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Chiari Malformation Community
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Chiari Dr. in Michigan

Hi everyone~

I'm new hear & have been reading through the various posts.
Like so many of you.  I have the headaches that stem from neck area,
radiate up the back of my head- often around the whole head.
Issues with dizziness/lightheadness- trouble focusing.  Sometimes
I say to my husband, that its real subtle, but almost feels like i'm having
a stroke-especially on my left side- it all feels like its going weak.

I could go on & on. but they are all symptoms you seem to have here.
I had a head & cervical spine MRI nearly 2 years ago now.  And I swear that it said 2mm
herniation- "but within normal limits".   Of course, the drs. said this
was all ok.   I have seen ENT's, Cardiologists, Neurologists,
and of course my PCP,  none of which have "wowed" me.  
My daughter has hydrocephauls, so i'm quite aware of various conditions
of the brain & spine.   Once, while talking to her dr. he said "your
symptoms sound like chiari to me"   Then  I went to a pain clinic-
the Neuro wanted me to have a shot for the Occipital nerve.  And the
dr. there said  "I don't think these injections will help you--have you looked
into Chiari Malformation?"   I also have fibromyalgia & she says there
is a strong correlation between the two, or at least there is new
research coming out with that information.

So back to the Neurologist, who basically says "No, thats very unlikely
and if I send you to a NS, they'll just want to do surgery--thats what
they do!"  And she sends me off with more drugs.   ugh!!  

I'm currently looking for a new Dr.  and now almost scared
to call anyone.  Its SOOO frustrating going places where they
all seem in a rush & don't believe a word you are saying.
My PCP is talking about sending me to Cleveland clinic--but
I really wish I could find someone a little closer to home,
here in MI.  With kids, it makes it really difficult to travel & be
away from home.

Thanks in advance!
Lisa
1 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

Lisa, so many of us get dissed by drs that I call it the Royal Chiari Runaround....we have to educate ourselves and be our own advocates....we all wish we didn't have to but we do.

The link below has names of chiari NS's...but u do need to find a good NL as well....use the names here as a starting point and do research,...these r not referrals, but names of drs that other members here have used and liked.

U have to find the dr u feel comfortable with.
Try to get this NL to understand, u only want to know what is going on..ask if they will do more testing...like a CINE MRI to see if u have a CSF blockage and overcrowding......

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483


Dr. Lynn Hedeman
Great Lakes Neurosurgical Associates
414 Plymouth NE
Grand Rapids, MI 49505
(616) 454-3465


Dr. Karin Muraszko
@ C.S. Motts Childrens Hospital
Ann Arbor at the University of Michigan

Hang in there and keep pushing

"selma"
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