I have been having headaches as long as I can remember. Debilitating with dizziness, nausea..the works. For years I dismissed them as migraines, saw multiple drs etc with no treatments (steroids, chiropractor visits, topamax) with little to no relief. My 3 year old son was recently diagnosed with a 11mm herniated Chiari 1 malformation, which made me think more about my symptoms. Ive had several drs review my mris. None of which were Chiari Experts (there are few in Ohio) Each and every one said there was no evidence of herniation. Considering the strong genetic links of the Chiari Malformation, is it possible that Ive been misdiagnosed, or, more importantly, could I have a Chiari 0 (which has symptoms but not the tonsular herniation)? Recently, Ive been getting stronger and more frequent symptoms which is severely inhibiting my ability to do...well, anything really. Any advice or information would be greatly appreciated. Attached are the side and coronal views of my mri.
As for ur statement that "considering the strong genetic links"...is not something that most Chiari experts will even agree with as research into the genetics of this condition r still being done. That said, many of us can see a genetic link for our selves with out the science behind it.
I did review ur MRI, and it is possible u have Chiari 0, not being a Dr it is not for me to say.
A CINE MRI should be done to see if there is a CSF obstruction as well as over crowding, and then checked for other related issues/conditions, sleep apnea, disk issues, tethered cord, syrinx, ehlers-danlos, ICP., POTS....
U need evaluation of a true chiari specialist as some people only count a chiari depending on herniation...and on the new standard level i was told that there are a lot of chiari 0cases with a lot of symptoms.dont hesitate and get a great specialist for u and ur ds...keep us updated
The poster u r replying to has not posted since Aug of this yr, in order to get a reply u may want to try to contact them via a PM (private message) that way they get an e-mail that someone is trying to contact them....they may also be reading the posts and see this...but in case that may help.
Also feel free to post a new thread with ne questions u may have ], as there r many members here that may be offer u some insight.
Unfortunately I still have no answers. The problem i have is that to see a chiari specialist i need a referral..but am unable to get one cause the neuros ive seen dont think i have any problems. If you get any information please feel free to keep me in the loop.
Sorry to hear u still do not have answers....does ur ins require a referral?
Some Chiari specialists will see u or offer a consult to ur Drs if u r able to send ur info to them...some do this free while others charge a nominal fee.
I appreciate ur responding since u have not been on in awhile....
Please keep us updated as to how things are going for u too : )
Im so sorry that you haven't made any progress. I also had a Chiari 0 Dx. I really don't understand why we are still in the Dark Ages about Chiari.
Just what you don't need when you're already sick, but if you do the legwork, most hospitals take charity cases, and many doctors do pro bono work. There are also clinical trials. Can someone advocate for you?
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