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My cold-calling email to them.

Question: Are any of the radiologists in your group familiar with research regarding CCVSI in patients with MS? There is Dr. by the name of Michael Dake who is the Cheif of Interventional Radiologyat Stanford who has been evaluating patients with MS using MRV. So far I know of 2 patients with MS that have been diagnosed , by Dr.Dake, with bilateral jugular stenosis. During this month, both underwent surgery to treat this condition.

I am currently in the process of trying to meet with my Neurologist to discuss what my course of action might be in light of these new findings.

I am also looking for an interventional radiologist who might be willing and able to help me investigate this treatment further.

I am including a copy of the study done by Dr. Zamboni which outlines his research in this area.

AND THE RESPONSE.

Heather,

After discussing your e-mail with one of ARA's Neurointerventional surgeons, this is the response I received. If I can further assist you, please do not hesitate to contact me.

"It is my impression in reading this literature that although their may be a strong association, not previously reported, between MS and large venous stenosis, it is not proven to be causally related or necessarily a target for surgical or endovascular rather than medical therapy.

Before we ask for any imaging studies, I think it best to have a conversation between the patient and her neurologist taking care of her MS, and if necessary one of us."

Um....was that a no?

Any suggestions for my reply?

P.S. I hate rereading my emails after I send them. I only get to work on this stuff at night when my MS brain is running on empty. The errors are embarrassing

Interesting that they mentioned 3 therapies: surgical, endovascular, and medical. What the heck does that mean?

I guess that might be one of my first questions.

Any thoughts?

Am I understanding that right?

Hasn't everyone been treating their MS for ages, despite there being no real proven treatment or no real understanding of the cause? I think doctors are way to careful not to step on each other's feet. The question remains, if you were a "healthy" person with the same problem would they treat it then? If you had high blood pressure, would you have to see your neurologist first? Are you a free person, or does your neurologist own you?

I personally would not see that as a no. I think they are just providing professional courtesy to your neurologist, who is your current treating physician.

Their most "negative" statement was "it is not proven to be causally related or necessarily a target for surgical or endovascular rather than medical therapy". As far as I know, Dr Zamboni has not released his preliminary results from his currently running trial, so I would say it was a fair statement to make at this stage.

akaheather wrote:Um....was that a no?

It sounded more like a 'maybe' to me rather than a flat out 'no'. It seems that they would want another doctor to refer you as a patient to them in order to get the imaging studies done rather than have you be self-referred.

NHE

I was first rejected for and MRV scan (which I posted in another thread, I think the skeptics one) - I wrote back asking for a less complex scan (since they'd indicated they werent sure if they could do it):

Hi, me again - apologies for all the emails ... but of course it's an issue near and not-so-dear to my heart lol

Anyway - I did some digging and have come to understand that "getting proper results from MRV is more of an art than a science" so I better understand the interventional radiologist's hesitancy.

Would it be more doable to get a 'venous CT scan,' from the head to the diaphragm?

Apparently this is a much more simple/mechanical procedure, and I could simply forward the results on to Dr Dake for review of the two internal jugulars and the azygos veins. (where the blockage is showing in every MS patient tested so far (over 120 now)).

thanks again for your time and patience

They wrote this back:

I reviewed all of the information you shared with our experts. At this time, they are not comfortable recommending or pursuing the imaging path you outlined.

Of course, if you obtain a written referral from an M.D. we would be willing and able to perform the imaging studies at our Maple Grove, Plymouth or Robbinsdale center.

We wish you all the best.

So it seems that getting a doc on board to get me referred will be the better route than cold-emailing the vascular folks directly ... but of course my neuro won't do it, and I actually do not have a general doctor - never had a doc, until I started up with the optic neuritis and wound up with a neurologist ...

I agree with NHE. Go for referral. But hey in a month we'll have the Zamboni release including the website on which his materials will be posted for EVERYONE to see print and discuss. That will help us all a lot.

Medicine considers itself to be a science and only doing what is proven. We have not crossed that line yet with this model, though I thik we ar going there.

why said

Hasn't everyone been treating their MS for ages, despite there being no real proven treatment or no real understanding of the cause

That to me is the most important thing to remember. autoimmunity is a theory...if Zamboni is right it is either wrong or only a minor co factor secondary to this anomaly.

When an individual patient being treated with the autoimmune theory is not getting results, when will the medical community find it OK to try this new idea? it seems to me like it should be an OK thing to at least evaluate and see what is there.

Surgical intervention is open surgery where they go through the skin

endovascular is where the surgery is performed with tiny instruments through the blood vessels

medical intervention is pills and diet stuff, ie in this case lipitor, low fat diet etc. assuming tht somehow this were the same as heart issues, which I am not sure they are (mine usure isn't my cholesterols is great and my issue is not medically managable--no way there is going to be ore room for the jugs from a pill )

You guys are awesome! Thank you so much for your replies. I had to read and reread that email to decipher the CYOA talk, but I think y'all are right. It sounds like they may do it if I can get a referral. I hope that doesn't become the hard part. I still have no response from my neuro.