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spinal/cranial fluid leaks anyone?
Posted: 30 September 2011 10:57 AM   [ Ignore ]  
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just curious what symptoms you all may have with them? I have a ct myleogram scheduled for next week- heard that’s the best way to discover leaks/defects.

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Posted: 24 October 2011 03:51 PM   [ Ignore ]   [ # 1 ]  
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dawnrulost - 30 September 2011 10:57 AM

just curious what symptoms you all may have with them? I have a ct myleogram scheduled for next week- heard that’s the best way to discover leaks/defects.

Hi dawnrulost, I didn’t have any luck with the CT, but a beta-transferrin test was able to pick it up. You only need to collect .5 -10 mm. (.5 is easy). Please let us know! smile Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 03 November 2011 09:34 PM   [ Ignore ]   [ # 2 ]  
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Did you have a CT myelogram Dr. Diane? When they do the beta test…where do they get it from. I sometime have a crusty film ( I know…gross) in my ears and wondered if that was spinal fluid…

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Posted: 14 November 2011 08:23 PM   [ Ignore ]   [ # 3 ]  
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Momof3 - 03 November 2011 09:34 PM

Did you have a CT myelogram Dr. Diane? When they do the beta test…where do they get it from. I sometime have a crusty film ( I know…gross) in my ears and wondered if that was spinal fluid…

I cannot tell you how many patients tell me they have fluid coming out of their ears! It’s amazing. I don’t know how they collect that, but I bet a neurosurgeon or ENT would know… Will you let us know, Hon? Thanks so much! smile Diana

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Posted: 11 October 2012 01:46 PM   [ Ignore ]   [ # 4 ]  
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footprints001 - 11 October 2012 04:54 AM

Go to a doctor immediately, maybe a sign of a illness.

Boy, I HOPE it is that easy for you… I had to see 4 different doctors, then finally BRING THEM the lab test, where to send the fluid, etc. The test, BTW, is a beta-2-transferrin test (you can google for a lab to do this). Most docs don’t check for this very often, and I found that my docs needed a fair amount of help/hand-holding. Now, when the results came back positive, it was more evidence to my docs that my ICP was high, at least sometimes. I chose to go/stay on Diamox, rather than let them try to repair it surgically. They said there was a 20% chance of developing meningitis. I decided to “roll the dice” because I knew I didn’t heal well, and surgery could very well cause more leaks. Indeed, Diamox took care of it. Many of these leaks self-heal once the pressure is down. I know of one patient whose doctors found SIX leaks! Yikes. I believe they still chose NOT to do surgery (her bones in that area were so incredibly thin). Certainly, talk to your docs, but I’d encourage you to be proactive in getting your fluid tested. Cool? Please let us know how it goes!!! smile

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Posted: 30 January 2013 12:57 AM   [ Ignore ]   [ # 5 ]  
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so useful information

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