Re: Chiari

[Guest guest]

KLS

Thanks for the info on Chiari. I'm fairly up to speed on PTC, but

had never investigated Chiari specifically. You mentioned

developing this after a car accident. A number of things changed

for me at about the age of 14 (when my disease really became

horrific). One was a major blow to the head (I was unconscious for

at least 3 minutes, but possibly 15). I've looked into post-

concussion syndrome, but that seemed worthless, even if relevant.

I've described my history as having a low-level " something "

percolating in childhood, that exploded as a teenager. How common

is it for head trauma to precipitate symptomatic Chiari?

When I learned of mycoplasma, Lyme, etc. and people were saying to

try antibiotics to test for herx, I tried Cipro and experienced the

most agonizing 2.5 days of my life. Penny had been warning about

minocycline-induced ICH/PTC but I didn't realize that cipro had

indeed caused my cranium to decompensate (instead of my misery being

due strictly, or perhaps even remotely, to bacterial die-off) until

I'd read that fluoroquinolones and bactrim can do this as well.

My " herx " mirrored PTC, not endotoxemia. Furthermore, PTC can cause

swelling of the optic nerve head. I'd been diagnosed with optic

nerve head drusen, but learned that this cannot be distinguished

from papillidema with out special tests. Since papillidema, but not

drusen, is cause by ICH, I reasoned that the opthalmologist picked

the most likely diagnosis, but got it wrong. Due to time

constraints I recently backed out of a referral to a

neuroopthalmologist to try to get a definitive diagnosis. Is

papilledema common in Chiari? Can I leverage a papilledema

diagnosis to secure an MRI? I had an MRI of my head a few years

back, but I suspect they were looking for MS. Would a radiologist

routinely check for Chiari? In other words, is my

supposedly " negative " MRI meaningful?

During a subsequent foray into abx cocktails, I developed an

allergic reaction that required very high doses of prednisone. I

didn't feel cured, but I don't remember feeling that good in a very

long time. I reasoned that the prednisone had dampened systemic

inflammation and that this was largely responsible for its feel-good

effects. I believe also that prednisone is a second-line drug for

ICH, and suspected that the prednisone had relieved some pressure.

I think I've read that the pressure can be reduced by virtue of

prednisone's dehydrating effects (but don't quote me on that). But

I wonder, now, if prednisone might help Chiari, and do so by a

different mechanism. I used to have a herniated disk in my back,

and whenever the tissue surrounding that herniation became

inflammed, my sciatic nerve would hurt. Antiinflammatories would

relieve that. I wonder, then, if the cerebellar herniation of

Chiari might be surrounded by inflammation and that that

inflammation might clog the flow of CSF even more. If so,

prednisone might help relieve the block, at least that portion of

the block that is putatively due to inflammation. Do you know if

prednisone helps Chiari?

Statements on the Web attribute to Cheney the observation that PWCs

have elevated intracranial pressure and he prescribed, at least in

the past, Diamox. This seems to get very little play these days,

but I did find testimony from one PWC that Diamox helped

considerably. Is diamox used in Chiari? Is it effective? I was

quite close to trying it, but then read about the blood dyscrasias.

It's been a while since I've read the PTC forums, but it seemed that

the shunts were very problematic. Something about failing on

average every 5 months; and not establishing the best pressure even

when they do " work " . Was this the unhappy customers flooding the

forums, or are shunts really as big a hassle as I've read? How is

yours performing? The PTC folks also portrayed neurosurgeons as

being fed up with PTC patients because its such a tough condition to

manage. Who monitors you, and how sympathetic are they? What do

you do if pressure gets too low, or too high? You can't very well

afford to keep going to NY every time your shunt gets moody, can

you? Who monitors you locally?

I often have " difficulty swallowing " . The food will sit in the back

of my throat but I just can't trigger the swallowing reflex. Is

that what it's like with Chiari?

The dominant variable in my life is the weather. Many PWCs complain

of this, but it doesn't seem to dominate most of them like it does

me, and not as many of them complain of this as I would like in

order for me to feel certain that I have what they have. The only

two groups of people that complain about the weather using language

that parallels mine are the folks with PTC and those unfortunate

blokes who have been bamboozled by the chronobiologists into

believing that Seasonal Affective Disorder is little more than

hibernation. One of the PTC sites even had a section on planes and

rollercoasters, because of the effects that barometric pressure has

on intracranial pressure. Just today, I wrote a friend that, " the

barometric pressure dropped like a stone a couple of days before and

I felt like I'd gone several rounds with Mike Tyson. " I've been

preoccupied for several weeks, so when I checked in here and you

were discussing Chiari, I searched a Chiari site and found many

complaints of low barometric pressure using the language I typically

use. In one case, the similarity is eery: " Can anybody tell us if

barometric pressure can hit a chiarian like a ton of bricks? We all

have head and neck pain. I personally feel like I spent a round in

the ring with Mike Tyson. "

chiari_information/message/6923

You can see why I'm interested in Chiari now. Any comments would be

appreciated.

Matt

[Guest guest]

Penny

I was very discouraged to read about the results of your sinus

procedure. Very discouraged.

I, too, was thinking I might try to get a lumbar puncture with an

opening pressure documented. But I think most PWCs probably hover

between the 8 of healthy people and the 20 (if memory serves) that

will trigger an ICH diagnosis. I think this may be true for me

insofar as my headache is dull, and not as offensive to me as the

fatigue/brainfog--nothing I would call migraines. Your pressure, on

the other hand, may be more reliably high. One question is, what

reward can you get if the reading is, say, 15? The docs are likely

to say that that doesn't qualify. So I've waivered.

But Chiari may raise the stakes for avoiding LPs. I haven't had

time to really investigate this, but it appears to me that the

lumbar punctures might be misleading and dangerous if Chiari is the

cause of the ICH:

" In the setting of Chiari malformation, the craniospinal pressure

dissociation can be worsened if CSF is removed from the spinal

canal. "

http://www.ajnr.org/cgi/content/full/26/4/985

I should investigate this further before starting any rumors, but as

near as I can tell, in the case of Chiari the brain is blocking the

magnum foramen so the pressure builds up on the brain's side of that

obstruction, but not on the spinal cord's side (this is different

from the garden variety ICH). So the opening pressure on a lumbar

puncture might not be elevated even if the cranial pressure is

high. Furthermore, draining fluid from the spinal cord would

enhance the pressure differential across the magnum foramen and

might push the brain even harder into that hole, with pressure

backing up even more. I'm not sure if I've got that scenario right

or not, but at the moment I'm thinking I'll go for the papilledema

diagnosis and try to go straight to an MRI, bypassing the lumbar

puncture.

I know nothing about the local application of prednisone. Part of

the advantage that I gain from oral prednisone may be due to its

dehydrating effects, and I don't think that would happen following a

local administration. The inflammation is another matter. In my

case, I still don't have convincing evidence that my problem is

infectious. There's a good chance that it is, but I just don't

know. But I'm wondering if applying an immunosuppressant to

infected sinuses might worsen the infection in the long-run. Just

speculating here.

I don't think I ever followed up on my GI post from some time ago.

Turns out I had C diff. (diagnosed by the standard antigen test)

with lesions that were presumably pseudomembraneous colitis

(diagnosed by sigmoidoscopy). Oral vancomycin worked wonders. I

haven't relapsed since.

Matt

>

> Yeah, Matt, barometric pressure changes have always been a huge

problem for me too, triggering migraines. Here in So. Cal. our

weather changes are much more subtle, but we've been having

extensive santa anas for some time now (some kind of pressure

situation which creates high, hot winds) and I've been having killer

migraines again. Not to mention, my sinuses are blocked more than

I've ever experienced before (so much for the miracle surgery).

>

> Anyway, it's frustrating knowing that there are things like

ICH/PCH that are probably contributing to our illness, and no one's

on top of it at all. This is why I've wanted to get a spinal tap and

measure my pressure, see if there's something there to pursue.

>

> I'm glad you wrote, Matt, because I've got some left over

prednisone spray from my surgery and I think I'll try it for this

latest migraine I've been fighting for 2 days. See what happens.

>

> penny

>

>

>

>

[Guest guest]

Penny

I still have a lot to learn about Chiari, but I assumed that all the

cognitive problems that go with it would be resolved when the

obstruction is resolved. Apparently not:

" ....symptoms of depression, poor sleep and fatigue are described by

his Chiari patients. Some patients described feelings of " brain fog "

or difficulty with concentration and thinking, including

difficulties with word finding. It is also significant that he and

his nurse associate Dr. Diane Mueller published a study this year

acknowledging that this symptom group demonstrated little

improvement following decompression surgery. The reason for this is

not clear. But the reason may lie in the fact that these cognitive

problems may have different etiologies – that is, they may arise for

different reasons, even though all patients had Chiari 1

malformation. "

http://www.conquerchiari.org/subs%20only/Volume%203/Issue%203

(10)/Bland%20Cognitive%203(10).asp

I need to spend some time reading the Chairi forums to see if

patients who have " successful " Chiari surgeries really don't obtain

relief from the cognitive/fatigue problems, but so far I'm very

dissapointed at the suggestion that the cognitive/fatigue problems

persist. These are the only symptoms I can't live with.

It's odd that they're saying 100% of the patients in the study

complained of this, but surgery didn't relieve those symptoms. It

suggests that the fatigue/brainfog and the Chiari-specific problems

are provoked by a common, upstream problem. We've long-ago

discussed the likely problem of inflammation leading to increased

intracranial pressure. In light of how many people with Chiari

malformations are actually asymptomatic, I wonder if

infection/inflammation increases intracranial pressure and that this

precipitates symptomatic Chiari in those with the pre-existing

malformation. I say this because an increase in the volume of any

cranial compartment leads to an increase in intracranial pressure,

but not as much as it ought to at first. The cranium

exhibits " compliance " in part by diverting CSF to the spinal column,

but also, I believe, by pushing the brain/spinal column ever so

slightly downward, like a piston. If that's true than someone with

a Chiari malformation protruding through the foramen magnum might be

especially prone to clogging their foramen magnum when they

experience a rise in intracranial pressure for another reason (say,

inflammation). This could become self-aggravating insofar as once

you cork the hole the pre-existing ICH might sky-rocket, jamming the

cork in even harder. So you could alleviate the splitting

headaches, neurological deficits, etc. with decompression surgery,

but you'd still be left with the precipitating, occult

infection/inflammation.

That's speculative, but why else would most Chiari patients have

fatigue/brainfog,yet not have those symptoms releived when the

obstruction at the foramen magnum is successfully dealt with?

Matt

>

> Thanks for your thoughts on the chiari and csf, spinal taps,

etc. Keep us apprised of what you learn. Good to hear from you.

>

> penny

>

>

[Guest guest]

KLS

I can't thank you enough for mentioning Chiari.

If you'd rather I post these questions on a Chiari forum or emailed

you privately, let me know.

Did you see your own MRI scans? How obvious was the cerebeller

intrusion?

Did you have a CINE MRI to measure CSF flow? What were the results?

I'm hung up on this notion that some people with obvious chiari

malformations are asymptomatic and others with relatively modest

malformations have symptoms and have substantial problems with CSF

flow as measured by CINE MRI. To expand on a notion I advanced

before, I'm concerned that symptomatic chiari may be what I'll

call " primary " or " secondary " . " Primary " chiari would be due to

malformations that are obviously too large and obstructive. They

block the flow of CSF and establish intracranial hypertension

(ICH). I.e., in this hypothetical case, the ICH is foremost a

*result* of the block, though it presumably also aggravates the

block once established. " Secondary " Chiari would be due to

malformations that are relatively modest and are not capable of

establishing a block until ICH, of some other origin, jams those

modest malformations into the foramen magnum. (Aggravation of the

ICH would be expected in this latter case, too). This might predict

that both forms of chiari would respond well to decompression

surgery, but that those with " secodary " chiari would be most likely

to relapse because the ICH was never *originally* the result of

foramen magnum occlusion (even though the ICH would be subsequently

aggravated by the occlusion) and the ongoing ICH could still push

the cerebellum against the newly enlarged opening.

My question, then, is have you noticed a relationship (in patient

reports) between the overtness of the malformation as seen by MRI

and the likelihood of relapse following surgery? I'm not talking

here about CSF flow as measured by CINE MRI, or even the severity of

the patient's symptoms. Just the obviousness of the malformation

itself and the likelihood of relapse.

When your neurosurgeons adjust your VP shunt, what is their

endpoint? I.e., what do they measure in deciding to adjust the

shunt? Is it based on how you feel? Do they base it, instead, on

something like CSF flow via CINE MRI? I'm guessing they don't

measure the pressure directly by LP, in your case or that of other

chiarians.

My concern with this question is that, as I remember my readings on

ICH/PTC, neurosurgeons seem to be concerned mainly with the upper

range. They seem to be concerned with alleviating migraines,

neurological deficits, papilledema, and intracranial pressure that

is above an arbitrary level; and not with getting the pressure down

to the statistical average seen in healthy people. Do you have the

option of having the surgeons open up the shunt until you have a low-

pressure headache and then closing it up just enough to relieve

that? Or does the shunt actually measure the pressure, and can you

ask that it be set to the statistical mean, not just below the upper

range?

Thanks,

Matt