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Spinal fluid pressure and a Pseudo Tumor

by KIENOW, Oct 28, 2006 12:00AM
I am fit 32 year old male that has had dizziness/dull headaches/hand tremors/ and concentration issues for six months.  I have had two spinal taps in which the opening pressure on the first was 38 and the second was 28.  I have had normal cat scans/vision tests/MRIs.  One doctor said a Pseudo Tumor and recommended putting a temp shunt and the other doctor has said I have a brain virus and to wait it out.  I have had the doctor run around for six months...Are my spinal tap pressures high enough to warrant a shunt?  I have tried Diamox and it has not helped...My quality of life is diminished and I need a solution and feel these doctors are not educated on Pseudo Tumors...as both Neurologists were stunned my pressures were so high.



Member Comments (4)

by Demiguise, Oct 28, 2006 12:00AM
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.

by KIENOW, Oct 29, 2006 12:00AM
Thanks for the great information....just want to get back to normal and the neurologists don't have good answers.

by Liz922, Jan 30, 2008 08:20AM
To: KIENOW
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

by linan516, Feb 10, 2008 02:58PM
To: KIENOW / Demiguise
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
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