This Is MS Multiple Sclerosis Community: Knowledge & Support

ok, less exciting now....

Don't beat yourself up for not being perfect Doc. You're way ahead of the pack.

yes, and it is a good think to be deliberate in making a decision. Among the key elements are
1. what is my risk benefit
2. am i a candidate
3. do i have co-morbidities (other illnesses) that will increase the risks
4. am I sufficienty knowledgable to make a truly informed decision
5. have i had adequate pre-procedural evaluation
6. have I found a treating doctor i trust and center to rely upon
7. can i get followup care arranged. will my doctors connect
8. can i afford financially this procedure, and its followup
9. do i have adequate emotional support
10. what does my gut tell me
11. do i feel like taking a chance
12. do i feel lucky

sorry to burst your bubble..

how about, there will be IRB approved registry that will allow collaborative analysis of 2-3000 patients per year.

there will always be imperfection, but there is no room for imperfection. Each imperfection must be corrected and made perfect.

complacency with imperfection is evil because lives hang in the balance

Dr. Sclafani, thank you so much for this succinct and perfect summary of considerations:

"yes, and it is a good think to be deliberate in making a decision. Among the key elements are
1. what is my risk benefit
2. am i a candidate
3. do i have co-morbidities (other illnesses) that will increase the risks
4. am I sufficienty knowledgable to make a truly informed decision
5. have i had adequate pre-procedural evaluation
6. have I found a treating doctor i trust and center to rely upon
7. can i get followup care arranged. will my doctors connect
8. can i afford financially this procedure, and its followup
9. do i have adequate emotional support
10. what does my gut tell me
11. do i feel like taking a chance
12. do i feel lucky"

I especially like the Clint Eastwood factor.

I wanted to add that one more consideration that has to play a part for anyone with MS (especially a high EDSS) is looking at how this approach compares to the risks of MS treatment approaches currently available and the risks of doing nothing. That may be included in your numbers there, under general risk-benefit, but for my part, I struggled with this specific issue when considering the whole idea, especially as an "early adopter."

So this is not a question, just an appreciation of your ability to bring it all together and my own addition from where I stood. Thank you as always.

Dr. Sclafani,

Thanks for that list of considerations, I am very comfortable with almost all of the issues above. However, one more question...then I will leave you alone!! The only thing really holding me back right now is the risk of actually being worse after the procedure. Is this, in your mind, a valid concern? I have no qualms about trying something, knowing that I may receive no benefit, but I am 35 and have a 2 and a 4 year old to worry about, I would hate to do something that jeopardizes my ability to care for them...and enjoy all of the things I should be able to enjoy with them. Once again, I know this is a personal decision and you can't tell me what to do but hoping that you can confirm or refute my fear of this procedure actually making me worse than I was going into it.

Thanks again for all of your help and advice it truly is amazing to have someone like you to help us all through this challenge.

I just have to say, Kleiner is doing exactly what everyone here should be doing before being treated...asking the right questions.
Not only the scientific ones, but the personal ones too.
An informed and thought out decision is the best decision!

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

QUOTE Dr. Sclafani:

yes, and it is a good think to be deliberate in making a decision. Among the key elements are
1. what is my risk benefit
2. am i a candidate
3. do i have co-morbidities (other illnesses) that will increase the risks
4. am I sufficienty knowledgable to make a truly informed decision
5. have i had adequate pre-procedural evaluation
6. have I found a treating doctor i trust and center to rely upon
7. can i get followup care arranged. will my doctors connect
8. can i afford financially this procedure, and its followup
9. do i have adequate emotional support
10. what does my gut tell me
11. do i feel like taking a chance
12. do i feel lucky

UNQUOTE.

13. how desperate is my condition becoming?
14. is this my last, my best hope?

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Dr. Sclafani -
Is it possible to get a copy of the protocol for the follow up Doppler ultrasounds of the IJV. I have a local vascular surgeon who has treated me for MTS and has done my 3-month follow up on my IJV, but not to protocol. He is willing to do continued follow up, but I would like them to be to protocol. Where would I go to get that information?

This fits with Barb Farrell's situation, here is Barb talking about finger movement improvements two weeks after the procedure:
http://www.thebarrieexaminer.com/Articl ... ?e=2844207


That is much better.

Dear Doctor,
I had a venography in June 2010, here in Israel, showing numerous collaterals in both my JV.
In November 2010 I had an MRV and a venography in Katowich, Poland in which they saw a collateral in the RJV which they opened with a balloon with mild results.
My questions:
1. Are you willing to have a look at my my Israeli venography and Polish MRV photos and how can I send them to you?
2. How can I convince my Israeli IR that he is wrong and my veins are not normal?
Thank you from burning Israel (the fire is 10 minutes away from here, but, hey, I have MS, so no time to deal with that).

Eyal, I'm posting this link that begins: "This is one of the most difficult things i have ever done."

http://www.thisisms.com/ftopicp-142238.html#142238

The big one is the hemiazygos vein and the smaller one is an ascending lumbar vein. looks like a candy cane doesnt it? HO Ho HO

i cannot predict response yet