This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Thu Jun 17, 2010 9:25 am**

Two things:

* I am delighted to send you my MRV report and doppler report for your trial. I would send you my discs but I don't know how to duplicate them. Stanford said they would charge me $80 for another set (there are four). I tried to copy them on my daughter's Macbook and it didn't work. Someone tell me how to copy them and anyone can have them. Bilateral upper and lower internal jugular stenosis following Dr. Dake's MRV protocol, severe on left, severe/moderate on right, collateral veins.

* I was BLOWN AWAY by this from Dr. Lorne Brandes:

"Indeed, a recently-published case report that included a literature review, summarizes what has been observed when one or both jugular veins in the neck are suddenly blocked off by a clot. They include increased intracranial (brain) pressure; headache; altered consciousness; lethargy; double vision; visual loss; and eye muscle (6th cranial nerve) weakness."

I have had those exact symptoms for years! That's been my "baseline" for so long, and every so often it gets acutely worse in waves that wash over me along with memory loss and inability to speak. WOW.

When I am having particularly bad episodes and I feel like my head is going to explode and I am terrified that I am losing time and I can't see and can't talk, doctors just nod distractedly and say, well, what do you expect, you have MS!

Sorry to jump into this thread with this. Let's see, can I make a question out of this. How about -- so is there a chance this can actually be fixed? So this maybe doesn't happen to my children or anyone else's?

Posted: **Thu Jun 17, 2010 9:25 am**

vivavie wrote:Your wish is my command!!!
Anything for you Doc! Just ask and you shall receive!

Your army is assembling Dr. S - or should I say General S.

I expect you'll have well over 100 people willing to participate before the weekend is over, probably much more.

Posted: **Thu Jun 17, 2010 9:43 am**

Dr. S.

Thanks for all of your work here. The Canadian government health research funding agency has called for clinic trial proposals from Canadians. Have you been in touch with any Canadian imaging/vascular/interventional radiology specialists to share your trial planning or to see if they can incorporate your work to date into a Canadian trial?

The call for proposals closes in August; and it sounds as if your experience negotiating with the IRB would be very helpful to those in Canada who are preparing to slog their way through.

Thanks again,
Nick

Posted: **Thu Jun 17, 2010 9:52 am**

drsclafani wrote: So i had an idea to do a study of the state of the imaging now.

i would define with paolo, an acceptable image set for each test.

then review studies that are volunteered by patients to see what the standard are

would people be willing to participate in this trial.

YES! I would love to help, if my intracranial venous malformations don't exclude me......

Did you have a chance to ask Dr. Zamboni about dural sinus malformations? I've been reading posts from MSers who have problems similar to mine, so your answer may help them, too.

Also, did you find any/many problems with the valve at the junction where the transverse sinus drains into the IJV?

Thank you very, very much!
~HappyPoet

Posted: **Thu Jun 17, 2010 10:17 am**

drsclafani wrote:Over the past couple of months, a number of patients have sent me CDs containing MRvenograms, ultrasounds and venograms, along with interpretations.

I have viewed many with dismay

I would say in general that the majority of the tests have been poor, inaccurate, inaccurately reported, and displayed in a substandard or incorrect way.

For example, ultrasounds that do not confrom to the ferrara recommendations and protocols.
for example a venogram of a normal left vertebral vein was reported as thrombosis of the jugular vein

So i had an idea to do a study of the state of the imaging now.

i would define with paolo, an acceptable image set for each test.

then review studies that are volunteered by patients to see what the standard are

would people be willing to participate in this trial.

I have CDs of head, neck and chest MRVs and Doppler ultrasound, along with reports that state I do not have CCSVI, from a local imaging facility. More than likely this is a false negative because, by comparison, I also participated in the Buffalo study and the Doppler study done there by a Zamboni trained technician was vastly different than the one I received at the commercial facility. During that test, the sonographer was training other doctors and seemingly guarded answers given to questions led me to believe I do indeed have a problem. No results were given to me however, as it's a blind study. I did write the commercial imaging facility a letter (after several unanswered phone messages) to express my concerns about the quality of testing I'd received and they finally responded to state they're standing pat over their procedures and the results. My quest for good imaging continues.

Please let me know where to send the copies, I will put them in the mail immediately.

arielmt
Buffalo, NY

P.S. I have been lurking and trying to follow this very long thread for some time now and have learned so much from you and all the participants. My thanks to you, Dr. Sclafani, for being an open-minded champion who truly cares about doing the right thing and knowing that learning never ends. We're so very lucky to have you on our side!

Posted: **Thu Jun 17, 2010 12:31 pm**

Hi Dr. Sclafani!

I mailed my MRI/MRv done at Northwest Medical Center, Tucson, AZ to your attention on April 24 after my appointment with you for May 12 was cancelled. Please include it in your study. It was supposed to have followed the Haacke protocol but I was the first done at this hospital. GEEZ--I hope to meet you soon!

e-hugs,
xcargrl

Posted: **Thu Jun 17, 2010 1:27 pm**

jfhcrgvr wrote:
Later today I will find out if the FSIR will meet with us to discuss performing venography. If he is willing to proceed, may I provide your name and contact info to him so that he may benefit from your practical experience thus far?

Assuming she undergoes the procedure locally and it is successful, I will then offer to support him in any way possible on an IRB effort. I'm happy to provide my PM address through Cheerleader.

Many thanks.

I know for a fact Dr S is open to this. You can find his info by googling his name & the hospital KingCounty Hospital. There are 2 Dr Salvatore Sclafanis. Make sure to give the info for the one in Radiology.

Posted: **Thu Jun 17, 2010 1:38 pm**

jfhcrgvr wrote:I was moved to tears (but then again, I cry for Hallmark greeting card commercials!) when I listened to your comments in Italy and heard you talk about deciding to postpone your retirement.

There was a quote from that speech...here it is: "In my 40 year career this is the best thing that has happened, in my entire career."

That puts this above the entire part of his career where he helped pioneer coil embolization techniques and received some measure of fame as the heroic Brooklyn doctor who saved a cop who would have died if he'd been taken to a different hospital.

NY Times article: <shortened url>

He's had a pretty amazing career....

Posted: **Thu Jun 17, 2010 1:52 pm**

Dr. Sclafani,
Count me in with those who appreciate all you’ve taught and done for us, and count me in as contributing to your imaging study too, as soon as I have it done.

As I’ve crammed for my ultimate exam in my study of CCSVI, I’ve noted the importance of correct scanning and interpretation, and have again seen that having PPMS and a 25 year history of symptoms are not in my favor. Typical of PP my problems include lower body mobility, spasticity, fatigue, headaches, etc. My headaches are always located at the base of my skull behind my ears, making me wonder about my IJVs. Is that the area where stents are used? Are correlations beginning to connect specific symptoms with location of blockage?

It sounds like the problems in PP are harder to find and diagnose, and so I keep looking for information that will point me to the best methods and interpreters before I get scanned. I’m trying to get scheduled with the Hubbard Foundation who use the Haacke protocols, and I’m wondering if their tests will be right for me. I also wonder if it would be better to have the procedure, if it’s indicated, with someone who could also do stents if need be.

So many things to figure out – so much of life to be lived! I’ve given up trying not to get my hopes up too high – after all, I’ve spent the last 20 years learning how to fall and with PPMS I know how to handle disappointment; I just want to see if I could handle liberation!

Thank you for the gift you’re giving to all of us who are still hoping.

Posted: **Thu Jun 17, 2010 2:36 pm**

I guess I do have a question. You mentioned gonadal veins, are they included in the grouping 'lumbar veins'? I am looking this up on wikipedia (http://en.wikipedia.org/wiki/Testicular_vein) and found the statement that the spermatic veins (aka gonadal veins) are provided with valves.

If they have valves, could they be malformed valves? And couldn't that be fixable? Or is this like the verts, where you can go into it with the cathether but it is too small to balloon?

Posted: **Thu Jun 17, 2010 3:04 pm**

thanks for the expression of support for this research idea.

but hold on to those images. This was just an idea. I will have to write an IRB protocol to do this research. They may be willing to exempt the study as retrospective and open label and voluntary, but I have to write it first.

s

Posted: **Thu Jun 17, 2010 3:21 pm**

drsclafani wrote:thanks for the expression of support for this research idea.

but hold on to those images. This was just an idea. I will have to write an IRB protocol to do this research. They may be willing to exempt the study as retrospective and open label and voluntary, but I have to write it first.

s

My daughter in college does research and I thought you didn't have to have IRB for studies that you don't do anything to the patient.

Posted: **Thu Jun 17, 2010 6:51 pm**

Dr Sclafani, perhaps something to pass along to your IRB? ;)

http://www.ccsvicalgary.org/wp-content/ ... -06-10.pdf

Posted: **Thu Jun 17, 2010 7:04 pm**

[quote=He's had a pretty amazing career....[/quote]

I just read the NY Times article. All I can say is WHAT AN AMAZING MAN!!

We are so lucky to have Dr. S. on our team!!

I continue to be in awe!!! Thanks again Dr. S.

Mum

Posted: **Thu Jun 17, 2010 7:10 pm**

QueenMum wrote:
He's had a pretty amazing career....[/quote wrote:
I just read the NY Times article. All I can say is WHAT AN AMAZING MAN!!

We are so lucky to have Dr. S. on our team!!

I continue to be in awe!!! Thanks again Dr. S.

Mum
Can you post a link to article?

This Is MS Multiple Sclerosis Knowledge & Support Community

DrSclafani answers some questions

Did I say 'small army' ?

Canadian Calls for Clinic Trials

Re: RESEARCH IDEA

Re: RESEARCH IDEA

Re: RESEARCH IDEA

Re: RESEARCH IDEA

THANKS FOR YOUR SUPPORT

Re: THANKS FOR YOUR SUPPORT

Re: RESEARCH IDEA

Re: RESEARCH IDEA