This Is MS Multiple Sclerosis Knowledge & Support Community

To comment on Dr. Mehta doing only one vein at a time, I spoke with a vascular surgeon recently through a mutual friend and he told me emphatically that he would only treat one vein at a time (if he were to treat CCSVI, which he's not) on the off chance that there is a clotting problem in both veins after the fact. He was pretty firm on that point. Which, of course, has sent me into a partial panic based on plans I have laid.

But, just saying, Dr. Mehta is not alone in that thinking. I don't think he is doing it that way to be greedy. It is a shame he is being pertrayed that way on some websites.

cece,
thanks for your input. i went back and reread this thread from the the beginning.
i hadn't absorbed the point that the procedure was performed even though the ultrasound was negative.
then why bother with it?
cece, thanks also for your compassion. don't feel sick like flu or such. just experiencing my ability to stand and walk (which you cannot do without standing ) diminishing by what seems like the week. don't want to whine. so many here have things worse than I do.

I live in Indiana and traveled to see Dr. Mehta a couple of months ago because I feared I had re-stenosed. (I had ballooning done in Bulgaria in July)
My husband and I both were impressed with him. He seemed very cautious. I was disappointed though because he will not take me on as a patient because I don't have a definitive ms diagnosis.
He has his reasons and I respect that. I do wish I would have known that before we made the 12 hour drive. (but this may help someone that may be in the same position)
They did do an ultrasound that suggests I have re-stenosed.
He seems very caring.

elyse_peace wrote:cece,
thanks for your input. i went back and reread this thread from the the beginning.
i hadn't absorbed the point that the procedure was performed even though the ultrasound was negative.
then why bother with it?
cece, thanks also for your compassion. don't feel sick like flu or such. just experiencing my ability to stand and walk (which you cannot do without standing ) diminishing by what seems like the week. don't want to whine. so many here have things worse than I do.

It's good to have an initial ultrasound done before the procedure so that ultrasounds after the procedure can be compared to it and during the follow-ups throughout the year after. Also he might want to form a treatment plan based on the initial imaging so the procedure itself goes more quickly, limiting the amount of radiation and dye the patient is subjected to.

elyse, it is never whining, we are just up against so much. Hope it improves for you.

I also, as I was laying on the table getting "ultrasounded", was wondering why...if the ultrasound is just about pointless because even if it is negative, it could still be very positive...it hit me. Luckily, mine showed stenosis. At that point, whether CCSVI was a real thing or not...experimental or not..the fact was that I showed blockage and therefore insurance pretty much had to cover it. There wasn't any questions of "might." THey still made me get a second opinion, but that was a breeze. I am going to the round table thingy tonight and then going back for my scheduled venogram on Friday. I live 3 hours away, but I feel the worthyness of it all. Maybe after I get treated the fog in my head will lift and I won't have to use words like "thingy."

CeCe, I don't know if anyone is recording it to post. I kind of find it hard to believe that no one is. Maybe I should take my camcorder and tripod, just in case. Will you be attending?

I've kept in touch with one of Dr. Mehta's patients through facebook that had the procedure done on one of his JV's. He saw me as I was walking out from my ultrasound and consultation last Tuesday. In talking to him on facebook he mentioned that the ballooning hurt like hell and he felt like "death" after the procedure, couldn't stand up. He did mention that Dr. Mehta showed him the x-rays from the venogram and he thought that was very interesting (informative) to see.

Fast forward to this morning....he said he had a rough week, but that yesterday he was able to walk a thousand feet, wasn't sure if that was because of the procedure. I wish I knew more about his condition before the procedure, I'll have to ask him. Evidently he's feeling better. He's scheduled to have his other JV done in a couple weeks. Doesn't sound like the way the first procedure went was enough to deter him from doing it again.

I'm hoping this isn't the normal "adverse" reaction to the procedure, as I may be doing the same thing in a couple weeks.

I'm sorry to hear that his experience was rough. I don't believe it to be the norm though. With so many procedures being done, they cant all go as smooth as silk. I'm very happy to hear things are getting better!

Our family just returned from Albany where my brother had a venogram and angio done by Dr. Mehta and his wonderful team. We found out before our appt. that if both IJ's were blocked then we would have to do a return trip. We live outside Toronto and the 7hr trip was a long one but we would have done it again in 2 weeks if we had to. Fortunately it turned out that the LIJ was 90% and the azygos was 80% blocked so both were done. We are good now until a 3mos appt. in February. I would much rather that a Dr. err on the side of caution than do all 3 blockages and have something happen.
My brother says that this is the first time in 25yrs he is not dizzy or have brain-fog.

Great story Savannah ... love it, tell your brother to drink lots (and I mean lots) of fluids, and to rest up!

(What is Dr. Mehta using for blood thinners/anti-platelets if you don't mind me asking).

i am at the symposium now. I believe Dr. Mehta uses 325 mg. Aspirin after the procedure. I am unsure of who is recording it, but I know someone is. We are not allowed to bring in our own camera. there is a camcorder setup in the center of the room.

Savannah, thanks for sharing that and congrats to your brother on feeling well!

Kaboodah, glad to hear its being recorded. Enjoy! I'd be there, but I live in MN, it's a bit of a hike.

CCSVIhusband wrote:Great story Savannah ... love it, tell your brother to drink lots (and I mean lots) of fluids, and to rest up!

(What is Dr. Mehta using for blood thinners/anti-platelets if you don't mind me asking).

I will certainly pass the message along. My brother is on ASA 81mg till we see Dr. Mehta again in February

Kaboodah,
I was also at the Egg in Albany last night. Very interesting, but very technical at times. I got a chance to speak with Micheal, Dr. Mehta's first CCSVI procedure (Jan. 2010) paitient, he seemed to be doing very well, but did mention that he has some restenosis in his RJ. My overall interpretation from this presentation is that CCSVI as it pertains to MS is still in it's early stages and that large trials are needed to be able to draw a conclusion one way or the other to the effectiveness of the procedures being currently done.

My husband and I really enjoyed the symposium, but it was a lot of information. I have a lot of trouble with comprehension and retention so if anyone hears of a recording of it, I am very interested. Tomorrow morning is my Part one! Please pray! Blessings!!

kaboodah wrote:My husband and I really enjoyed the symposium, but it was a lot of information. I have a lot of trouble with comprehension and retention so if anyone hears of a recording of it, I am very interested. Tomorrow morning is my Part one! Please pray! Blessings!!

Sending you prayers, kaboodah....