Re: Re: Chiari - Matt

[Guest guest]

KLS

Hi Matt!

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.

You're welcome. Yeah, I hit my head on head rest and stirred things up.

But it wasn't the main cause of the Chiari the doctors said. And the more

I dove into my past, I realized that I had had a difficult birth and the forceps

were the cause of the Chiari (or perhaps genetics). Wow, if you hit hard enough

and in the right area then Chiari *could* be the culprit.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?

I'd say pretty common, from what I've heard. Most of the Chiari cases

are genetic or birth delivery related.

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?

I discourage using too many antibiotics. Yeah, some antibiotics

can actually increase intercranial pressure. Yes it is common, from

what I understand. Since it was a few years ago, I would try to get

a new MRI. May or may not be. It's hard to say without comparison.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?

I also have MS (diagnosed in 2003) and I tried a couple of rounds

of IV steroids when I was in a flare and the neurosurgeon said

it might actually help the Chiari, so I'd have to say, yeah, possibly. 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.

A lot of people are on Diamox that have Chiari. I don't know how

effective it is, because a lot of people can't tolerate it. So it's

something to discuss with a doctor.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?

It depends. I've never had any problems with mine and it's been in for

two years. The shunt that I have is the newest one out there. My

neurosurgeons only go for the best equipment, etc. I don't think they

are a big hassle. But I don't know how other shunts are either. I have

the Stratta shunt. Since it is so new, only one other neurosurgeon in

Boston worked with it and since I wasn't his patient, he wouldn't help

me. :-P At first, after my surgery they tried two other settings but

found out through CT scans that those weren't right for me. So I'm at

the right setting now and have been for two years with no problems.

Like I mentioned, I just went back 3 weeks ago to get it checked out.

Yeah, I actually do go back and forth to NY whenever I need to see

my neurosurgeon for something. Nobody locally for the shunt, but

my neurologist for my MS helps me out occassionally.

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?

Yeah that's the way I would describe it.

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."

Yes, the weather still bothers me, even post-surgery. I'm also very

affected by S.A.D. And wouldn't you know we changed clocks

yesterday. :-Pchiari_information/message/6923You can see why I'm interested in Chiari now. Any comments would be appreciated.

Yes I sure can. Let me know if I can help you anymore. E-mail me

anytime.Matt

KLS

[Guest guest]

Wow, I've also heard that Cipro can induce ICH in some people, but didn't know about Bactrim. Cipro was my life line, made me realize I was dealing with an infection. I became a new person on Cipro. But Bactrim!!! After a couple of days of taking Bactrim, I was hallucinating. Nothing major, but when I closed my eyes, I was seeing all kinds of crazy swirling colors, flashes, etc. And I could tell whatever was happening was increasing rapidly. It was actually scary, and I didn't want to wait around and see how "trippy" it was going to get so I stopped the Bactrim immediately. I can deal with a lot but I just don't like messing with my head that way, so anything that seems to affect my head negatively, I stop. :-) Right now I'm sitting here with an all over headache (not a migraine). I know it must be sinus inflammation related, and this bums me out because this was not a problem

prior to the surgery. I'm going to have to go see the ENT again, but I owe her a whole bunch of money, so have been putting it off. :-) I guess what I'm wondering is if the effects of inflamed sinuses seems so much worse because I've already got too much pressure in my brain and the slightest change ends up causing big pain. It seems ridiculous to me that my head can hurt this much when I have so few actual symptoms of a sinus infection. My nose isn't running or stuffed up, but I can sometimes feel something kind of popping and shifting around in there, and the pressure in the cheeks that comes and goes are really the only signs that it's my sinuses. I'm disappointed too, because I realize that Matt's probably right about the spinal tap most likely showing our fluid within some kind of normal range. I hate this

about modern medicine. Docs seem to focus on symptomatic relief or specialize in deadly diseases, but nothing in between. It's usually way too late by the time anyone takes the kind of illnesses we have seriously. Oh well. I swear I'm going to Arizona soon for those really good pictures of my head. Hopefully then I'll have a better idea of where to go with this. If I can see actual tracks between my jaw and sinuses, feeding the infection back and forth, then I'll know what needs to be done. And cross my fingers that it's successful. And then pray that the ICH that I think I probably have is a result of the infection and that it and all this inflammation that's been spreading through my body will subside. If this doesn't work, then it's back to the drawing board for sure. I just know that if I don't somehow contain or get the source of the infection out of

my jaw, I'll be stuck here forever. penny ThunderLungsABA@... wrote: KLS 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. .