Heard Back from the NIH

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby CNClear » Sat Oct 03, 2009 4:40 pm

Sure wish there was an alternative to the Coumadin, but when I looked it up, the alternatives, like Heparin, despite having to be given intervenously, and just 2 days ago had a massive recall due to contamination, they think...there doesn't seem to be a good alternative...I am more leery about the Coumadin than any other part of the surgery...

Hey, I have a question that I keep forgetting to ask and maybe you can help me with...Why are you awake during the procedure? I'm kinda paranoid about anethesia anyway, and I dont mind that i will be awake during it, and I know that the docs don't like to use heavy anesthesia on people with MS (at least that's what they told me...) and is there some discourse that goes on during it? If so, how do you keep still?

Thanks to anyone who can answer this, as it has been bugging me to know the answer for a while now, but the damn brain fog keeps getting in the way and i can never remember to ask...that's why when it came to me now, I knew I better ask...


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Postby CureIous » Sat Oct 03, 2009 5:13 pm

CNClear wrote:Sure wish there was an alternative to the Coumadin, but when I looked it up, the alternatives, like Heparin, despite having to be given intervenously, and just 2 days ago had a massive recall due to contamination, they think...there doesn't seem to be a good alternative...I am more leery about the Coumadin than any other part of the surgery...

Hey, I have a question that I keep forgetting to ask and maybe you can help me with...Why are you awake during the procedure? I'm kinda paranoid about anethesia anyway, and I dont mind that i will be awake during it, and I know that the docs don't like to use heavy anesthesia on people with MS (at least that's what they told me...) and is there some discourse that goes on during it? If so, how do you keep still?

Thanks to anyone who can answer this, as it has been bugging me to know the answer for a while now, but the damn brain fog keeps getting in the way and i can never remember to ask...that's why when it came to me now, I knew I better ask...


Lisa



You are awake so you can "participate" by holding your breath for indeterminable lengths and basically staying still the rest of the time. Very still. There is someone tasked with your every scratch>needs>itch etc. You are very much an active participant in the process. It's pretty easy to stay still and relaxed when they are pushing the morphine. I can't speak for anyone else, but my stress level was pretty low during the whole thing, was more concerned with not listening for his cues than anything. It was very relaxing. My only thing was nobody told me when to exhale on a number of occasions lol. My only regret was not being able to see the monitors very well just cause it all seemed so interesting! The "discourse" is pretty much them telling you what to do and when but it's fairly tame, "hold your breath, little longer, little longer, okay breath out". Stuff like that. You are underneath a big sterile sheet with your head poking out one end, and feet out the other. In the middle is a little opening that goes over the tiny incision they make to gain access.

Since I had 4 stents there was a bit more "breath in, hold it" involved I'm sure than if only 2, but everyone is different in every way but I wasn't bored that's for sure!

Mark.

Forgot to add, that my feet are EXTREMELY ticklish, so when they went to take the booty off to put the heart rate monitor on, it turned into a keystone cops affair lol. I begged em to let me do it with my other foot. Begged! That was all before the actual procedure began but hey fair warning next time! lol.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby mrhodes40 » Sat Oct 03, 2009 6:28 pm

Ditto! I was so interested in everything and so high on dilaudid that I was fine no wiggles no spasms--I did ask to have my legs tied down though in case I spasmed, but I had no trouble.

Fentanyl which is the favorite drug makes me vomiting sick, I knew this ahead of time from my hysterectormy so I said no Fentanyl give me dilaudid. It was perfect for me...no nausea no vomiting. and floating on a happy curious cloud I kept talking and asking questions Dr Dake doesn;t want you yakking though he wants you to drowse which is easy given the drug cocktail.

and yes "Ok Marie breathe......hold iiiiiitt.........................(click) (people moving about)...............................................


can I breathe now doc?? ...uh oh! yeah!.................whoosh; thank goodness.....................!!! :wink:

I was not scared at all personally, just happy to be there.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby CureIous » Sat Oct 03, 2009 7:06 pm

Thanks Marc for allowing us to get muddy footprints on your front porch....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Sharon » Sat Oct 03, 2009 7:31 pm

At one point during the procedure, Dake told the nurse to give me more drugs. He told me to shut my eyes and quit being so curious :cry: I wanted to see the monitors!

DITTO to the other posts - very relaxed - kind of in la-la land - that is until the stent was pressurized -OUCH!

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Postby CNClear » Sat Oct 03, 2009 9:21 pm

Thanks for all the insight! It really does help when you are sitting in the dugout or on the deck or where ever I'm supposed to be...waiting and wondering...

You guys almost make it sound like fun! (You really are a unique bunch)

:)
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Postby CureIous » Sat Oct 03, 2009 10:07 pm

CNClear wrote:Thanks for all the insight! It really does help when you are sitting in the dugout or on the deck or where ever I'm supposed to be...waiting and wondering...

You guys almost make it sound like fun! (You really are a unique bunch)

:)
Lisa


For that being my first "surgery" beyond spinal taps and a CT myelogram, I was really expecting this scene from ER. I don't know what crew you will have in there, but if you are lucky enough to get the ones I had, they are quite a lively bunch. My first instruction to them, was to PLEASE do and say what they would normally do and say if I was dead to the world. That made it way funner so they weren't being all stuffy and proper cause the patient is awake lol. Sometimes it was hard not to laugh. Of course when the doc is standing there doing stuff it's ALL biz. Camraderie is good though, makes for a good team, you feel safe. You realize at that point, when this orchestra is playing, that you are glad to not be anywhere else.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby zap » Sun Oct 18, 2009 8:42 pm

marcstck wrote:I've been waiting patiently (well, not that patiently) to hear back from her, and I finally tried to reach her this past Tuesday. She didn't get back to me, and when I tried to call her today they told me she was not in. This is very unusual, as she's always been very responsive in the past.

I'm scheduled to go back down to the NIH for some more work ups on October 18 (a lumbar puncture and lymphopherisis, primarily for their research purposes), so at the latest I'll be able to follow up with her on the CCSVI subject than. I expect she'll get back to me before then, though, if not tomorrow then early next week.


Keep us posted!
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