This Is MS Multiple Sclerosis Knowledge & Support Community

drsclafani wrote:regretfully, i was stranded at the airport in new york this afternoon because of severe lightning and thunderstorms. My flight was postponed and i could not find a plane available to get me to toronto in time. i am very disappointed. i had a few things to say that needed blunt saying. hopefully another time

..everything happens for a reason??

Dear Dr Sclafani,
Will you have access to any transcipts/dialogue/outcome and, if so, at liberty to share?
Thank you Thank you!

drsclafani wrote:the basic playbook keeps being enhanced.

Thank you so much for such an excellent and detailed answer. I can't get that kind of detail out of doctors that I pay.

You are very special, and greatly appreciated. Lorna and I are looking forward to meeting you in July (the 11th and 12th, I think/hope).

Dr. Sclafani,

I am fascinated by the categorization of CCSVI by location of blockage. While nobody wants to have any of the types, type D (multi-level azygous and lumbar blockages) seems to be heavily correlated with PP (and thus, the diagnosis one would least want to receive).

1. Has this association held up in the sample population of patients that you have treated?

2. Is it possible that the upward venous drainage through the "intrarachidean" circle exacerbates lesion formation because of the constant turbulent flow of blood flowing against gravity (up-flow during cardiac systole, down-flow due to gravity during cardiac diastole, resulting in expression of surface adhesion molecules, etc.)?

3. IF (2.) is true, wouldn't it be wise for patients with type D CCSVI to sleep in a slight declining orientation (head below feet) in order to decrease turbulence during sleep?

4. Since type 4 CCSVI is characterized primarily by multiple azygous blockages, and angioplasty of the azygous has the greatest long-term patency, are you surprised by the lack of significance in QoL measurement for PPMS patients (I would have expected the best scores at the 18 mo. follow-up)? Do you have a hypothesis to explain this?

Thanks so much for your time, and forgive me for the misuse of any medical terms. I received my medical license from the University of Wikipedia.

Hi Dr. Sclafani,
I am excited to meet you in July and wanted to thank you for asking me to speak. I am humbled...

Quick question -- as you know, I'm looking at CCSVI and MS through the Ehlers-Danlos lens. It's taking me down some amazing paths.

Would you be able to use the IVUS to snip off a piece of a defective valve and remove it for some testing?

Thanks so much!
Diana Driscoll

jgalt2009 wrote:Dr. Sclafani,

I am fascinated by the categorization of CCSVI by location of blockage. While nobody wants to have any of the types, type D (multi-level azygous and lumbar blockages) seems to be heavily correlated with PP (and thus, the diagnosis one would least want to receive).

1. Has this association held up in the sample population of patients that you have treated?

No. I have found no pattern to be associated with any particular type of MS. This multilevel azygous and lumbar blockage pattern to be very uncommon. I am skeptical about multilevel azygous findinigs. I do most of my azygous imaging in deep inspiration. I do not see such findings very often. I think bilateral jugular stenosis is more common in PPMS than type 4.

when i perform azygous imaging during expiration i often find narrowing in the middle of the ascending azygous vein. On IVUS this seems to be phasic. I believe that the so called candy wrapper stenosis depends upon the phase of respiration. I do not treat it unless it is seen in all phases of respiration.

Lumbar hypoplasia seems very common among MSers of all types.

2. Is it possible that the upward venous drainage through the "intrarachidean" circle exacerbates lesion formation because of the constant turbulent flow of blood flowing against gravity (up-flow during cardiac systole, down-flow due to gravity during cardiac diastole, resulting in expression of surface adhesion molecules, etc.)?

it's possible. I have no opinion.

3. IF (2.) is true, wouldn't it be wise for patients with type D CCSVI to sleep in a slight declining orientation (head below feet) in order to decrease turbulence during sleep?

I dont know. I wouldnt recommend putting the head below the feet without proof of your conjecture.

4. Since type 4 CCSVI is characterized primarily by multiple azygous blockages, and angioplasty of the azygous has the greatest long-term patency, are you surprised by the lack of significance in QoL measurement for PPMS patients (I would have expected the best scores at the 18 mo. follow-up)? Do you have a hypothesis to explain this?

no
perhaps it's just a different disease that involves areas of the spine critically and that treatment of ccsvi has no effect on the spinal lesions. Also I do not think that you can make any meaningful conclusions about PPMS in Zamboni's paper, The patient numbers were far too few and the followup was far too short.

The more i treat this, the more I believe that i am not treating MS at all, but most of the time treating ccsvi.

Thanks so much for your time, and forgive me for the misuse of any medical terms. I received my medical license from the University of Wikipedia.

Well, professor of Wikipedic surgery: i am most impressed by your questions.

Nola wrote:Likewise to Icechick, the Crowne Plaza said to me back in May that all patient rooms were sold out for July 14 & 15. I did ask again, yesterday, and they confirmed this. If more rooms were available at a lower rate I think there would be happy people.

More important, I think if Dr. Sclafani took as much care of himself as he did of his lucky patients there would also be happy people. How can we help you be healthy?

i am pretty healthy, albeit overweight.

i am 65. take almost no medicines. Never take a day off from work for illness. My trainees never keep up with me. I sleep a little.

my secrets include refusing to be ill, a low salt mediteranean diet, a baby aspirin a day and a little statin in my life. Also i am fortunate to be a happy person.

thanks for your concerns.

DrDiana wrote:Hi Dr. Sclafani,
I am excited to meet you in July and wanted to thank you for asking me to speak. I am humbled...

Quick question -- as you know, I'm looking at CCSVI and MS through the Ehlers-Danlos lens. It's taking me down some amazing paths.

Would you be able to use the IVUS to snip off a piece of a defective valve and remove it for some testing?

Thanks so much!
Diana Driscoll

diana
keep up your good work. We share this interest in ehlers danlos. There was a patient who once visited here who showed a mrvenographic image that he thought showed venous stenosis but i thought was an artery. After some conversation, i suggested that he had ehlers danlos or some variant. advised him to get checked out, but he never returned to the site. If you are reading, please share the followup.

but i digress, sorry.
in order to snip off a bit of valvular tissue i would need a special instrument that i do not have. too bad!!! that would be great.

PCakes wrote:

drsclafani wrote:regretfully, i was stranded at the airport in new york this afternoon because of severe lightning and thunderstorms. My flight was postponed and i could not find a plane available to get me to toronto in time. i am very disappointed. i had a few things to say that needed blunt saying. hopefully another time

..everything happens for a reason??

Dear Dr Sclafani,
Will you have access to any transcipts/dialogue/outcome and, if so, at liberty to share?
Thank you Thank you!

pc, sadly, i do not. i did not think they would release them anyway.

Dr.S

Could CCSVI be a variant or a more subtle form of SVC syndrome?

Thank you for your clarification.

Dr. Sclafani,
I hope you are feeling better!
What would the symptoms of an occluded or thrombosed azygous be? Is upper back pain a symptom? Is a venogram the only way to detect a problem?
Also, is there any connection between CCSVI and Hashimoto's Thyroiditis?
Thanks!!

drsclafani wrote:

WeWillBeatMS wrote:Sorry you couldn't make it to Toronto. Take it as an opportunity to get some rest this weekend and recuperate.

So are you up to sharing what you found out about the positive CCSVI ultrasound last Friday morning and then no CCSVI on Saturday?

I was able to find out that none of the three neuros who slapped the MS label on me did a Lyme test. Wonderful! So I am going to be looking into that thanks to your suggestion.

WeWillBeatMS

now wouldnt that be a kick in the ass

llike everyone is telling me, i need to recuperate.

there are few procedures scheduled for the next couple of weeks for reasons i cannot explain. i will have some time to wonder why. perhaps everyone thinks that my waiting time is greater than it is.

While this part is unfortunate

i will use that time to put together your case for presentation.

This part has me listening.

drsclafani wrote:

More important, I think if Dr. Sclafani took as much care of himself as he did of his lucky patients there would also be happy people. How can we help you be healthy?

i am pretty healthy, albeit overweight.

i am 65. take almost no medicines. Never take a day off from work for illness. My trainees never keep up with me. I sleep a little.

my secrets include refusing to be ill, a low salt mediteranean diet, a baby aspirin a day and a little statin in my life. Also i am fortunate to be a happy person.

thanks for your concerns.

I tried refusing to be ill, my neuro called it denial, which in my case it was....

Your list looks good. We picked up on the "I sleep a little" with all the 1 a.m. drsclafani posts...but if you are fortunate enough to be a happy person, that goes a very long way.

munchkin wrote:Dr.S

Could CCSVI be a variant or a more subtle form of SVC syndrome?

Thank you for your clarification.

one could look at it that way.

SVC syndrome is a condition in which there is obstruction of the superior vena cava that leads to back up of blood draining the spine, brain, neck, and arms. Because the obstruction is so close to the heart, the target organ primarily is the heart with inadequate venous return and diminished cardiac output.

because the blood exiting the brain and spine is indirectly compromised, symmptoms can occur. For example, patients become beet red and their face swells. They have facial pressure. They can be mentally confused, lethargic etc.

Another difference is that the most common cause of this syndrome is tumor compressing the svc.

Dr.S

Thank you for taking time to answer our questions.

Please take care and stay healthy.

drsclafani wrote:The more i treat this, the more I believe that i am not treating MS at all, but most of the time treating ccsvi.

How do you untangle the two. If symptoms respond to CCSVI treatment, those were CCSVI symptoms? (And whatever does not respond, that is the MS?)