This Is MS Multiple Sclerosis Community: Knowledge & Support

Sponsored by CCSVI Alliance--
link to invite:
http://events.r20.constantcontact.com/r ... =pflw7ieab
Tuesday March 27, 2012 6:30 PM to 9:00 PM PDT
Marriott Marquis, Club Room
55 Fourth Street
San Francisco, CA 94103


see you there-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Dr. Dake, Dr. Arslan, Dr. Burks, Dr. Machan, Dr. Sclafani, Dr. Simon, Dr. Siskin! A very nice line-up.

The thread on Dr. Burks' comments at ISNVD generated some discussion here. I wonder if there are any questions that we as a group would have for Dr. Burks. There is such strong rhetoric going on, on both sides. Liberation, cowboys, aliens, talking like a neuro...would the neurologist community be willing to tone down the rhetoric and discuss this scientifically and with respect for professional and multi-disciplinary colleagues? And the same with the SIR community? Another observation would be that the two different disciplines seem to be getting exposed to opposing information; generally speaking, the abstracts presented at SIR or ISNVD have positive findings regarding CCSVI and the abstracts at AAN or ECTRIMS have negative findings. Even the pulled abstract from Dr. Sinan's errant team member that would have been presented at AAN was negative. What is causing this discrepancy, and are journals and conferences reinforcing their pre-existing beliefs through the abstracts or research that is chosen? Would the neurologists be open to reading through a complete compilation of all CCSVI research that has been done to date, both positive and negative, and the vascular specialists be open to the same?

Wish I could be there!

Great questions, Cece!
I'll try to bring them up and get some answers for you and all of us.
Yes, toning down the rhetoric and working together, in a cooperative manner, would be appreciated by all of us on the sidelines.
ISNVD had alot of different specialities, all looking at the implications of venous abnormalities in neurovascular disease.
The positve/vascular and negative/neurologic findings are puzzling. Dr. Fox's team seems to be the lone group finding correlation and open to working with the vascular docs.
Wish you could be there, too! We'll have to meet at one of these conferences sometime....
thanks for the great input,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Dr S in Buffalo???

thanks for catching that typo, Doug--
will send to our admin. Should be Brooklyn--

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Should be American Access Care, too. Fresenius??

Cheer, I am sure we will meet at one of these conferences someday! For anyone thinking about attending the doctors' roundtable, this is an opportunity to see the east coast doctors that aren't always at the west coast events.

Hello Cheer,
I hope you ask the simple questions that patients need to understand before paying for the therapy;
A simple series of questions on 'CCSVI syndrome' asks:
Who, When, What, How. The final 'why' is left until the first four are answered.

1 - WHO has CCSVI syndrome? - pwMS (all/many/most?) and which other diseases ?
2 - WHEN is CCSVI syndrome seen? at birth? at diagnosis? 5/10 years after MS diagnosis?
3 - WHAT is seen in CCSVI syndrome? stenosis of vein valves? webs/septums? restricted veins? veins involved?
4 - HOW is CCSVI syndrome seen? Screening test by? full diagnosis requires (tools+methods)?
When the above are fully answered then:
5 - WHY does CCSVI syndrome develop ? Not important for patients but sadly the focus for reseachers at ISNVD 2012 !
I cannot join you in person but could make a phone call to ask the quuestions in person, if that helps.

Congrats, a great panel who need to be challenged to answer questions on the 'patient's needs'. I am a realist and will accept the answer 'no one knows'. Such answers must be shared with patients, who must have realistic information to make their choice. It was a rational choice for me, so I have had the procedure twice.

This is the first series of questions on 'CCSVI syndrome'. Next series will be 'Treating CCSVI syndrome in pwMS'. THe same 'Who, When, What, How and Why' are repeated, probably in a different order.

Best wishes,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

https://www.facebook.com/pages/CCSVI-in ... 9105348790

Great news! I am not sure how closed off to the discussion he will be, and he also won't have any direct experience in treating or researching CCSVI, but much experience treating MS from an autoimmune standpoint.

I look at this as a postive step, Cece....just the fact that Dr. Goodin is willing to come to the table and listen and join the discussion is a plus. We need neurologists who are open to looking at the research and making suggestions. That has not been easy. Semmelweiss reflex has been tremendous. The first step is sitting down together. It's important to realize that ALL of Dr. Zamboni's treatment trial locations have vascular and neurological cooperation. This is essential. Dr. Goodin is familiar with Dr. Fox's study, and will most likely speak on that. Sadly, Dr. Fox had to cancel, and can't make this panel.

Mark--the CCSVI Alliance does not recommend patients self-pay or travel for treatment, but that they participate in local trials or registries through their insurer, whenever possible. We have a bit of a different situation in the US. I can also tell you, from speaking with these doctors and attending many conferences, that the answers to your questions are years away. I wish that were not true, and that we had more hard data, but these studies take years and the data is only beginning to come in. Dr. Zamboni's studies are ahead of the curve, since he's ten years ahead of the US researchers. The ISNVD is at the forefront, and their presentations in Orlando were research focused, as you well know. I had no idea, back in 2009, what an arduous and time-consuming task this would be. (Maybe that's a good thing....)

Jeff's coming with me and will introduce Dr. Dake and speak a bit....that's a first for him! He's feeling so good and wants to speak out. Three years since his treatment, now.
I'm looking forward to this roundtable.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

another stepping stone in understanding CCSVI

I have a question that I hope some roundtable attendee can ask these experts.

Q: There have been significant reports of pwMS obtaining great benefit from having undergone CCSVI treatment. We have viewed the videos . We have read multiple first hand reports of ms function improvements . I have no reason to doubt nor question these fine CCSVI brave pioneers . Their story's are uplifting and give hope and encouragement to anyone suffering from MS ..... and possibly .... other medical conditions.

My question to these doctors is : Have you treated any pwMS that HAVE NOT been taking DMD's before, during , or after CCSVI treatment ?

I want to eliminate DMD's as perhaps the reason for symptom improvements.

That's good science ... I think.


MrSuccess

Yes, definitely a positive. I was jumping ahead from the good news of his agreeing to participate to my assumption of what his attitude will be. And maybe it won't be that way.

Great to hear that Jeff will be involved! The two of you are an inspiration.

MrSuccess, it does seem like the use of DMDs during trials will be held up as a possible confounder. But CCSVI treatment is additional, not in place of DMDs, so I don't think they can require people to not be on DMDs for the trial. Of course I wouldn't think they could do sham procedures either! Anecdotally, I had given up Copaxone six months prior to my procedure and remain off of it, and I have had good symptom improvements that are continuing.

You would think the neurologists would be seeing patients coming back from CCSVI treatments with improvements, and should be seeing for themselves that this is working.

Hi Cece , one important thing to remember ..... Dr.Zamboni has never advised anyone to stop taking their DMD's after being treated for CCSVI. If I remember correctly , Mrs. Zamboni still takes her DMD's . I just want to make clear that I am not suggesting those fortunate enough to have had CCSVI treatment , stop taking their MS medications.

That's a choice left up to each and everyone. I would follow Dr.Zamboni's advice .

My curiosity is .... how effective CCSVI treatment is [ or is not ] when the procedure is performed on pwMS that have never used DMD's.

Based on the large volume of reported CCSVI treatments undertaken ...... there must be a subset of pwMS that this apply's to .....

I wonder what Neurologists label pwMS that refuse DMD's ?

And yes .... there should be numerous CCSVI treated pwMS available for the Neurologist's to examine and evaluate . Let's hope we can get some honest feedback from them.


MrSuccess

In response to your question about not taking DMD's before during and after, even tho the doctors DO NOT recommend that you stop them, I did stop them 3 mos b4 treatment for the very reason that I didn't want my improvements (if any) to be attributed to the DMD's. I experienced miraculous improvements that only lasted 4-5 weeks. I know the improvements were due to blood flow, not DMD's. Unfortunately, due to a difficult jugular, we have not been able to maintain the improvements; however, I have NO DOUBT that blood flow is the key to my improvements, not DMD's

Icechick may I ask a question? Were you taking blood thinners prior to and following the CCSVI procedure? If so, did you stop taking them around the time when your MS symptoms returned?

I agree with you that blood flow is the issue.