by Candace5440, Oct 27, 2009 12:44PM
I was diagnosed with chiari malformation type I in 2003 in 2004 I had decompression surgey done. I have continued to have daily headaches with some days worse than others, but over the past 2 months all of my symptoms have progressed to become hardly even tolerable. I am not even working now because my nueroligist said i could not work nor drive until he figured out what was wrong with me. My problem is that my original nueroligists said once the surgery was done i was healed so i found another neuro for a second opinion, and he said i may not have even needed to have had the surgery because he thought it could have been something else all along. My symptoms are daily headaches to the point of my head feelin as though it is going to explode, muscle pain(burning,shooting), weakness in my muscles, dizziness, extreme vertigo, shortness of breath, fatigue, pins and needles in hands and feet, trouble swallowing, trouble sleeping, night sweats, skin feeling as though sunburned without sunburn, diarrea (diarrhea), brain fog, memory loss, trouble spelling, double vision,back pain, stiff neck, full ears, loss of balance and coordination. I have seen a cardioligist who's only abnormal finding was that my blood pressure did not rise nor change during a stress test. I had MRI of my brain and cspine which came back normal. He did exstensive blood work which came back normal. I am awaiting the results of the lumbar puncture from the lab, but the intercrainal pressure measure during the puncture was 26 he did say that was high. Could this still be my chiari should I go get yet a 3rd opinion? Any suggestions of anyone in the Louisiana area???
By Dr Nassim Abi Chahine, Beirut Lebanon.
I dont know why this huge contradiction between your neurologists. why one of them ordered a surgery (and you did it) and the second told that there was no need for it?
A Chiari malformation seen on MRI should not constitute a contradiction...
you may simply need a more extensive surgery !
Yes, opening of the foramen magnum should be more extensive and thats mean a second surgery for wider opening of C1 C2 posterior arch, otherwise you should continue on a medical treatment for unknown period. no need to wait for a lumbar puncture. Start TOPIRAMATE 50 mg 1 tab and reach the dose of 1 tab 3 time daily after 1 week.. that will decrease all of your symptoms and dispers the pain into a feeling of body tingling which is not such terrible like the headache or body pain you have now.
you are most welcome :)
I also was diagnosed with a chiari type I. I'm 44 and have no idea why the onset of symptoms if I was born with this. I did see a neurologist that said all my symptoms were coincidental and nothing to do with the chiari. I then went for a second opinion and real liked the doctor Tufts Medical in Boston, he explained everything in detail. He did tell me I have a lot of crowding,my hearniation is 8.8mm, my T2 is slanted 9mm which he told me is the cut off for not needing surgery to remove the T2. Here's the thing he says that the chiari surgery is not done because it's there but done to relieve syptoms (symptoms) and give better life quality, tells me my daily headaches sound more like tension headaches and have nothing to do with the chiari, the throbbing I do get are from the chiari but these don't happen to often, it's the vertigo that seems to happen out of the blue and the constant pressure at the base of my skull that is bothering my quality of life, I sleep with a heating pad every night, I just called him back last Wednesday and we're going to do another evaluation after the holidays if these two symptoms don't go away and then decide whether to do surgery or not. Any ideas please? The vertigo comes and goes. Alex
fine, really after hearing well your story my advice would rather be in the direction of surgery. That does not mean that you should not wait, you can but why to live with pain for 3-5 more months, the surgery is the EXIT and in some measures a kind of smart solution changing the anatomy not deleting the pathology but transforming the malformation into a normal formation, to reshape the recipient into a more adequate one and continue the difficulties of life uneventfully :-)
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