This Is MS Multiple Sclerosis Knowledge & Support Community

Hi all,

Coming up on 3 months and I keep getting stronger by the day. Thanks to everyone here for your support over the past 90 days.
What a rollercoaster ride!

http://www.youtube.com/watch?v=gnfu9O1xL1s


As cheeseball as it sounds, you really are my hero Sal. Hugs and love from Canada!

tilt

Amazing video, tilt. Keep up the good walking.

ha i know those hills. that is impressive tilt.

keep it up.

tiltawhirl, watching your video made my day. seeing someone that experienced the pain we know all too well here get the results you have is really something to celebrate. enjoy, and keep getting better and better.

Wow - amazing. Results we can still only dream of but so happy for you.

allynz wrote:Wow - amazing. Results we can still only dream of but so happy for you.

Thanks guys. At the risk of sounding like a complete douchebag, but in the interest of honesty I gotta say that I am struggling with this.

A lot.

Why doesn't everyone see benefits? Why did it work so well in my case? I was the skeptic. I was the nay-sayer. In fact when I first heard about the treatment back in 09 I laughed it off. I didn't want anyone screwing with anything inside my head or body if I didn't have to. Obviously I ended up changing my mind as there weren't other options that seemed half-way reasonable, and I was getting worse.

So now I dance around in this weird land where my dreams have come true yet I look back at all the others, whose boat I was sitting in just 3 months ago, and they are still drifting(for those where treatment doesn't work). It's crushing and heart-breaking at times. That's the bare honest truth of the matter, for what it's worth. I do know the pain of this disease which makes this change all the more difficult.

tilt

I would say there's luck involved but it's probably an interplay of factors including whether one's symptoms of fatigue or poor balance etc are MS-related or CCSVI-related, since poor bloodflow can cause these symptoms and neurological damage can cause them and you don't know until the blood flow is treated which it was. How much plasticity remains, so that the brain can respond to the improved blood flow and continued healing can happen? I also think that size matters: the bigger the jugulars, the more outflow that is possible through the jugulars. And the techniques used in the procedure itself varies from one doctor to another. The presentation of CCSVI differs, with some malformations easier to treat than others.

I can share my experience, which is highly positive, but it hurts to know of others who don't get those results.

Even with no improvements, there might still be a benefit in the months and years to come, if improvements come slowly or if the disease course is modified. Much like the DMDs, though, you don't know what your disease course would have been if you'd gone untreated.

Survivor guilt is natural but you made it through and we are all glad you got what you got out of the procedure.

Tilt that's a fantastic improvement. I'm glad the procedure has worked so well for you. Keep up the improvements.

Dave (the other 20mm jugular.)

And congrats to Dr. Sclafani.

I think this video should make believers out of everyone who sees it. Do not despair for the rest of us (at least that is my advice). If you can believe it, your success makes me as happy as if it had happened to me. It helps me keep my eyes on the prize. You have beaten one hell of a monster. I find it as much or more of a landmark event seeing this, as watching the W5 Zamboni appearance in 2009. I feel that my 30 years with it are somehow over, even though they're not for me yet.

Take care of yourself. You are holding a gift from God.

Tilt, your experience gives us hope that we are indeed moving down the right road . . . even if it sometimes feels like a de-activated logging road Onwards!

tiltawhirl wrote:

allynz wrote:Wow - amazing. Results we can still only dream of but so happy for you.

Thanks guys. At the risk of sounding like a complete douchebag, but in the interest of honesty I gotta say that I am struggling with this.

A lot.

Why doesn't everyone see benefits? Why did it work so well in my case? I was the skeptic. I was the nay-sayer. In fact when I first heard about the treatment back in 09 I laughed it off. I didn't want anyone screwing with anything inside my head or body if I didn't have to. Obviously I ended up changing my mind as there weren't other options that seemed half-way reasonable, and I was getting worse.

So now I dance around in this weird land where my dreams have come true yet I look back at all the others, whose boat I was sitting in just 3 months ago, and they are still drifting(for those where treatment doesn't work). It's crushing and heart-breaking at times. That's the bare honest truth of the matter, for what it's worth. I do know the pain of this disease which makes this change all the more difficult.

tilt

Tilt, i am so happy for you. You are the optimization of CCSVI outcome.

I have no proof, but a hunch: You do not have MS; You have CCSVI pure and simple If you have MS, it is a minor problem

I have said since 2009, i do not treat MS. I treat CCSVI. I have never varied from that point of view, since I treated a wallwalker who came back a few days later for followup, stood on one leg and said, in front of our whole team: "ta da!" After all the tears of joy, I remember saying (and I have never varied) : this cannot be the result of correction of MS: a chronic demyelilnating disease of unknown etiology.

You all have CCSVI but some of you have demyelinization that cannot be overcome in the short term by angioplasty of the outflow veins. Will treatment of CCSVI statistically, in large cohorts of patients, prolong time to disability (unlike, I might add Interferon beta)? We shall find out some time in the future when ccsvi is be properly studied like DMDs:as a treatment option for MS to prolong time to disability. My crystal ball suggests to me that the answers may also include Pharma focusing on how to optimize MS treatment after successful CCSVI treatment.

In the meantime, tilt' enjoy your benefits and stay vigilant to the possibility of restenosis and remind yourself that restenosis is not failure but just another hurdle.

You pony tailed partner

DrS

Amazing Tilt. Enjoy your freedom. Just understand that survivor guilt is natural and be sure to broadcast your story as Bill Code did to help others. One day it will all be figured out and Sal and the other CCSVI drs will be vindicated that they have been and are treating something that causes severe disability. Its just a huge shame that other illnesses aren't being studied along with MS. ME/CFS would be a big contender as most sufferers have CCSVI symptoms and I think within that pool of patients there will be pure CCSVI patients that are currently being missed and then there will be pure ME (and that will be given the full and proper recognition it deserves). Fibromyalgia deserves research attention also.

Keep on getting strong , you are an inspiration,

Jill

tiltawhirl wrote: Why doesn't everyone see benefits? Why did it work so well in my case?

tilt

Hi Tiltawhirl,

Like everyone else, I’m thrilled that your health has improved so much. Amazing! But your outcome is actually rather unusual, so my mind keeps wandering back to Dr. Sclafani’s comment:

drsclafani wrote:Tilt, i am so happy for you. You are the optimization of CCSVI outcome.

I have no proof, but a hunch: You do not have MS; You have CCSVI pure and simple If you have MS, it is a minor problem[/b]

I have said since 2009, i do not treat MS. I treat CCSVI...

You all have CCSVI but some of you have demyelinization that cannot be overcome in the short term by angioplasty of the outflow veins.

DrS

So, I can’t help asking how you got your official MS diagnosis, tilt? Is there a chance that you (like many others) were misdiagnosed with MS in the first place? I’m not trying to be rude, but I was kinda hoping for more discussion about that topic between you and Dr. Sclafani.

In my case, I’ve passed most every test for MS and been told I’m one of the most definite cases of MS some of my docs have ever seen (not that anyone's sure what MS is in the first place). But…I don’t seem to exhibit any of the CCSVI symptoms like fatigue & brain fog, or at least they’re only a minor inconvenience to me. And I don't normally have cold hands/feet either. And I've had barely controlled HIGH blood pressure for 35 years, not low.

(My dx story is here: http://www.thisisms.com/forum/general-d ... 16335.html )

In my case, even CCSVI testing is out of the question - at least until I get enough lottery winnings to afford multiple trips and multiple procedures far, far from home.

Good luck to you and I wish you continued good health!

(Edited to fix my link - I hope.)

euphoniaa wrote:

tiltawhirl wrote: Why doesn't everyone see benefits? Why did it work so well in my case?

tilt

Hi Tiltawhirl,

Like everyone else, I’m thrilled that your health has improved so much. Amazing! But your outcome is actually rather unusual, so my mind keeps wandering back to Dr. Sclafani’s comment:

drsclafani wrote:Tilt, i am so happy for you. You are the optimization of CCSVI outcome.

I have no proof, but a hunch: You do not have MS; You have CCSVI pure and simple If you have MS, it is a minor problem[/b]

I have said since 2009, i do not treat MS. I treat CCSVI...

You all have CCSVI but some of you have demyelinization that cannot be overcome in the short term by angioplasty of the outflow veins.

DrS

So, I can’t help asking how you got your official MS diagnosis, tilt? Is there a chance that you (like many others) were misdiagnosed with MS in the first place? I’m not trying to be rude, but I was kinda hoping for more discussion about that topic between you and Dr. Sclafani.

In my case, I’ve passed most every test for MS and been told I’m one of the most definite cases of MS some of my docs have ever seen (not that anyone's sure what MS is in the first place). But…I don’t seem to exhibit any of the CCSVI symptoms like fatigue & brain fog, or at least they’re only a minor inconvenience to me. And I don't normally have cold hands/feet either. And I've had barely controlled HIGH blood pressure for 35 years, not low.

(My dx story is here: http://www.thisisms.com/forum/general-d ... 16335.html )

In my case, even CCSVI testing is out of the question - at least until I get enough lottery winnings to afford multiple trips and multiple procedures far, far from home.

Good luck to you and I wish you continued good health!

(Edited to fix my link - I hope.)

Not rude at all. Well if this is a case of mis-diagnosis, then every single one of my symptoms lines up with both MS and CCSVI. I am still thinking about this myself.

Every single MS symptom over the past 10 years. Lesions in multiple MRIs in different locations. Are these infact ALSO CCSVI symptoms pure and simple? I have no idea.

Only time will tell I suppose. Thanks for the well wishes.

tilt


edited to add: Imagine if I had to lose the benefits of the CCSVI procedure to prove that I actually had MS? This is getting weird.

Doctors try to fit us into a pattern, but as knowledge expands, so do the patterns. More than 20 years after an MS diagnosis (although the docs always seemed puzzled that my symptoms were relatively mild), guess what!

I was told that I don't have MS - I have a vascular problem. This was from the neurologist who heads MS studies for a major teaching university hospital. So no more Tysabri for this kid!

Three CCSVI treatments have gotten some improvements, but things keep closing up again and I still can't walk without bilateral support.

I choose to believe that I'm not the problem. The medical community still doesn't have the right combination of knowledge, technology and treatment protocol. But they're hard at work and I have great hope, something I lacked for more than 20 years. That alone is a huge improvement.