MRV in Chicago

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

Postby magnolia30l » Sat Mar 06, 2010 1:06 pm

Wow! This is so much to take in. If an angiogram showed my IJVs are ok, then does this mean that i do not have CCSVI? He only looked in my brain but if stenosis was in the neck, wouldn't he still see the problem in my brain too? Looks like it would be backed up. Zambonis paper said that 80 something percent of the people he looked at had the problem in the azgyos vein so I am not sure how he found that either. Did they check hat vein in Buffalo I wonder? I guess I am just going to relax, take a deep breath, and wait for the proper testing to come to a place near me. Trying to get these regular tests might not be the best idea right now. Please let them hurry!!!
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Postby Cece » Sat Mar 06, 2010 1:18 pm

magnolia30l wrote:Wow! This is so much to take in. If an angiogram showed my IJVs are ok, then does this mean that i do not have CCSVI?


I think you're correct. The test you had is the gold standard. You could still have the Cheshire Cat-style CCSVI that prof8 reported (it showed up on tests but was gone two months later) or the person doing your test considered some borderline issues to not be CCSVI when someone else would have considered it CCSVI or there is also positional CCSVI where it only shows up when you turn your head to the left or right because of the muscles then cutting off the vein or, as you've said, you could have something in azygous that was not tested that would be causing localized reflux that does not extend as far as the brain area that was tested.
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Postby magnolia30l » Sat Mar 06, 2010 5:59 pm

I guess this is why we need to wait and get tested from someone who has been trained to look for it. Bummer! I hope this catches on fast.
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Postby Donnchadh » Sun Mar 07, 2010 8:42 am

I am starting to get PM's asking for the name of the IR Doctor. He specifically asked me not to do that right now, as his practice is trying to figure out the procedure.

I jokingly refer to myself as lab rat No. 2 because he has only done one procedure so far. I have no doubt as to his ability as an IR, because of his experience. What is needed is experience in using the CCSVI detection protocols.

As someone with PPMS for twenty years, trust me I will release any information as soon as the Doctor OK's it.

Donnchadh
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Postby Donnchadh » Mon Mar 08, 2010 3:36 pm

Had the color Doppler ultrasound today. The technician was very professional, and interested in applying the CCSVI protocol. She examined both sets of veins, both supine and sitting upright. The testing took about 45 minutes. I could see the veins imaged in color, but as a layman I have no idea what that meant. She said the radiologist would interpret the images and give the results to the IR doctor.

This is the hard part for me as I have no idea if anything was discovered or not. Waiting for the results from the IR doctor is nerve-wracking!!! I want to know.

If there is any venous problems, I will go for a venogram and procedure as soon as possible.

As an aside, she said their very first CCSVI patient is reporting improvements on their MS symptoms.

Donnchadh
Last edited by Donnchadh on Tue Mar 09, 2010 3:39 am, edited 1 time in total.
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Blood Flow Speed

Postby Chicagoboy23 » Mon Mar 08, 2010 4:30 pm

Hi,

I recall reading that the Doppler ultrasound can measure the femoral, jugular and azygous veins using high frequency waves. The standard venous blood flow was approx. .09. A reading of below .05 was considered poor and generally associated with a thrombosis, or cloting.
The vein structure can also be examined thru the test, to determine if a narrowing is revealed.
I believe there is a calculation involved in the measurement of the blood flow as well.
Good luck with the report information.

Mark
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Postby berriesarenice » Mon Mar 08, 2010 7:58 pm

Back from my angiogram. It was done in the arteries and showed that the left jug was about 1/4 the size of the right, but no specific stenosis. He was willing to treat a stenosis if he'd found one, but said it was just small all the way down. Back to the drawing board.
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Postby Donnchadh » Tue Mar 09, 2010 2:50 am

berriesarenice wrote:Back from my angiogram. It was done in the arteries and showed that the left jug was about 1/4 the size of the right, but no specific stenosis. He was willing to treat a stenosis if he'd found one, but said it was just small all the way down. Back to the drawing board.


I am wondering if you had the correct procedure done; CCSVI is about venous problems, not arteries. How could your veins been checked out if "it was done in the arteries"?

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Postby Cece » Tue Mar 09, 2010 8:26 am

Sometimes the MRV is being called an MRA...this was what False Creek called it but they meant it as an MRV.

How did Dr. Dake treat these sorts of skinny-all-the-way-down jugulars? Multiple stents?
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Postby berriesarenice » Tue Mar 09, 2010 4:06 pm

Donnchadh wrote:
berriesarenice wrote:Back from my angiogram. It was done in the arteries and showed that the left jug was about 1/4 the size of the right, but no specific stenosis. He was willing to treat a stenosis if he'd found one, but said it was just small all the way down. Back to the drawing board.


I am wondering if you had the correct procedure done; CCSVI is about venous problems, not arteries. How could your veins been checked out if "it was done in the arteries"?

Donnchadh


I had a long discussion with the doctor before the procedure. There was no confusion about the veins being the significant issue, he explained that because he wanted to get a look at the brain as well (transverse sinus), he had to send the dye from the artery side, through the brain and down the veins. I know venography is standard, but couldn't explain to the doc why going up arteries wouldn't achieve the same ends as going through the veins.
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Postby Donnchadh » Wed Mar 10, 2010 2:24 pm

I'm going to be liberated!!!!!

The ultrasound report came back showing numerous "minor" venous issues and one more serious. The nurse asked if I wanted to go ahead with a venogram or wait to see what happens in the future.

After dealing with MS for twenty years, I jumped, leaped, lunged at the chance for a cure. I also have a hunch that the actual venogram procedure will be more revealing as to any venous problems, and show the specifics more clearly.

My liberation date is Thursday 18 March. I can hardly wait, I am so excited.

Will keep everyone posted.

Donnchadh (the nurse has a hard time spelling my name, lol)
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Postby Cece » Wed Mar 10, 2010 4:06 pm

Donnchadh wrote:My liberation date is Thursday 18 March. I can hardly wait, I am so excited.


This is fantastic. That is just next week, you hardly have to wait!
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March 18

Postby Chicagoboy23 » Wed Mar 10, 2010 6:54 pm

Hello Donnchadh,

Great news!!!
This is the big chance for the 2nd chance that everybody wants...
and it is YOUR time.
Good luck to you, and wishing for the best.
We need to have a Vein Song written as a victory tune for each success story.
All you muscians out there lets get an anthem going.
Start planning what you will do with all that energy you'll be getting.
:wink:

Mark
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Postby Donnchadh » Thu Mar 11, 2010 1:25 am

It's not just about me, in that I am hoping that with each successful procedure done, the interventional radiologist will gain confidence in the connection between CCSVI and MS. I was the first to be examined using the color Doppler ultrasound using the CCSVI procedure. I found the ultrasound procedure protocol through this site.

As the IR told me at the initial consult, he wasn't a neurologist so this is new ground for him. As for doing the actual procedure, he didn't seem to have any doubts, having been doing IR since 1998.

If this site didn't exist, I would never have been at this stage. I remember first seeing the Canadian TV program on Dr. Zamboni on Christmas day, just a couple of months ago. At that time, I would have never guessed that I would be about to be liberated just a couple of months later!

Just a week to go now! I am planning on my post-liberation exercise program. I used to do Tai Chi every day until my PPMS caused loss of balance and screwed up my walking; I will consider the procedure a wild success if I can some day do Tai Chi again.

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Postby costumenastional » Thu Mar 11, 2010 1:46 am

Donnchadh, thank you for sharing friend.

Indeed, this site and everyone who posts is giving boost towards the ccsvi research. It is wonderful you realize how much of help it was for you as for all of us. Please, don't forget to keep us posted when you start your Tai Chi routine again.

It is essential for success stories to be published, resulting in more and more serious consideration of CCSVI through the medical community.

Good luck.
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