This Is MS Multiple Sclerosis Knowledge & Support Community

Liber8 wrote:Dr Sclafani,
I went and got a US Transcranial Doppler the other day and surprise! Negative per the Doc. I wish they would have done a MRV or better yet use your system of testing but they were gun shy. Back here in MN they are very careful. Not even Mayo Clinic seems to want to touch it.

The ? is, if you saw very minimal reflux in the left vertabral vein would it be considered normal in a patient with MS and would it concern you as a DR looking for CCSVI.

What significance does the left vertibral vein play in the grand scheme of things?

drsclafani wrote: yes ccsvi could be the cause of the tinnitus, so could it be a symptom of MS
tinnitus is often heard when the dye is injected into the catheter. it is related to turbulent flow near the middle ear.

jr5646 wrote:Johnnyb.. 1) Your avatar is disturbing LOL 2) IRB as pertaining to Dr. S has been previously discussed on this thread.. 3) Dr. Khan's article is chocked full of inaccuracies.. if not downright "BS" - not even worth reading 4) Can you imagine all Neurologists treating MS being this misinformed?? I'm frightened now to realize I've left my life in the hands of Neuros for the past 9 years... on the other hand, it is plausable he is INTENTIONALLY spewing fear - but for what reason(s)??? 5) I believe Dr. S has previously posted the number of procedures he has performed. 6) Unfortunately, we're probably still going to need Neurologists even after ccsvi treatment.. lets hope that the newly dx would benefit the most and completely halt progression altogether and therefore not need a neuro. ever again - This scenario would explain a neuro's fear that his cash cow may go out to pasture.

Please just read this whole thread. Very enlightening..

Dr. S - you may just need a vacation afterall ... yeoman's work is very tiring and the pay sucks...

I just can't thank you enough for your expertise, effort and compassion.

Looking forward to meeting you in June, July, August or whenever ...(fingers crossed).

Hey, maybe a (working) vacation to Kuwait??? The sharing of information is phenomenal!!

Zeureka wrote:Dr Sclafani,

When had heard of Kuwait action and results, thought this it! I was hoping this would open up the doors! Thanks so much for reporting to us about your views on the protocols (could not have been more positive!) and efforts for sharing experiences with Kuwait and other CCSVI researchers!

In case you would have any additional comments on the following statements?

confirms the association between ms and ccsvi.....surprise!
CTV News Article 9 April: >>CTV News has confirmed that Kuwait's minister of health has given interventional radiologists in the country the go-ahead to use the state-financed medical system to begin treating patients who have blocked veins and abnormal blood flow in their necks...
The procedure will not be performed to treat MS per se but to treat only "improper blood flow" in the veins. So we say this is a vascular problem in the neck. Patients, when you dilate the veins, they feel better. We don't have to talk about MS or the link to MS," said Sinan.<<

>>No stents were used in the procedures, a practice some doctors around the world have tried and one that Dr. Zamboni does not endorse.<<

=> This non-MS approach and general anti-stent policy does now not seem to reflect the protocols? Stating:
>>AIM & OBJECTIVE:
In Kuwait the MS patient is increasing and it is estimated about 3000 – 6000 patients. This program started in March. 2010, it is multidisciplinary approach, vascular diagnostic lab. doctor, vascular surgeon, and vascular intervention radiology, radiologist and neurologist.

Our objective to diagnose MS patient with Chronic cerebrospinal venous insufficiency (CCSVI) and to evaluate them with Duplex scanning and magnetic resonance venography and to evaluate clinical and or radiological improvement of these cases after treating them with angioplasty with or without stent of the diseased affected part of the internal jugular vein,

some clinical improvements great!
GREAT INDEED what is stated in addition to the improvements list Johnnybaby248 reported already from the link: http://www.ccsvikuwait.com/Details.aspx?d=4
>>THE RESULTS:
The angiography may stop MS progression, BUT it cannot
fix all symptoms, especially if axons have already been lost.
However, some symptom improvements (anecdotally reported) are
immediate, such as increased visual acuity and decreased (or
eliminated) brain fog, tinnitus, and fatigue.<<

SofiaK wrote:If veins stenose after 8 or 9 months of angioplasty, does a patient go back to his/her original MS state when diagnosis was made?
I'm confused about that.


Thank ypu.

JOhnnybaby248 wrote:Hey Dr. S as you have said the IRB has temporary shut you down So the question I have is

WHY have they ?

How many have you Liberated ?

Do you feel the Neurologist are at a point where they feel threatened by the fact that IR are taking there patients from them helping them ?

One other thing is this dr. Omar Khan, M.D. out of Wayne state university OMG for a Neurologist How can he possibly come out and say this

<shortened url>

Also can you Imagine Dr. Mark Haacke running into this guy in the hall ways of Wayne State University Lol

Dr. S keep up the good work Remember you are the Light in A deep dark tunnel we have all been following to reach the exit Please dont let anyone put your light out.

Donnchadh wrote:Dr. Scalfani,

What is the rate of re-stenosis in the patients you have treated? What has been the time interval between the procedure and the return of stenosis?

When would you consider using stents on patients who have re-stenosis?

Thanks!

Donnchadh

JOhnnybaby248 wrote:HeY Dr. S

Can you Please give us Your Opinion on this ?

The impact of CCSVI on the different neuro-physiological parameters has not been fully estimated, but the intriguing case here reported suggests that it may be greater than previously assumed. " April 29, 2010 Angiology.
http://www.ncbi.nlm.nih.gov/pubmed/20351675



Dr. S Any news about Zamboni's Sardinia conference today? Did he talk about the cluster of Sardinian kids he found (and published 1990's) had bilateral jugular stenosis, He said that 95% of them now have MS. I'd love to see that published.

Can you comment on this Dr. S

Thanks Dr. S

Moom9335 wrote:Has Dr. Sclafani made any comment on Rici's case?
Has he encountered this "valve" issue in any of his MS patients or ablated such?

Johnnymac wrote:Hey Dr. The IR I took my wife to insists that he believes her jugular veins are normal and no different than his because of an absence of a fixed stenosis. There was an MRV done and basic Ultrasound, both of which showed narrowing. His position comes from the fact Valsalva effectively dilated her veins back to the normal range.

He says, "without a "fixed" or unchanging narrowing I cannot fathom how her Internal Jugular veins would contribute to her MS. Size measurements, changes with posture and other maneuvers may somehow relate to venous problems and CCSVI, but I just don't see an obvious relationship in the absence of a fixed stenosis that could generate increased venous pressures."

If you were me how would you respond to that in a positive way to encourage him to move forward with a venogram?

If I sent you his contact information would you be willing to contact him and discuss CCSVI? We're on your waiting list, but if we can get treated locally it is of course what we would prefer. However, we want a Dr who is on-board with CCSVI, otherwise I worry the venogram may not be done properly or the right things may not be looked for.