Re: Re: Chiari

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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 phagelod <mpalmer@...> wrote: KLSThanks 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/6923You can see why I'm interested in Chiari now. Any comments would be

appreciated.Matt

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Wow. You really did have c. diff.! That's really dangerous. So glad they gave you vanco and it cleared up. Was it from taking a particular abx? 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 p.s. I keep telling myself that the sinus surgery will eventually be a good thing (if, in fact, drainage problems were an actual issue as all the ENTs kept telling me). At least the baloon sinuplasty made the holes big enough so that draingage shouldn't ever be an issue in the future. And I still have all my cilia. I think the problem comes down to biofilms and the infection reseeding itself. What I don't like is that I'm experiencing more sinus symptoms now than I ever did before. Like pressure/pain in the cheek bones, above the eyes, etc. This was something I rarely

experienced in my entire life before the surgery. So I hope it wasn't all a big waste of time & money, or that the surgery allowed the infection to spread further. That's my biggest fear. Every time I have surgery, which seems to be what's needed, I get worse. I know my jaw infection needs to be addressed, but trying to figure out how to do that successfully is the conundrum. I actually know what needs to be done, but even if I can line everyone up, get my INR up with blood thinners etc., there's still no guarantee that they'll get it all. This is kind of like a slowly spreading cancer but the docs don't really know what they're looking for and the images they rely on to figure it out are almost worthless. :-( In the meantime, the infection & the inflammation are doing their damage. phagelod <mpalmer@...> wrote: PennyI 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/26/4/985I 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> > > >

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Makes sense to me. You're always able to articulate my intuitive sense of things so well. Thanks for that. pennyphagelod <mpalmer@...> wrote: PennyI 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).aspI 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> >

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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 would *think* that once the damage is done you can't reverse that.

Therefore you can't reverse the "brain fog." Although, I have MS

too so I can never tell what's coming from what.

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.

Yeah, you may find some successful "brain fog" disappearing

cases on the boards. It's hard, but are live-able.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.

I wonder if infection/inflammation increases intracranial pressure and that this precipitates symptomatic Chiari in those with the pre-existing malformation - Now *this* I buy. It sounds logical to me.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?

Yeah...Matt

KLS