My daughter in law was just diagnosed with the same condition. She is on medication to see if it's successful so as to avoid surgery. She has swelling of optic nerve with loss of vision, headaches, neck pain, high pressure on spinal etc.
Is seeing a neuro-opthamalagist and a neurologist. We're in Oregon and she receives OHP so all is free.
Her niece was / is hydrocephalic since birth. I wonder if there's any genetic pre-disposition??
Linda
HI,
In searching on-line for resources to help a friend I came across this forum.
Your story sounds VERY much like a friend of mine. They (her and her husband) are really struggling with finding a specialist of any kind that can help them. Have you found anyone yet (I see the last post was Oct. 29,2006) that has been able to pinpoint your diagnosis and help you move beyond pain and suffering? If so (which I so hope!) PLEASE forward your doctor's name and contact info. so I can point them in a positive (hopefilled) direction.
Thanks ever so much!
Liz
Thanks for the great information....just want to get back to normal and the neurologists don't have good answers.
Diamox is generally the conservative approach to try & from
reading comments off support groups that you can google, seems
to be census that it works off/on but depends on several things.
Many go up/dwn to test rx. Some opt for shunt. CSF is made/
replaced, 3-4 xday. Diamox is used by mountain climbers to
control the pressure as they climb. A very common practice.
Some countries will actually give you option of having LP done
a few times a week to see how things work. Bizarre! Another
way to Dx pseudo-tumor is going to opthalmologist & have eyes
dilated to evaluate swelling & degree of optic nerve. Also, many
have up/dwn BP daily but more towards high. Maybe talk to Dr.
& ask if cuff monitor at hm would tell anything by journaling.
An Opthal. MD would be very helpful. Perhaps research a clinc
that specializes in this condition w/ a Neuro-Opthal. Sitting
a long time will also cause pressure to build/release & cause
head problems. Also, go to top SEARCH box & click then type in
pseudo tumor for others commenting in Dr-pt. Forum.