Anyone familiar with Chiari malformation?

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Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 3/8/2013 1:59 PM (GMT -7)   
Just a question to all.  I have been dealing with CFS type symtoms for 2.5 years now, and the only real tell tale sign of abnormalities are a high anti body count that affects the thyroid, and 2 balance tests that the doctor at the time said reeks of a CNS difunction.  I have been given a tentative diagnosis of CFS and hashimotos encephalitis, the later based on the high anti body test results.  But.....my real question is regarding chiari.  I have had 2 mri's in the past, one 2 years ago, the other 6 months after that.  First mri report stated a chiari malformation 1 was present.  But, the reviewing neurologist dismissed this as being behind my symtoms....even though my onset was a whiplash trauma.  The brain fog/frontal headaches/unbalanced feelings fall into chiari (any other conditions of course).  But, the mri after the first made no mention of chiari.  I know there is a tie to CFS with chiari.  Just curious how this woudl show up on an mri, and then 6 months later not be there.  Could that simply be the interpretation of the radiologist reading the report?  As I weed out causes, I just suspect this as one to look into more.  I know that the longer we deal with this, the more we try to look for ANY possibility, so I don't want to be looking for a problem where one doesn't exist.  But.....I feel some obligation to myself to look everywhere to bring my quality of life back.  Any comments would be appreciated!

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 3/9/2013 2:18 AM (GMT -7)   
Hey Minnesota, I'm sorry i can't be of more help but I had to look Chiari up in my Medical Dictionary as I had never heard of it. According to what I read its mostly found as a birth defect which may be why your doctor dismissed it. Or he could be a tool, there sure are a lot of those with M.D. after their name. I hope these links and other info help somehow, also I couldn't find a link between this and CFS but I'm sure its just a matter of websites. As far as the radiologist and the neurologist, I don't trust any neuro docs who don't look at the films and interpret for themselves, this is their specialty for crying out loud! I would find another neurologist and get a second opinion is my point. Hang in there and Keep in Touch. http://forums.bettermedicine.com/forum.php

American Syringomyelia & Chiari Alliance Project (ASAP)
P.O. Box 1586
Longview, TX 75606-1586
info@asap.org
http://www.asap.org
Tel: 903-236-7079 800-ASAP-282 (272-7282)
Fax: 903-757-7456

National Organization for Rare Disorders (NORD)
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orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
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Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 3/9/2013 4:04 PM (GMT -7)   
Thank you so much for the additional information!  I have found out that this chiari is indeed a congenital condition....and then usually some type of trauma sets off the symptoms that otherwise would not affect someone w/o this condition. Many of the same things things that mimic CFS.  Just another avenue to explore. 

buddyboy
New Member


Date Joined Aug 2012
Total Posts : 16
   Posted 3/15/2013 9:30 PM (GMT -7)   
My husband has Chiari Malformation. Yes, it is congenital but symptoms can occur later. My husband developed a seizure disorder in his early 20's and was treated for at least 10 years before he was finally diagnosed. He had decompression surgery and his symptoms improved and he no longer has seizures. He does have many lingering symptoms which seem to have gotten worse again ie: nastagmus, balance issues, depth perception problems, headaches and on and on. I would certainly entertain another neuro to look at the MRI. If it was there in the beginning, it is still there. Just know that problems can certainly worsen if more pressure develops in the stem area. Hope this helps you some!

Kathy

jaqueline
New Member


Date Joined Jan 2015
Total Posts : 12
   Posted 1/18/2015 11:17 AM (GMT -7)   
I have chiari and it made me choke and have all kinds back in 2010 it was so bad that i had to have brain surgry and that was the only way it would help me and i had it for a long time when i was a little girl it would cause me to have balance problem and have stomich and back to not the acid some tummy problem is still happed still be cause i had a flowed sist up my in tier spin it was not good when you pat my back it would hurt really bad but it gone will still have nerve damege

jaqueline
New Member


Date Joined Jan 2015
Total Posts : 12
   Posted 1/18/2015 11:26 AM (GMT -7)   
Your husben is lucky he did not have choking problem that what i had and still if he is still haveing headache well it means it will not get worse i have blanceing problem that was worse befor after my sugery it got better a little i have headache after does he still have them and when was his surgery
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