Dr. Mehta in Albany, NY - Thank you, Kacey!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby LauraV » Sun Aug 29, 2010 7:45 am

HappyPoet wrote:Cece, as time goes on and we find out more about the liberation procedure, that list of considerations you were once working on becomes longer. Do you remember the other ones? Here are some more considerations to add to the list:

1. Vascular surgeon/IR.
2. Services not rushed/Services rushed.
3. Dr. not switched/Dr. switched (reminiscent of the old "bait & switch," perhaps).



Happy Poet, one of the considerations you mentioned was Vascular surgeon vs. Interventional Radiologist. Do you think that one is better than the other? Do think that they have different approaches to CCSVI and the liberation treatment? You chose a vascular surgeon to do your treatment. Any particular reason?

Thanks for all your posts!
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Postby HappyPoet » Sun Aug 29, 2010 8:00 am

Hi Aliyah,

Yes, we're all "with" you. We understand your fear and excitement. We're here for you now, and we'll be here for you afterward.

Don't fear endovascular procedures -- they're done hundreds, if not thousands, of times every day all across the country... and who knows how many times each day similar procedures are done across the world!

But when a procedure is being done on "you," numbers and statistics don't always help answer questions to put fears to rest, I know, which is why it's so wonderful having separate days for procedures -- by seeing Dr. Mehta twice, you'll be able to ask the new questions you will have!

Let yourself feel the peace you seek, Aliyah... let peace flow over you starting right now, and let your new-found peace stay with you right through the days after your treatment when your thoughts change from having treatment to having symptom improvements.

Feel the peace of having made a proactive decision that will let you say to yourself and to the world, "I did it. I did it when I needed to do it. I did it so I will feel better. I did it for me." Feel the peace, Aliyah, feel the peace.

Looking forward to reading your updates on the sticky Tracking thread and on this thread, too.

Warmly,
~Pam
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Postby aliyalex » Sun Aug 29, 2010 9:33 am

thanks pam. well said.

this is part 2 of a 2 part discovery journey for me. the 1st was embryonic stem cells where i went through a similar exciting/fearful reaction.

it went very well so far. fear seems to be a passenger that i have learned to welcome. fortunately excitement has joined in the last year.

thanks for your partnership AND trail blazing. i'll be back soon. aliyah
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Postby Cece » Sun Aug 29, 2010 1:53 pm

aliyalex, best wishes for a great outcome!!
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Postby newlywed4ever » Sun Aug 29, 2010 5:30 pm

Aliyalex - ditto what HappyPoet & Cece posted. Believe in the power of positive energy/prayer as alot of people are directing same to YOU!
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Postby dlb » Sun Aug 29, 2010 5:37 pm

All the best to you Aliya! Look forward to reading your progress reports!
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Postby kaboodah » Mon Aug 30, 2010 7:11 am

I was blessed by meeting Dr. Mehta in July. I am patiently (not really) awaiting approval by insurance and hope to have the answer today. HappyPoet, even with the extensive vocabulary you have with your gift of words and writing, do you find it hard to speak so highly of Dr. Mehta and his nurses and have it proclaim the true effect of their dedication and compassion? I try to talk to others about Dr. Mehta and his nurses, but I just don't seem to have the correct words that truly express how wonderful they are. I have said that I just want to rent a bus and take everyone I know on a "field trip" to meet him so that they can understand. lol They are truly "diamonds in the rough" and blessings from above. I hope you are doing well, and I hope to be able to share my experience soon. I have RR, but do not take any medication. I found after years of taking medication, I actually do better without it. I have also believed for a very long time that having a positive attitude is a huge factor in the disease. Of course it is not always roses, but I think that if I wasn't so positive, it would be so much worse. It works great for me, but I understand that this disease is as individual as the person. What works for me is not what works for everyone.

I wish Amtrak would expand...its such a long drive to Albany... though I will do it a million times if it works! God Bless!
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Postby HappyPoet » Mon Aug 30, 2010 12:12 pm

LauraV wrote:Happy Poet, one of the considerations you mentioned was Vascular surgeon vs. Interventional Radiologist. Do you think that one is better than the other? Do think that they have different approaches to CCSVI and the liberation treatment? You chose a vascular surgeon to do your treatment. Any particular reason?

Thanks for all your posts!

Laura,

You're welcome.

You ask excellent questions worded perfectly.

1. No, I do not think one type of doctor is better than the other, but I can say that while both types can do endovascular catheter procedures, a vascular surgeon (VS) is trained in vascular surgery whereas an IR is not.

I can also say that VSs can surgically correct conditions that IRs cannot, such as CTOS/TOS* (Cerebellar Thoracic Outlet Syndrome) which has identical symptoms to MS/CCSVI, but these symptoms are due to nerve compression by bone/muscle (subclavian level) instead of, for a recent forum example, vein compression by an artery as in May-Thurner Syndrome which VSs can also correct. (*Please see important Reference section at bottom.)

2. Yes, I think that they have different approaches to CCSVI and the liberation treatment. These specialists have vastly different patient experiences and lengths of patient-doctor relationships from each other which causes them to see the same things differently, from a different viewpoint, such as with contrast: long-term relationships with patients allow the VS to see problems caused by contrast that the IR might usually only read about.

3. I chose a VS based on the advice of my primary care physician of the past ten years who works in consultation with my PAIN management doctor. They know my overall history best.

Our top concern is me avoiding relapses (worried about very large, mostly afferent thoracic lesion now marching into the efferent cord fibers) by avoiding PAIN, travel and illness.

All is good. Having a VS on board is good for CCSVI.

Cheerleader's ball continues to roll . . .

~HappyPoet

Reference section:

TOP 5 SYMPTOMS OF TOS* - Thoracic Outlet Syndrome

1. Constant pain in R forearm, hand, shoulder, side of neck and shoulder blade.

2. Feeling of swelling in R arm, especially hand. Feeling of swelling in both hands, forearms, neck, cheeks, ears and ear areas, back of head, shoulders (all of this bilat), less when in bed propped with multiple pillows and more with any physical movement.

3. Tired. Extreme fatigue daily, requiring daily multiple naps, interspersed with nights of inability to sleep due to pain, sleep is usually only several hours at most due to pain.

4. Inability to use R hand / arm normally. Right hand trembles, loss of use almost completely after initial exertion. Left hand has some use, but with extended exertion also loss of use.

5. Headaches, especially related to the neck muscles and behind the right eye. Headaches are still daily, disabling, and include several migraines per month, and include pain to the jaw, (bilat), behind the eyes, up the side of the face, and ears.

*Borrowed from NeuroTalk, 8/06
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How can you folks reach Megan ???????

Postby brave » Tue Aug 31, 2010 6:30 pm

I'm puzzled that I contacted Dr Mehta's office in Feb 10 and since then didn't hear from them, recently I e-mailed Megan to follow up and she replied asking me to contact her to schedule an appointment. :lol:

so far I have called more than 10 times and ended up leaving her VM and again she e-mail me asking the same.
I'm wondering why she is not calling me whiile she is mostly not at her desk and hard to reach. I'm sure I'm easier to be reached but she keep asking me to call her.

have you folks had this problem? how did you manage it? :roll:

Thanks
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Postby Kathyj08 » Wed Sep 01, 2010 6:09 am

I've done most of my communicating with Megan via e-mail, but there were a couple of times she called me with questions. I'm sure she gets loads of e-mails but perhaps you can send her another one stating that you cannot reach her by phone and could she please call you instead?

Kathy
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Postby HappyPoet » Wed Sep 01, 2010 8:38 am

IT'S A GREAT DAY IN THE NEIGHBORHOOD

Dr. Mehta's CCSVI clinical trial has been approved!

Below is a copy/paste of my post announcing the news in a new thread:

HappyPoet wrote:.
It's a great day for CCSVI.

It is a pleasure to announce that Dr. Mehta's "Study to Evaluate Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Multiple Sclerosis Patients" has been approved by clinicaltrials.gov, a service of the U.S. National Institutes of Health.

The trial is now open and recruiting patient volunteers. All information can be found here: http://clinicaltrials.gov/ct2/show/NCT0 ... svi&rank=1

This is a large-scale, multispecialty, double-blind, randomized venoplasty treatment trial.
.

Here's the link to the thread: http://www.thisisms.com/ftopict-13525.html

~HAPPYPOET :D
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Postby Cece » Wed Sep 01, 2010 11:02 am

Great news, HappyPoet!!!

Maybe this is why he started to do treatments this past month? It gets him some more ccsvi experience before he starts the trial? Whatever the case, I am happy for him! There is so much riding on these trials.

Reading through it now. He will also be gathering data on oxygen saturation changes. Is this the same as Hubbard's BOLD data?

He's excluding PPMSers. RR and SP only.

Ratio of treated group vs sham is 2:1. That's a 66% chance of treatment, 33% chance of placebo treatment for a year.
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Postby aliyalex » Wed Sep 01, 2010 11:27 am

hi y'all,

i had 1/3 of my treatment done yesterday. my rt jug was 80% occluded and when i turned my head right, 90%. it is opened now.

my left was and is 90% occluded. waiting for my 2nd appointment.

i had the pleasure of meeting HappyPoet yesterday. what a supportive community. Aliyah
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Postby HappyPoet » Thu Sep 02, 2010 9:29 am

Hi aliyah, the serene butterfly,

Meeting you was a pleasure, too. One appointment down for you, one to go... I can't say enough that rest and sleep are very important now, so please be extra good to yourself by getting lots of rest and sleep. :)

All my best,
~Pam
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Postby aliyalex » Fri Sep 03, 2010 9:29 am

thanks for the reminder. you are an asset here. dont forget it. i have my part 2 appt for the 13th.

thank you HP and Cece for your trueblue support. aliyah
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