Response from Neuro

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

Response from Neuro

Postby javaneen » Mon Jun 15, 2009 9:17 am

Ok so I decided to email my Neuro information about CCSVI and MS and attach links to the research papers. Of course I let him know that I have already showed several doctors here at Yale who find the research to be interesting.

His response to me was "It all sounds interesting. We will discuss it at your next visit."

At least he didn't shoot it down and seems interested. My next appt. is in July. I will keep you updated on what he says.

In the meantime I have given the article to a couple doc I work with and they have been looking into someone at Yale who can help me. Hopefully I will know more in a week or so. It would be nice to have someone in the Northeast involved in this.
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Postby Needled » Mon Jun 15, 2009 9:42 am

Congrats -- You have a REAL doctor who will listen to you!
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Postby mrhodes40 » Mon Jun 15, 2009 11:11 am

hey wow good news!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Re: Response from Neuro

Postby NHE » Mon Jun 15, 2009 12:44 pm

javaneen wrote:His response to me was "It all sounds interesting. We will discuss it at your next visit."

It sounds like he could be giving himself time to read the papers and evaluate the research for himself. If so, then that sounds like a better result than some of the other responses people have received from their neurologists.

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Postby notasperfectasyou » Mon Jun 15, 2009 1:04 pm

This is very terrific! Don't let this lay in his lap. If you sit and wait, you're letting him make the decision. You can still take action to help convince him of this thing that is contrary to what he reads in his Neurology journals. It's easier for him to read the stuff looking for holes so he can politely shoot you down. I'd puruse a course of showing him the danger of having these blockages even if they are not related to MS. But he can't argue that the papers don't show that MS'ers are very likely to have these things. So whether it's a cause or result, he ought to be interested in your volunteering to have this exam to see if you have them. In this way he doesn't have to accept it in contridiction to autoimmune theory in order to order the test. I think you want to help him get interested in sponsoring the test because MS'ers seem to have this condition. That's my 2 cents. It's part of the plan I will be trying out this week. I think he'd rather be the doctor to order than MRV that he can review than you giving your primary care doctor influence over the issue. Let him know you're getting this done and you'd really llike his input on the results. Ken
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Postby peekaboo » Mon Jun 15, 2009 1:33 pm

Ken -

I like your advice...

I'd puruse a course of showing him the danger of having these blockages even if they are not related to MS. But he can't argue that the papers don't show that MS'ers are very likely to have these things. So whether it's a cause or result, he ought to be interested in your volunteering to have this exam to see if you have them. In this way he doesn't have to accept it in contridiction to autoimmune theory in order to order the test. I think you want to help him get interested in sponsoring the test because MS'ers seem to have this condition.


you can use the first 4 Jeff, Marie, Sharon & holly(me) as a clear US current result of having venous issues shown on MRV...you have RRMS, SPMS& PPMS ers to date in recent us medical
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Postby bestadmom » Mon Jun 15, 2009 4:19 pm

Please keep us in the loop about your appointment in July. If your doctor finds someone at Yale who is willing to delve into this, I'd like to line up right behind you.

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Postby mrhodes40 » Mon Jun 15, 2009 6:07 pm

Forgive me I feel compelled to add to this thread so it is here that my dopplers at my local University were of limited value they showed some reflux and turbulence on the vertebral vein esp on the left but that was all--they felt it was very mild and not really significant...even though interesting and fun given the research and the fact I had MS.....they certainly did not see anything that they considered repairable at all.

then I went to Stanford and had MRV where we saw the nearly total blockage of both jugulars really significant blockages and obviously in need of repair.

Then Stanford wanted a complete data set so the did dopplers again, and that lady refused to believe there could be anything of value by doing them she claimed blood refluxes up to the brain all the time, that this model is stupid etc . She saw nothing and claimed it was totally normal---I told her I'd had dopplers at my Univeristy and had VV reflux and she said no that is normal nothing there at all, and when I said I'd already had MRV that morning at Stanford and the jugular blockages were there she said no I could not or she'd have seen turbulence and she did not see any, it was a utterly normal exam.

Dr Simka says it is possible to detect the presence of high jugular blockages if you know what to look for, one thing is a higher than expected flow in the vertebrals which my local university had stumbled onto. But you have to know what to look for and want to find it. Obviously if your agenda is to prove this is all nonsense you will find nothing even in the face of gross blockages in excess of 90% on the jugs.

What was worse to me was the arrogance and assurance in the face of obvious data that showed her evaluation was incorrect. MRV's should be better than dopplers most of the time, but Holly's MRV did not show azygos issues and they found that with the venogram on the operating table, so MRV is good but not perfect either even in a trained office that has done it several times now...

I mention it on this thread only so people reading it will be clear that you may not be able to actually get a truly certain answer if you get studies done by people who are not familiar with this material.

It is not like an x-ray, it is very operator dependent meaning that the operator makes the difference as to what is seen and how it is able to be read or interpreted. I know one thing Dr Zamboni wants to do as soon as he can is train people what it is they need to look for.

Ok sorry about that I just wanted it in this thread..... :oops:
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 javaneen » Mon Jun 15, 2009 6:27 pm

Thanks everyone for your well wishes and your advice. I could definitly use it. And thanks Marie for posting your caution regarding studies done at local hosptials. I think that it is good for everyone to read so they are aware that the studies done locally might not show a true picture of what is going on. I am hopeful that there is someone at Yale who perhaps has already been looking into this and interested in learning more. It is a big time learning hospital with docs who are always interested in doing cutting edge medicine. Maybe there is someone there who can help me. I am keeping my fingers crossed. And its good to know that the MRV is better. I will definitly make sure that its an MRV on the azygos and jugular veins and not just the head. The more people I can get to read the research the better. Maybe the tests won't be done or read correctly then I will go to stamford...but maybe they will.

I'll keep you all in the loop. Thanks again for all your support.
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Postby Sharon » Mon Jun 15, 2009 7:23 pm

Marie wrote
but Holly's MRV did not show azygos issues and they found that with the venogram on the operating table

Marie, I do not think Holly had the MRV of the asygous because of insurance issues. The blockage was found on the operating table with the venogram. Holly, is this correct?

Also,
I mention it on this thread only so people reading it will be clear that you may not be able to actually get a truly certain answer if you get studies done by people who are not familiar with this material.

This is so important for people to understand - maybe we should make it a "sticky" so it keeps at the top of the forum and does not get lost in these threads.
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Postby mrhodes40 » Tue Jun 16, 2009 7:13 am

Oh I did not realize they did not look at her azygos with the MRV, thanks for correcting that, I missed it somehow. I am glad because you'd like to think MRV was able to see these things.....

A sticky might be good we could have facts in the first post maybe then in the thread part paste chunks from other threads that show how we learned along the way the limitations of these technologies?
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 peekaboo » Tue Jun 16, 2009 8:07 am

It is correct...i did not have a MRV of the body. Cost containment. friggin insurance :evil:

maire posted on another thread pictures of what a "real MRV" looks like of the head and neck. I would copy, print, email to your doctors to help them LEARN what to look for. Knowlege is power! tee hee
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Postby Sharon » Tue Jun 16, 2009 11:27 am

Marie - I say go for it on the "sticky" - do you have time?
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Postby bestadmom » Fri Jun 19, 2009 11:02 am

I just spoke with the research department at Jocobs Buffalo Neurologial Institute in NY and they are doing a 1000 person study of MS patients for CCSVI. It is not interventional but there is no charge to participate and get the needed tests. They have 250 people enrolled so far and need to get back to me in a few days to talk about how it works, scheduling, etc. They are actively recruiting.

I think this is a reasonable alternative for those of us in the Northeast who might not be able to get our doctors on board with testing, or don't trust that they'll look for the right thing. I haven't looked into airfare but I'm guessing it's inexpensive.

I'll post updates as I get them.
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Postby Loobie » Fri Jun 19, 2009 11:06 am

Great news!!
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