Chiari Malformation Community
End of my rope
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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End of my rope

Won't bore you with all details :)  Successful cranial decompression for ACM 1998 - felt much better.  Symptoms bad enough to go to doc again 2005 (ignored), much worse 2008 (put on more anti-depressants & ignored), lost job 2010 (could hardly walk or mentally function), been in bed mostly 2011 - present.  Currently seeing neurologist I really like (did not have medical coverage 6/2010 - 2/2013). Unfortunately current doc has decided he cannot find cause and has labeled cause "neuropathy of unknown origin".  I want more of an answer than that!!!    

Experiencing numbness left side of body, severe vertigo, neck pain (well actually all over pain lol), electrical zaps in head, seizures, mental issues; no sense of time, forgetful (sticky notes to brush teeth, take pills, get mail, etc), fatigue, depression (understandable considering all this :) etc

At birth, 1955,  in a very small country hospital I was severely pigeon toed and had somewhat of a wry neck.  These things became less noticeable as I matured, but did not "go away".

I am 58 year old, female.  Was in good health, very active, 2 grown children.  I am a high empathy & sound color synesthete.  

Thank you for any advice and have a colorful day!
Tags: Pain, Neck, seizure
2 Comments Post a Comment
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Avatar f tn
I'm sorry for your suffering.  Have you been back to the original NS?  When were your last MRIs?  Was your neck looked at too?

I started out with a laminectomy in 2000, worsened quickly by 2010 & had surgery for Chiari 2012.  My NS said that he is finding cervical compression and Chiari malformation together about 40% of the time.  (I probably also have compression in my elbows).  Many patients have problems lower on their spines.

IMO, we need life long follow up.
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620923 tn?1452919248

  Hi and welcome to the Chiari forum,.

AS Viv mentioned have other underlying related conditions could be behind ur symptoms....

Did ur first Drs rule out syringomyelia, tethered cord, ICP, POTS, ehlers-danlos...??

And was this a Chiari specialist?
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