Alax read / shunts & my experience

[Guest guest]

Hello Alax,

In response to your post about shunts....

Don't jump on the shunt bandwagon too soon. Let me tell you my

experience.

My primary symptom was a constant high pressure headache (unless

medicated). Excedrin seemed to work best for me. I was finally

diagnosed in 2004 after having a spinal tap done (why on earth

no one ever prescribed a spinal tap before is beyond me....I now know

how ABNORMAL a constant headache is....)

I was also diagnosed with chiari (my posterior fossa was

abnormally small) and PTC (because the spinal tap showed my pressure

to be high). My docs recommended I be decompressed and have a shunt

placed.

Well....I did NOT want a shunt. I debated with my doctor over this

for weeks. My doctor felt strongly that decompression alone

was not going to help me. But he finally conceeded and I was

decompressed in July 04. I felt great for about 5 weeks....then my

constant headache just reappeared one morning upon waking. So, I

ended up on the table again in Nov 04 to have a shunt placed.

I regretted the shunt. It never did relieve my headache at ALL. It

would randomly decide to malfunction on me (about once every 3

months) which meant pain more excruciating than anything I had ever

known. I remember vividly being at a local hospital waiting hours for a

neurosurgeon to be called in to adjust it....after the adjustment,

finding an empty bathroom and just lying on the floor in agony, waiting for my

pressure to build back up (I

wasn't at all concerned about germs on the floor of a public

restroom).

Finally, in early 2006, they diagnosed me with occult tethered

cord. I was detethered in Nov 06. My headache went away

IMMEDIATELY. I'm almost 2 years out now and feel so much better.

Now, I have to say (to be fair) that most people who have shunts

report that they help. I can't disagree with that. But, my opinion

is that there is a REASON for high intracranial pressure. You'll

read that it could be because:

1. the brain is overproducing spinal fluid (producing it faster

than it can be reabsorbed)

2. the brain's ability to reabsorb spinal fluid is hindered

3. the brain's ability to recognize high csf pressure is screwed

up

I have my own theory on this....just an educated guess. I think

FLOW has something to do with reabsorption. It is already known that

the tiny structures called " arachnoid villi " (or " arachnoid

granulations " ) are what control reabsorption. But even researchers

aren't 100% sure how these work. It is THOUGHT that they act like

pressure sensors (when pressure is high, they allow csf to be

reabsorbed). But, what actually stimulates them is not really

known. And my guess is that it COULD be flow (fluid flowing over

them would stimulate them).

Now....finally to my point! :-) A small posterior fossa OR a

tethered cord (or both) are likely to contribute to blocked csf

flow - which would ultimately cause high ICP. My feeling is, in SOME cases, a

shunt is a bandaid for a problem that might be fixed otherwise (i.e.

decompression or detethering). So you can try to fix the ROOT cause or you can

get a shunt. And let me be clear that I'm not saying that any surgery is

guaranteed to fix your problem (in fairness, I think

there ARE some folks on here who have had both surgeries and still

have problems....and some of them may still have high ICP). But, I

think chances are on your side. The docs at TCI will know more (and

yes, they know about PTC too).

And here's another consideration. Now that I'm headache free, my

shunt has been tied off - but they won't take it out (docs don't like to

compromise the dura unless absolutely necessary). I am forever

stuck with this hardware in my head/stomach. I sometimes worry that,

since csf is not flowing DOWNWARD, if it might be possible for

bacteria growth to eventually migrate upward from my stomach to my

head, leading to meningitis. I don't know if this has ever

happened....but it's something I've heard other people mention.

I already sent you some info on tethered cord. Please take the

time to read it. I hope this all helps.

in land