This Is MS Multiple Sclerosis Community: Knowledge & Support

This is so amazing and fast. WOW! I will pray for the J-Team tonight. How or when do you expect to experience some sort of effect? Ken

I've spent a fair amount of today realizing that years of MS reading has not prepared me to discern this topic. I've printed up a lot of "basic" web stuff on brain veins and will start reading tonight.

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Thanks from the Js to the K Team
Not sure what to expect, Ken. Jeff feels yucky now...a bit stomach sick and some pain...just coming off the conscious sedation. Dr. Dake seemed to think he'd feel less brain fog and fatigue pretty soon. We'll know more in the coming hours, days, weeks. But Jeff said even feeling icky now, he's glad he did this, and that Dr. Dake was "amazing."
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

great news indeed cheer!!!! now let the healing begin!

Ken....
there's really not alot of new information to understand. We know that there is slowed perfusion (blood transit) in the MS brain, that lesions are formed around vessels, that apoptosis happens before lesions form, that there is evidence of hypoxia in the MS brain...
the only new bit to comprehend is that there is a mechanical cause down river from the brain. We haven't looked there before.

When our house flooded five years ago, it was caused by hydrostatic water pressure....so much rain came down in so little time, the underground creeks were swollen, the water had no where to go and came up thru the cement slab of our home. The water didn't come in thru doors or windows- pressure sent it up thru the slab! No matter how fast we vacuumed the water up, more came in from below. When the storm had passed we installed some french drains around the perimeter of our foundation, and voila! No more flooding.

The MS brain and spine is surrounded by a french drain system, the jugular and azygos veins. If these drains are blocked, blood refluxes into the CNS, flooding the system.

The immune system is activated to help clean up the reflux and sweep up the dead cells. The immune system is not the activator, it is doing its job. It wasn't our wet vac's fault our house kept flooding! Until the drainage is restored, damage continues.

Jeff has some snazzy new drains in his neck. I look forward to seeing how the stents help MS patients around the world.
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I think he'll feel better right away. Yes, there is clean-up to do, and healing needed, but the blood will be flowing. I think that sense of feeling "just not quite right" should be gone. I really wish we knew if this is congenital or brought on by something else. Time will tell, I suppose. If it is congenital, it would be a one time fix, wouldn't it? If something else has caused it, then the race is on to figure out what, and make sure it doesn't continue. I actually tried to email a doc in Cincinnati this morning. When my email didn't go through I clicked out of it and lost it before thinking. That was a big step for me. It got me nowhere, but after three years with no MS meds, it was in fact a really big step anyway. There has been no treatment until this that I believed in enough to really look into. Still, baby steps for me.
One question, though. MS often presents as Optic Neuritis. Can anyone explain if that makes sense in this?
Terry
Oh, and Cheer, congrats. I hope Jeff is home to you really quickly! I also want to thank you for your amazing effort. And Marie. Thanks for all your info. Your nursing history shows in your posts. It is much appreciated. I hope all this turns into absolute success.

was wondering the same. hope jeff is good also

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Had ms for over 19 years now.

Heehee, Robbie. I think you and I will hold back our stubborn selves until we are absolutely convinced. But when we are totally convinced- we're doing this thing- right? BTW, I am mowing again. Came upstairs for my water glass. How's the lake?
Terry

Here's one of the first search results on Google for "optic neuritis" and venous:

Vascular Mechanisms Implicated in Optic Neuritis & Multiple Sclerosis: http://www.geocities.com/HotSprings/3468/on-vascular.html

Terry, I'm proud of you for writing your letter...that's a very important step. I think it's important to be a naysayer and cautious. I tend to be more impulsive, and it's sometimes gotten me into trouble...

Robbie-Optic neuritis is inflammation of the optic nerve - the process of demyelination happens in exactly the same as the brain. The optic nerve is drained by the retinal veins, into the superior opthomolic vein, into the cavernous sinus and then the internal jugular veins. Hub posted some great studies on how the retinal vein is messed up in MS. So jugular blockage would be implicated.

Now, here's a kicker from Jeff's history. Jeff has had bilateral drusen since he was a kid (they're like yellow fatty blobs on his optic discs). He has no peripheral vision. Most folks with drusen don't have any vision problems, the drusen are buried. I wonder if the blockage in his jugulars contributed to pressure on the drusen, and occluded his vision. We'll see if he gets anything back.

So, to answer your question, CCSVI could certainly be implicated in optic neuritis. Probably of the jugulars.

Jeff's good...he's taking a rest. May stay over at the hospital tonight. We'll see what the doc says.
AC

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Jeff's staying overnight. Dr. Dake thinks it best, since he had the double procedure, and had some nausea/pain issues and needed medication. Jeff sounds good, but tired (he never got his coffee or provigil today!)

Once Dr. Dake got in there and saw how the blood was flowing with one stent, he realized that two would be better. I can't imagine how all that reflux would have kept affecting Jeff's brain and spine...

Jeff will be on some anticoagulants for a couple of months, and he'll go up in two months for some more MRVs to check how the stents are doing. He can go back to trumpet playing and giving me a tough time, but looking up at the stars and twisting his neck at the same time are a no no.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Well it sounds all good then Cheer! I am glad he is not flying today. he'll feel better tomorrow !

Best wishes and blessings
marie

Cheer, Was he happy with the blood flow after both were done?

yup. Pretty excited, actually.

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hub those links are interesting and old too! that's the thing that is so strange they've known for ages that MS has a venous compnenet but just did not understand what it meant. It takes these new technologies in living people to see what is what.

Good.

Good night, Jeff. Sleep well. And...thanks.

Terry