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1223125 tn?1266970177

Newbie to Chiari--sorta

Hi! I'm a 41 yr old female who has started presenting with MANY strange symptoms after an injury @ work. I found out when I was 24 that I had a Chiari Malformation. I was NEVER told anything about it, I figured it was no big deal b/c no one ever stressed any kind of importance about it. I also have an extremely mild case of Cerebral Palsy. I was hurt @ work in March of 09. I lifted a box that fell apart and I tried to catch it and hurt my back. As soon as this happened I started having SEVERE back pain, trouble lifting my right leg to walk, loss of balance, dizziness, forgetfullness, and fatigue. In August 09, I receieved a back injection, and WOW did things get REALLY bad! EXTREME spastic movements, numbness in face and extremities, PAIN, PAIN, and more PAIN, neck pain and stiffness. Well the Ortho doc was thinking that the injection had damaged something to speed up my CP, so he referred me to Neuro. Neuro told me that the Chiari may be the reason for all of these sudden symptoms!!! He told me to start researching Chiari....I am blown away...I had NO idea what I would read.He spoke to me of brain surgery, but I didn't think much of it...afterall, I had NO IDEA what Chiari REALLY was!!! Now he is trying to rule out Syringomyelia, and he said that he feels certain that I have tethered cord syndrome! I don't know what to think!! I JUST started nursing school (in Jan.)!! He says there are no truly experienced surgeons in NC....I have no insurance...IDK what to do! Is it true of the surgeons? I haven't had the MRIs yet to rule out Syringomyelia and tethered cord. I did have a standing EEG done on Friday thru Sunday, and Friday was my birthday :(
Is the EEG a common test for Chiari??
5 Responses
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1041839 tn?1278681846
Hi Chantelle! I went through the same thing you did. I was dx'd 12 years ago but was told not to worry about it and was pretty much asymptomatic for 10 years but the past 2 years have just gotten progressively worse and i couldn't get any help from drs! I finally went to wisconsin (i live in mississippi) and will be having decompression surgery in june. So just hang in there! And know we are all here to support you! Blessings ~ Shannon
Helpful - 0
1179332 tn?1297478990
Hi Chantelle!

It is a scary rollercoaster ride that's for sure...I was amazed too when I looked up the symptoms and realized I had almost all of them. All that searching and wondering what the heck was wrong with me and why no one could figure it out just came crashing down on me.

Good luck on your testing...please let us know what they find!
Carolyn
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
It's all a group effort here...we all r learning new things everyday.....so glad u r here : )
Helpful - 0
1223125 tn?1266970177
Thank u Selma! I look forward to befriending everyone as I go on this journey! It looks as if u all know ur stuff! I am glad I found u all!!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum and Happy Belated Birthday!!

Yes it is true it is difficult to locate true chiari specialists and u may have an issue to locate one close to u.

I did not have an EEG for my chiari dx, maybe they were ruling something else out?.....my drs ruled out conditions like lymes, lupus and MS......

If u get more dx's b4 u get insurance u will have to wait up to 12 months b4 the insurance will cover u...get insurance b4 u look or find nething else.

We r always happy to have new people join our little family here, but sorry for the reason u had to seek us out.

"selma"
Helpful - 0
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