pseudotumor celebri

[jenny_0919]

Good Day! would really need your help regarding my husband's problem...he had MRI/MRA CT scans..and he;s kinda tired doing this...we even asked for second opinion...they all said that there's no any other cure...and that he's dying...id like to know...is there anything else that we need to do? hes takin medicines but it didnt help...thank you so much

[alchris]

  What did the doctors tell you other than the horrible and sad thing you wrote about dying.  What doctors or hosiptals have you gone to.  Did you ever get other opionons.  Here is a list of things to look into.  From what I read it affects the eyes.  Resources below I hope this can help you.  My best wishes.

National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
8A07
Bethesda, MD 20892-2540
Tel: [phone]
Fax: [phone]
Tel: [phone]
Email: ***@****
Internet: http://www.ninds.nih.gov/

Pseudotumor Cerebri Support Network
3521 Westbay Drive
Columbus, OH 43231
Email: ***@****
Internet: http://www.pseudotumorcerebri.com

Intracranial Hypertension Research Foundation (IHRF)
6517 Buena Vista Dr
Vancouver, WA 98661
USA
Tel: [phone]
Fax: [phone]
Email: ***@****
Internet: http://www.ihrfoundation.org

[Quixotic1]

Pseudotumor cerebri is not considered a fatal condition.  What happened to your husband?  What else is wrong except the pseudotumor?  Why do they say he is dying?  It doesn't make sense.  We'd like to help.

Alchris is right.  Usually the most severe thing that happens is loss of vision.

Quix

[Giveypup]

Pseudo-tumor is not usually a fatal condition.  Are you neglecting to mention another concurrent condition??  Go see Nicholas Iliff, M.D. @ Wilmer Eye Institute at Johns Hopkins in Baltimore.  Orbital tumor specialist/surgeon, non pareil--there is no one better.

[Giveypup]

I need to recant part of the above posting.  While Dr. Iliff is a fabulous orbital tumor specialist, a pseudo-tumor cerebri may be more the purview of a neuro-ophthalmologist.  A SUPERLATIVE neuro-ophthalmologist--diagnostically and surgically--is Steve Feldun, M.D.  You can google him--he is the state of NY.

Best

[emmcsmom]

Has anyone ever heard of pseudo-tumor celebri in a baby?  My 22 month old is being diagnosed with this and all of the doctors say they haven't ever seen it in a baby.  We are quite concerned.  We are hoping to find another parent whose child has been diagnosed with this condition.

Please help - you can reach me at ***@**** if you can provide any help or advice.

Thank you in advance.