Second opinion

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

Postby ozarkcanoer » Sat Jan 23, 2010 5:35 pm

Thank you for your post vahid. I hope that over time you notice some improvements. There is a tracking sticky on this board. Many people are sharing their experiences (anonymously). It would be great if you would post yours.

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Postby berriesarenice » Sat Jan 23, 2010 7:37 pm

Marie,
I live in the States, and this is my first post. I have been reading here since the Globe and Mail article in Nov, back when newbies were directed to the 57 (now 60-some?)page CCSVI sticky. What a fabulous education btw!

I had a very similar experience w/ an interventional neuroradiologist this week. While waiting for my Poland appt. in April, I managed a regular ol' MRV--for my headaches--and an appt. w/ an INR to discuss findings. He had never heard of CCSVI, but listened to my explanation, seemed to think it was plausible (ordinary in fact, like Marie said), and he read Zamboni's entire paper in front of me. He also asked me to send him more info, including the proper doppler and MRV protocols, and wrote down contact info for Dake and Simka. It could not have been more positive.
I just want to echo, this seems to be the way to go.
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Postby CureOrBust » Sat Jan 23, 2010 7:42 pm

mrhodes40 wrote:He shook my hand several times thanking me for bringing this to his attention. He and his partners he said are very interested in this new paradigm; they have had a meeting on it already. I had sent him a considerable amount of literature before our visit and he requested several specific papers if I had them. Naturally I was able to accommodate.
He was obviously glad to speak to someone who had been treated. It surprises me a itsy-little bit that, here we all are searching our butts off to find medical specialist who will consider & discuss this new paradigm, yet, I have yet to hear of medical specialists tracking down treated patients to discuss/evaluate them personally. I think your meeting clearly shows that they would be interested.

Thank-you for taking your time to bring this to someone else's attention. And, don't be a stranger. :wink:
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Postby mrhodes40 » Sat Jan 23, 2010 8:09 pm

Welcome Berries, THANKS for adding your experience. "ordinary" yes!

Hi Cure! Glad to see you!. Yes he was most interested in my results.

I found it really interesting also that he wants ALL the operative material--the venogram is a movie, and he plans to watch it all and read every word of the operative reports.

I forgot to tell you all the most important part....

This isn't just any neuroradiologist--he is one of the designated ''Top Doctors'' locally he takes clots out of stroke victims with great success. He goes in to the BRAIN..... all the time.

So my little neck stents are like nothing to this guy...

When I told him that I would like deep cerebral veins dopplers to see if I have any reflux since Dr D doesn't have access to a person who can do that he said that he can do them...they do these in his practice BUT:

"Dopplers like that are very operator dependent and I do not know exactly what Dr Z is looking at though I can see in a blinded study he is looking at something pathognomic, I can't promise you I can see it. I'll look into this if you send me that materials on how the dopplers are done and I'll let you know if it is worth a try."

How about THAT?! Like he already figured out that these may not work out?? I was VERY impressed by that, I mean my jaw was dropped and my confidence in him went through the roof at that considering all that we collectively have been through trying to get a doppler to show something.

Cah the movie and the stent is showing it well. Notice how it flexes even just in the lady's fingers. The slightest pressure and it gives.
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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Postby CureOrBust » Sun Jan 24, 2010 5:34 am

mrhodes40 wrote:Hi Cure! Glad to see you!.
I'm here every day, just trying to keep up with all the posts.

mrhodes40 wrote:This isn't just any neuroradiologist--he is one of the designated ''Top Doctors'' locally he takes clots out of stroke victims with great success. He goes in to the BRAIN..... all the time.
...When I told him that I would like deep cerebral veins dopplers to see if I have any reflux since Dr D doesn't have access to a person who can do that he said that he can do them...they do these in his practice BUT:
The Dr that had my Dopplers done (who also thought they were pretty simple) was also a stroke specialist. The more and more I think of it, its becoming clear the sonographers associated with a stroke clinic are in the best position to perform the dopplers. These tests were so run of the mill for my guys. I may discuss the possibility of a referral to a stroke specialist with my GP next. :? As you say, these guys would or know people who work on vessels near the CNS.

mrhodes40 wrote:"Dopplers like that are very operator dependent and I do not know exactly what Dr Z is looking at though I can see in a blinded study he is looking at something pathognomic, .... Like he already figured out that these may not work out?? I was VERY impressed by that, I mean my jaw was dropped and my confidence in him went through the roof at that considering all that we collectively have been through trying to get a doppler to show something.
I think I know why my Sonographer only found 1 instead of two issues. The neurologist who organised it, probably felt so comfortable with the scans that he didn't (or only skim) read the specifics as to the configuration of the ultrasound equiptment, in the instructional paper (which I provided him). I also remember, it appeared that the first the sonographer heard she was doing an ultrasound for MS was when I walked in the room. The Dr seemed to just quickly give her a one minute run-down of what he wanted; it's possible, she did not get to read of the special configuration Zamboni had.

The only "problem" with performing the ultrasound on you, is that you have been "fixed", and hopefully he wont find any failures on your ultrasound. But I certainly think its a damn good follow up to surgery. :)
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Postby mrhodes40 » Sun Jan 24, 2010 12:01 pm

The only "problem" with performing the ultrasound on you, is that you have been "fixed", and hopefully he wont find any failures on your ultrasound. But I certainly think its a damn good follow up to surgery.


I am doing it for science and for all of you. :D
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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Postby hoodyup » Sun Jan 24, 2010 1:17 pm

Way to go, Marie!

Good to hear you are feeling well enough to work. This is a big improvement. I'm glad you are receiving outside confirmation on the idea of stenting for venous occlusions with possible benefits for MS patients. The vascular people should be all set up for this kind of thing and they have the skills and equipment to deal with these procedures. They just have to be applied to a new set of patients. In light of the delays with the Stanford trials, I have also emailed a neuroradiologist at UC Davis, Dr. Richard E. Latchaw. Anybody hear of him or try to contact him regarding CCSVI?

Good to hear from you and that you are doing better. Thanks for all your work for science!
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Postby jay123 » Sun Jan 24, 2010 1:38 pm

That's great Marie!
Through the emails I sent out, I have an IR who is submitting a pre-authorization to my insurance tomorrow (unless he did it Friday!) for venography and then to go in and perform a fix. I'm really excited. I can't give his name to anybody right now, but will ask him after the procedure. I was lucky enough to get the MRV cd from the Buffalo study I did, he knows there is a problem already.

And as far as stroke clinics, I got a reply from the director of a world known center who told me they are planning on starting to evaluate (they didn't specifically say treat) patients late in February. I think trying stroke clinics is a great idea along with local IR's.
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Postby berriesarenice » Sun Jan 24, 2010 10:39 pm

Wow, my guy is a stroke specialist as well!
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Postby radeck » Sun Jan 31, 2010 9:27 am

Marie, thank you for getting your second opinion. The fact that your doc is an interventional radiologist may explain why he was more optimistic than the opinions I've received. Apparently this is a well known rift.

It will nevertheless be interesting to hear if he thinks it was worth it in your case, once he sees your images. According to radiology textbooks some narrowing of the upper jugular veins is physiological (normal). Collaterals in that area, and extra narrowing, could in principle be caused by problems further down, such as the ones Zamboni and Simka are diagnosing and treating.
Last edited by radeck on Mon Feb 01, 2010 3:58 pm, edited 3 times in total.
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Postby shye » Sun Jan 31, 2010 9:49 am

jay123
that's great news! Best of luck, and please keep us posted.
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great to hear other ms stories

Postby countrychick » Wed Feb 03, 2010 5:47 pm

Hi! I'm new to the forum and am finding all the comments quite interesting. I live in Canada and it seems that we are a little behind - we are just starting trials to see if CCSVI is really a worthwhile option...from all the articles I have read, it seems very positive. They are talking 2-3 years before any treatment might be offered, what if I could gain some of my life back in those 2-3 yrs?
Feeling a little frustrated..
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