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chiari malformation & CSF leak

Does anyone know a good doctor to see for consultation as well as surgery for a chiari malformation and a CSF leak.  Ive been diagnosed with both, but they are unsure which one is causng the other.  I would like to see a spacialist , but am unsure where to start.
5 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome...I just posted a reply on the other thread.....

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
The above link is a list of drs....u do have to research them......and u may have to travel...

Spontaneous CSF leaks can happen even if u do not have chiari...so u do need to have this looked at...did they tell u haw to help the leak heal on it's own?

lie flat for a few days, drink plenty of water and caffeine.....the other procedure used if this does not help is a bloodpatch....last is surgery.

"selma"
Avatar universal
The 3 neurologists ive seen all said Ive most likley had the malformation since birth.  . About a year ago I had blurred vision, dizziness(spinning room), numbness, horrible pressure in my head, ears popping/crackling, stiffness in my back and neck, difficulty breathing/swollowing...the list goes on and on....for about 7-8 months the symptoms were unbearable, but recently(3 months ago) this salty mucus was draining into my mouth.  I went back to the doctor and they just diagnosed me with a CSF leak.  since the draining my symptoms are still there but not to the extent they once were.  It feels as if the fluif builds up in my head and the sympoms come back then once it drains into my mouth i feel about 50% better. My doctor thinks the malformation is causing the leak, but I feel that isnt the case and want to see a specialist that can get me on the right path.  I will travel wherever i need to.  Im not sure of how farmiliar the doctors are with the condition here in Alaska.  Its a frustrating condition since I love to play sports and work out.  Ive excepted that i may not be able to do these things again, but I want to see somone that knows whats going on and isn't speculating.
620923 tn?1452915648
COMMUNITY LEADER
Well chiari is congenital...meaning from birth...so they r right on that front.

Be very careful as straining with lifting and pushing can do harm.....

The Dr who wrote the poem u like is in CO.....not sure if that is closer than some of the other drs.....

Many of us have been thru the same  thing with drs, I call it "The Royal Chiari Runaround".....the drs do not connect the dots, are not up on the newest research concerning chiari and discount what we the patient tells them......

It is a journey, but know u r not alone : )
"selma"
667923 tn?1421462724
Hello, I am in a rocky boat. I have discovered just recently that I have a small tangled area of vessels in the left cerebullar hemisphere. Also, it mentioned a Venous Angiom, in which, hurts like heck at the back of my neck and all of my muscles are tight and I am so miserable. My nose will pour out like water a lot and I have had a blood patch when I had a Mylergram.. My eyes are real blurry right now, so I am typing with my eyes closed..Hope I get the words right..llol..but seriously, I am in need of a doc.
     I am just so tired of suffering all the time and now I am having symptoms like my brain swelling, especially at the base of my skull at the back. My legs have been killing me for a long time...Need hope..gotta go 4 now.tired and my eyesl Taie care and always God Bless..<3 Karen
620923 tn?1452915648
COMMUNITY LEADER

  Hi Karen,

Have u researched the drs on the list I sent u? I know u need a dr, but u have to research to find the one that is best for u!
U want one that is well informed  and experienced , and that is important, that the experience is there as well as knowledge.......and u have to be comfortable with him....someone I like and get along with u may not.....we r all soooo different.

Use the list and make a few calls, then a few appointments to see whom u prefer.

I pray u find the right dr soon, and they he/she is able to offer u treatment and relief.

  "selma"
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620923 tn?1452915648
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