pseudotumor

[mycoda]

I am interested in finding a neurologist that specializes in pseudotumor cerebri if anyone out there has any help

[Lee1953]

do you have intracranial hypertention?
If so, would you be anticipating a shunt?

[selmaS]

HI Lee,

I have my appt..on March 31st.If I can get the addtioinal tests done here, otherwise I go on the 30th.

I was down to Unv Of Penn..they were of no use either.

I do anticipate surgery...not sure if it will be brain or spine.

"selma"

[Lee1953]

no- Jefferson
yes-Wills Eye  Dr Shergot
Do  you have an appt yet? Do you anticipate surgery?

[selmaS]

...and were they able to help u? Being sick or having a condition can be so frustrating to find proper medical care.

It took me yrs to get a dx and it is a yr and a couple months after a dx and still no treatment....I am waiting for the right drs.

"selma"

[Lee1953]

I saw a doc from Wills Eye. Also I  have been to Jefferson.

[selmaS]

Hi.....I believe it depends on ur current condition.Those in a more dire need I guess get in sooner.

There is also  drs in Chicago and CO.Either one should be able to help.

I have all my files at TCI for 3 weeks now and waiting on an appt.....when I get one I'll let u know. They r very busy, bcuz it is diff to fine good drs for these conditions.

"selma"

[Lee1953]

I'm in Central PA- I go to Geisinger Medical Center.
I'm looking into the TCI. Does it take long to get an appt?
Lee

[selmaS]

Wow...may I ask where in PA u live? I am also in PA...1 hr outside of Philly.
I am planning to go to TCI in NYC also...they have great reps for all conditions in this and related fields.

Have u looked into TCI's website?

I pray u have answer's and the right dr for u.

"selma"

[Lee1953]

yes- it was said I would loose all vision if the internal brain pressure was not relieved. opening pressure on lumbar puncture was 38. however, it was never  decided for sure  what the problem was.

[selmaS]

Hi and welcome to the forum.

I suggest u check out The Chiari Insitute in NY.They also treat related conditions of chiari which PTC is one.

Am I right ur drs gave u a shunt for possible PTC?....??

I do not understand that....I see u also joined the chiari forum , so if u need to ask me ne other questions u will always find me there.I do pop in here from time to time also.
U can also try sending a PM.(private message)

Godspeed
"selma"

[Lee1953]

I had a VP shunt placed 6-25-08 for (possible ) PTC with loss of vision left eye and deteriorating field of vision right eye. I had been treated w/ prednisone for Hashimoto's Encephalitis for 2 years prior to the shunt placement.
I'm looking for a 2nd opinion- I live in Pennsylvania, but am willing to travel!

[selmaS]

Hi and welcome to the forum.

I do not know where u live, but most chiari specialists do treat PTC.
The Chiari Institute in NY does treat this condition.
Here is the link...if it does not open to the page where they mention PTC click on syringomyelia and related conditions.This is a sub heading under what we treat.

There is another Dr in CO that I know of....

Please post an update on ur progress locating a dr.

Godspeed
"selma"
http://www.chiariinstitute.com/syringomyelia.html

[soldy]

Hi
,
Please be more specific about your scan.Thank you