This Is MS Multiple Sclerosis Knowledge & Support Community

Squeakycat wrote:The naysayers in this case are the neurologists working with the Alberta Health Services, making this part of an official government statement on CCSVI.

This official government document makes it clear that neurologists are the experts with knowledge of blood-brain issues and if they don't think there is any merit to CCSVI, neither should you.

This discussion is irrelevant. I do not treat MS, I treat ccsvi and its symptoms

like fatigue.....any neurologists know what causes it? or how to treat it?

it is one of the consistent improvements that patients describe.

I have steppred down as chief of radiology to dedicate my attention on ccsvi. I will ansswer questions when I return to new york

I can't imagine how hard that decision was to make. At the same time having followed your posts and seeing how much you care about patients I imagine the decision may have been easier than expected.

I can't thank you enough for everything you have and will do to forward the understanding of CCSVI and it's impact on MS. I can only hope that there are more doctors like you in the wings and currently looking into this as agressivly as you.

Please Doctor:

"Les chiens aboient.... La caravane passe..."

Just do not bother; keep trying to follow the Ariane's wire given by Zamboni's research...

My tuppence ...

NHE wrote:

[color=blue]Dr. Sclafani's Bio[/color] wrote:Thus, he considers the hospitals his second home and its patients his family.

Indeed you do. Thank you! I am left without words to express my gratitude.

But did ever before did his patients consider him family right back?

Not "crazy uncle from Brooklyn" family but heart of the family.

drsclafani wrote: ...That being said, bringing this surgery into the discussion of MS insults the intelligence of patients and doctors alike.

i am sorry you are troubled by this nonsense distraction

It's OK. We're used to it. What is more worrisome is that the Government of Alberta seems to buy this porcine poke with both eyes and mind closed to the possibility of their being hornswoggled.

And take the MS victims with them, to the neuro-pokie.

Any recent word on a posting of a video of the confereence, or did I miss it?

Will stepping down from your University post delay the University video prep of your conference?

Dr S., I was amazed to read your news, your Hospital is loosing a valuable resource whereas the CSSVI Community is gaining a Champion. Congratulations on your decision.

NOW ALL YOU DR S FANS, PLEASE GO TO:

<shortened url>

where the NMSS Minnesota Chapter is looking for Nominations for their Luminary & Starfish Award; they are suggesting Neuro / Doctor who has contributed to the MS "cause". I certainly believe Dr S fits that bill 100% (though not sure the NMSS would appreciate it so much !!).

I am certainly nominating our good Doctor / Friend , Dr Salvatore Sclafani.

Nominees will be judged on their dedication to the MS movement, passion for providing personalized care to people affected by MS, and innovation in disease management and treatment.

Deadline for the MN starfish award nominations is Sept 10. You'd have to come up with 250 words on why drsclafani fits the above. Here's another link if welshman's gives you trouble.

<shortened url>

To fill it out, you'll need some of his contact information, which can be found on this link:

http://www.downstate.edu/radiology/facu ... afani.html

1eye wrote:

drsclafani wrote: ...That being said, bringing this surgery into the discussion of MS insults the intelligence of patients and doctors alike.

i am sorry you are troubled by this nonsense distraction

It's OK. We're used to it. What is more worrisome is that the Government of Alberta seems to buy this porcine poke with both eyes and mind closed to the possibility of their being hornswoggled.

And take the MS victims with them, to the neuro-pokie.

I think it's very sad as the man I mentioned, had three letters from 3 different radiologists confirming his stenosis, yet he was discouraged by a local doctor from seeking liberation. All he wanted was to find treatment close to home, which we all deserve and is important to follow-up care.

The fact my online friend was told by a "doctor" at his local hospital that removal of the jugulars is common place (and implying it didn't affect survival rate & those patients didn't get MS) is upsetting. I'm grateful to have Dr. S's reply so I can tell this online friend that he was misled by his local "doctor". Just like I've been misled by my neurologists here who keep telling me nothing will come of CCSVI.

So kudos to Dr. Sclafani for standing up for the truth and dispelling this false information amid what I'm sure is a busy time for him. I think it's important we ask him questions about what doctors are telling us about CCSVI so that we may continue to present medical facts to refute false information and that will eventually - hopefully - lead to local treatment of CCSVI for all who want/need it.

Thank you again Dr. Sclafani.

fogdweller wrote:Any recent word on a posting of a video of the confereence, or did I miss it?

Will stepping down from your University post delay the University video prep of your conference?

dear me, let me clarify...

i have stepped down as chief of the department in the hospital
I remain the chairman of radiology in the university.

i am thinking it is a valuable pulpit

Dr. S, I have been greatly concerned over the definition of CCSVI and the degree of variability between patients. Many contributers here and on other threads talk of whether a person has CCSVI or not as if it were a simple thing like wether they had two kidneys or not.

Is it that simple and the easily determined between individuals? It seems to me that every person's veinous system is unique and very complex, and some may be very sensitive to small disruptions and others relatively insensitive to the same disruption. A blockage at one location might be very problematic for one patient and relatively benign for another. Similarly the testing and imaging techniques employed might find problems in a patient where different imaging technique in the same individuals, or different definition of CCSVI might find the opposite. Is that correct?

Did you and your collegues reach a consensus as to what constitutes CCSVI and what imaging protocol to follow?

Also, did you discuss how you would conduct a clinical trial to blind both patients and physicians?

I appplologize if the answers to these questions are on the video of the conference, but I haven't been able to find that.

drsclafani wrote:This discussion is irrelevant. I do not treat MS, I treat ccsvi and its symptoms

like fatigue.....any neurologists know what causes it? or how to treat it?

it is one of the consistent improvements that patients describe.

To take this literally:
Neurologists have offered a couple suggestions for what causes the fatigue.
1) it's a result of the lesions and the brain having to work with less than optimal pathways
2) it's a result of the inflammation of the brain
3) it's a result of depression either organic due to the brain damage or emotional from the difficulty of living with MS

BUT
1) fatigue is not correlated with number of lesions, which it should be if #1 were true
2) well, that's a decent point, I think?
3) also a good point?

So I don't think we can throw out the neurologist's ideas on fatigue altogether, because those second two ring true (I think?)...but there is plenty of room there for CCSVI to be #4 on the list and the biggest one of all.

Cece wrote:

drsclafani wrote:This discussion is irrelevant. I do not treat MS, I treat ccsvi and its symptoms

like fatigue.....any neurologists know what causes it? or how to treat it?

it is one of the consistent improvements that patients describe.

To take this literally:
Neurologists have offered a couple suggestions for what causes the fatigue.
1) it's a result of the lesions and the brain having to work with less than optimal pathways
2) it's a result of the inflammation of the brain
3) it's a result of depression either organic due to the brain damage or emotional from the difficulty of living with MS

BUT
1) fatigue is not correlated with number of lesions, which it should be if #1 were true
2) well, that's a decent point, I think?
3) also a good point?

So I don't think we can throw out the neurologist's ideas on fatigue altogether, because those second two ring true (I think?)...but there is plenty of room there for CCSVI to be #4 on the list and the biggest one of all.

Cece, I dont think CCSVI says anything contrary what has been said about MS. It just explains the reason for erratic immune. That's all.

Lack of oxygen to the brain cause extreme fatigue. CCSVI treatment/angioplasty did the trick for me.

annad wrote:Lack of oxygen to the brain cause extreme fatigue. CCSVI treatment/angioplasty did the trick for me.

Absolutely, same for me - isn't that something to get your brain unclogged Sorry, no question Dr Sclafani, but happyness on hols and now also back with loads of energy at work