I received the MRI report and it states that the cerebellar tonsils are low lying without meeting the criteria for chiari malformation. Is anyone here familiar with chicari malformation and is it possible to have symptoms without it being obvious on the MRI?
I'm at a loss here--everything points to MS, but there are clearly no lesions on the MRI. I can't find a whole lot on chiari malformation, but what I've read does talk about headaches similar to those that I experience, being precipitated by pressure from straining, coughing, etc.,.
I'm not trying to grasp at straws here, but I KNOW there is something wrong and it's steadily getting worse. I just need to find out what it is... If it's not MS, great! (And it sounds like it's not at this point because of the clear MRIs.) But I need to know what it is.
I can't say anything at all enlightening about chiari malformation, but I do know it's discussed often in the neurology forums, including the expert one. You might try there.
I know you're getting desperate. That's very understandable. Still, try to hang in there, and don't give up. We've had many members in your circumstances, and most have ultimately wound up with some kind of diagnosis.
Maybe resolve not to think about it, to the extent possible, over the upcoming holidays, and plunge in again in 2010.
Here's wishing you happy holidays and answers for the new year.
Many people have low lying cerebellar tonsils and are assymptomatic. I would take ess' advice and write into the Neuro forum or the ACM forum here and ask some questions. Remember that often not much happens around the holidays and you may need to table this for a few weeks.
I was misdiagnosed with MS for an entire year 5 years ago and then I was properly diagnosed with Chiari Type I Malformation. AND, YES - it is absolutely possible to have symptoms without the anatomy of the malformation being overtly prevalent.
My symptoms have steadily gotten worse over the years, however the physicality of the disease has not changed. Pressure headaches resultant from ANY type of strenuous (sometimes not-so strenuous) activity put me down for the rest of the day and the tingling and numbness in extremities has become a frustrating and a losing battle! Over the past 8 months, I have gone from a physically fit and highly active athlete to a lethargic, deeply discouraged and extremely exasperated individual. I can relate to how you must be feeling and join you in your confusion...
The Chiari Specialists at the Cleveland Clinic have been handling my treatment and I will be undergoing the decompression surgery within the next couple of months. I do not know where you are located physically, but they are ALWAYS willing to offer answers. Visit their website at http://my.clevelandclinic.org/disorders/chiari_malformation/sp_overview.aspx
It is a very frustrating and unfortunate malady and I hope you (and I) will soon find relief. I wish you ALL of the luck in the world and warm thoughts for your future!
Thank you all for your answers. I didn't get a chance to get on sooner because of the holidays and a kidney infection that sidelined me for a few days. (I had thought my bladder wasn't emptying properly, but then I thought I was just imagining it. I wasn't--on our 15 hour road trip with the kids, I got an obvious UTI that was an early kidney infection by the time I got to the ER.)
I will make an appointment to talk to my current neuro in January. I will pursue it from there. I'm fine with *not* having MS, but I do need to know what is going on, because it's getting worse.
Kristi, I will check out the link at the CC. Thanks for all of your additional information.
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