doctors specializing in pseudo tumor cerebri

[pat621]

My daughter was recently diagnosed with pseudo tumor cerebri.  The neurologist who is treating her doesn't know much about it and has suggested that she should look for a doctor who specializes in this type of medical condition.

Is there someone out there who DOES specialize in this illness and understands the causes and treatment of it?

She gave birth to her son one month ago. Since that time she has been treated for endometriosis, kidney stones and now this false tumor.  While hospitialized, a lumbar puncture was done and medication given to her.  However the lumbar puncture caused her vein to collapse so they took it out.  Next, they did a procedure where they snaked a a type of flexible wire through her artery in up her arm to send medication directly through the artery, past the heart.
That was taken out two days ago because they couldn't figure out what to do.  They tried to give her courses of maxalt and topamax to break the cycle of headaches and also treat it with the topamax.  NOTHING has worked. Two days ago they sent her home. She is now taking the medication given to cancer patients to control the pain. It also is NOT working. She has a bulging disk in her upper neck as a result of a car crash about 10 years ago.  Could this be contributing to this new development that started right after she began attending college 7 years ago.  I wonder if the two have a connection.  Also, is there any hope or treatment for my daughter? Please respond; Thank you. PT

[Dr Vinod]

You should take her to a good facility with a specialized neurosurgeon for pseudo tumour cerebri. You can try something like Mayo clinic and also any major medical schools, centres.
Then you will get leads and proper hold of the methods of cure and treatment.
Take care!

[selmaS]

HI u may want to check the dysautonomia community here on MedHelp.