Notes from CureIous' at Stanford

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

Postby Sharon » Wed Oct 14, 2009 7:35 am

Hey, Mark!
So, the ride back home was a white knuckle experience :( Glad you are home safe and sound.
Was also happy to find out I wasn't the only one with the weird sinus stuff happening either, but that seemed to be a phase and is now non-

I cannot remember you posting anything about this - did you have sinus congestion or sinus pain?
Get some rest today - sounds like you can use a little "down time".
Sharon
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Postby CureIous » Thu Oct 15, 2009 9:18 am

Sharon wrote:Hey, Mark!
So, the ride back home was a white knuckle experience :( Glad you are home safe and sound.
Was also happy to find out I wasn't the only one with the weird sinus stuff happening either, but that seemed to be a phase and is now non-

I cannot remember you posting anything about this - did you have sinus congestion or sinus pain?
Get some rest today - sounds like you can use a little "down time".
Sharon


Well, I get sinus "issues" about once a year like clockwork then very little to nothing the rest of the year, so was hesitant to lay it all at the feet of stenting until it cleared up/got better/stayed the same. It's not even an issue now. Now I say "sinus" for lack of not knowing exactly what it was, but it was not onerous or debilitating or restricting. I know my tinnitus has gone down considerably from where it was at my highest INR. Same ear for both the tinnitus and the "sinus" stuff as I call it. He said my MRI showed my sinuses as looking fine.

Now the particular symptom, felt almost like fluid in the ear and/or pressure, nearly exactly what you would get on an airplane when changing altitude, but ONLY on that right ear where my tinnitus is. Positional changes or head tilting certain directions would block off the sound in that ear, so of course I'm thinking fluid/sinus type stuff. Yawning would sometimes help, or tilting head or pulling ear lob out but it would come back at intermittent times. Now if it still continued to this day I would be concerned, but my sense is that things are adjusting up there in the old melon to a new flow of things and since blood carries fluid and such, let's just wait and see how it levels out.

My ears still adjusted to elevation changes quite normally on the way up there through the mountains, just like on the way home, so that hasn't changed, which is good! :)

Reason I put sinus in " " marks, is that I tried all the over the counter stuff I had on hand, sprays and all that, and it did little or nothing to help the blockage. Plus I didn't feel stuffy at all, and no sinus pressure or sensitivity on the eye socket on my right side where it always hits. Interesting tho that everything focuses on that right side, sinus, tinnitus, ear-sound-blockage. What to make of all of it?

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 » Thu Oct 15, 2009 9:26 am

Could it be that increased blood flow is causing more oxygen than your body is used to being absorbed into the blood stream in the middle ear?

This can create a vacuum that feels like an infection or pressure, which can be relieved by opening the eustachian tube (by yawning, etc) ...

(I've been interested in the mechanics of yawning and its relationship to brain blood oxygenation, but not sure if this really relates or not.)
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Postby CureIous » Thu Oct 15, 2009 9:41 am

zap wrote:Could it be that increased blood flow is causing more oxygen than your body is used to being absorbed into the blood stream in the middle ear?

This can create a vacuum that feels like an infection or pressure, which can be relieved by opening the eustachian tube (by yawning, etc) ...

(I've been interested in the mechanics of yawning and its relationship to brain blood oxygenation, but not sure if this really relates or not.)


All of that is very possible. Plus we need to keep in mind that with high INR's (I call 3.5 high but it can get much higher), the blood is very thin and that may have something to do with it i.e. permeability. Forget what the proper term is. I would recommend everyone to wait and see for the 2 month mark AFTER stopping the thinners to see how things level out before being overtly concerned about things like this. After all, we've made some pretty drastic mechanical changes in the flow, for the better, and the body will adjust and adapt to those changes over time. Plus everyone is different, which cannot be stressed enough. I had issues with this pre-procedure, they exacerbated after procedure, they (I speak specifically of tinnitus) are mitigating or reducing steadily, and I've only been off the thinners for a week. Sweet!

The rest of the aforementioned improvements are still there, and again, for the record, if I had the chance to do it again, I would have done it sooner!

:) 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 Loobie » Thu Oct 15, 2009 10:10 am

Mark,

I think I get that too. When your ear feels "full", can you feel the vibrations in your ear when you're speaking? That happens to me on a fairly regular basis.
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Postby radeck » Thu Oct 15, 2009 10:11 am

It would be informative to hear if any of the patients who were treated in Italy had similar problems, wouldn't it? As far as I know GiCi is the only one posting here...
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Postby Jamie » Thu Oct 15, 2009 1:04 pm

I know...

Its amazing though just how much data we have and how many people are sharing considering this only popped up in the spring in our awareness.

That radio article was awesome and BC seem very bullish.

Intervention is the next step up there hopefully.
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Postby Arcee » Thu Oct 15, 2009 3:16 pm

Definitely bullish. Evoking the ulcer example and talking (and miming) interventions in the neck and really touting their guy as central to it all? Seems suggestive that they are sitting on really good stuff and want the world to know it comes from them.
It's so great that it's in a totally understandable form for the public.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby mrhodes40 » Thu Oct 15, 2009 3:41 pm

Seems suggestive that they are sitting on really good stuff and want the world to know it comes from them


I tell you what: they are not watching their doppler study show poor results or results way different that Zamboni's then standing around talking like that, they'd look like idiots if they did that when the findings actually come out. Researchers are pretty quiet about their stuff ahead of time usually unless they are really confident.

I agree with Arcee, they want people to know right now they were on this ahead of time....

I kind of think that they might want to be sure they upstage any documentaries that are coming out---"we were here first" type deal. thinkso? :wink:
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 Jamie » Thu Oct 15, 2009 3:52 pm

Exactly.

I was surprised by the lack of hedging.

Great that they are onto the iron deposit and SWI technique to track things.

Hopefully they'll keep the same protocol tracking things post intervention.

The results they are about to unblind should be consistent with Zamboni and Dake and if they are then that will be a huge boost in the USA.

Especially with the neuros involved.

You can sense things taking off, even by the activity and new members here on TIMS.
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Postby radeck » Thu Oct 15, 2009 5:14 pm

deleted because nonsensical
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Postby Arcee » Thu Oct 15, 2009 5:18 pm

Continuing the hijacking of this thread...

Great that they are onto the iron deposit and SWI technique to track things.


Anyone know for certain if that will be in the Stanford protocol when we all go back for Year 1 testing? I figure there is still plenty of time to arrange it, but am also guessing it is on many of our lists so may as well coordinate our efforts.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby CureIous » Thu Oct 15, 2009 10:31 pm

Arcee wrote:Continuing the hijacking of this thread...

Great that they are onto the iron deposit and SWI technique to track things.


Anyone know for certain if that will be in the Stanford protocol when we all go back for Year 1 testing? I figure there is still plenty of time to arrange it, but am also guessing it is on many of our lists so may as well coordinate our efforts.


Oh I've hijacked enough myself lol. Totally agree with everyone on how they wouldn't do this without some solid prelim results. Nothing like getting ahead of the 8 ball.

I asked Dr. D. about SWI too, he seemed excited about it. Be nice to get us stent-o-teers (that's a cheerleader trademarked name btw) tested on SWI as baseline NOW then 1,2,3 years later. Still wondering where all that iron is going to go.

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 CureIous » Thu Oct 15, 2009 10:34 pm

mrhodes40 wrote:
I kind of think that they might want to be sure they upstage any documentaries that are coming out---"we were here first" type deal. thinkso? :wink:


Couldn't agree more.
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 » Fri Oct 16, 2009 8:01 am

tinnitus


Not to do a major hi-jack, but I just want to mention that aspirin is FAMOUS for causing tinnitus.

Even the tiny dose........ :wink:
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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