Cyndi's update/shunts/etc

[Guest guest]

Hi everyone,

It has been quite a while since I have posted anything, I haven't

resub'd to the list right now, as I sift thru the messages when I can

on-line. But so much has happened since I left to have surgery in

March, and I have read so much lately about shunts and high ICP on the

support group's posts, that I thought that it might help for some to

read what has (so far) brought me tremendous relief!

Just to catch anyone up that doesn't remember...

I am a 29 year old nurse, I was symptom free until a ski accident in

1994. I was then misdiagnosed by Dr.'s until I met Dr. Rothbart a

Neurosurgeon, who diagnosed me with Chiari in March of 1998, a couple

months later I had a suboccipital decompression with c-1 lam. and

duraplasty with bovine mesh. I had initial relief of symptoms, then

they returned and steadily worsened, I had spinal taps that revealed

higher than normal ICP's I had short term relief of some sx's after the

taps, and when I had a spinal fluid leak I continued to have relief

until I had a blood patch done to fix the leak.

With the history of my high ICP, and relief after lower pressures, my

Neurosurgeon suggested a shunt. Even though I thought the world of my

neurosurgeon, I sought other opinions to make sure that he wasn't

missing something. I saw Dr. Frim who thought that the bovine should

be removed that I was " rejecting " it, and Dr. Menezes that thought that

I should wear a c-collar to see if it was caused from the neck muscles.

I returned to my nsgn, and he spoke woth those Dr.'s (and others) to

see what their thoughts were, since he couldn't find clear evidence

that it was " rejection " of the bovine, however did not discount that.

We tried the C-Collar, which only gave me a stiff neck. (I had also had

a CINE-MRI which suggested that I had inadequate flow of CSF to my

Post. Spinal Cord.)

So, he did a second " decompression " to remove the bovine and replace

with my own tissue (from my head), when the pathology reports came back

it did show some Large Cell Reaction Cells present, however it could

have produced that same response from the sutures in the dura which are

foreign and left in place. It was not looking like it was the

" rejection " afterall (though we may never know if that also played a

part in all of this), my symptoms immediately post-op were gone,

however slowly began to return, until I developed a CSF leak that

required me to be back in the hospital with a Lumbar Drain, to drain

off CSF to keep the pressure lower so that my dura could heal itself

without surgery. This may have been a blessing in disguise, as I had

the fluid drained from the catheter in my back, my symptoms dissapeared

again as did the leak.

Unfortunately I also developed a reaction to that catheter and they had

to remove it earlier than planned. My symptoms returned. At this

time, it was plain to see that I funtioned much better at a much lower

pressure and we decided to plan for a shunt (after my nsgn discussed my

case with nsgns from all over the country). We needed to be sure that

I wouldn't react to the catheter if placed in my head, so I had another

spinal tap to send off samples of my CSF to check for a silicone

allergy, and my symptoms once again became better (he also drained my

pressure back down to mid normal range at that time.)

After the test came back O.K., I had a Ventriculostomy placed (a

catheter into the ventricle of my brain to the outside that measures

constant ICP, and also drains off CSF to a designated pressure. (They

did this to watch my cell counts to see how I would tolerate the shunt

since I had such a reaction to the Lumbar drain in my CSF Cell Counts)

I had my VP Shunt placed in April with an anti-siphon valve (since I

had a problem with siphoning the fluid into my abdomen), and I have had

a drastic improvement!!! (It has taken some adjustments with the shunt,

however he put in a " programmable shunt " that can be reprogramed to a

different pressure in the matter of a couple of minutes, just by a

special magnt placed over your head, it is painless and quick). In

March when I had the first of these surgeries, I was at the point of

thinking of quitting my job, because I could no longer do it, and now

that I am back at work, it seems so hard for me to remember how

terrible it was back then. My symptoms that have improved or

dissapeared are: Numbness of extremities, dizziness, blurred vision,

nausea, ringing in my ears, a drunk/disconnected feeling (hard to

describe), Severe pressure behind my eyes and in the occipital area, &

increased sensitivity to my legs. There were probably others but I

can't seem to remember...(out of sight out of mind).

I still have occ. headaches, where before I had a headache every day

and very freequently had to take Vicodin, Fiorocet, etc. that would

only add to my dizziness and other sx's. But where tylenol wouldn't

touch them before, now they are much more treatable.

I was VERY nervous and skeptical about this " shunt " and to be honest, I

truly did not think that it would work, even though all of the evidence

pointed that way, I would talk myself into believing that maybe it was

from decreased stress, or a number of other factors, instead of it

being that they were lowering my ICP when I felt better. It seemed too

easy.

It has taken me this long to post because I was still skeptical that I

would continue to feel this well, and I always fear that someone out

there will read this and lead themselves down the wrong path for them.

I know how different all of our cases are and only wanted to share my

experience.

The one thing that got me to where I am is an extreemely caring and

committed Doctor, and wonderful and supportive family and friends!!!

(both of which never gave up on me.)

If anyone has any questions or comments, please e-mail me at my

address, as I only occ. read the support group's messages on-line. You

have been such a group of strength and hope for me when I truly felt

that I could not find my way thru this. I can only give my heartfelt

thanks to all of you!!! And will always be here to listen or help if I

can, as you have all done for me.

Love,

Cyndi