DrSclafani answers some questions

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

Postby Lyon » Mon Dec 20, 2010 6:03 pm

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Last edited by Lyon on Sun Nov 20, 2011 4:59 pm, edited 1 time in total.
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Re: Naysayer question

Postby prairiegirl » Mon Dec 20, 2010 6:40 pm

drsclafani wrote:
MarkW wrote:What a loaded question..............MarkW


no, malden is the one who is loaded


:lol: !
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Re: Naysayer question

Postby Cece » Mon Dec 20, 2010 7:32 pm

prairiegirl wrote:
drsclafani wrote:
MarkW wrote:What a loaded question..............MarkW


no, malden is the one who is loaded


:lol: !

More fun to be loaded than overloaded :)

Yes, I am amused that lifting the arms over the head turned out to be of no significance in terms of blood flow.
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Postby 1eye » Mon Dec 20, 2010 8:19 pm

Cece wrote:Yes, I am amused that lifting the arms over the head turned out to be of no significance in terms of blood flow.


There *was* a paper that said that position makes a difference to reflux, which makes sense. Is there any position which is especially prone to reflux?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby malden » Tue Dec 21, 2010 10:19 am

drsclafani wrote:
Malden wrote:
Cece wrote:He said one day that he is toxically overextended until Christmas. Toxically!


I was toxically overextended last nigh too, celebrating the birth of my niece ;)

Salute!


if she was named sally, then i'll tip one for the girl too!


Sally? No, why Sally? She was named Luna!

Guarda che luna
Fred Buscaglione

Guarda che luna, guarda che mare,
da questa notte senza te dovrò restare
folle d'amore vorrei morire
mentre la luna di lassù mi sta a guardare.

Resta soltanto tutto il rimpianto
perché ho peccato nel desiderarti tanto
ora son solo a ricordare e vorrei poterti dire
guarda che luna, guarda che mare!

Ma guarda che luna, guarda che mare,
in questa notte senza te vorrei morire
perché son solo a ricordare e vorrei poterti dire
guarda che luna, guarda che mare!
Guarda che luna, guarda che mare! Che luna!
malden
 

Postby Cece » Tue Dec 21, 2010 10:21 am

It was a play on "Sal", as in Salvatore Sclafani.... :)
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Postby drsclafani » Tue Dec 21, 2010 5:10 pm

Cece wrote:It was a play on "Sal", as in Salvatore Sclafani.... :)


malden, you were way too toxed out, are you sober yet :D
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Postby drsclafani » Tue Dec 21, 2010 5:40 pm

i am a closet skeptic. I have reserved full enthusiasm from day one when the bestadmom invited me to jump in the pool with the MS crowd.

I have remained a skeptic, hoping that this will work but having a jaundiced eye from the beginning. I have seem miraculous improvements and many disappointments. Today i heard from three patients treated recently, two after my inquiry to them. It helped me smell the coffee.

"things are so so." "well, actually people tell me my wandering eye no longer wanders and people note how i look them straight in the eye now"

"O, by the way, my purple feet are now completely gone "

"funny, how i now move around when sleeping instead of lying there like a log"

At my age, i am hungry for the miracle. i am impatient to the subtle changes. I want overwhelming evidence.

But such is this disease..it is measured in decades. and in incremental loss

subtle changes dont excite me...but perhaps they do excite someone with only strength in the neck muscles that drives her chair.

today taught me the meaning of patience
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Postby soapdiva884 » Tue Dec 21, 2010 9:16 pm

drsclafani wrote:i am a closet skeptic. I have reserved full enthusiasm from day one when the bestadmom invited me to jump in the pool with the MS crowd.

I have remained a skeptic, hoping that this will work but having a jaundiced eye from the beginning. I have seem miraculous improvements and many disappointments. Today i heard from three patients treated recently, two after my inquiry to them. It helped me smell the coffee.

"things are so so." "well, actually people tell me my wandering eye no longer wanders and people note how i look them straight in the eye now"

"O, by the way, my purple feet are now completely gone "

"funny, how i now move around when sleeping instead of lying there like a log"

At my age, i am hungry for the miracle. i am impatient to the subtle changes. I want overwhelming evidence.

But such is this disease..it is measured in decades. and in incremental loss

subtle changes dont excite me...but perhaps they do excite someone with only strength in the neck muscles that drives her chair.

today taught me the meaning of patience


Glad you smelled the coffee today. Bless you for what your doing, you mean the world to John and I.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Cece » Tue Dec 21, 2010 9:21 pm

"patience my doctor" ??

drsclafani wrote:But such is this disease..it is measured in decades. and in incremental loss

It is an awful disease.

I told my husband yesterday that I already had the miracle. (He did not understand, I had to explain. He has not been hanging out here and hearing people describe being in a wheelchair already and now starting to lose the use of their hands. It is hard to hear.) I already have the miracle, I am hoping to hold onto it.

Subtle changes for the better. In a progressive neurodegenerative disease? Yes, that is exciting, especially if it puts time now on our side (with gradual improvements over time) as opposed to it being always against us.
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Postby pklittle » Tue Dec 21, 2010 9:55 pm

."O, by the way, my purple feet are now completely gone "


I have heard of purple feet becoming pink and warm, but never have i heard of them disappearing! lol

Dr Sclafani, i hope smelling the coffee did not cause you to loose any of your enthusiasum. :)
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Postby drsclafani » Wed Dec 22, 2010 7:00 am

pklittle wrote:
."O, by the way, my purple feet are now completely gone "


I have heard of purple feet becoming pink and warm, but never have i heard of them disappearing! lol

Dr Sclafani, i hope smelling the coffee did not cause you to loose any of your enthusiasum. :)


yes, i am worried about a malpractice action. poor man has no feet. we are unsure whether they were stolen or just evaporated.

thank goodness he has a chair
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Postby prairiegirl » Wed Dec 22, 2010 10:07 am

Dr Sclafani, i hope smelling the coffee did not cause you to loose any of your enthusiasum. :)[/quote]

yes, i am worried about a malpractice action. poor man has no feet. we are unsure whether they were stolen or just evaporated.

thank goodness he has a chair[/quote]

Well, at least the coffee did not cause you to lose your humour by the looks of things... :lol:
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Postby AlmostClever » Wed Dec 22, 2010 3:34 pm

Dr. Sclafani,

I had a venogram today which revealed my right IJV is completely occluded.

This vein was open a month ago, but the treating doctor could not get the wire through this time.

Any suggestions on how to treat a completely occluded vein like this one that was open a month ago?

Thanks for your help!

AlmostClever
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby LisaAnn » Wed Dec 22, 2010 6:00 pm

Hi Dr. Sclafani,

I too have considered calling a lawyer as my purple feet have almost completely disappeared!! About 80%! I have also lost the icy cold in my legs and feet!

Just when I thought my improvements had peaked or plateaued, I accidentally discovered yesterday that I could move my left hand. I was just about to bang my hand on my wheelchair when I had a fleeting thought to just raise my hand and low and behold, my hand moved! I haven't been able to voluntarily move my hands or fingers for over two years. Later that evening I was able to move both hands. It's not a large movement and it takes a great deal of effort but you can actually see the movement in my fingers, hands and arm muscles. I thought it was just a fluke but I am still able to move my hands today.
I guess time will tell if this is significant or not. It was definitely a surprise as I was focusing on trying to move my feet!

I haven't seen any one else report this but since the treatment I am physically hungry almost everyday. Normally I don't get hungry and have been eating about the same amount for a few years. Now I am hungry within two hours of eating. My appetite has not changed but feeling hungry every day is very strange for me. This started about two days after the procedure so it must be related.

No real questions here! Just wanted to give a quick update!

Keep up the healthy skepticism! We all need it. Never feel bad about Smelling the Coffee!

Merry Christmas!
Lisa
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