This Is MS Multiple Sclerosis Knowledge & Support Community

jil~
I cannot tell you how this warms my heart! I am so happy for you...
He is such a wonderful man...

Bestadmon!

Please excuse my ignorance, but perhaps it is due to not being well informed, but having said that, I was told that if one participated in the Buffalo study, you would not be informed of any results regarding stenosis or treatment. Can you clear this up for me or am I confused about your thread in someway? Thanks

Newfie-girl,

Buffalo doesn't give specific results. I did get the disk from the mri/mrv, but I was tested in September. I heard that they no longer give the disks.

Thank you, that explains the confusion, this present study in Buffalo is being very secretive to its participants, hopefully they will receive some type of info regarding their testing, I know they are all pioneers for the cause but its almost a shame to come out of the study no further ahead then when you went in. (Just a thought)

Kacey,

Could you please get a post into the sticky 'who are the big names in CCSVI' so that the whole board knows about Dr. Mehta? If he's willing we need to know his details ie phone no. etc

I called Dr. Mehta's office this morning to sign up for his trial. His office staff are fantastic, both professionsal and caring. Hopefully I am going to be tested and treated sometime this early spring.

mshusband,

My husband and I are from the Pittsburgh area. We tried to get the testing done at AGH through our neurologist with no success. Proper tests were not conducted. If you hear anything new (or if I do), please PM me and I will do the same.

I believe I read in CCSVI facebook a few weeks ago of a Dr. Winand in Lancaster Pa. who's done at least one procedure.

Wow, I can't believe what I am reading... I will definitely be calling Dr. M tomorrow! Thank you so much for posting this!

bossman wrote:I called Dr. Mehta's office this morning to sign up for his trial. His office staff are fantastic, both professionsal and caring. Hopefully I am going to be tested and treated sometime this early spring.

me too.. hopefully we'll hear something within the next month or two.. i'll gladly take my chances with angio. vs. stents, than continue taking expensive, ineffective meds. - from the zamboni research it showed 50% restenosis - i'll take that gamble... although i'd rather have stents... I CAN"T FREAKIN WAIT - i'm optimistically hopeful for some relief.

if i choose to "wait"... then found out later that perm. damage occurred during a flare of a spinal lesion and left me wheelchair bound.. man, i'd be severly depressed and pissed. especially because of the burden i'd be on my family. i sure as hell wouldn't let my caregiver (sig. other) make the decision for me. time is of the essence for me and everyone has to choose their own path and all that, but i'm not waiting !!!!!

rant time: why is it lately that some of those who do not even have ms are on tims debating ccsvi in a neg. way? they may be thoughtful caregivers, but how can they even begin to have an opinion without the condition? i don't get it and wish they'd get new hobbies... end:rant

@Kacey - Thank you sooo much for sharing this lead... I really appreciate it !!

You kids will NOT be disappointed with Dr. Mehta. I have heard from so many people about what a difference they see in my husband. He just emits such a new energy, it is almost tangible. I want to hear from everyone how they made out! This makes me so happy!!
This is truly the breakthrough we have been waiting for. Be well!! I know you will be!

mshusband wrote: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.

Well, I'll put it in "guy talk". Angioplasty is like having a girlfriend, if she and you don't work out, well you'll find another one (and of course so will she!), wash your hands of the whole affair and start all over again. In this case of course, if the Zamboni %'s are extrapolated to the rest of the MS world, you have a 50% shot at getting it right the first time, and no after effects.

Stents on the other hand, are for all intents and purposes a marriage proposal, it's for life, period. Oh sure there must be some way somehow of divorcing those stents, should that particular complication ever present itself, but it's going to be painful, messy, costly, and you plain old wont ever be the same, still functional, but at what cost? However, should you get a "good one" and are happy with it, just like a wife, well by golly you just never want it to end, and it will bring you many years of enduring happiness.

The rest, the choice, is yours alone....

Mark.

Love the analogy.

Kacey wrote:You kids will NOT be disappointed with Dr. Mehta. I have heard from so many people about what a difference they see in my husband. He just emits such a new energy, it is almost tangible. I want to hear from everyone how they made out! This makes me so happy!!
This is truly the breakthrough we have been waiting for. Be well!! I know you will be!

Is it possible to cry and smile at the same time - This is the prayer I've been asking for.. been on the Dake list, buffalo list, been to two vasc. docs - a third this Friday, got shot down by my neuro, corresponded with two contacts in Poland, called Georgetown... not sure I can do much more, as my head is ready to explode....

Anyway, I will definitely share my experience with you all... Glad you have your husband back, Kacey...

@bluesky> some cancer is cureable... ms isn't... i'll "still" take my chances...

bossman wrote:I called Dr. Mehta's office this morning to sign up for his trial. His office staff are fantastic, both professionsal and caring. Hopefully I am going to be tested and treated sometime this early spring.

From Dr. Mehta's staff today - Dr. Mehta has said that he will need the month of February to finalize a protocol and treatment plan, so we are planning on contacting people in March to begin getting evaluations done, etc.