This Is MS Multiple Sclerosis Community: Knowledge & Support

That is not quite accurate, ace. actually we can opacify and see the dural sinuses which are channels that drain the blood of the brain and pass it on, out of the skull into the jugular and vertebral veins.

There is some controversy about whether ccsvi affects the dural sinuses. Sometimes it appears on MRV that the sinuses are narrowed or occluded. This needs to be clarified and understood. And stenosis of jugular veins is reported to be associated with dural sinus thrombosis, leading to mental confusion and memory problems, loss of balance, and fatigue that resolves after the thrombus is dissolved and the jugular stenosis is angioplastied.

Dr S, any issues with your university or the Doctors with online posting of the Symposium video I took?

I vote for John Travolta, although since Dr. S is my rock star, it might have to be Mick Jagger.

There is risk to everything in life. Driving a car, taking a bus, climbing a latter, answering a doorbell. We choose to take those risks when the potential benefit of our actions or circumstances are greater than the likelihood of risk. So while there is risk of radiation, and risk of injury while wires travel through your veins, those risks are very small. Certainly the potential for benefit makes taking that risk worthwhile.

How many times? There are veins that we treat every three months in patients with kidney failure. We do not yet know how often patients will need reangioplasty after liberation. [/b]

The answer is yes. I believe it will be published soon.


No, i think that a direct rebuttal of the points made is what is needed.



kill them with facts and we win

i think it is a great idea. We just need to have some champions come forward.

Dr S, glad to read from your message to Dr Zamboni that the Symposium was what seems to be a huge success. I know you've reiterated many times that knowledge and expertise are truly needed by anyone setting themselves up to treat the CCSVI condition; the fact that your symposium was attended by (presumably) physicians from Mexico and Costa Rico, might you be changing your opinion with the knowledge that these physicians do want to learn more about the testing and treatment ? Obviously right now the Clinics in those Countries that have been established have a much less waiting time for treatment, and travel is certainly easier from North America vs going to Poland, Bulgaria or India. I know you won't want to give an opinion on the ability of physicians you don't know, but the fact they attended your Symposium to learn more must be promising for improved treatment outside N.America.

Doctor: if you stop by Taipei; give me a ring we'll go out for dinner

Dear Dr. Sclafani,

I read with great interest your comments and also your letter to Dr. Zamboni after Monday's symposium.

I have had zero luck getting my neurologist to take interest in CCSVI and he says, quote, "nothing much will come of it".

I've printed out for him the original research paper published by Dr. Zamboni et al in Dec 2008 (which he never read) and also the article from Endovascular Today called "CCSVI: A New Paradigm and Therapy for Multiple Sclerosis" by you et al (which I haven't sent him yet).

My question is, while I plan to print out the program for him also of attending physicians of Monday's symposium and your letter that you posted here (if that's okay with you), will there be published transcripts of Monday's symposium which I may also be able to print out at a later date to send him?

I tried to get him to watch the original CTV-5 interview with Dr. Zamboni, which he refused.

I want him to read these things so that he may refer me to one of the experienced IRs in the hope that my insurance will reimburse me partially for the expense of seeking treatment as this will be a financial hardship on me (I'm on SSDI), as it will be on many people.

If he refuses to help me, I'm going to send copies of everything and a letter stating that he has declined to refer me to my PCP, the medical clinic they are part of, and my insurance company (I have an HMO through my husband's employer).

Is there any added information or printed material you would recommend sending my neurologist (and other physicians)?

And again, will the symposium be transcribed on the internet at a later date?

Is it okay if I send him the letter you wrote to Dr. Zamboni?

Is there any other printed material I can access online to convince him?

Oh yes, I also intend to remind him that dialysis patients have been receiving venograms & ballooning of collapsed veins for years, however I don't know what the names of those veins are?

I am in Hawaii and to the best of my ability to find out, no IR is familiar with CCSVI to test or treat it, so I must be referred out of state as far as I know.

Thank you for taking the time to answer these questions.

selkie

Wow thanks Doc I did not know that about the Dural sinuses.......makes sense though....thanks

Congratulations, Dr. S! Overwhelming successes are everywhere:

Endovascular Today "CCSVI A new paradigm and therapy for multiple sclerosis"
Inaugural SUNY Downstate CCSVI Symposium
CCSVI Alliance
International Society of Neurovascular Disease
First Honorary Inductee into Chinese Society of Interventional Radiology

It seems I owe you a question.
~HP

Cerebral venous sinus thrombosis (WIKI) worth a read

http://en.wikipedia.org/wiki/Cerebral_venous_sinus_thrombosis

Epidemiology

See Cece, I told you!

Dear doctor Sclafani, could you share more with us about this matter?
Did you discuss about this in the symposium?
Is dural sinus the same as sigmoid sinus???

At least one of the patients that post in TiMS has been already found to have a completely stenosed (not clotted) sigmoid sinus. Her doctor told her that he would definitely stent it.

http://www.thisisms.com/ftopicp-123861-.html#123861

Is checking out the sinuses something vascular doctors plan to consolidate in the standard procedure when treating CCSVI in order to learn more?

Hi Doc,

This is my first post, although I have read every single page of this thread.

I have a friend with Type I diabetes AND MS. She became legally blind about 6 months ago from MS, not the diabetes.

I was at the conference and remember one doctor talking about veins in the eye. I wish I could recall exactly who spoke about it, and what he said. I immediately thought of my friend as he was speaking.

Question: Would her diabetes be a contraindication for the procedure? And can you remind me who it was that spoke of veins in the eye?

Thanks for a most educational day! I feel like an expert venogram reader now!

Nicole

_________________
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com