Looking for Chiari Specialist

[fishersgo]

I have been recently diagnosed w/ Chiari 1. I have a 7mm herniation and my dr is trying various medications and trying to avoid surgery. Because of other medical problems, I would like to avoid the surgery, too, but if it's just inevitable that I will need it in the future, then I would like to know  that and just get it over with. I have had 2 car accidents, which I think started the symptoms--one in 2004 and one last year. The symptoms (terrible headaches and dizziness, where I literally can't stand up  without leaning on something, as well as blurred vision, which is new for me. I dont even wear glasses normally) have gotten MUCH worse since my car accident last year. I do think my current dr seems mostly up to date on Chiari and does acknowledge that it's causing my symptoms, but I was wondering if I should also look into seeing a Chiari specialist just to see if there are other medications or treatments, other than surgery, that may help. I know 7mm is not a severe Chiari, so am still hoping for avoiding surgery. I live near Durham NC. Does anyone know of a good Chiari specialist in the area? Thanks.

[selmaS]

Hi...Dr Menzes  is a specialist that also does talks on cranial instability...which many of us with EDS may have to deal with.Not knowing what all ur symptoms u r dealing with right now, but both these drs r well respected.

Having tests done to see what other chiari related issues u may have may also help u decide which may be the better fit for u since both r good choices.

"selma"

[jenn077]

I am thinking about seeing a chiari specialist... so far havent had much luck with my local NS.   Dr. menezes at the University of IA is covered by my current insurance.. but i am going to be switching to Wellmark.. which covers everyone.. as of July. So now i am trying to decide whether to see Dr. Menezes @ U of IA or Dr. Heffez @ Wisconsin Chiari Center.  Does anyone have any experiences or recommendations? It would be GREATLY Appreciated. They are both about 7 hours from where I live.. so I obviously cant see both and determine who I like better... I gotta pick one.. and I'm indecisive the way it is.. and its worse when it comes to big decisions like this! lol

[selmaS]

Hi and welcome to the Chiari forum.

I agree with u that u should be evaled by a chiari specialist, but be advised u may not find one in ur area and may need to travel.

The other issue is u can not determine how severe chiari is by the size....it is the blockage of CSF and overcrowding that r the main concerns....so a 2 mm herniation causing a blockage is more severe than a 10 mm one that is not.....so u deff need tests done to look at ur CSF flow and a specialist to look at the overcrowding  issue.

I am happy to welcome u to our little family here, sorry the reasons u had to seek us out.

Below is the link to the specialist thread....PLEASE RESEARCH all drs u consider and understand this is a list of drs that members here have been to and liked....u need to check them to find the right dr for u...so this is not a complete list , just a starting point.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

"selma"

[*Stormy*]

Hello and Welcome

If you have access to a Chiari specialist, it would be the way to go. They don't just look at the Chiari but all the related conditions as well. I didn't have that option where I lived but I would have loved to.

There is a link here with specialists that other Chiarian have used and liked...I'm sure that Selma will respond to this and bump it up for you.

Many of us have found that it is really not the size of the herniation that dictates whether the Chiari is severe, it is the symptoms you are experiencing and how much blockage of CSF as well as if there is brain stem compression. So...if your symptoms are progressing it is something that you will need to consider. It is definitely a good idea to check into it now in case you need to have a surgeon.

Take care of yourself and let us know how you are doing,
Carolyn