Chiari and Pseudo Tumor Cerebri

[Panotchr]

My DD was diagnosed on Friday with PTC.  She was diagnosed with a chiari about a month ago.  Can these be related?  Can the chiari surgery help the PTC?  Anyone know a PTC specialist in NC?

[selmaS]

We  do have a thread here on the forum where u can start researching those names....the list is compiled by the members here...drs we all have been to and liked. But u should research the drs to find the best one for u.

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

"selma"

[Panotchr]

Okay.. thank you both so much.  Can you please let me know how to do a physician search so that we can find a someone that actually knows about this.  We are trying to get my DD into the Mayo clinic in Jacksonville.  My mother works there.  But I would be willing to go anywhere to get her help.
Thanks,
Kelly

[*Stormy*]

Welcome!

I have to admit that I don't know much about PTC and what I do know Selma has already covered...but I have done a little research on it..

What I have found is that they are finding a very fine thread that may link the two but haven't come up with anything solid yet. Knowing how little they know about the brain anyhow, I would think there is some connection that will come eventually. I guess the next question is which causes what?

From what I see about it, the symptoms are caused by high ICP caused by build up of fluid around the brain so I would think that having the surgery would help it (especially if the chiari is causing a blockage). Mind  you...the best bet is to see a specialist who will give you the info you need.

I am really sorry to here you are going through this with your DD...

Carolyn

[selmaS]

Hi and welcome to the chiari forum.

I did answer some of this on the other thread, but to answer ur question yes, the 2 can and r related....not all the have one will have the other....but there r several that develop this after surgery....it is usually an idiopathic cause...which means unknown.....

We do have a thread with names of drs for u to research....know u may have to travel to get to a true chiari specialist, but they can treat both conditions for u.....and depending on ur DD's age, u may want to ask the drs if they treat her age....some will only treat adults and I am not sure where their age cut offs r...some will only treat pediatrics too...so do ask.

If u need help navigating the site let us know. Again, so happy to have u here, so sorry ur DD is going thru this and bcuz of that u r here.

"selma"