I would suggest skipping your neuro and finding a vascular doctor to read this. When I brought up the vascular connection, our neuro looked at me as if I suddenly began speaking in tongues....and changed the subject. HOWEVER, the head of one of the largest university vascular depts. in the country called me personally on the phone to discuss after I sent him the papers listed above. He was quite excited, and we see him at the end of April. I've never had a doc call me before, let alone the head of a dept. The vascular docs get it.
Ditto!! I will repeat what I did;
-I went to my local big University with a medical school's website (U of Washington) and looked for vascular doctors who were professors there.
-I entered the doctor's name in "google scholar" which searches only scientific data bases, or could also use pubmed. This gives you a list of what that guy has published. Look for someone who has done doppler studies, studies in venous ulcers, that kind of thing.
-look at any other vascular docs from the school the same way and pick the best one.
1. Cheer's guy is cardiac vascular guy, that's a pretty good choice because the issues are mainly in the neck and chest not the brain
2. Cureorbust got a neurovascular guy, someone who deals with strokes and things like that, and that office was familar with brain dopplers
3. my guy is a regular vascular surgeon, mostly does legs so we could not do the cerebral veins in his doppler lab BUT he was very interested in the whole idea. We easily found reflux in the vertebral vein.
-Contact the person you choose through his office and ASK PERMISSION to send papers.
I tried through email but ended up talking to his receptionst and explaining what I was doing and what I needed, specifically that there was some new research out of Italy that suggested MS patients might have problems with the venous drainage and that I wanted to see if Doc would check me for it, if he thought it was reasonable, after reading the material. She said if I sent a detailed request to her, she would see that he had a chance to read it. I had her on my side, that helps.
I sent a nice letter requesting his expertise and help in evaluating this idea, explained what exactly the research was showing, and told him that if he was interested in pursuing this I could either email the actual papers or send hard copies for his evaluation.
Importantly I mentioned the numbers of patients the Zamboni team has seen in blinded controlled studies, the fatastic 100% concordance, generally outlined why they think this has a role in MS causation, and importantly listed the 5 doppler tests that are done so he could know if it was stuff he could do.
He called in one week excited by the idea and wanted email copies. He had spoken with his partner and the sonographer and they decided they could do Zamboni's tests and that if we got reflux, he'd go deep and really learn all about it then. We got reflux, and now I await his plan of action--he is emailing Dr Z too, so hopefully we do venography soon cause I am guessing that's what Dr Z'll say to do.
It is my belief that if this is going to go, it will be vascular doctors who do it. They are the one with the expertise in this area, the ones who can do dopplers, the ones who can understand the idea (they deal with venous ulcer all the time, this is essentially the same but in the head; it's kind of familiar) and the ones who will do the venograms and the repairs if needed. If this is the problem in MS we won't see neuro's mainly, we'll see vascular docs.
The vascular doctors have nothing to lose and everything to gain, as a field of medicine, if this is "it" for MS.
And let's be honest; neuro's have everything to lose and nothing to gain from this paradigm.
From the neuro point of view you need none of those vascular studies or procedures. What you need is to understand that MS is autoimmune, even though that's never been proven, and that you have options including CRABS, novantrone, tysabri rituxan all of which you can get in THEIR offices. From them. They believe this is what is best for you. Period.
As a patient I just want the truth and I want this idea evaluated and assessed NOW... because the difference between treatment in this paradigm and the autoimmune one has no overlap.
This is unproven and at this point what your doctor will do with the findings, whatever they are, is in question and it might be worth having that talk up front.
Will he be OK with doing venograms? Cheer's doc is doing dopplers with venograms planned if he sees anything THAT DAY!
What will he do if they can't see more than one abnormal finding? Cure's doctor gave up even though he had IJV stenosis because by their lights they only saw the one problem.
The Zamboni paper '09 clearly states that ANY abnormals are highly significant. I am going to do a thread on that when we get a forum, but some people might read it that only if you have 2 is it important. How the doc interpets that is important
And finally what will you do with the information if you have abnormal dopplers and then a venogram that shows a stenosis? Will the doctor offer endovascular repairs? will you agree to it? Will insurance pay for it, such a thing is experimental we have no evidence at all yet that such a thing would help people with MS. It may not for all I know. (ALTHOUGH, don't forget, Dr Zamboni is presenting his findings of doing endovascular repairs on a group of MS patients April 4-7 at the cxsymposium, so we'll have some idea of that then, fingers crossed----)
I think it kind of depends on your situation financially and healthwise what you decide to do with this interesting but unproven theory that MS might be helped by alleviating strictures in the veins. If you can wait a year or two there will be a lot more to go on, AND a lot more to make insurance pay with assuming it is successful.
It is possible my guy or cheer's guy may do a study or a case study getting the all impotant literature going. That is one reason I used a University doctor....they live to find something new to publish. This is going to be a hum dinger if it is the truth about MS so it is very interesting for a true researcher to get on board!
But if you are like me I have no play room at all, none. I am progressive and even a year is too long for me, I've begun having trouble in my GOOD leg
.!! Oh no!! In such a situation, I can't wait for Dr Z to finish what he is doing, nor to wait 6 months for someone else to set up a study then another year to get it done then another couple months to get published.
My darling husband decided he wanted us to go for this NOW, even if insurance does not pay. We plan to push for everything we can get to help. If my guy bails on me, I'm down for Cheer's guy, plane ride and all.
I do NOT personally have answers to the questions I posted above from my doctor, I don't know if my guy is going to offer venograms, don't know if he'd do repairs, have no idea if there is logic for insurance paying for those things once you see that here is a stenosis there. It is after the fact these occured to me.
(I mean really, if you had a venogram and saw a lesion in the jugulars, could your insurance deny payment for repair?
I hope not!)
Bleh! I have post-orrhea. Sorry! hope it helps. I talk like that too
