Re: What is ICP like?

[Guest guest]

Dear Friends,

I think some doctors now feel that high intracranial pressure can

often go along with Chiari. High intracranial pressure is also known

as Pseudotumor Cerebri. For years, on my MRI's, my ventricles were

small to normal and I had more spinal fluid just sitting on top of my

brain. It was sort of like a sponge with too much water in it. I also

had a Chiari Malformation of 5mm. When I finally was told I had the

Chiari, most every doctor I saw said it was a minimal herniation and

nothing on which they would operate. I had many symptoms like

constant headache, nystagmus and the noises and eventually a constant

throbbing in my ear due to all the trapped spinal fluid that had no

way out.

Finally, I had a decompression but they did not remove enough bone

and because of the Pseudotumor, I really needed a shunt. So, after

that decompression, I wound up even more miserable with headaches and

I still had the noises. The throbbing was a little better from the

surgery but I knew I needed more intervention. As soon as I awoke

from the first decompression, I knew instantly. Eventually, all of

the pressure in my skull caused a large pocket of spinal fluid to

accumulate under the patch at the decompression site. So, Dr.

Bolognese and Dr. Milhorat fixed a large pseudomenengeocele. (I still

cannot spell that word.) They also gave me a larger decompression

which helped tremendously.

Before they did all of that, they placed a VP shunt for me to help

drain some of the fluid before they revised my first decompression.

I can recall that the moment I awoke from their decompression, before

I could even open my eyes that they had helped me so much. I knew in

those few seconds of awakening that the noises had diminished.

High pressure problems are on of the reasons why patients still

suffer even after a decompression. So, some of us need shunts to go

along with decompressions. Even now, if my shunt is not right, I have

the worst headaches and sometimes when the pressure is very high, my

arms will become numb. When my shunt is doing well, there is such a

great difference in everything.

I do not know much about placing a shunt before decompressing someone

with a Chiari Malformation. When Dr. Bolognese placed my first shunt,

I had already been decompressed by some else and I only had the shunt

for just a few days until they revised my first decompression. I

honestly do not know about having a shunt for any real length of time

before having a decompression. I was never in that situation.

I know many patients are told that their pain is migraine after they

are decompressed and I was told that as well. But, in my case, the

pain was really caused from being underdecompressed and from having

Pseudotumor Cerebri. PTC is a diagnosis all by itself and it causes

headache, visual problems and many of the ear noises and intracranial

that just tormented me for so long.

Dana