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Old 07-17-2008, 10:20 PM
Michelle ANNE Michelle ANNE is offline
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Default Chemical meningitis

I had an appt. with my ns today. He is positive that I don't have a csf leak anymore. One of the biggest reasons he thinks my leak is gone is because my headaches don't get better when I lay down anymore. I know from this forum that many people who have had their leaks for a while loose the positional nature of their ha. He showed me the MRI from the myelogram in March and the one they did last Friday. They looked markedly different. I talked to him about the fact that the myelogram was done differently this time, but he is so sure that there is no leak that he didn't really want to hear it. He actually said to me that he didn't want the appt. to be adversarial. I told him that I didn't want that either, but that I am still having the same symptoms and don't understand why I would still have them unless I still had a leak. He thinks that I have chemical meningitis. He says that the symptoms are pretty much the same. He has given me 5 days worth of steroids which he says should take care of the inflamation. He also wants me to see a specialist to see if there is pressure on my occipital nerves. After the steroids and specialist we will decide what to do. I really hope he's right, but I have my doubts.
Michelle
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Old 07-17-2008, 11:00 PM
LauraL840 LauraL840 is offline
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I don't blame you, I'd have my doubts too. But, his 'course' of treatment won't hurt. I think the hardest thing about leaks is that doctors feel as if it's an incredulous diagnosis and that it's just 'easier' to diagnose EVERYTHING else first! Ooooh, it's migraines ... ummm, nope, then it must be stress, or PTSD, or depression, or chronic meningitis, or chronic daily headache, or you're making it up, or 'are you SURE' this is how you feel? ....

Sometimes I hate doctors - but I think I've already said that today....
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Old 07-17-2008, 11:25 PM
mindi mindi is offline
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Michelle Anne,

I just wanted you to know that even though I have a spinal leak, the pain in my head NEVER goes away when I lie down. It definitely INCREASES when I get up, and diminishes when I lie down, but it's never completely gone - not even close. Actually for the first 2 weeks or so it was extremely painful while lying down, to the point I couldn't sleep, etc.

I have also heard (and read) that as time goes on it becomes less positional. Mine is actually less positional now as well, even though the overall pain level has decreased.

There are many articles out there that say the headaches are usually positional in nature, but how that is not always the case. This has been my point of difficultly as well when communicating with doctors. Doctors don't know as much as they think they do about this condition. They don't see it that often.

P.S. I also just finished a week-long steroid pack a week ago - didn't do anything.
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Old 07-18-2008, 08:47 AM
LauraL840 LauraL840 is offline
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Oh, and to add to my earlier 'rant', DH's headaches NEVER went away when he laid down either! What Mindi described is pretty much what his experience was too.

When he had his repair, the HA was gone for 3.5 weeks, then when it came back it STILL doesn't go away completely when he lays down although it is MUCH more orthostatic when he stands!
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Old 07-18-2008, 09:38 AM
sadlisa sadlisa is offline
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I agree that over time the headache does not have the strong positional nature. My HA is now considered an exertional HA. Why is it so hard for the doctors to believe that the body does learn to adapt to it's condition? Maybe because they never have had to deal with a long time leaker. I think as we start to produce more CSF and heal a bit the orthostatic nature of the pain goes away. Thia
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Old 07-20-2008, 08:41 PM
CSFChallenged CSFChallenged is offline
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Michelle,
Warning...Rant Ahead...." I am so p.....d at your doc I could spit!!!!!!!!!!!!!!!!!!!!!!
Here is the quote from Dr. Mokri's (I'm sure you've seen it) Index article (meaning one of the first articles in the field to address a a particular disorder that has since become an undisputed reference for other providers in treating this condition....Although there has been many since, the basic tenets of this article still hold true. ) It is one of many articles that points out that the orthostasis can be lost,the scans can be negative and the pressure can be normal!!!!! Here is the quote and the link so you can show your doc. I can post more if you don't have them. They should be a part of our "leaker Bible!"

http://thejns.org/doi/pdfplus/10.3171/foc.2000.9.1.6

"The typical clinical manifestation in CSF volume depletion
is orthostatic headache—a headache that typically
occurs when the patient is upright and relieved by recumbency.
It may be bifrontal, occipital, occipital and bifrontal,
or holocephalic, and it may or may not be throbbing.
"Variability in the form of headache, however, is considerable.Sometimes, particularly in patients with chronic
headache, the orthostatic features may blur and the headache
may take the form of a lingering chronic daily
headache that may or may not be more pronounced in upright
position.
Sometimes the headache may begin as a
lingering headache, and typical orthostatic features may
appear days or weeks later. At times the headache may be
preceded by neck pain or interscapular pain for days or
weeks. In patients with intermittent CSF leaks, the headaches
(and any of the just-described features) may disappear
for variable periods and reappear again.
"

I would consider saying this..."OK, I don't want this to be adversarial either and would like for anything for this to be better....soooooo, I will try the steroids, but in the meantime would like for us to conference call with Dr. Wouter Schievink, the most experienced specialist in this field and ask him about my symptoms, my treatment and current status. And before I try the steroids can you show me some references that outline this as a successful treatment for my condition so that I am an informed consumer. I know that steroids can impede wound healing and I certainly don't want to make anything worse. (There are reports (even on braintalk) that people have gotten better on steroids but they are case reports only and not double blinded placebo studies that prove it was a result of the steroids. They could have naturally healed on their own, and the timing of the steroids was coincidental. ) If it was your family member what would you do if they were clearly still suffering?"

I'm sorry, but I am also confused about his comment that chemical meningitis gives you the same feeling as a leak....? Where did he put the glue and where do you hurt? Do you feel dramatically different since the fibrin?

Also, he is comparing apples to oranges by looking at both tests and saying he can compare them based on the same criteria....Different test! And besides we all know that a negative test does not mean the leak is gone especially in light of persistent symptoms. Grrrrr...I just want to set him down with Schievink for a big fat leak lecture 101. Heck, I'd almost buy him a ticket to go see Schievink!!! Maddening!!!!! and not what you need!

Although my headache does still improve when I lie down(unless I'm ranting of course), it never ever, ever goes away now like it did in the beginning and my last MRI showed no enhancement.

Has he read the article? any articles? Has he heard about Laura's DH and his seeping dura after fibrin glue? Would you like me to call him?????? Mail him a info packet? I'm about ready to jump in.... you have the patience of a saint my dear. I am normally very patient, but when these docs are blatantly stupid, and not up on research when they have a case, I feel obligated to get in their face and raise cain.

Take care...get in his face then make him talk to Dr. S. Although Dr. Mokri is closer to you and still one of the original guru's he is much less aggressive with negative imaging than Dr. S. and may tell your guy to stop looking.

CSFChallenged
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Old 07-21-2008, 01:14 PM
wobbles wobbles is offline
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Michelle:
With Challenged in your corner your doctor(s) better watch out! I agree with everything she said. I feel so fortunate that my new NS is comfortable with his skills and not afraid to ask for help from Dr.S or to say "I don't know but I'll find out". He seems to be a rarity based on others' experiences.....

How 'bout copying the article that challenged quoted as well as Dr.S's 2006 JAMA article (which is a good summary article) and giving them to your docs? I did that last year with my Kaiser docs and attached a note saying...."this is my headache...if not this...then what?" It got them thinking in the direction of a leak and eventually got me the EBP which helped for 9 months. Perhaps this would work for you as well.

stay strong-

wobbles
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  #8  
Old 07-21-2008, 02:01 PM
GingerLox GingerLox is offline
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Dear Michelle...........I had chemical meningitis following my flourescein study. It happened within 8 hours of the insertion of the contrast. It lasted about 12 hours. Once the chemical made its way out of my brain, the meningitis went away. I can't imagine why you would still have symptoms of chemical induced meningitis this far out from the procedure. It would seem like the contrast would have cleared by now........hmmmmmm?
Did they test you for the typical meningitis type symptoms...can't touch your chin to your chest, can't flex your feet upward? I think they call it the babinski sign???
If you have chemical induced meningitis, it seems they should have hospitalized you and they should be ready to test you for full fledge meningitis....as they can't possibly know what the source of your meningitis is following a lumbar puncture. Your doctor sounds like he is filling you up with misinformation, just to provide you with an answer.

GingerLox
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Old 07-21-2008, 02:55 PM
LauraL840 LauraL840 is offline
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There is also a condition called 'chronic meningitis'. Perhaps this is what the doctor meant to convey? When DH was at his first UNC appointment in February 2007, they did a LP to check for this as the description of a meningitis HA and a leak HA are pretty much the same ... the major difference is that a meningitis HA is NEVER orthostatic and one of the major 'complicating' factors in diagnosing a leak is that many chronic (6 months or more since leak onset) spinal leakers lose the orthostatic feature!

However you have to have had meningitis to develop chronic meningitis, chemical meningitis could cause chronic meningitis. But as the wife of a man who has had meningitis twice, it's a SUDDEN onset! Both times it came with high fever (103+), INABILITY to touch chin to chest (not just pain in trying to do so, but not able to do so), and searing burning headache! Those are the triad major symptoms. The 'minor' symptoms; nausea, can't tolerate lights or sounds, confusion, apathy. Those were just symptoms DH experienced; everyone's different on the minor symptoms, but the major 3 are the KEY to diagnosing meningitis.

Some links that might be useful on meningitis:

Merck Definitions: Chronic Meningitis

Chronic Meningitis

Severe symptomatic aseptic chemical meningitis following myelography

Chemical Meningitis


Regardless, it's been about 5 days now right? Feeling any better? I think your doc is FOS (full of something )

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  #10  
Old 07-22-2008, 01:53 AM
Concerned Gal Concerned Gal is offline
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i don't think you have chemical meningitis. I think you have just fallen into the category that others are in that their leaks are now hiding or have slowed down to not be appropriately imaged. That fibrin would have done something and looks like it has slowed your leak down (thankfully) but which means that your surgeon isn't as confident that your symptoms put in you the category that needs invansive treatment.

Hoping the steroids will assist you a bit and reduce (if any) inflammation.

I think you have a bit in the same situation as me. Had geared yourself up to get some surgery down to try and kick this once and for all, and then found the 'target' has been moved on you.

For what it's worth. Since all my problems started with this leak, herniation etc, i have NEVER been able to touch my head to my chest. Ever. More than 2.5 years. It doesn't just hurt, I literally can't do it. Just wanted to mention.
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