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

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

Postby Cece » Sun Feb 07, 2010 5:22 pm

I asked about inclusion and was told the only inclusion is a definitive MS diagnoses.


Ok this is great news!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Hi Jen...

Postby leetz » Sun Feb 07, 2010 9:03 pm

i too live about 10 miles from Albany...glad too hear someone so close to home:)
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: Hi Jen...

Postby jr5646 » Mon Feb 08, 2010 3:16 pm

Cece wrote:Hilton Garden Inn University Medical Center. It's connected by skyway to the hospital and has a shuttle to the Albany International Airport.

Hotel - Shortened LINK

That sounds great...and will make things really conveinient for those of us who have a difficult time getting around too!! Thanks for finding this... I'll be staying there, just hope we get a call soon. The wait is killin me..

Cece wrote:I am also wondering about more logistics...will Dr. Mehta's team be able to bill this to insurance?


I asked Megan the same thing, Cece... They don't know yet??? I hope this doesn't become a dealbreaker!!! I believe someone posted billing codes from Stanford. I think I read where ins. would pay if at least 50% blockage is found...


Jen570 wrote:Hi! I have been on this board for a while but never post and when I wanted to I forgot my login. :roll: Damn MS! So I had to re-register. The Hilton is very nice. Not far from the airport. I asked about inclusion and was told the only inclusion is a definitive MS diagnoses. I didn't ask Meg how many were on the list and how many were being allowed in the study. I'll have to ask. And I'll ask her about the billing stuff. Jen :D


Well I qualify.... yeah! Thanks Jen... This testing/trial/treatment/study or whatever you want to call it may set a precedence for other Dr.'s to follow... Stanford paved the way for sure and Dr. Dake and staff need to be thanked for that!

leetz wrote:i too live about 10 miles from Albany...glad too hear someone so close to home:)


Hi Leetz.... maybe you and Jen can open up bed and breakfast's for ccsvi patients lol.. just kidding.. it's amazing that you and Jen live so close.

Keeping my fingers crossed...
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Postby jr5646 » Mon Feb 15, 2010 7:30 pm

I didn't want this thread to die....

No real news other than an e-mail from Megan (Clinical Research Coordinator - Nurse).. They are still waiting on approvals and are shooting for March. They will contact those of us on the list...

Fingers crossed...

Curious how they will address angio. only procedure though? Didn't Dr. Dake and Dr. Simka find certain areas of the IJV's that angio. didn't work and required stents? Meaning they tried angino only and the vein immediately collapsed..

SEE - Dr. Dake's PowerPoint Presentation: CCSVI and Multiple Sclerosis Workshop St Joseph’s Healthcare Hamilton Sunday, February 7, 2010

pg. 50:

Constellations of locations and etiologies of venous obstruction in patients with MS

•High Internal Jugular (C1-3 vertebral level)–Often at C1 associated with impingement from anterior aspect of broad-based transverse process –May be a dynamic obstruction related to position (vein stretchedwhen supine with neck extended)–PTA ineffective; stent commonly improves, but outward force may cause pressure injury to CN XI (acccessory nerve) which runs in jugular sheath

•Mid Internal Jugular (middle third between upper and lower segments, C4-6)–Usually secondary to arterial compression from ectatic carotid located medial to vein (side by side) as opposed to anterior/posterior relationship –PTA ineffective; stent placement relieves compression

•Low Internal Jugular (lower third, including valvular segment, C7-T2)–Pancake flattening subjacent to sternocleidomastoid muscles has a dynamic character of unknown etilology or physiological import–2nd loci related to abnormal valve function (stuck or inverted leaflets, stiff/stenosed valve, etc.)–These sites may exist in combination or alone. Valve abnormalities frequently respond tp PTA, with stent placement reserved for persistent obstruction


When I think of this realistically, WOW do the stars have to align for us to get some relief...

1) Study gets approved..
2) We're on the list and don't have to wait forever
3) We get a call and an appointment..
4) Testing positive for CCSVI
5) The stenosis is in the lower internal juglar...
6) PTA may just work in this area
7) Pray that it helps our MS progression and symptoms...
8 ) If the angio works, pray that it does not restenosis...

Not to mention travel expenses plus the BIG unknown variable - medical coverage - will they pay????? ... i

Don't mean to be a downer... but man the odds of all the above aligning really suck. This is what happens when we think too much...

I'm bumming myself out... sry...
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Postby Cece » Mon Feb 15, 2010 7:55 pm

jr5646 wrote:1) Study gets approved..
2) We're on the list and don't have to wait forever
3) We get a call and an appointment..
4) Testing positive for CCSVI
5) The stenosis is in the lower internal juglar...
6) PTA may just work in this area
7) Pray that it helps our MS progression and symptoms...
8 ) If the angio works, pray that it does not restenosis...


Also to have CCSVI you have to have two stenoses, right? So maybe that ups the odds of at least one of them being in a treatable area.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Cece » Sun Feb 28, 2010 7:43 pm

*bump*

Early March occurs in exactly 2 hours and eighteen minutes, by my estimate....
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby jr5646 » Sun Feb 28, 2010 7:57 pm

:) I'll have my phone within arms reach at all times Cece..

May the stars align.... I'll post the minute I hear something and hopefully you can too.

I hope Albany calls before Buffalo..
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I got email today

Postby larmo » Mon Mar 01, 2010 9:56 am

Megan sent me the standard form letter today saying they will begin in March. Quick reply, I just sent her the inquiry yesterday. I'd much rather go to Albany than to Poland. :lol:
I already got my passport so I'm ready to go wherever - whoever can do the treatment the soonest. I've been following this site and it is packed with useful information and immense hope. Just spend the time and read read read. Follow ALL the links and even the non-linked URL's (copy and paste). It will take some time but don't get discouraged, it's all here. Just be patient and look. What ? You got something better to do :lol:
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Postby bestadmom » Mon Mar 01, 2010 10:06 am

JR5646 PLease check your private messages
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Postby larmo » Mon Mar 01, 2010 3:16 pm

bestadmom - your signature is great.
ROTFLMAO
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Postby bestadmom » Mon Mar 01, 2010 8:07 pm

Larmo,

I have to give credit where it's due on my siggy- my creative husband dreamed it up and did the photography.

I sent you a pm last night, but you ddn't read it. Please do. There's a setting you can turn on so you get emailed when you receive a pm.

Michelle
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Dr. Mehta

Postby Vivianne766 » Mon Mar 08, 2010 10:54 am

Has any body heard from Dr. Mehta's office yet?
I am waiting for any info. re. their CCSVI trial. I don't know how many people are on their list- how much it wili cost.
...but I am so ready to go to Albany.
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Postby Cece » Mon Mar 08, 2010 11:06 am

Vivianne, there have been a few people who have heard but I haven't been one of them. I've made arrangements instead to be treated by a different New York doctor. It looks like it will be covered by insurance. Wheelchair kamikaze posted about this doctor on his blog this weekend, so contact information and a very postive review of him is there....
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby jr5646 » Mon Mar 08, 2010 3:15 pm

I haven't heard anything yet either.. and I'll be doing the same thing as Cece .. If I hear anything I'll be sure to post..
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Postby Vivianne766 » Mon Mar 08, 2010 4:27 pm

I really hope I will see posts about Dr. Mehta's team and the CCSVI trial soon. I am waiting for some good news.
Good luck to us all.

;)
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