spreading the ccsvi word

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

Postby CureOrBust » Tue May 26, 2009 7:37 am

mrhodes40 wrote:Is it expensive to get the MRV too?
In Australia, we have a system called Medicare which can cover quite a bit of the costs. This neurologist has performed his previous services all under this provision, so I have not had to pay a cent (my primary neurologist who I see at his private practice is not the same). This one works out of a govt run teaching hospital.

In investigating the possibility of getting an MRV on my own, I was told to expect an MRV to cost between $600-$1000 AUD (I pay considerably more than that to Medicare in Taxes :( ). I am not sure how much a CT would cost, but for me, it is the least of my issues. My health is one thing I am prepared to pay for without question.

mrhodes40 wrote:On my MRV which has the picture from dead on front, my jugs were flattened so that in the front the looked the normal thickness, but Dr Dake knew to have them digitally "turn" my picture 20 degrees and BANG! there it was the thinned area.

We could see on the neck MRI too that the jugs were mere slits flattened to the back at the angle of the jaw rather than fulll round veins. SO they did slices of my neck in the regular MRI same time as MRV and that let us know that the jugs needed that rotation to see the anomaly...
I once had a CT scan on my lungs , and from memory, they take slices, thus providing a 3D image. I have spoke with Dr Dake, and he generously offered to review my scans. I am doing the CT scan over the MRV's following his recommendation.

mrhodes40 wrote:you don't think for academic purposes it might be good to just have it for comparison?
It would be great for academic purposes, if something is found in my CT. However, I am a big baby regarding the enhancement medium, and would expect to get an MRV if something is found, by the Dr that would be planning on performing any "work".

At this stage I am being "cautious" in that it is still "unproven", and maybe if it is real, I don't have MS :? You remember what your thoughts were as you were driving down to cali don't you...
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Postby mrhodes40 » Tue May 26, 2009 3:37 pm

You remember what your thoughts were as you were driving down to cali don't you...


In deed I was saying the whole way down maybe this is a pipe dream and when I get there Dr D would say that maybe I have a little stenosis but too small to matter......maybe it would be tooo small to consider "operable" or too small to possibly be other than a small side issue at best.

I was stunned when I had the gross blockage, but the diagnostics if not done well, would have missed it. I am glad Dr Dake is ging to review for you that is comofrt right there what a great guy he is.

Yes I understand completely.
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 CureOrBust » Wed May 27, 2009 12:51 am

CureOrBust wrote:I have spoke with Dr Dake, and he generously offered to review my scans. I am doing the CT scan over the MRV's following his recommendation.
ahhh.. I have today reviewed the CT scans in Zamboni's paper, and notice that in each there is a catheter. I think I may take the risk of having to redo the MRV, over having the invasive use of a catheter during a CT. Hopefully my dr will still allow me to switch back to an MRV.

I would expect to walk out with a CD with all the scan data on it, and hopefully that will be enough for someone to go "no, they missed performing scan Y".
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Postby daniel » Wed Sep 30, 2009 12:21 pm

I'm excited!!! I heard Dr.Dake was coming to Toronto, so I emailed the head of my MS Clinic to let him know and gave him Angela's phone number in case they wanted to meet up.. only to find out that they're going to meet next Tuesday!!! Can't wait to see what comes of this! Exciting times =)
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Postby ErikaSlovakia » Wed Sep 30, 2009 12:34 pm

A Slovak MS magazine has just asked me to write short story about CCSVI. How I started...
They have also asked the Slovak radiologist who is in contact with me and has the first blog on Slovak internet about CCSVI to write an article for them.
This is great.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Youri19 » Thu Oct 08, 2009 1:21 am

Hello everybody

Three weeks ago i went to mine neurologist to talk about CCSVI. Hey was very surprised about it and interested in it. Today I went back to talk about it again and to see if he was still interested about it. I had given him 3 weeks to look into it :-)

He is still interested in the CCSVI story and at end of this month he is going to talk about it at a gathering of MS neurologists of the southern part of the Netherlands. After that he promised to call me to talk about it further and to tell the reactions of his college’s

I’m keeping you people up to date about the progress here in the Netherlands :-)

Greetings Youri.
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Postby mrhodes40 » Thu Oct 08, 2009 2:01 am

Wow how exciting Youri! great news about the interest in this.
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 Sharon » Thu Oct 08, 2009 7:29 am

Good news from the Netherlands! Thanks Youri
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Postby Sharon » Thu Oct 22, 2009 8:55 am

Well, I am sorry to report that the Anchutz Cntr (neurology dept) at the Univ of Colorado headed by Dr. Vollmer will not be reviewing or following the research of Dr. Zamboni or the study at the Univ. of Buffalo.

No need for me to go into the details of my encounter with Dr. Vollmer at a public "MS informational" meeting on Tuesday night. Suffice it to say, I was mad and upset to think that our state university which is funded by the public is not interested in the CCSVI research. In June, I emailed and I faxed the research by Zamboni to the MS Center. I followed up with a phone call only to be told by a staff person they were too busy with other drug trials. Tuesday night I had an opportunity to ask in a public forum and to also speak in private with Dr. Vollmer. Currently, the MS center is participating in about 15 drug trials with pharma ---that means $$$ of funding for the the department. Unfortunately, the University of Colorado does not receive the state funding that many other universities get. I think it averages about 51st place among U.S. universities. So, the departments have to find funding from other sources. Hence, IMHO, all the drug trials going on at the MS center.

Vollmer was unable to answer my question in the public forum - he tapped dance all around it -- actually, started talking about something completely unrelated which confused the audience. I approached him privately after the meeting. He questioned the Buffalo study ---his good friend Bianca Guttman had not discussed it with him. When I told him it was a 1600 person study and D. Guttman was a major player in the study -- the tap dance started again. I told him that I was glad to have brought the whole study of CCSVI and how important it was, to his attention again -- and hoped that the university would reconsider with a follow-up.

The good news is, I walked outside and there were about five people from the audience waiting for me. Immediately they are asking what is CCSVI? It was beginning to snow so I really did not want to spend much time explaining --- thanks to Cheer, I was able to tell them to "google" Facebook and CCSVI.

I do not give up easily - I will continue to "bug" the MS center. I just find it so unfortunate that the Rocky Mtn MS Center, which has a great patient outreach program, and is probably the best, known resource for newly diagnosed MS'rs in Colorado, will not be directing any time or effort to CCSVI.

Sharon
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Postby cheerleader » Thu Oct 22, 2009 9:31 am

Good work, Sharon - glad some folks heard you speak out about CCSVI.

Now that you've approached Dr. Vollmer in public and posted here...he cannot claim he hasn't heard about CCSVI. The least he can do is read the research and call his good friends at SUNY Buffalo to discuss. He owes that to the thousands of MS patients in Colorado (the land of high altitude/low-level hypoxia/endothelial disruption and high MS rates)

We're not asking that much....just read the research, talk to the neurological community. Even the MS societies of Italy, Canada and US have stated there needs to be more research. Cat's out of the bag.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby CRHInv » Thu Oct 22, 2009 9:37 am

Sharon, I guess I am surprised by Dr. Vollmer response. He came from Phoenix and my open minded neuro used to work with him. Maybe it is the funding issue. I agree with Cheer, way to go getting this out there. I bet you he is already looking into this. I know that even when I am really busy, if someone, lets say, 'stumps' me with something, it isn't going to happen twice. Good work!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Jamie » Thu Oct 22, 2009 9:52 am

There's a slovak internet???

Just kidding.

But it has always bothered me that being Anglo that I see only a small portion of the internet.

I hope automatic, AI based, genuine, translation comes out in a few years - imagine how much we're missing by not being able to read Arabic, Chinese, Russian, Korean etc.

Sharon it's amazing what you are doing - thank you for your efforts.
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Postby bestadmom » Thu Oct 22, 2009 10:11 am

I am not surprised at all by Vollmer's response. He was my neuro at Yale and his research is all pharma-based and funded. I never felt he was a people-person, and seeing patients was part of the deal at Yale. I was told he left so he could focus on research and not patients. I was surprised to see his face on the Rocky Mtn email newsletters. To me, his association with them is incongruous.
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Postby mrhodes40 » Thu Oct 22, 2009 10:25 am

I am sorry to report that the Anchutz Cntr (neurology dept) at the Univ of Colorado headed by Dr. Vollmer will not be reviewing or following the research of Dr. Zamboni or the study at the Univ. of Buffalo.


Heartbreaking.

Really, if you are going to be an expert you'd better keep up with new developments and findings in your field even if they are fantastically different from your own previously held beliefs......

Expert implies breadth of knowledge, including new findings
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 Sharon » Thu Oct 22, 2009 10:50 am

bestadmom wrote:
He was my neuro at Yale and his research is all pharma-based and funded.


Yes, I think you are correct - the hospital is not doing any of their own research. They are given a drug by a pharma company to run a trial - the drug company sets the protocol for the trial. Vollmer gets his volunteers lined up - gives them a drug --sees the patient according to the protocol, and follows with a written report. Not much creative research going on.

Hey, folks, all is not lost. There are now about 25 MS'rs who probably had not heard of CCSVI before Tuesday - now they have. I am also working on other contacts -- more to come.......I promise.

Sharon
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