Chiari Malformation Community
End of my rope
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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
Blank
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.
Blank
620923_tn?1405964489

  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?
Blank
Post a Comment
To
MedHelp Health Answers
Recent Activity
Avatar_m_tn
Blank
keltan commented on Attention All Mouth B...
7 hrs ago
1755089_tn?1376057155
Blank
drewlevas uploaded new photos
10 hrs ago
620923_tn?1405964489
Blank
selmaS commented on soccero's status
19 hrs ago
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
979826_tn?1389039958
Blank
soccero
germantown, MD
992677_tn?1337358095
Blank
ChiariWolf
OH
5640779_tn?1375816966
Blank
desertstorm2009
AZ
7530528_tn?1405298278
Blank
AKC_75
TX
1667208_tn?1333111449
Blank
zygy2
NH
Chiari Malformation Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
979826_tn?1389039958
Blank
soccero
germantown, MD
992677_tn?1337358095
Blank
ChiariWolf
OH
5640779_tn?1375816966
Blank
desertstorm2009
AZ
7530528_tn?1405298278
Blank
AKC_75
TX
1667208_tn?1333111449
Blank
zygy2
NH