DrSclafani answers some questions

[Cece]

all patients will be be placed in our own internal registry

This is a big point too - data on all patients from all AAC clinics go into the registry. Lots of data for Dr. Sclafani to process and publish on.

That's not really a question, sorry. But it is exciting.

there will be no publishing or sharing data outside the organization until irb approval

ok, less exciting now....

[David1949]

I think this is a steep learning curve. Someone showed me a case today and i missed completely the azygos problem. went right by it.
feel kind of silly actually

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

[drsclafani]

Dr. Sclafani,

You were kind enough to translate my ultrasound report a month or so ago and now I need some advice. I know that you can't tell me what to do but just wanted to get your opinion on the current state of affairs. I currently have a mild case of MS (if there is such a thing), mostly just dizziness, headaches, fatigue and some minor cognitive issues, my mobility has yet to be effected and I can pretty much get through my days without too much trouble. My issue is, should I have the procedure performed now or would the more prudent decision be to wait and see what some of the studies show? I know it is a personal decision but just thought you might have a little more insight into the risks of waiting a little longer vs. having the procedure performed now. I am in Canada so would be travelling to the US and paying out of pocket, that being said I have no problem finding the money to do it, to take the chance. I appreciate any advice you may have for me and I am so glad to hear that you will be back in action in January!

one could argue that the symptoms you describe, fatigue, headaches, dizziness and minor cognitive issues, may be symptoms of CCSVI rather than the MS. What does your MRI show?

My most recent MRI shows 5 or 6 lesions. I also had a lesion on my spine that was causing severe tingling from the middle of my back to my toes but this lesion got progressively smaller over my past 3 MRI's and I no longer have the tingling sensation. The more I have been reading and comparing my symptoms I have wondered many times if I have MS at all...or maybe I have "CCSVI" or some other issues that mimic MS symptoms. Forgot to mention, I also have central sleep apnea...chalk up another symptom for blood flow issues!

The more I think about it the more I think I need to get this done...just a little scary stepping into the unknown!

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

[drsclafani]

This is a big point too - data on all patients from all AAC clinics go into the registry. Lots of data for Dr. Sclafani to process and publish on.

That's not really a question, sorry. But it is exciting.

there will be no publishing or sharing data outside the organization until irb approval

ok, less exciting now....

sorry to burst your bubble..

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

[drsclafani]

I think this is a steep learning curve. Someone showed me a case today and i missed completely the azygos problem. went right by it.
feel kind of silly actually

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

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

[bluesky63]

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.

[Kleiner]

one could argue that the symptoms you describe, fatigue, headaches, dizziness and minor cognitive issues, may be symptoms of CCSVI rather than the MS. What does your MRI show?

My most recent MRI shows 5 or 6 lesions. I also had a lesion on my spine that was causing severe tingling from the middle of my back to my toes but this lesion got progressively smaller over my past 3 MRI's and I no longer have the tingling sensation. The more I have been reading and comparing my symptoms I have wondered many times if I have MS at all...or maybe I have "CCSVI" or some other issues that mimic MS symptoms. Forgot to mention, I also have central sleep apnea...chalk up another symptom for blood flow issues!

The more I think about it the more I think I need to get this done...just a little scary stepping into the unknown!

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

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.

[magoo]

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!

[Donnchadh]

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

[nancymno]

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?

[Cece]

besides if you are a PPMS with EDSS 9 and you get finger movement, that is huge!

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

sorry to burst your bubble..

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

That is much better.

[Eyal]

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).

[Cece]

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

[drsclafani]

Good morning Dr. Sclafani. I hope that in the middle of everything else you and your amazing staff find some time to catch some rest. I am overwhelmed by your commitment and Holly's dedication.

I had an initial procedure during the summer and felt great for a while, then had symptoms return, although not as severe as before the procedure. (I would say I went from 7.5 EDSS before down to almost 6 right after and now back to hovering between 6.5 and 7.)

The doctor said elastic recoil was most likely. But I got the impression that one of these veins might be just too small in the first place? I am easily confused and I have to admit that even though I asked for several different ways to explain it I didn't really understand what he was saying.

I hope this is the relevant image. (I have a whole disk, but I can't open it because my little computer doesn't have an external drive, so this is the best I could do.) What are all those veins? Is the skinny one on the lower left anything important? That's what I couldn't figure out. I know the curvy thing on the top is the azygous.

Maybe I could send the actual disk since I am on your list for the future for a repeat.

Thank you for any insight, and for everything else.

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

[drsclafani]

thanks Cece

Dr S,
I have had MS 4 years (who really knows) at least thats when diagnosed. n Secondary progressive. No fatigue issues, no cognitive issues, duh I think, seriously all my activity in my t,c,l spine. Spasticity and stiffness horrible to point where i am not walking without assistance. THink Liberation may help me or is it just to hypothetical?

unpredictable in SPMS

are the other categories more predictable??

i cannot predict response yet