This Is MS Multiple Sclerosis Knowledge & Support Community

Congratulations, Doctor Mehta, on being on the forefront of this new treatment. I think you have made a decision that will secure you a place in the history being made every day with Liberation. You will help to rescue and save many lives. This is momentous news.

kaboodah wrote:My symptoms began as a young teenager and I was diagnosed finally at 19. I don't know anything but life with MS.

I'm in the same boat, I had my first CCSVI symptoms at age 8. I am guessing normal feels good.

Thanks for the feedback on Dr. Mehta & wishing you all the best. Being scared is normal!! Just gives us all the opportunity to be brave!

Wow !
That is great news. Wish they did not wait this long to make this decision.

So, I know the ball is really rolling now around here. Has anyone had the procedure done yet by Dr. Mehta (besides Kaceys husband)? Can you tell us your views? Thanks!

Cece...have you gone through with it? I am not so anxious about it now. I have been talking ALOT about it with my husband and best friend. I believe I have figured out what my purpose is post-liberation and am very happy about it.

Kaboodah, I had an appointment with a different doctor but I've postponed it while I sort out which doctor to go with and how much intervention I feel comfortable with.

Did you ever think that something like this would be so hard to do? Not so much hard to have done, but hard to actually go through with it? Something we have all prayed so hard for...then now that we can its like "whoa...hang on a second"..lol

Does anyone know what Dr. Mehta will charge if you are Canadian?

Hi Everyone,

For Dr. Mehta, ONLY ONE WEEK IS NEEDED:

He offers out-of-towners the consultation with venogram/venoplasty on a Monday or Tuesday *and* venoplasty of second jugular and/or azygos on Friday of the SAME week.

People with MS are coming from as far away as Canada and Europe. For a while, I thought doctors' lists were becoming shorter, but I'm now wondering if word of CCSVI is reaching deeper into the MS-patient populations around the world.

Because I live locally, my appointments are fit into the schedule after the out-of-towners are scheduled, which is okay by me... after all, people with CCSVI/MS who travel have it hard enough, imho. So, I was fit in at the end of the day and had to wait a long time before my name was called, but being grateful for the opportunity to be treated, I tried waiting with grace and patience; however, it was my narcolepsy which helped with the waiting the most. ;)

Dr. Mehta runs a first-rate operation -- he and all his staff are wonderful and professional. I posted on the Tracking sticky thread: http://www.thisisms.com/ftopicp-128269.html#128269

He talked to me before, during and after the CT catheter venography and venoplasty, and he let me ask questions at anytime.

Something was given to me by I.V. to relax me, and I felt nothing during the procedure, nothing at all -- this was absolutely perfect, not too much of the med(s) and not too little... I can't say enough about how great they were with this because I take heavy pain control and spasticity meds at heavy dosages (methadone, Oxycontin, Lyrica, Keppra, baclofen) which makes such a job so much more difficult, and they nailed it.

The insertion point on my groin healed perfectly, no problems at all. He does not prescribe blood thinning or platelet-coating meds.

After the procedure was over while I was still on the table, he showed me the video on the monitor, and the pictures were amazing to watch. I actually got to see my IJV's inverted valve near the subclavian level (very cool), and being able to see the blood flow blocked and then free-flowing was a humbling experience. R-IJV was blocked 90%. L-IJV is blocked 80% until...

I go back in two weeks, 8/24/10, to have my other jugular's inverted valve ballooned via the same CT catheter venoplasty. I'll be able to receive a CD that contains all images/video.

Best of luck to all.

~HP

P.S. First posted to the "CCSVI treatments available in the U.S.!" thread.

Thanks for the update HP! Congratulations on Liberation, Part 1. Can't wait to hear the reports of improvements. Rest well.
Deb

dlb wrote:Thanks for the update HP! Congratulations on Liberation, Part 1. Can't wait to hear the reports of improvements. Rest well.
Deb

Hi Deb,

With positive thinking as my guide, I waited for 'improvements' before posting with my thanks for your kind thoughts; while there's nothing to report at L(P1) minus 3 days, my high hopes lie with the slowing/stopping of progression.

~Pam

Dear HP ,
While this is great news, I am confused. You have to go back for another ballooing? Why wasn't it done in one session ?
... and please let us know why "there is nothing to report" ?
I'm wishing you a lot of improvements.

HappyPoet wrote:

dlb wrote:Thanks for the update HP! Congratulations on Liberation, Part 1. Can't wait to hear the reports of improvements. Rest well.
Deb

Hi Deb,

With positive thinking as my guide, I waited for 'improvements' before posting with my thanks for your kind thoughts; while there's nothing to report at L(P1) minus 3 days, my high hopes lie with the slowing/stopping of progression.

~Pam

Pam,
Don't despair... I think that you can't expect improvements until P2 is complete. Just think... some only have blockage on 1 side and are still symptomatic, right? I have high hopes for you - lets wait until P2 on Aug 24th, okay. The really good news is that you experienced no pain so you won't have any repercussions from that and you don't have to be wary of the next treatment. Hope you are able to get some rest and put some stresses aside until later this month. Cyber hug from me... be well!
Deb

Okay... I just read your earlier post and you have/had 90% & 80% blockages, so even if they did the procedure on the 90%, you still have a big blockage there at 80%. I wanna say you are going to see some big improvements after P2 & we know you are in good hands. Ciao, baby!

Vivianne766 wrote:Dear HP ,
While this is great news, I am confused. You have to go back for another ballooing? Why wasn't it done in one session ?
... and please let us know why "there is nothing to report" ?
I'm wishing you a lot of improvements.

Vivianne,

Dr. Mehta only does unilateral venoplasty -- he only does one jugular at a time for safety reasons (plus, my pain management doctor insisted upon it). Since I live in Albany, I don't mind if there is more time between my appointments for the sake of those on tight schedules who travel to Albany from faraway places. I don't have the expenses or hassles of travel, either, so being fit into the office schedule at the convenience of the travelers' schedules is fine with me.

~Pam

dlb wrote:

HappyPoet wrote:

dlb wrote:Thanks for the update HP! Congratulations on Liberation, Part 1. Can't wait to hear the reports of improvements. Rest well.
Deb

Hi Deb,

With positive thinking as my guide, I waited for 'improvements' before posting with my thanks for your kind thoughts; while there's nothing to report at L(P1) minus 3 days, my high hopes lie with the slowing/stopping of progression.

~Pam

Pam,
Don't despair... I think that you can't expect improvements until P2 is complete. Just think... some only have blockage on 1 side and are still symptomatic, right? I have high hopes for you - lets wait until P2 on Aug 24th, okay. The really good news is that you experienced no pain so you won't have any repercussions from that and you don't have to be wary of the next treatment. Hope you are able to get some rest and put some stresses aside until later this month. Cyber hug from me... be well!
Deb

Okay... I just read your earlier post and you have/had 90% & 80% blockages, so even if they did the procedure on the 90%, you still have a big blockage there at 80%. I wanna say you are going to see some big improvements after P2 & we know you are in good hands. Ciao, baby!

Deb,

You have excellent points... no pain! NO PAIN! You're right! I don't need to worry about pain during or after anymore venoplasty procedures, which is fantastic! You're also right that I "still have a big blockage there at 80%." And YES, I am in good hands. Thank you for such wonderful positivity. Sayonara, sister!

~Pam

HappyPoet,

Thank you for updating us.

Hope you see lots of improvements.

All the best,
Drury











Drury