Those with positive results face significant challenges

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

Re: Those with positive results face significant challenges

Postby mandamurr81 » Sun Jul 01, 2012 9:29 pm

Thank you so much for the reply! Honestly, I decided to get the procedure because I just couldn't stand the idea of wondering "what if" for the rest of my life. That and the research seemed promising, I have been following Zamboni's theory since 2009. I have always been cautious, waiting for more research. Eventually I got tired of the political garbage blocking progress, and decided that I had to try it. Partly because of videos like yours, I had hope. When I watched your before video, you looked so much like me in terms of symptoms and I know now that they were not due to a relapse, since you have had then so long. That kills the whole 'may have gone into remission anyway' argument.

That said, my expectations are firmly in check, and I know that it may not work for me. BtwI also am a patient of St Michaels Clinic.


i
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Re: Those with positive results face significant challenges

Postby Cece » Mon Sep 09, 2013 8:35 am

Tiltawhirl's videos are now coming up inaccessible on Youtube. ("This video is private. Sorry about that. :\ ")
Has anyone heard from him lately? Hope he's ok!!
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Re: Those with positive results face significant challenges

Postby Robnl » Wed Sep 11, 2013 6:54 am

Cece wrote:Tiltawhirl's videos are now coming up inaccessible on Youtube. ("This video is private. Sorry about that. :\ ")
Has anyone heard from him lately? Hope he's ok!!


I'm also veeeerryyy curious Cece but the last visit of tilt is "Tue Mar 26, 2013 7:01 pm" :sad:

Maybe Dr. Sclafani has heard of him lately.....
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Re: Those with positive results face significant challenges

Postby Cece » Wed Sep 11, 2013 7:19 am

HIPPA protects patient privacy so we can't ask Dr. Sclafani.
I've sent Tilt a pm and my hopes for his good health.
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Re: Those with positive results face significant challenges

Postby tiltawhirl » Wed Sep 11, 2013 1:03 pm

Hello all!

Sorry about the private video issue. I had inadvertantly privatised everything in error because of a public speech I did and didn't want work colleagues seeing some of my other videos.

The problem has been corrected. :)

In addition to the incredible mobility, bladder, and fatigue results, there were some unexpected benefits that Sal thinks perhaps is related to improved blood flow through the pituitary gland. It's pure speculation but the facts remain: I was never able to make children naturally. I didn't have the spermies. About three months after the proceedure I noticed something(ahem) and went to have it checked. The boys are back in town in droves! So strange. Also, baby faced tilt finally is growing facial hair. I used to shave with tweezers. Now I am a big boy and use a shaver! :lol:

This placebo gave me my life and then some back. And 15 months later all results are still holding.

I hope everyone is well.

tilt
...and I for one, welcome our new Neurologist overlords!

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Re: Those with positive results face significant challenges

Postby 1eye » Wed Sep 11, 2013 8:01 pm

tiltawhirl wrote:The boys are back in town
tilt


Very happy to hear that! Good luck.
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Re: Those with positive results face significant challenges

Postby Robnl » Fri Sep 13, 2013 5:19 am

Great to hear from you. Tilt!!!

Showed your video to my neuro, reaction??
"Ah, impossible...neurologic damage cant'be healed so fast'

And I was like;'so...so...continué..' but nothing :sad:
(then it must be something else doc!)

Ah, i will speak to him in a few months again :mrgreen:

Keep healthy!!!

Rgds,

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Re: Those with positive results face significant challenges

Postby Cece » Fri Sep 13, 2013 7:25 am

"Ah, impossible...neurologic damage cant'be healed so fast'

Exactly
Which is why we know that neurological damage was not the problem!
I had immediate on-the-table improvements too :)

If it's not neurological damage, then it's vascular / blood flow/ brainstem compression / cerebrospinal fluid flow / hypoxia / starving neurons /hypertension in the venous sinuses.
We have neurological damage too. Part of the luck-of-the-draw is whether or not an individual pwMS has more actual neurological damage or more all the latter listed above. What you want is all the latter because that can be the immediate improvements. This is all theoretical but the theory explains the outcomes of people like Tilt. :)
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Re: Those with positive results face significant challenges

Postby cheerleader » Fri Sep 13, 2013 12:59 pm

Cece wrote:
"Ah, impossible...neurologic damage cant'be healed so fast'

Exactly
Which is why we know that neurological damage was not the problem!
I had immediate on-the-table improvements too :)

If it's not neurological damage, then it's vascular / blood flow/ brainstem compression / cerebrospinal fluid flow / hypoxia / starving neurons /hypertension in the venous sinuses.


Bingo! Cece's right on.
So happy to hear from you Tilt, and glad your body is healing in many ways. Better circulation through the HPA axis might explain the better production of hormones and return of your "swimmers" :)

Why is it that when a patient has immediate improvements after a shunt to relieve normal pressure hydocephalus, some neuro isn't standing there yelling PLACEBO!
Read this wonderful article to learn more about how better cerebral perfusion changed this woman's life. Called, A Mind Emerges Joyfully After Years Lost in a Cloud and published in the NY Times. No one would ever say her improvements were placebo. Share it with your neuros.
http://www.nytimes.com/2004/02/10/health/10CASE.html

welcome back, Tilt!!
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dx dual jugular vein stenosis (CCSVI) 4/09
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Re: Those with positive results face significant challenges

Postby Lety » Fri Oct 25, 2013 8:42 am

tiltawhirl wrote:Hello all!

Sorry about the private video issue. I had inadvertantly privatised everything in error because of a public speech I did and didn't want work colleagues seeing some of my other videos.

The problem has been corrected. :)

In addition to the incredible mobility, bladder, and fatigue results, there were some unexpected benefits that Sal thinks perhaps is related to improved blood flow through the pituitary gland. It's pure speculation but the facts remain: I was never able to make children naturally. I didn't have the spermies. About three months after the proceedure I noticed something(ahem) and went to have it checked. The boys are back in town in droves! So strange. Also, baby faced tilt finally is growing facial hair. I used to shave with tweezers. Now I am a big boy and use a shaver! :lol:

This placebo gave me my life and then some back. And 15 months later all results are still holding.

I hope everyone is well.

tilt



Wow, this are really good News, I am very happy for you !!!! :-D
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