Hold your breath!

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

Postby eve » Fri Mar 26, 2010 6:32 am

Okay so here I am, hope this is clear?

http://www.youtube.com/watch?v=IWbnKAAsT40
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby hope410 » Fri Mar 26, 2010 6:38 am

Yes, I can see that on you! Are they veins or muscles that enlarge?

I tried it, but I don't have any enlargement myself.
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Postby eve » Fri Mar 26, 2010 6:53 am

It's my vein, and as far as I found out it's the right internal jugular.
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Hold your breath!

Postby petebou » Fri Mar 26, 2010 7:38 am

hello Eve,

have you asked Dr Sclafani's opinion on this phenomenon ?
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RRMS diagnosed '92; both IJVs ballooned and stent in azygos March 31st in Katowice, Poland.
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Postby eve » Fri Mar 26, 2010 7:46 am

That is a really good idea, I'll ask him. :)
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Postby Algis » Fri Mar 26, 2010 8:05 am

If any enlargement; here; it would be only noticeable when I keep my finger lightly pressed on the area... 1mm? Maybe less.
Nothing here I guess :(
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Postby Asher » Fri Mar 26, 2010 9:33 am

Eve, wife and friends are all normal, that is to say that nothing shows up when they hold their breth. I'm perplexed, eager to hear the docs answer.
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Postby eve » Fri Mar 26, 2010 10:39 am

Yes me too Asher, I hope he has some thoughts on the subject.

On the Dutch forum the first left jugular popped up. And the proud owner has recently been diagnosed with CCSVI, stenosis left jug.
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Postby thisisalex » Fri Mar 26, 2010 10:44 am

im not a doctor... but isn't it the external jugular?
anyhow, its strange...
just wondering what dr Sclafani is going to say...

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Postby eve » Fri Mar 26, 2010 10:52 am

I hope the docter can help us out on that one.
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Postby akaheather » Fri Mar 26, 2010 12:36 pm

I was treated by Dr. Dake in Oct, but still thought I would check. No bubble, thank God.
The video was awesome. That definately looks like something worth checking out. I am curious to see what Dr. S thinks.
In the mean time, I would try to do that as few times as possible. My first attack was after the birth of my first child where I had to hold my breath repeatedly (valsalva). There just might be a deleterious connection.
That being said, it would be interesting for more of us to try it, just once, for posterity.
Last edited by akaheather on Fri Mar 26, 2010 5:23 pm, edited 1 time in total.
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Postby julu » Fri Mar 26, 2010 5:13 pm

Now that my husband and I are done laughing hysterically, I'll share our results. :D

My husband, in perfect health, has absolutely no swelling around the bottom of his neck no matter how long he holds his breath and bears down (and it was a long time). I have MS (not tested for CCSVI yet), and when I do the same, the hollows at the base of my neck immediately fill and swell slightly and the veins above begin to swell out. Both sides, left more than right. Not as pronounced as yours, Eve, but definitely present.

I wonder if some of the difference could be due to our neck structure. His is thick and muscular and could hide the veins pretty well. Mine is more "elegant" :wink: and can't hide much. But there is most definitely a difference in what appears to be blood drainage (or lack of it) while holding one's breath.
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Postby L » Fri Mar 26, 2010 7:39 pm

Well, again I'm atypical. People have reported a reddening in their face with exorcise, this doesn't happen to me. Likewise, holding my breath doesn't reveal anything. People with MS report cold, blue or red feet. Well, I used to have blueish feet but last summer they became normal in appearance again, they've warmed up too.

The narrowing of veins can occur in places other than the jugulars, right? Perhaps this explains some negative scan results, unusual locations - a standard protocol would only cover the neck and shoulders, right?

I don't know if I should be happy or disappointed! I bet I'd be one of that few percentage of MS patients with negative CCSVI results. Has anyone here been given a negative result and not conformed with this little test and the reddening of the face during excercise?
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Postby eve » Fri Mar 26, 2010 11:00 pm

Hi L, I never had the redface either. :) My neuro has said I have atypical MS too. (mainly because I unexpectedly improved really well after years of misery)

All I can say is that not everyone with MS seems to have these swellings, but all people that do have them - in my little not very scientific research- have MS.

I would love to be scanned and see where my blockages are - I think that we might find that people who have this swelling will all have stenosis in much the same place. Or so I guess. I hope Dr S will have some time for me today. :)
Last edited by eve on Sat Mar 27, 2010 12:39 am, edited 1 time in total.
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Postby hope410 » Sat Mar 27, 2010 12:38 am

I was just watching Entertainment Tonight on tv, and Samantha Harris's right side also seems to bulge out prominently when she speaks.
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