This Is MS Multiple Sclerosis Community: Knowledge & Support

Kacey,

I can't thank you enough for posting here about Dr. Mehta in Albany, NY. You're right, he is a wonderful, wonderful doctor! My family and I thank you from the bottom of our hearts for sharing information about him.

Everyone,

Dr. Mehta, a vascular surgeon, is starting a study in a couple of months and is taking names now (for balloon angioplasty only). I met him today at the best appointment with a doctor that I've ever, ever had, and believe me, I've had lots and lots of doctor appointments through the years. Dr. Mehta knows neurology, MS and CCSVI and is committed to helping as many MS patients as he can.

Kacey and her husband, Michael, were/are Dr. Mehta's inspiration for him learning about CCSVI, and he is truly an amazing doctor and humanitarian who enjoys thinking "outside of the box." Kacey did all the hard work for us in finding this gem of a doctor.

Dr. Mehta told me that Dr. Dake at Stanford is one of his "best friends" and that he's been in very close contact with Dr. Dake about testing and treatment just as Kacey told us in her thread: http://www.thisisms.com/ftopict-8903.html

I urge anyone interested in having CCSVI testing and treatment (if indicated) to call Dr. Mehta's office at: 518-262-5640, which is located at 43 New Scotland Ave., Albany, NY, 12208.

~HappyPoet

Poet~
Thanks so much for the kind words. But I believe this path has been laid out for us. The cards just fell into place..right place at the right time, you know? You are right, Poet, Dr Mehta is an absolute gem! He has given something back to me that I thought I'd lost long ago, and he is sleeping peacefully right now. And that has not happened for years....
People, if you can get to him and you are interested in this, GO!! Dr. Mehta is a Godsend, I truly believe it....
Poet, please keep us posted...you know how to get a hold of me!! I'm anxious to know how you make out.

Cheers!
Kacey

And remember when you call, if you get a 'no' for an answer keep asking questions. Some people have been told no, you have to be nice, but persistent!

Can I ask some of you who have had these CCSVI procedures done maybe ... like I've said in other threads, I'm going to take my wife and we're going to look into this. I might call this Dr. Mehta guy, but I saw above he's only doing balloons, no stents. The risk with baloons is obviously the veins re-collapse and you go back to having the same problems right?

Is it worth it to get the procedure done just using balloons or should I hold out for somewhere that might do stents?

I know most of you are going to say why not just go for it with the balloons because it's better than nothing, but if stents would keep it open, that to me sounds a bit like the better option.

You should contact him for testing for starters i d say. The most important part is to diagnose ccsvi. From there you can decide how you want to proceed. The fact that another doc is interested is on its own a gift from God.

mshusband,

I have not yet had any testing or procedure done, but balloon angioplasty offers a short-term solution while studies, such as the one trying to get underway at Stanford, determine the long-term patency of stents which are a more permanent fix.

Once stents are placed and endothelial cells grow over the stent (the healing process of stent placement), if anything were to go wrong in the future with the vein or the stent, fixing such problems will be difficult, perhaps requiring open surgery (as opposed to angio).

If I do have CCSVI, I am not willing to risk having stents placed so early in the CCSVI paradigm, and I don't mind the possibility of needing to go back for more balloon angioplasty procedures, if necessary, until such time that stent placement becomes more commonplace with studies to back up their use. It comes down to an individual's personal risk assessment in consultation with their doctor.

Also, I personally believe, that for me, going back for a repeat balloon angioplasty would be as simple as eating candy compared to some of the DMDs and chemo that I've used. And remember, performing balloon angioplasty for a vascular surgeon is a relatively simple task -- it's something they do all the time.

And, of course, there may be situations where balloon angioplasty fails to keep open a vein for any amount of time, and in such a situation, stents may be the only answer if one wants to fix a CCSVI diagnosis.

Also, don't forget that even with balloon angioplasty, those that choose this option now are still pioneers -- there are still known and unknown risks which one must keep in mind in their decision-making process. I am pursuing balloon angioplasty now because I feel that time is of the essence for me -- as cheerleader (Joan) puts it, I am "out of wait."

I hope I've helped a bit, and I apologize if I've confused you even more. If anything I've said is incorrect, hopefully someone will come along to fix my errors.

One last thing... Dr. Mehta is a WONDERFUL doctor, and I enthusiastically recommend him to anyone interested in testing and possible balloon angioplasty for CCSVI.

~HappyPoet

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Go for the balloons now! It's better to stop the reflux now and your wife can have a "touch up"later if need be. The last thing you want is permanent damage from waiting for the perfect solution.

It will be years before enough data is gathered, or a specific stent is devised for treating ccsvi.

Thanks all. You have been great to me since I started posting on here. Honestly, I really appreciate it.

I want to ask ... it seems so many people on here have had this done, and have gone to get checked (but everyone warns the doctors must follow the proper protocols to get a a real diagnosis).

HOW will I know if a doctor is going to do the right protocols going in?

I would rather find a doctor in Pennsylvania who would be willing to do this than travel somewhere. Like I said, I live in Pittsburgh with SEVERAL teaching hospitals, but maybe it would be best to go somewhere else? Everyone says the procedure is easy for an IR to do ... but the testing is what's hard?

I just want to use the best possible resources. Obviously the neuros are no help - since this is a cardiovascular thing - but I just want to get to the right people (and at the same time not drive thousands of miles if I could do it close to home).

Believe me Bestadmom - we want to do what you said, get it done, if you can stop progression and then continue to follow-up with these doctors that's the way to go for now. Maybe in the long run stents will be put in ... maybe they won't need to be, but stopping it now seems like the way to go.

On that note, there is so much activity on these boards it's hard to keep up. With this, CCSVI, what is the percent of people with MS found to have had stenosis? I mean yeah we'll go get tested, but is it likely that's the case, or is it like a 1 in 3 have it or what?

I'm sorry for being dumb ... but I like a lot of you think CCSVI really makes a lot of sense.

mshusband,

Until Buffalo puts out their stats from the study they are doing
(which should be in 2+ weeks) we just don't know %s. But based on Zamboni's small study, everyone w/ms had stenosis.

I was part of the Buffalo study as was 2 friends w/ms. We all have the stenosis. Of all of the people Dr. Dake saw, all but 1 had stenosis, but it was questionable if the one person w/out it has ms.

Albany is a long drive from Pittsburgh, but it beats a plane ride.

mb

So this Dr. Mehta does the proper protocols for testing though? And then the balloons if stenosis is found?

And Buffalo is doing the proper protocols for testing? IF so there should be a very high correlation I would think ...

mshusband,

All I can say about Dr. Mehta's experience with testing for venous stenosis is that he flew out to Stanford and talked with one of his "best friends," Dr. Dake, who I'm sure gave him valuable advice regarding testing.

No one in this country other than Dr. Dake has scanned many MS patients. So there are no guarantees, but Dr. Mehta will use only the very best resources available and will most definitely follow all testing protocols.

My advice is to get your wife on Dr. Mehta's list ASAP while you look for more local options. On a recent thread on page one, I read two people speaking to each other about both being near Pittsburgh, and I think one of them found a doctor willing to test for CCSVI -- hopefully you can find the thread (search function).

Best of luck to your wife. You're a terrific husband.

~HappyPoet

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mshusband,
Dr Mehta is new to CCSVI, but he is making it his mission to talk to as many people about this as possible. He is HUGE into research and as HappyPoet said before, he has been in communication with Dr. Dake. It would be worth it to sit with him for a consult, I think..
I am actually quite happy that we went for the balloon procedure for thjs reason. If the jugular vein occludes after angioplasty, then at some point the procedure can be performed again. The procedure was relatively minor, not too much pain, just some minor discomfort which resolved in a few days.
With a stent, there is still a risk of the vein occluding, and if this should happen, that vein is kaput. I like that Dr Mehta didn't go in like a bull in a china shop, hoping to save the day! Believe me, I know a few docs that would have done that. I feel comfortable knowing that Dr Mehta is "driving the car". I have complete and utter confidence in him...no harm in a sit down with him.
Poet is right, you are a terrific husband!
Be well, everyone!!
Kacey

Bestadmom:

Sorry if anyone feels like I'm hijacking this thread, but doesn't the fact that you say you are/were part of the Buffalo study and you have stenosis and you have MS imply that in some way, we already have some results from the buffalo study? What else do we know already? Is there anything else you are able to share?



Again, I apologize if I'm making too much of what you said. It just didn't occur to me that of course we already know people that are in the study, and now I feel kindof stupid.

I really hope you don't misinterpret me. My intention is to just get information, not to bother you like the paparazzi.


Cathy

cathyb, check your pm's. I didn't want to hijack this thread.

I spoke with Dr. Mehta by phone last week. He called me. A doctor actually dialed the phone to call an interested patient. What does that tell you about this man?

We had an open and frank conversation about all of this and he told me "I was a former skeptic, and my mind has been changed". I can't put into words on a computer screen what a gentle and kind man he is to speak with.

At the end of our conversation I said something along the lines of "on behalf of all of us suffering with MS, thank you for listening". And then he said something along the lines of "someone told him long ago that listening to a patient was one of the most important things you can do".

So Kacey - thank you for finding him and sharing about CCSVI. He is obviously a rare find amongst physicians these days.