update on the meeting in Toronto M.S. society ??

PCakes · Post by **PCakes** » Sun Jun 19, 2011 11:29 am

ikulo wrote:My point isn't to stir the nest here, I just want to point out to those considering this treatment as very safe - we are learning more and more about this each day, so please if you're considering having this done, be careful!

ikulo.. I agree with your comment. However your link to tysabri statistics is a bit outdated.. it's from 2009.

This one is more recent.. March, 2011 http://www.foxbusiness.com/industries/2 ... -patients/

It's all so sad.

1eye · Post by **1eye** » Sun Jun 19, 2011 11:42 am

PML rate is higher than death rate. Which would you rather have, thrombosis or PML?

Cece · Post by **Cece** » Sun Jun 19, 2011 12:59 pm

from a commenter on the CCSVI in Toronto facebook page:

Ok I am sorry but I have to comment guys in that I know this family well. They are from Alberta and can only comment so much out of respect to them because they are so still upset that there were other midigating factors as to why she died ...it was not stricly do to her having the procedure. She had other under lying medical issues a nd they knew she could ahve had risks by getting this done but he husband says she wanted to try it to see if it helped her with her MS because she had no other hope with this and was getting bad fast. W were not there, we do not know what actually happened so before any of us pass judgement lets just try to remember this family who is still greiving for their lost loved one an her children are on FB here and could be reading this. Thank you.

a very good discussion there all around:

eric593 · Post by **eric593** » Mon Jun 20, 2011 12:51 am

Was it a subdural hematoma? According to wiki, SH's generally occur when there have been tears to the "bridging veins". This sounds like an unfortunate mistake which can happen sometimes.

Dr. S.'s recent patient said that he said "I am in your brain" which I'm guessing is also in the sinus. Is SH a serious risk factor then when working in this area? Are there stats on this that would be helpful for others contemplating this type of procedure? Dr. S stated that his methods were NOT untested, so I would expect we might be able to gauge risks associated with this from data somewhere, and I guess some stats on the likelihood of a health benefit from reducing constrictions there so we can compare benefits to risks which seem higher than straight IJV and azygous angio. Do all doctors have a surgeon present when going into the sinuses? Is it mandatory?

My thoughts go out to the family. This seems to take it out of the realm of a safe, routine procedure when now we're entering the brain, and certainly not part of Zamboni's proposed treatment.

cheerleader · Post by **cheerleader** » Mon Jun 20, 2011 8:26 am

This is the procedure Jeff and many others have had for pulsatile tinnitus. It is right above the jugular foramen...not into brain tissue, but just at the base of the skull. Jeff's tinnitus has now resolved, and his left side is patent from stem to stern.
Endovascular treatment for dural sinus stenosis and idiopathic intracranial hypertension. It is typically performed by neuroradiologists, since above the jugular formen is their territory. Dr. Zamboni did not treat patients that had this specific malformation, but he did find it in pwMS. I couldn't find any deaths related in the published research.

links to endovascular treatment of sigmoid and dural sinus
It's so hard to comment not knowing the surrounding situation. My heart goes out to the family of this patient. It is tragic-
cheer

MrSuccess · Post by **MrSuccess** » Mon Jun 20, 2011 8:41 pm

back on subject .... are there any minutes of the meeting available ?

As a registered charity , is the MS Society not legally bound to record the minutes of any meeting ...... in that members who could not attend ...... can read and discover what was said ..... and by whom ?

And what exactly is the MS Society ?

Are they not a charitable organization ?

If this charity is not going in the direction the donors desire ..... then why is it being funded ?

Why not create a CCSVI Society ? And send the $$$$ there ?

I get a sense those CCSVI Directors ....... will fund the medical professionals that " stepped up " ........

Mr. Success

1eye · Post by **1eye** » Tue Jun 21, 2011 5:02 am

If yer wondering about the AGM their new executive is listed on their website.

1eye · Post by **1eye** » Tue Jun 21, 2011 6:09 am

I went to a meeting of the NewHopeForMS tour last night. We were late and missed much of the meeting. In my case, that is probably OK, because I would not have been able to make it to the end.

As it was, I got to meet Tim Donovan, and it was very good. Very inspirational, hearing stories of very good responses to procedures in mysterious hospitals in Mexico and ordinary ones in New York, from wheelchairs to walking and driving, etc. We all must demand this. This is our right as humans.

I have been to many meetings put on by the MS Society, and from those experiences, I would guess that their meeting had: a) lots of room (no crowding) b) high ceilings c) air conditioning d) close access to bathrooms. This is standard for MS Society meetings. They understand the people who have this disease.

We were crowded into an elementary school classroom with a fan next to one of a couple of windows. It was blistering hot, and crowded. There was a guy there in an electric wheelchair who was happy because he had had the procedure and was now training his heat endurance by swimming in a heated pool! The majority of the people there had been treated. Tim Donovan stood at the front for his talk. The heat brought out his limp, but he was otherwise great. I melted, because I am re-stenosing. That is what people who are on the front lines of this effort are doing. Little fund-raisers in little places that will all add up, like seconds to centuries.

drsclafani · Post by **drsclafani** » Tue Jun 21, 2011 6:06 pm

ikulo wrote:@carollevin - There is tremendous debate about all the numbers you noted. But even for the sake of argument, let's say there were 15,000 treatments and just one death. That's 1 death out of 15,000.

This report places the death risk of Tysabri almost exactly the same as CCSVI - (5 deaths out of 63,000 = 1/12,600). <shortened url>

My point isn't to stir the nest here, I just want to point out to those considering this treatment as very safe - we are learning more and more about this each day, so please if you're considering having this done, be careful!

i think we cannot think of CCSVI treatment as one entity, any more than we can think of motorized travel as all the same. scooter or motorcycle different from horse, different from automobile, different from airplane, different from bus, etc.

CCSVI interventions must also be stratified. venography- valvuloplasty- venoplasty - stenting - intradural sinus venography, - intradural angioplasty - intradural stenting - open surgical correction, etc.

Are there any deaths yet reported for venography or venoplasty. most are not doing intentional valvuloplasty but i would put that in the same category.
all the deaths i am aware of are from stenting.

I agree that we need to hear about these complications. We will not learn without knowledge.