DrSclafani answers some questions

[drsclafani]

Dr. S - have you read "A Leg to Stand On" by Dr. Oliver Sacks? This is a remarkable book about his journey into being a patient and his reflections. An amazing book.

On p. 132, he writes:

“…I saw that one must oneself be a patient, and a patient among patients, that one must enter both the solitude and the community of patienthood, to have any real idea of what ‘being a patient’ means, to understand the immense complexity and depth of feelings, the resonances of the soul in every key – anguish, rage, courage, whatever – and the thoughts evoked, even in the simplest practical minds, because as a patient one’s experience forces one to think” .

Dr. Sclafani, I do believe that on some level you have entered into this "community of patienthood" that he describes. Smile

Thanks for teaching me.
i have met dr sacks and listened to him speak at a community center in greenwich village. he is a remarkable brilliant man. I have learned from him too.

My wife is a psychotherapist/analyst whose expertise is in empathic immersion. A follower of Heinz Kohut, she and her circle have taught me much about empathy and that has made me a better physician.

She has started to teach my incoming residents about empathy.

[drsclafani]

Bestadmom, on behalf of those who went after you, those who will in the future, thank you for your part in recruiting Dr. Sclafani to our cause. Sounds like it was a win-win proposition.

In my mind you are both our Rock Stars.

Remember, Rock Stars have a lot more fun than Saints

except at the Super Bowl

[drsclafani]

Wow, Dr. Sclafani, in the wee hours of the morning, or into the night... lol I think my question has gotten lost in the many, many posts. I have a page on facebook and since I am on your waiting list, I'm asked a lot of questions about you. The two most common, I can't answer:

When did you treat your first CCSVI patient?

About how many patients have you treated?
thanks!!!!

I began my journey in October when bestadmom, searching for someone to treat her, emailed me and 250 other IRs. By the end of December, having read quite a lot, developed strong interactions with several investigators and met with dr zamboni, I felt satisfied that i understood the concepts and could apply my considerable prior technical experiences to CCSVI. Thus i performed my first liberation just before the new year, although I have done jugular vein angioplasty starting many years ago.
Since 2010 began i have seen about 40 patients and completed 2-3 liberations each week while i worked on a system that could accomodate more patients, that could treat patients with dignity and compassion and that created a consensus among radiologists, neurologists, administrators, nurses technologists, clerical staff etc.

Not perfect yet, but satisfactory. We had to negotiate hotel rates, find pharmacists to deliver medications to hotels, find accessible restaurants, etc

I learned a great deal during this initial clinical operation with the intention always to go to IRB sponsored research once i felt comfortable. Each case was a learning experience as we found out that patients did not need to stay in the hospital, that coumadin sucks, that patients should not stay in manhattan or near the airport but close to my home, that IVUS is really valuable, and so much more.

My program suspension came at a time when I was really getting into a groove. I really felt like I could start to rock n roll (pun intended).

so i am taking the time to clarify and refine relationships, grease the wheels and start the research sooner than intended

[bestadmom]

Dr. S,

You rock and I roll. One day I'll walk (and dance, and run up and down stairs in high heels).

bestadmom, who better sell something today or I'll be unemployed

[drsclafani]

Dr. Sclafani, could you please give examples of possible congenital and non-congenital causes of CCSVI? Thank you very much.

congenital cause of ccsvi is congenital....that is something happened during development of the fetus that leadssjasmd120972 to abnormal development of the veins and their valves. An example of congenital venous abnormality includes Budd Chiari syndrome where the veins of the liver malform, Osler Weber Rendu syndrome (aka hereditary hemorrhagic telangectasis aka HHT) where the arteries and the veins of the lung are malformed. These are a few congenital malformations of blood vessels.

a non-congenital form of ccsvi is one that is acquired, not congenital. This could be an inflammatory stenoses that could happen after multiple catheteirzations of jugular veins needed for hemodialysis, or due to cancers that compress the veins.

These causes of ccsvi are not clearly connected to MS. Rather they result in other sequellae, too complicated to speak about now. i got to get to work some time today

[Perkele]

Hey Doc,

There seems to be connection between MS and hypermobility syndrome Ehler-Danlos. http://www.ncbi.nlm.nih.gov/pubmed/18208891

I have also heard many people with MS has complained about hypermobility.

Could it be possible that one cause of CCSVI is collagen deficit that affects the veins?

Greetings from Finland,
Perkele

[bluesky63]

Perkele, that was a question I had wondered about earlier as well. Very nice to see another person bring it up!

[Stacemeh]

Most importantly thank you so much for humouring me as I wander about in the land of theoretical plausibility, my gut feeling on this whole issue is that CCSVI will prove to be important but my scientific parts are so full of questions!

is it possible the same sort of metal sequestering is happening at a microscopic level in the cerebral venous vascular walls creating plaques/scars (which I think would render this stray iron harmless, other than the problems caused by the scars )?



Dr Sclafani wrote:
i do not think that the brain can do that. that iron in the walls is likely to be hemosiderin, a byproduct in the breakdown of hemoglobin and commonly seen in venous insufficiency.

No, I was not thinking the brain tissue itself could do that either – my neuro did tell me specifically that I needed to remember that my brain tissue itself is not damaged in all of this; it is just fine behind the scars.

I also noted that Dr Marie at the Winnipeg information meeting commented that RBCs had not been seen within MS lesions and I'm not sure but I don’t think the Prineas group noted them either,

According to the dominant theory of MS, when the researchers examined the hours-old lesion, they should have found the beginnings of an immune system attack.
But Prineas and Barnett noticed that the myelin in the lesion was still intact, and there was no evidence that the typical armada of immune system cells and molecules had moved into the area yet. Instead, oligodendrocytes cells, which produce the myelin, were dying. Myelin is, in fact, an extension of oligodendrocytes that wraps itself around nearby nerve fibers… Prineas et al

This leaves me wondering if it is theroretically possible that iron or hemosiderin is by unfortunate metabolic happenstance (or perhaps even occasional lysis) is being left behind by nutrient and oxygen depleted (perhaps damaged) refluxed RBCs where it could be absorbed by myelin and oligodendrocytes leading eventually to increased apoptosis and the body attempting to wall off this damage with scar formation (which would explain the inflammation and immune systems involvement)?

Thanks again and I hope you had a good sleep.

[cervin]

hi I wanted to write and thank you and Holly for being so available and awesome. I went to Poland and it is a two week turn around to get anyone to tell you anything. Dr. Sclefani, you answered my question immediately and Holly confirmed that i am on the waiting list the day after i mailed her my information. This kind of attention is so important for a person to feel safe and taken care of. Thank you. i look for forward to having you as my follow up doctor.

I also have a question regarding Iron build up. I know dr hackke (sp?) is no longer looking at MRV's. i had a blood test last week. results not in yet. I have read that iron deposits held in the organs won't show up on a blood test. Any suggestions?
Forgive me if you already covered this and feel free to tell me to go find it in the thread. Tenacity, I've got.

You should know that I sleep better at night knowing i get to meet you and have you as my Doc for CCSVI follow up. A thousand thank you's doesn't even get it.

-ceci

[cheerleader]

Hey Doc,

There seems to be connection between MS and hypermobility syndrome Ehler-Danlos. http://www.ncbi.nlm.nih.gov/pubmed/18208891

I have also heard many people with MS has complained about hypermobility.

Could it be possible that one cause of CCSVI is collagen deficit that affects the veins?

Greetings from Finland,
Perkele

Hi Perkele...not to interrupt the good doc, and he may probably has other insights, but I've written on this before, since my hubby's sister has Ehler Danlos, and in Bologna, Dr. Gabbiani discussed the switch from collagen I to III occurring in the IJV tissue of MS patients- from my notes in Bologna:

By red staining for collagen and using unpolarized and polarized light, he saw that there is less collagen 1 type fibers in the MS jugular vein tissue, and more collagen III fibers in MS. This is the exact opposite of the controls.

Connective tissue in MS switches from collagen I to collagen III and this takes place in the IJVs. This switch also happens in fibromatosis, colloids and hypertrophied scars, and this remodeling may play a role in CCSVI disturbances.

http://www.thisisms.com/ftopict-8105-ehler.html+danlos
cheer

[bretzke]

Could CCSVI be treated and researched as a "stand-alone" condition without any association to MS?

Identifying and treating CCSVI without trying to tie it to MS would move the focus away from neuro's to IR's and vascular surgeons where it belongs.

[newfie-girl]

Bretzke, I totally agree with your comment, I think this is the ONLY way to go, We have to get the RADIOLGISTS , and VASCULAR SUEGEONS on board our train. They can be independent in their research into CCSVI, after all, they are the guys that are going to bring this " Incredible Discovery" to the forefronts, and hopefully, we will finally get "LIBERATED", .

[Gordon]

I AGREE !!! We do not have MS we have a vascular problem that needs to be fixed

[1eye]

or we have reflux, trauma, congenital malformations, misplaced bone, and/or *unknown*, that causes both, or just CCSVI. whatever, man. but the CCSVI part of it (jugular or azygous or other cerebrospinal insufficiency) is and will always be, treatable. does not need any more study to treat. has been, is being, will be treated. thank you, doctors who do it today and ones who have already done it but have stopped or been stopped. it can likely be improved by further study (placebo not needed). maybe someday we'll know all or most of the possible causes. but i, and lots of other CCSVI victims, will settle for having, and by god will not settle for not having, the balloons and/or the stents, our veins liberated, as much as they can be, today. i am 56. i know how to read a contract. i can indemnify anybody as much as they need, with my signature. with the signatures of everyone in my immediate family. show me/them where to sign. i will pay you (within reason). not to act, when you know how... what would Hippocrates say?

[Peaches1]

Dr. Sclafani
I have a question for you - Is it normal and OK to have just one jugular vein? My MRV, from last wk, states "a tiny amount of flow in the left transverse/sigmoid sinus system. The images of hte neck demonstrate no significant flow in the left-sided jugular vein"
Thanks for the input and all that you are doing for this group.
Hugs from TX