DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby drsclafani » Sun Apr 25, 2010 5:55 am

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?


as i said earlier this morning, get a second opinion. TCC is just one component of the ultrasound. Make sure you didnt just get a TCC. Ask the doctor who interpreted it how many he has done and whether he read dr z's paper on the ultrasound. Also Marian simka has a nice treatise, unpublished, floating around the internet that is helpful to those who have little experience with this.

reflux in the vertebral vein bothers me. , just do not know what to do about it yet
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Re: An easy question

Postby costumenastional » Sun Apr 25, 2010 5:57 am

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.



No way! My dear neuro told me that i have tinnitus because i listen to loud music :) I guess trance lovers are all experiencing this stupid thing.
The fact that it started after my first relapse and 5 days of solymedrol had nothing to do with it of course. Another just told me "yes, you may well become deaf from MS".
Same goes for the black spots i ve been seing in both my eyes after my optic neuritis. No MS related. We all see black spots occasionaly was their expanation...Again, the fact that it started right after my left eye went blind is just another coincidence.

Dear Doctor Sclafani, it is so obvious what we are dealing with here...
And it is ridiculous that having a real doctor to explain stuff everyone should know, comes as such a surprise. But i ll take what i can get and hope you ll stick around cause for most of us, having the chance to really learn is phenomenal and beyond our expectations.

Thank you.
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Postby JOhnnybaby248 » Sun Apr 25, 2010 6:03 am

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!!


Hey thanks for the info

In regards to the avatar I just wanted to show how frustrated I am...... Can You believe they have found something so Astonishing in CCSVI yet they want to put it on the back shelf

In 1952, an American medical researcher named Jonas Salk became the very first person to discover the cure for polio. In April 1955, he announced the medicine, which is basically made up of an injected dose of dead or inactivated polio virus.

MARK MY WORDS Dr. Z & Dr.S and there Calibrators WILL go down in the HISTORY BOOKS!!!!!!!!!


Keep up the Great work Dr. S
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Postby drsclafani » Sun Apr 25, 2010 6:05 am

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.<<


I think that this is a bit disingenuous. I have used the argument, but it doesnt stand up to scrutiny by serious concerned doctors who are skeptical. If nearly 100% of patients with ccsvi have ms, then there is a link to ms.
To say that we are not treating ms is ok, but to say we do not need to talk about ms WILL NOT FLY. What reason would one get tested for ccsvi if it were not for ms.

please do not shoot this messenger. This is something we have to face.

>>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,


they are saying that they do not have intent to treat with stents, if i can interpret. they are not going to tie themselves up by saying never. it might be necessary for patient care of a patient. for the group there is no intention to treat with stents.


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.<<


you see the slip of the tongue.... "may stop MS progression" we cannot have it both ways.

i want to say, that it is too early to determine whether it can fix all symptoms.......too early to say this
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Postby drsclafani » Sun Apr 25, 2010 6:09 am

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.


all of Zamboni's patients who had relases had restenosis, but not all patients who had restenosis have had relapses.

As we all know, the manifestations of ms are protean. is it ever the same?
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Postby JOhnnybaby248 » Sun Apr 25, 2010 6:12 am

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
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Postby drsclafani » Sun Apr 25, 2010 6:23 am

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 ?


the IRB did not shut me down. The hospital wanted to pause and put this under IRB oversite because it was concerned that its reputation would be damaged or the state department of health would close it if i had a complication like mike dake had and it got into the wall street journal. I really cannot argue with the logic. The hospital has to care for an enormous number of patients with no other place to go for care. Getting shut down for doing "research" without IRB oversite would have been a very ugly black eye. Please understand, that our intention all along was to start as individual cases of compassionate care leading to IRB trials.

How many have you Liberated ?


about 20. slightly less than i wanted before going to IRB

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>


hard to say what the naysayers are saying. Some seem maliciously unhelpful. others are just cautious caring doctors trying to understand a pathophysiological theory that is foreign

Dr. Khan strikes me as ......nevermind

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


running away is more like it

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. :lol: :lol: :lol: :lol:


it just aint gonna happen
remember i was a very imressionable kid when john kennedy was president. I took his altruism speeches very seriously
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Postby drsclafani » Sun Apr 25, 2010 6:26 am

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


donnachadh

too early to say. most of my patients have not reached the time when Zamboni says restenosis is likely to occur.
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RICI

Postby Moom9335 » Sun Apr 25, 2010 6:27 am

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?
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Postby drsclafani » Sun Apr 25, 2010 6:45 am

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


this paper showed that transcranial magnetic stimulation studies paralled clinical response of ccsvi treatment in a single patient who was liberated during an acute exacerbation of MS. Dr. Z was calling for further evaluationof transcranial magnetic stimulation as a way to measure responses

thanks for giving me a headsup about where paolo will be this today. you are the scouts, but i dont have more time to follow it up. if you find some link (in english) i will listen and report to you
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Re: RICI

Postby drsclafani » Sun Apr 25, 2010 6:47 am

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?


i think i have mentioned it a couple of times. His sad experience seems at odds with that of others. I am wondering what the difference is. perhaps he has a confounding variable
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Postby Johnnymac » Sun Apr 25, 2010 6:47 am

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.
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Postby Loobie » Sun Apr 25, 2010 6:49 am

Dr. S.
I have sent a few your way who you've met with before your 'pause' and thank you so much for staying in touch with us patients. I was an early Stanford stentee that is doing well, but I copied and pasted your last passage to 3 of my friends who have appointments with you in the coming months (John from Binghamptom I think you met and two others). Thank you for being you and having that spirit that you have. When I picture a Dr. in my mind's eye, I now see Dr. Sal. Your last sentence about taking Kennedy's speeches to heart kind of says it all.
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Postby drsclafani » Sun Apr 25, 2010 6:51 am

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.


i will answer this privately
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Postby Nunzio » Sun Apr 25, 2010 6:57 am

Let me see if I am now an expert in Color doppler analysis.
If you click on this URL will open the image of my left Jugular vein in sitting up position. http://my.opera.com/npsossi/albums/showpic.dml?album=2951711&picture=41114021
(sorry, I couldn't figure out how to post the picture here)
Keep in mind that my right jugular vein is stenotic from lack of flow from the brain. The vein is enlarged and the only correct flow is the sliver of blue seen in the picture. Even more telling is the spectral analysis which shows waves above the zero line almost as much as below the line. No change in the supine position in size or flow.
My diagnose is: severe reflux in the only functional jugular vein.
Thanks Dr. Sclafani for your expert opinion and for giving us your valuable time.
P.S. Can anybody PM me how to post pictures?
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