Re: increased ICP/long

[Guest guest]

> It seems like more of us are being diagnosed with hydrocephalus, normal

> pressure hydrocephalus, or pseudotumor cerebri. I was diagnosed with

> hydrocephalus in 1990 after my first decompression, and was told by my

> neurosurgeon then that he hadn't seen anyone develop hydro post op. He

> should drop in on our list :-)

This whole area fascinates me, as I had to deal with this over 10 years ago.

Quite successfully, I am fortunate to say.

I think that we have to be careful about feeling that the surgery " caused "

the hydro, or is truly " post-op " acquired. I assume that this is possible,

but IMHO it was quite probably there pre-op, but just not recognized. Then

following surgery, it was one of the remaining symptoms that came to the

forefront.

..

In my case, I was told by my surgeon ( Dr. Hemley..pretty special

person!!!!) That there was a chance that I would need the addition of a

shunt post-op, but that she hoped the decompression alone, might be

sufficient. It turns out that the decompression was good, alone, for about 6

months...then symptoms started returning. I had a VP shunt inserted...I

could feel an improvement, literally in the recovery room. I have lead a

pretty normal life since then...some minor symptoms...a couple of

revisions...but no medications and no pain. I consider myself extremely

fortunate. Prior to the surgery I was one VERY SICK person...experiencing

multiple seizures @ day....excruciating pain,etc.

I am still trying ( for my own enlightenment) to come up with a good

explanation of the difference between hydro and PTC. In the article just

mentioned,PTC is referred to as

" Pseudotumor cerebri, also called benign intracranial hypertension,

literally means " false brain tumor. " It is caused by increased pressure

within the brain and is most common in women between the ages of 20 and 50.

Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting,

and pulsating intracranial noises, closely mimic symptoms of brain tumors,

possibly because of the abnormal buildup of pressure within the brain. "

I personally, had ALL these symptoms...pre-op. I was diagnosed with a Brain

tumor...misread c-scan, which showed fluid build-up ( not tumor) in a

ventricle. I found Dr. H...actually she found me <g>

I was treated for the ACM, which had been totally missed initially...then

treated for Hydro. I am doing very well. I didn't have lubar punctures,

lumbar shunts...etc.

I just put in a call to my surgeon, to try to get here " read " on the whole

thing. As soon as I have an answer, I will post it to the list.

All best wishes,

Sally R...ACM..Decompression '91..Hydro ..

VP shunt.... 2 revisions...NO medications... doing well in

Bethlehem,Pa

[Guest guest]

> I think that we have to be careful about feeling that the surgery " caused "

> the hydro, or is truly " post-op " acquired. I assume that this is possible,

> but IMHO it was quite probably there pre-op, but just not recognized. Then

> following surgery, it was one of the remaining symptoms that came to the

> forefront.

Sally shared her story, so I'll share mine :-)

I was told that my fourth ventricle was obliterated prior to my first

decompression. The other ventricles looked fine.

Within two weeks post op, nausea, vomiting, sleeping all of the time became a

lifestyle for me. They ran me in for a follow up MRI of the op site, but didn't

include the third ventricle.

Two weeks later, symptoms continued to progress and a CT was run to show an

enlarged third ventricle, and a shunt was done immediately.

I can't say that the decompression caused the hydrocephalus or not, I just know

it wasn't there prior to surgery. Maybe I was having a good vent day when they

did my first MRI :-)

My first shunt was a VA shunt, and I was revised to a programmable VP shunt last

year, and it is working great.

Kathleen