Two and a half weeks post-op: EDSS from 6 to 3.5!!!

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

Two and a half weeks post-op: EDSS from 6 to 3.5!!!

Postby lucky125 » Tue Aug 17, 2010 1:24 pm

My latest blog post:

I had a fascinating appointment today with my neurologist, Dr. Tornatore. He has been one of the rare neuros who has been excited about CCSVI since the beginning. Today was no exception.

He came to get my husband and me from the waiting room. Hugs for me and a handshake for my husband. Then he motioned for me to walk with him to the exam room. I handed him my cane and walked next to him all by myself! I do have a flair for the dramatic! He was impressed.

He wanted to hear all about my latest treatment. I pulled out my disc full of images, as well as the written report. I told him all about the amazing improvements that I have had experienced over the past two and a half weeks. We talked about the differences in my experience after each of my procedures. He was listening so attentively, and taking lots of notes.

Then we moved on to the physical exam. I was ready to really wow him! He tested my reflexes and muscle strength. What really struck him was the dramatic improvement in my ability to lift my feet at the ankle. I have had foot drop on my right side for years. I finally got an AFO with dorsiflexion assist in December. I don't need it anymore! Well, for as long as this treatment lasts, anyway.

Then he had me walk. I'm still too weak to walk on my toes or heels for more than a few steps. I am also not going to pass a field sobriety test walking heel-toe any time soon. But you should see me walk his hallway without a cane or a wall for assistance!

He told me that he had me measured as a 6.0 on the Kurtzke EDSS scale before my CCSVI procedures. This level says, "Intermittent or unilateral constant assistance (cane, crutch, brace) required to walk about 100 meters with or without resting" I concurred. This scale is used by neurologists to quantify disability in eight functional systems. It is often criticized for primarily focusing on the legs, to the exclusion of other clinical changes. But it is a simple way to evaluate walking.

Well today he assessed me at an EDSS of 3.5!!!!!!!!!!!!!! This level says, "Fully ambulatory but with moderate disability in one FS and more than minimal disability in several others." To earn that number I walked 500 feet up and down his hallway without a cane or touching a wall. I did it with ease! Well, at least until the last 20 feet or so, then it got a little tough, but I made it. I was amazed. I had never tested myself like that.

I can't wait to tell my PT all about it when I start rehab with her tomorrow! If she was impressed with me during my evaluation yesterday, this is really going to blow her away.

I wish there was some data on the results of a second venoplasty. It would be so comforting to read that the second time around lasts much longer than the first. Ha! Wishful thinking, I know. I guess that I am one of the guinea pigs who will provide that unofficial data for myself and others.

I realize how lucky I am to be in this position. I will make the most of it by documenting my progress, both forward and backward. Although, let it be said that it is WAY more fun and easy to report the forward progress!

Cheers,
Nicole
Last edited by lucky125 on Tue Aug 17, 2010 3:29 pm, edited 1 time in total.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Cece » Tue Aug 17, 2010 3:24 pm

That is amazing! Hopefully what they'll find out about second venoplasties will be that they're twice as good and last twice as long as first venoplasties. :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby CureIous » Tue Aug 17, 2010 5:02 pm

Absolutely incredible.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Katie41 » Tue Aug 17, 2010 5:08 pm

Fantastic :D :D :D :D
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Postby Salvatore24 » Tue Aug 17, 2010 10:01 pm

Sorry to inform you that all of your "improvements" are merely the effect of placebo and only anecdotal, even though they are confirmed by your neurologist using a measured and universal scale (Kurtzke EDSS). It's also dishearetening to learn that your neurologist is actually excited about CCSVI, when he should clearly know that this is all a hoax/snake oil/quackery. Oh well, he must be a quack himself.








BTW Sarcasm is my friend 8)
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Postby Algis » Tue Aug 17, 2010 10:07 pm

Cool :) Keep on with good news; I love them.
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Postby Cece » Tue Aug 17, 2010 10:19 pm

Salvatore24 wrote:Sorry to inform you that all of your "improvements" are merely the effect of placebo and only anecdotal, even though they are confirmed by your neurologist using a measured and universal scale (Kurtzke EDSS). It's also dishearetening to learn that your neurologist is actually excited about CCSVI, when he should clearly know that this is all a hoax/snake oil/quackery. Oh well, he must be a quack himself.








BTW Sarcasm is my friend 8)

:D
Indeed, the truth is that the patient in question is clearly relapsing-remitting and this is just a remission, completely unrelated to the procedure. And if the patient was thought to be progressive or secondary progressive, well that was a misdiagnosis, they are relapsing-remitting now, and it all still fits the autoimmune paradigm just fine. Nothing to see here. Probably the safest thing is to get the veins reblocked (some guy named Putnam has some animal fat that'll do the trick).
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby sbr487 » Wed Aug 18, 2010 12:24 am

Cece wrote:
Salvatore24 wrote:Sorry to inform you that all of your "improvements" are merely the effect of placebo and only anecdotal, even though they are confirmed by your neurologist using a measured and universal scale (Kurtzke EDSS). It's also dishearetening to learn that your neurologist is actually excited about CCSVI, when he should clearly know that this is all a hoax/snake oil/quackery. Oh well, he must be a quack himself.








BTW Sarcasm is my friend 8)

:D
Indeed, the truth is that the patient in question is clearly relapsing-remitting and this is just a remission, completely unrelated to the procedure. And if the patient was thought to be progressive or secondary progressive, well that was a misdiagnosis, they are relapsing-remitting now, and it all still fits the autoimmune paradigm just fine. Nothing to see here. Probably the safest thing is to get the veins reblocked (some guy named Putnam has some animal fat that'll do the trick).


Come on guys - we all know Dr. Zamboni came up with a hoax. And he choose MS to get famous because MS patients have lower "cognitive reserves" and dont have the right intellect to question him. See ... its so simple ... Can I now publish my theory about Zamboni's theory in Annals of neurology?
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby lucky125 » Wed Aug 18, 2010 5:36 am

Well, I must admit that I have see threads veer off course in the past. But, whoa! I guess that we are all comfortable enough with the validity of the good Dr. Zamboni's work that we can now joke about it.

I would say that in a twisted kind of way that is wonderful!

I remember ALL the way back in the dark ages, you know 2009, we were so excited, nervous, hopeful, scared, that there was no room for sarcasm.

I'm so glad that my, and so many others' indisputable improvements have opened the stage for playful sarcasm! How far we've come!

Thanks for the smiles! :D

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby kiwee » Wed Aug 18, 2010 6:03 am

i am so happy for you.
good to read yet another success story.
1 month today i head to india for my ccsvi treatment.
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Postby BooBear » Wed Aug 18, 2010 9:12 am

Woohoo!!!!!!
Three veins angioplastied.  One renewed life.  
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Postby Cece » Wed Aug 18, 2010 12:30 pm

sbr487 wrote: Can I now publish my theory about Zamboni's theory in Annals of neurology?

Painfully, I think they'd probably take it! 8O
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby CureIous » Wed Aug 18, 2010 1:03 pm

I'm in bunches with this thread....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Two and a half weeks post-op: EDSS from 6 to 3.5!!!

Postby CureOrBust » Wed Aug 18, 2010 5:40 pm

lucky125 wrote:I wish there was some data on the results of a second venoplasty. It would be so comforting to read that the second time around lasts much longer than the first.
Nicole, I didn't read anywhere in your posts that the effects of the first have degraded? or are you simply expecting the worse from others experience?
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Re: Two and a half weeks post-op: EDSS from 6 to 3.5!!!

Postby lucky125 » Wed Aug 18, 2010 8:07 pm

CureOrBust wrote:
lucky125 wrote:I wish there was some data on the results of a second venoplasty. It would be so comforting to read that the second time around lasts much longer than the first.
Nicole, I didn't read anywhere in your posts that the effects of the first have degraded? or are you simply expecting the worse from others experience?


Sadly, my improved balance and walking only lasted for about 2.5 weeks. Other symptoms returned slowly over 5 months to the point where I was worse off than before the first procedure. Total bummer.

I am cautiously optimistic that this new doctor will have longer lasting results. He used bigger balloons, and held them open longer. Perhaps there are some cumulative benefits. Who knows?

Details about the changes are here if you are interested: http://myliberationadventure.blogspot.c ... study.html

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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