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

[smileystorey]

OMG , I am sorry You are so scared and your husband must have and idiot  for a doctor please consider another doctor at once .. I was Dignosed with this  Aprox 4 years ago and I was not told that I would die 4 sure . So calm down !!!!!!! Before you give me and half the world a heart attack ok.
Listen
I will tell you what   will happen and what  to expect . You expect  severe headaches and believe me nothing  worked for me until I got on a steady dose of Topamax and that took some getting used to because when they said  stupid pills  that is true but hear this I would not trade them to this day for nothing in this world ...  it gets balanced out and so do you .

Listen I had to get so many spinal taps  and get the fluid drained off where  the fluid would   build up  I also took tons of diamox   again even with all that nothing worked     until the topamax   i been on that 2 years  and  no spinal  taps    and  weaned completly off the diamox since last oct    ..  However I will not lie to you in the last month  i have had little break through head aches again and  last week  a few  migraines starting again . its not fun I think  Either I need a spinal I usually know ( my eyes get bad like I cant see ) But the funniest thing . I still have 20/20 vision . go figure .  However it can cause you to go blind  you have to get eyes checked  and tested . you also  may have to have a shunt put in if you can not  keep the fluid flowing . That would be awful in its self I feel  blindness would be the worst , A shunt  in your  Brain to your belly  to keep the fluid flowing would be  2nd worst and  of course now if that was done I am sure there is always risk of death But I am sure that your husband would be fine  most overweight people get this  If he is over weight  LOSE WEIGHT  . I did but don`t get discourged  its something that may not go away  my stuck with me I lost 104 pounds and  am 151 pounds  so .. I guess everything  don`t work out I dont know many people with this but I wanted to write and tell you Dont be scared they have wonderful doctors  not happy with one find another its not a death sentence for a doctor to even say that is wrong  think about  it you have people who are dieing with cancer  aids etc and  the doctor wont give them a time date no one knows . live life be happy

[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.

[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

[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.

[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

[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