This Is MS Multiple Sclerosis Community: Knowledge & Support

I wouldnt put the saint word between quotes if i was you.

Have a perfect rest doctor...

God Bless

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Hi Sclafani!

Its your first international patient from Denmark: Marie Louise!

Good to see you on this forum

I startet a website with my continuing journey to open the flow in my veins.

Check it out on : http://www.123hjemmeside.dk/flowoflife/33538709

Thanks for enlightening us with your expertise!

Marie Louise

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!!!!

Greetings Dr. Sclafani. Here I am at two weeks post surgery. I am seeing small improvements daily . But I desperately need a good script for physical therapy i think this is going to be highly important as you follow all your patients in your new research mode. It will also aid in the edss changes that the neuros will be looking for. I still have cold feet and hands aportion of the day but not all day. My brain is clearing and clicking better each day. I am walking better off and on but slowly longer distances unaided. Ie not holding on to anyone or wall etc. I have a stong pressure on my neck when I lean back in bed and my head gets flushed and my legs get colder and stiffer numb. Alleveates when moving. Unquestionably still some drainage issue of some type. I will be interested to to follow up checkup. I think there is still something there. I am delighted to see you still enthused even with all all the adverse crap. In the end you will help a ton of people who are desperately searching for a proponent. It sucks when every doctor (you excluded) either acts like you"re dellusion or retarded and quickly tries to brush you out of the office so they can bill the next poor sap. Your own neurologist suggested i wear socks for my cold feet and that is certainly not the first time I've heard that. I 've been to the supposed best at Penn and cooper and wasn't impressed. With you I'm impressed. Unquestionably the "cautious cowboy" needs to return to the saddle as the more of these procedures you do the better you'll get, the more improvements and new methods of finding answers and treating problems will occur and be established for your arsenal. Go get'em tiger. We're your biggest fans! Thank you! Oh by the way haven't you noticed in general that our type of patient is rather differen tthan the average population personality wise?

Good Morning Dr. S, hope you got a good nights rest. You are truly amazing, taking the time out of your busy schedule to educate/enlighten us about so much. I Thank you from the bottom of my heart.

My question is, What is your views on Acupuncture and Message in relation to the possability of improving venous blood flow? I noticed somewhere you mentioned "circulation", I am doing IBT (inclined bed therapy for about 3 months now, and I am definitely feeling a difference.

I have not been tested yet for CCSVI, and imagine it is unlikely ( because of my location) that I will be lucky enough to be liberated anytime soon. However, I do not want to sit idle and do nothing to help improve my bodies disability from the havoc that my MS (RRMSx10yrs..SPx2yrs) has inflicted upon me.

Meantime, I would be interested in your views on the above and very greatful for your comments or suggestions in anyway, to help me, help myself.

Thank you, for being YOU
GOD BLESS .......

Girlgeek, I was Dr. Sclafani's first on Dec 29th - the first "liberation" on the East Coast.

He's quite modest. He's no "saint", he's a rock star!!!!

Not that it will feel the same, but thanks.. I am sure his family would wish someone to pass it on, if (and I am certain they would want to) knew.

Dr. S - I think you are describing one of the differences between urgent, critical care and the care of the chronically ill.

While emergency medicine is often seen as the "sexy" kind of medicine to practice, where life or death literally hangs in the balance and in your hands, there is something very meaningful about the ongoing relationships and discourse that occur between the chronically ill and their physicians, especially in this day and age of patient empowerment and autonomy where we are more knowledgeable, educated, and insistent on being partners with our doctors. Our doctors often know more about us than our family members.

With CCSVI, it is a wonderful marriage between the chronic care relationship but now adding the potential sense of fufillment and excitement gained by the acute care model because now there is the potential to literally change our lives dramatically in just a few short hours. And talk to us about it afterwards.

And before if the 39 pages before this one has taught us anything.

Indeed

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.

Dear Dr. Sclafani,

My girlfriend was diagnosed with a left jugular vein stenosis by MRI. As in another thread there is an article pointing that to turn the head to the left will close this vein, the question is:

Is it better for her to sleep with the head turned to the left to close completely the vein?, or is it better instead to keep the head straight to keep the vein half-opened? What is expected to produce less reflux?

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Hello Dr. Sclafani,

Further to your tracking trial plans, I have asked my fysiotherapist which test she uses to score me before my Liberation Treatment.

She has thus set a so called 0-measurement, and is planning to do a monthly follow up to report improvements after the procedure.

- Berg Balance Scale
- 2 minute timed walking test (depending from the walking ability from the patient you could also prefer the 6 minute timed walking test)
- Nothingham extended ADL
- 10 metres timed walking test
- Functional ambulation categories
- Timed –up and go test
- Action Research arm test
- Sit to stand
- Motricity index or hand held dynamometry

Thought this might be of help to you.

Regards,
Inge

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

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Mitch
Please visit my blog at www.enjoyingtheride.com

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Superstar
Saint
Rock star
Luminary
Leader
Hero
Healer
Teacher
Friend.

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