky enough to find a neurolosist who know something about Chiari.
I am in the same boat as you, at the moment. My primary care doctor believes the pressure in my brain is due to Chiari, but no one else believes me. The last neurosurgeon I saw said all my symptoms (dizziness, double/blurred vision, brain fog, daily headaches, pre-syncope, and on and on...) are due to my weight. o.O Still searching...
Good luck! I hope you find the right care giver soon! Katrina W.
Welcome James! I have the the same kind of "cycles." It is strange. A lot of my symptoms are constant, but sometimes they seem to be aggrevated and they get worse. Sometimes they disappear just for new (or other) ones to appear. Chiari is a very personal thing. Everyone is different, but you will find we have some things incommon. I looked at your page and it says NY. They have a Chiari Institute in your state and there is also Weill Cornell Brain and Spine Center. I really don't know much about either one, just know they exist. I am from PA and have been having a difficult time finding someone to figure out what is going on post-op. I agree with the comments above...stay away from Neurologists! Go directly to an NS! Anyway, please feel free to post as much as you'd like. We are all hear to listen and offer support and advise (when asked). Again...WELCOME!