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

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

Postby Vivianne766 » Fri Jun 25, 2010 10:48 am

If it wasn't for that stupid IRB we could have liberated by now.
5 months has not been a picnic for me.
:evil:
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Postby Kacey » Sat Jun 26, 2010 5:12 am

I understand, completely. Hold on, sister. Help is on the way!!
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Postby HappyPoet » Tue Jul 13, 2010 8:21 am

Hi everyone,

I spoke with Megan this morning. Dr. Mehta is still very passionate about his trial and about helping us, but he still has not received IRB approval -- he is closely working with the IRB which meets every two weeks. Also, as soon as they hear they've been given approval, they'll send everyone on their list an email.

Yes, waiting is so frustrating, and even I sometimes feel the grip of fear and think about going to Poland or elsewhere. Heck, sometimes I think I'd be willing to go to Pluto in order to be liberated, but for those who are on Dr. Mehta's list and haven't looked for or found another doctor closer to home, I do believe he'll get the IRB approval and that the wait will have been worth it.

After all, besides Dr. Mehta being a wonderful doctor, think about everything that's been learned over the past five months, and for those of us still waiting, we'll have all those advantages and perhaps more that haven't been discovered yet. Here's a short summary list of some of what has been learned in the past five months:

1.The catheter should enter the LEFT femoral vein to check for May-Thurner syndrome.
2. Using IVUS might find stenoses such as septums that otherwise could go undetected.
3. A high jugular stenosis can be physiological rather than pathological.
4. A low jugular stenosis that is fixed can help fix an upper jugular stenosis.
5. The cutting balloon can help fix troublesome valves.
6. And more.

Again, I met Dr. Mehta in person and strongly believe the wait will be worth it. I could see in his eyes how thrilled he was that he had helped Kacey's husband and that he might be able to help me and so many others.

I could feel in his handshake his unshakable determination to help every single patient he can, the memory of which still helps give me strength -- and I hope it gives everyone else strength, too.

Warmest regards,
~Pam
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Postby Cece » Tue Jul 13, 2010 8:50 am

Thanks for the update! He has had one long wait for irb approval. I remember back in March when we thought it was all going to happen immediately.
"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 HappyPoet » Tue Jul 13, 2010 10:13 am

Yes, Cece, it feels like a long wait, but I think the distinction of the longest wait for IRB approval goes to Dr. Dake at Stanford, but I can't remember when he was shut down... summer, fall?
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Postby Katie41 » Tue Jul 13, 2010 5:21 pm

Early December 2009
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Postby Vivianne766 » Thu Jul 15, 2010 9:56 am

Got a call from Dr. Mehta's office.
They are offering diagnosis and testing only at . Still waiting for the IRB.
oh boy........... !
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Postby Cece » Thu Jul 15, 2010 11:12 am

Vivianne, that is great news!

HP, after the stent migration and death, I think it is a sign of confidence in him by the hospital that Dr. Dake would even have a chance at irb approval. I just hope that the final outcome is an approval, for all docs who want to do this.

So is anyone going to Dr. Mehta's for testing and diagnosis?
"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 hannakat » Thu Jul 15, 2010 12:45 pm

Talked to Megan from Dr. Mehta's office. Doing venography with diagnosis .... it would be MORE frustrating for me to have him perform the venography, see a problem, not fix it than it will be to wait for testing/treatment.

Taking the test results to a different doctor (even if I had the capability to find someone....not everyone has a wife or husband to do the leg work for them) I wouldn't want just any IR or vascular surgeon doing it. I will wait for someone who is fully vested in this already.

So, no, I'm not pursuing testing without treatment. To pay for travel, hotel, etc., without treatment is not something I can do....financially or mentally!!
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Postby Cece » Thu Jul 15, 2010 1:00 pm

It is not great news?

Compared to full testing and treatment...yes, that would be much much better. But compared to nothing, it is at least something. Full catheter venogram for the diagnosis? This is better than what Buffalo is offering; they are doing diagnosis no treatment using imaging for $4500, no insurance accepted.

I am also assuming that once the irb passes, then they would be free to do the treatment too. I could be wrong on that!
"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 1eye » Thu Jul 15, 2010 2:51 pm

As long as the best vascular surgeons in the area are held up, there will be trouble with the rest. It is a new field, and clinical trials are what these scientists want to do. That's why I told them, they don't need an IRB so much as they need a private eye, to attend the board meetings.

There *are* reports of unexpected failures to diagnose and to treat, and we need the best, to step up and demand to be allowed to study this. Or we risk not meeting the needs of hundreds of thousands of Americans, and potential foreign customers, for the sake of some doomed drug therapies. Throwing out the baby, the bathwater, and the tub.

Time wounds all heels (Marx) but there is always tendon surgery (Achilles). :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby jr5646 » Thu Jul 15, 2010 3:35 pm

I missed Megans call today... bummer :( Since I've already had the procedure almost a month ago (in the same vicinity), I'm contemplating offering myself up for study. Being that I'm in the 1/3 group that was treated with little to no change/benefit... possibly even worse off.

I need a follow-up anyway.. so I'll give her a call tomorrow and find out.

I just received a copy of my report from the procedure.. I guess I have "untreatable" lumbar hypoplasia (underdevelopment).. This may explain a few things in the lower extremities like increased ballance, leg cramping, cement legs and fatigue issues...

I don't know what the hell to do !!!!
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Postby Cece » Thu Jul 15, 2010 4:34 pm

I didn't know that was the 1/3rd you ended up in. :(

I hope there is a solution and that you find it.
"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 Vivianne766 » Thu Jul 15, 2010 4:43 pm

You are in my thoughts. I will have positive thoughts for you.
God help us all.
Today I got a call from my GP telling me that I am anemic and I need to take Iron.
...........I don't think I will.
Has anybody heard of how Dr. Hubbard is doing re treatments?
Anyone been to the hubbard foundation for treatments?
sorry didn't mean to change the subgect.
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Postby Cece » Thu Jul 15, 2010 4:51 pm

:wink:
Last edited by Cece on Sat Jul 17, 2010 9:09 pm, edited 1 time in total.
"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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