DrSclafani answers some questions

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

Postby drsclafani » Mon Jul 19, 2010 8:16 pm

Rokkit wrote:This symposium is fantastic. I can't wait to hear how it's been going in Kuwait. Every speaker is absolutely exciting. Too bad those extra 50 seats can't be filled with neurologists. I wish it could be broadcast live over the web, at least the audio. Excellent job, Dr. Sclafani. Your time on the sideline has enabled you to organize an enormously important event.


Firstly, please note it was free. Lots of MDs were surprised
Second, the entire day is being filmed and recorded. Possibly not live broadcast but we will figure out how to deal with this
third. there are quite a few neurologists attending even though the event was planned to improved knowledge of the liberators
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Postby drsclafani » Mon Jul 19, 2010 8:23 pm

vivavie wrote:
As for your question about follow up: Drs here including GP and neuro are afraid they will lose their licence if they get involve. So basically until I get sick enough to go wait 48hrs at the emergency room, no follow up is possible.


criminal to care for your body. incomprehensible!

Because of my father (retired in May) I was able to get a Doppler (which I sent you last week). The technician said it looks good!?!?? When I mentionned your symposium his answer was: "we do the test better here and we don't get the same results as Zamboni". Isn't that something!!!! We are a banana republic...

"better equals less diagnoses"....back on the pharm thats the way we do it

I am still searching for your clone in Qc!


have you looked in jail?
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Re: Symposium Publicity

Postby drsclafani » Mon Jul 19, 2010 8:33 pm

MS_HOPE wrote:Dr. Sclafani, I'd posted information about your symposium (for medical professionals) as one of the comments to the NY Times article, but after it appeared, it was taken off. I assumed you or your staff had requested that it be removed, possibly because of concerns about a potential over-response and crowding.

At this point it's unlikely to get many, if any, reads, but would it be OK if I or someone else posted it again? (I understand you still have 50 or so available seats?) Thanks.


please do spread the word. the more physicians and professionals who learn, the better chance liberation has as an option.

actually no one asked to remove information about this symposium.

When last I spoke to a medical reporter, i was told that they thought it was very important to avoid being seen as encouraging a new technique that is not yet proven.

But there sure was a big buzz on new possible diagnostic tests for alzheimers. front page, as opposed to ccsvi

conspiracy? i dont care, i just keep moving forward
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Postby drsclafani » Mon Jul 19, 2010 8:34 pm

bestadmom wrote:The CCSVI Alliance is hoping to tape the event and use segments for our website.

Thanks Cece - now my "cover" is blown, not that I've got anything to hide!


bestadmom....the next rock star!
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Postby drsclafani » Mon Jul 19, 2010 8:38 pm

drsclafani wrote:
Trish317 wrote:
drsclafani wrote:
Rompers wrote:Dr. Sclafani, may I inquire as to who may be on you invite list? Not by name but generally speaking. I am also curious to know if your invitations are being extended to other countries, and especially your neighbouring Canadian Neurologists/IRAs/VSs? Or is this a specific "think tank"?

And as Donnchadh suggested, I too would like to forward the symposium details if you will provide the "OK".

Please accept my thanks for all of your caring and efforts, as you are helping us all to keep "hope" alive and kicking!

Rhonda


look, this is a very short notice thing. I did not invite a tenth of those who might be interested.

For the next ten days, i am looking for more doctors who are intersted or thinking about this subject. please do use your advocacy to share the word. I actually injoy your empowerment


Hi Dr. S,

I've shared the information regarding your symposium with two vascular surgeons I've been corresponding with (one at Rhode Island Hospital and the other at the University of Iowa), and the nurse of a very prominent vascular surgeon (if you'd like names, I'll send them offline) but I wasn't sure if it was ok to do so after I read this on Facebook....

This event is not open to the public. The auditorium has limited seating and IR's in the NY tri-state area and select neurologists were invited by email directly by Dr. Sclafani, and there is room for more to attend. The subject matter is targeted to IR's and MS neurologists. Attendees must rsvp and be registered. The media is invited. Wheelchair Kamikaze will video tape the symposium for the CCSVI Alliance website. If there is room, patients will be invited.

She seemed to have "inside" information. So, I'm happy to know that it's alright to "share the word".

Thank you for everything you do, Dr. S. That can not be said often enough.


the university is legitimately concerned about a surge of interest that exceeds the occupancy. please tell those physicians who would like to attend that they must reserve space by emailing requests for reservations to ccsviSymposium@gmail.com



THERE IS QUITE A BIT OF ROOM LEFT. FILLING THE ROOM WILL SHOW THAT INTEREST IS HIGH AND THAT THIS IS SERIOUS.

WE CAN ACCOMODATE ABOUT 75 MORE GUESTS
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Re: those dang deltas flow again

Postby drsclafani » Mon Jul 19, 2010 8:44 pm

JohnJoseph wrote:1eye, I feel I need to join you in questioning the physics behind the flow variation through the IJVs.
We all have learned here what the normal variation to expect in a healthy person is - but what is the hydraulic reasoning behind?
In fact this is what has caught me about CCSVI - the HYDRAULICS of it: If it is "just" a mechanical problem in a hydraulic system of drainage tubes and valves, so there should be a good chance of fixing it by a suitable "plumbing" !
Dear Doc, would you have any nutritive comments on the physics of this flow variation phenomena in IJVs?
Few of us here could possibly sleep better then...

Thanks once more, all the best for the symposium
JJ


thanks for the encouragement.

fluid dynamics are not my cup of tea
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Re: WARNING

Postby drsclafani » Mon Jul 19, 2010 8:51 pm

LG
i appear to have been quoted, but that is clearly not my writing. There are spelling nuances that are clearly not mine.

for the record, MRV does not expose anyone to radiation.

You have to be careful whom you go to for testing and for treatments. Many people are starting up, and there has not yet been a conference in the US (until next week). There is no book, no video course, nothing. You have to understand that we are in an age of discovery and we are discovering lots of mistakes along the way.
i just do not want to be quoted for mistakes.....that is why i joined up here in the first place: to reduce mistakes and misconceptions

LadyGazelle wrote:
Lady Gazelle in red:

***Please save all of us time*** (and yourself) and tell us EXACTLY what the testing prescription MUST include.

Cece:
I don't think he wants to be in a position where people are going back to their doctors and IRs and saying, "Dr. Sclafani on the internet says...."

Besides possible offense to your doctor, I worry that he'll put himself at risk of legal liability here somehow.

He may well be able to answer this request for what the correct testing prescription must include. But I think this could be found also within Dr. Zamboni's research? He must have spelled out how he did the transcranial doppler? I can find a link if it would help.


BELOW IS SOMETHING I had found earlier from Dr. Sclafani:

Regarding the "pre-liberation" tests: There are pros and cons for each kind.

The doppler is non-invasive and cheap, but it MUST be done by someone who is properly trained. What it will show is where blood flow goes (or doesn't go). It's not great for pinpointing the location of blockages in the jugulars, and it can't look at the azygos vein at all.

The MRV looks for blockages in both the jugulars and the azygos, but won't find the telltale reflux or backflow of blood. That's an important distinction since some people don't have blockages -- but they do have problems with a valve in a vein or with a flap within a vein that causes reflux. And since it exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram.

So, which ever way you go, be sure to deal with a doctor who understands the full significance of each test and what it will -- or can't -- show.

Another subtle but important point that's just come out this month is which side to insert the catheter to do the venagram. Most IRs choose the side that gives the straightest path. Zamboni says to use the other side since it is more likely to find problems -- precisely because it isn't a straight path. Remember, they're looking for kinks in veins, blockages and the more convoluted the path, the more likely they are to find a problem that would otherwise be missed.
If your doctor uses the wrong technique (which is still rapidly evolving), you'll just get a bill and no results!

Another example of why a doctor needs to be up-to-date about CCSVI is that the catheter may hold open a valve that is normally stuck shut, and then the problem gets missed. Or it may miss a flap that divides the vein (because it was threaded through one side of the flap).

For me, that would be completely devastating. For others, you may need treatment more than I do and it's worth the risk to get treated ASAP.

Since those of us who are rabid (and desperate) may actually know more about the finer points of CCSVI than our primary care physicians, having this kind of information is critical. Yes, angioplasties and stents have been around for decades and are considered quite safe. Just be sure you deal with a doctor who will do the necessary research so you get the best possible results.

So, Cece, I guess "I'm rabid and desperate" and missed that answer.

I need to be sure to get a Transcranial Color Doppler first, "And since it" (MRV) ''exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram."

Well, that would be ok for me if I knew beforehand that a TCD was absolutely necessary and insist on it when the technician told me it wasn't necessary. I just talked with the IR who said he wants me to go to Albany or someplace where they know what they're doing.

Can you understand my frustration? I called to get "rescheduled" for a Transcranial Color Doppler because the technician didn't follow the Rx from my PCP who is out of town all week.

That way, I will have the test done and send the CD to someone close to Rochester, New York requesting to be liberated!

I hope this post clarifies what others need to request from their doctors.

LadyGazelle :wink:
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Postby drsclafani » Mon Jul 19, 2010 8:55 pm

Renoandi wrote:Dear Dr. Sclafani,

I am sorry if this question has been asked elsewhere, but looking through all of the threads is hard for me.

I am wondering how CCSVI affects the spinal cord? Would the azagos vein be the reason with refulx and leaving iron deposits in the spinal cord.

I ask because all of my relapses have been due to spinal lesions. I understand how the refulx in the brain works, but have not seen anything really addressing the spinal or cervical cord.

Even in all the drug studies and trials they only look at the brain, which I don't understand. The spinal cord does a lot of damage in MS, yet I don't read or hear much about that.

Thank you for all you are doing to help get proper information out there,

Sincerely,
Andrea


andi
the theory of ccsvi postulates that there is resistance to drainage of the spine and brain. Luxuriant vicarious drainage (aaah, havent said it in a while) puts too much blood flow throught small veins in the spinal cord and brain. This leads to leakage or red blood cells and immune cells from those small blood vessels into the tissue. This in turn leads to demyelinization, iron deposits and damage to brain and spine.
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WARNING

Postby LadyGazelle » Mon Jul 19, 2010 9:20 pm

"And since it" (MRV) ''exposes the patient to radiation, some doctors say that there's no point in doing an MRV - just go to the venagram."


There is NO RADIATION in an MRV - It's Magnetic Resonance Imaging of the veins. I never caught that, but someone else did. I hate to appear stupid and pathetic, but that's how alone I feel in my pursuit of my liberation.

I received a response from the IR who "didn't know how to read the MRV to meet my needs". Why wasn't I told before they charged Medicaid? Why didn't they use contrast dye with the MRV? Then he said he recommended I go to Albany or someplace else where they are experienced with the procedure!

The same for the doppler! Why didn't they do a Transcranial Color Doppler as my PCP ordered? My next move will be to get the TCD completed as prescribed (THEIR mistake) and copied to a CD to send to either Albany or Buffalo and wait for a response.

I feel mildly defeated, but after over 40 years living with this disease, a few more months won't kill me. Does anyone know how to request travel expense "donations" and possibly medical expenses in case Medicaid refuses to pay for any more tests and the procedure?

LadyGazelle
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WARNING

Postby LadyGazelle » Mon Jul 19, 2010 10:33 pm

Thank you Doctor for your TIMELY reply. I will bring a copy to my TCD test that will be rescheduled.

DOPPLER DIAGNOSTIC OF CCSVI IF TWO OF FOLLOWING PRESENT
1. REFLUX IN IJV OR VERTEBRALS
2. NO FLOW IN JUGULAR
3. REFLUX IN DEEP CEREBRAL VEINS
4. CSA SUPINE MINUS CSA SITTING IS NEGATIVE NUMBER
5. BMODE SHOWS STENOSIS, WEBS, ABNORMAL VALVES ETC

I know I have (#1) reflux in both jugulars and abnormal (#5) inverted valves, but the veins are patent. The rate of flow was nearly the same in (#4) supine and sitting but the CSA is yet to be determined. The TCD will determine the condition of the (#3) deep cerebral veins but so far (#1) and (#5) look like I have two of the conditions for CCSVI.

Will the TCD show that the questionable "artifact" is truly inverted valves? (That's why an MRV was recommended after the doppler.)

If this is the first time they have ever been approached about CCSVI, why aren't they interested in learning what they don't know? If your teacher doesn't know anything about current events and chooses not to learn, what does that tell you about his/her other lessons? It's not hard to imagine :!:
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Postby Zeureka » Tue Jul 20, 2010 3:40 am

drsclafani wrote:I am glad for all who have shown improvements. Wonderful.

But going on with your life should include surveillance to assure that restenosis does not result in recurrence.

So can you tell me, how you are being tested for this

doppler? MRV? clinical examinations?

how often?

Who is following your progression?

Are you compliant with followup advice?

Thanks
I "stole" my question from another thread. Another feature of DrSclafani ASKS some questions.
As this is the larger thread, I wanted to ask those who have had liberation the above question.

Got angioplasty both jugulars in Poland end May. Searched for local follow-up and now finally found a Dr in Belgium. Got appointment for end September to do a doppler-check and lets see what other follow-up he then might propose. I understand he is a brave doctor that keeps himself updated and is open also to idea of other veins that could have impact. Otherwise once you're deblocked I'm on your list :wink:
But trust I can then finally relax a bit more with a specialised local doc...found also supportive neurologist, so might switch to get finally longterm a nice supportive positive team!

Dr Sclafani, what found amazing is that what you said about slow-flow in jugulars seems to match my case! :idea: At least for current situation after nearly 2 months: need to frankly say on long-term until now no improvements in hand/feet symptoms, but definitely seems that got a more long-term improvement on fatigue! Had no brain-fog spells and feel generally more awake/no fall-back periods with cloudy brain over the last 2-3 weeks! And had slow-flow in my jugulars due to valve problem...
Lets hope remains like this!
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Postby PCakes » Tue Jul 20, 2010 7:06 am

drsclafani wrote:....back on the pharm thats the way we do it

have you looked in jail?


You've got to love this man.. :lol: :lol:
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Postby Rokkit » Tue Jul 20, 2010 8:13 am

drsclafani wrote:THERE IS QUITE A BIT OF ROOM LEFT. FILLING THE ROOM WILL SHOW THAT INTEREST IS HIGH AND THAT THIS IS SERIOUS.

WE CAN ACCOMODATE ABOUT 75 MORE GUESTS

This is blowing my mind. What is wrong with this world? Heck, my wife and I will jump on a plane and fill two seats if it will help. I hadn't planned on it because I just couldn't bear the thought of taking up space a doctor could have used. Sheesh, this is frustrating.
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Postby CCSVIhusband » Tue Jul 20, 2010 9:27 am

I'm no fan of trying to get celebrities involved in CCSVI just for the cause ...

But I'm being serious when I say this. (though I think the guy is pretty much a stooge)

Motel finally posted on his website about CCSVI ...

I don't know if he lives in LA or NYC (I'm sure one of the two) ...

But we should see if someone could get him there to see it's for real for himself.

Someone post a link to his website and see if you can get him there.
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Postby nicknewf » Tue Jul 20, 2010 11:18 am

Think of all the celebrities who stump for the MS Societies. I think they would be disgusted to learn of the stonewalling.
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