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Chiari Malformation Community
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Avatar universal

Now I need the surgery

I have Chiari which is getting worse.  Been to the Chiari Institue in NY.  They don't take insurance and they mis-diagnosed me for a related Chiari problem.   I've been searching for a NeuroSurgen who has Chiari and related-syrinx experience who also takes insurance (i.e. BCBS PPO).   I can have the surgey in the NY city area, San Francisco/Sacramento area, Atlanta, or Washington, DC area, or Miami area.

Thanks.
11 Responses
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the chiari forum.

TCI NS do not participate in insurance, but the Hospital and the NL and other drs do....u should be able to get ur insurance to cover by appealing the decision with the argument that u need to see a specialist....

Not sure what u mean by mis-dx'd?.....May we ask what u were mis dx'd as having?

There r other chiari drs in NY...plus I know Dr B, Green in Miami, FL.....
below is a link to a thread with a list of drs ...please research all drs to find the right one for u.http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460



We r happy to have u join our little family here, so sorry for the reason.

"selma"
Avatar universal
Thank you for the response and the information.  It's good to have other people to talk with about this.

When I visited the TCI, I had bilateral numbing in my arms from the elbow to my finger tips.   The Neurologist performed several nerve studies and concluded that the numbing was from the Ulnar nerve in both arms.  He said it was a simple operation (Ulnar nerve release) that I could have done locally.   Several months later, I had the surgery in my right arm done locally.  However,  I still have the same symptions a couple months after the surgery.  So, I did not do the left arm.   I don't believe this numbness has anything to do with the ulnar nerver.  I have seen another neurologist since and more nerve studies.  He said that I had some minor neropathy, but, that he believes my symptions must be associated with the Chiari problem.   I just can't get a straight answer.  However, the numbness is starting to expand into my arm pits and outer breast.  I feel like it is coming from the middle of my back (cervical/thorastic area).
620923 tn?1452919248
COMMUNITY LEADER
Have u looked into Thoracic outlet syndrome?

Do ur hands bother u if lifted shoulder height or higher?

Do u know where ur syrinx is located?

Sorry if u told me already.....

"selma"
Avatar universal
Yes, my hands and arms get numb if I lift above my shoulders.   I have nerver heard of Thoracic Outlet Syndrome.  Is it releated to Chiari at all?   I saw an episode on Mystery Diagnosis where a woman had pain in both her arms.  They finally determned that it had something to do with the blood vessels in her spinal cord (I forget the medical term).   I believe my synrinx begins in the cervical area (C3 or 4).  Then my spinal cord attenuates all the way down and appears to dissappear on the MRI.
1179332 tn?1297482590
Hmm I would have liked to see that episode...was it a cavernous hemangioma?

I just found out that there was an "incidental" finding of one on my MRI...now I am concerned that it may be causing my current problems. I can't lift my hands above my shoulders either without a whole lot of pain and aching.

I haven't heard of Thoracic outlet syndrome either?

Carolyn
620923 tn?1452919248
COMMUNITY LEADER
It disappears?...that is odd...hmmmm  did u have a lumbar MRI?

I wonder if ur chiari is causing the issues or if u have the TOS....I do not know a lot about it...but would deff ask the drs.

To find if these r related or not...I can not seem to find, but there r many chiari articles which include this condition......

"selma"

Avatar universal
Yes, I had full MRIs including the lumbar MRI.  Yes, I have a syrinx going down the middle of the spinal cord and it attenuates as it gets to the bottom (gets thiner and thiner then appears to disappear).   I went to the http://www.tos-syndrome.com/ site that has extensive info on the TOS.   It was scary!  I have almost all of those symptons.  I did the "arms over the head" test, and my arms, hands become numb immediately; and heavy as well.  I am in so much pain now that my blood pressure is constantly high (150/100), and I don't have high blood pressure.  I think something is about to happen.

Also, in response to cmoeller's question;  it was not "cavernous hemangioma"  but it started with cavernous and had two other words.  The second word was venous or arterial (I don't remember).  I have to stop typing now my arms r numb
620923 tn?1452919248
COMMUNITY LEADER
...hmm well, u have a few more questions to ask ur dr about.
I am glad u found info that seems to "fit" what u r dealing with.I also have issues with lifting my arms up...even if it is to my face...or doing my hair....my ears all of a sudden feel blocked as if they would when u r in a plane just b4 they pop....and then a dizzy feeling...very odd sensation.

My BP tends to be on the low side...I also wonder if u have  or r leaning on to having a Autonomic Dysfunction ....there is a forum for that too
http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266?camp=msc

And there is info in the Health Pages describing these.
http://www.medhelp.org/health_pages/list?cid=186

"selma"
1179332 tn?1297482590
Actually does kind of sound like the same thing..it actually has 4 different names and I have seen both venous and angioma in the description.

I wonder if I can find that episode somewhere...anyone know where?

Carolyn
Avatar universal
I found the paper that I wrote the name on.  It is cavernous angioma.   Only two words.  I don't know how to get specific episodes.  Maybe check with the network.
1179332 tn?1297482590
Thanks!!

Yes it is the same thing...just another name. I did try and find the episode but they don't have them to play back on the internet :(

Thanks for the info though...it just encourages me more to ask my NS about it!

Make sure you look at your MRI reports b/c I wouldn't even have known it existed if I didn't.

Good luck
Carolyn
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