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Old 11-17-2009, 05:36 PM #21
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Originally Posted by PolarExpress View Post
Achh..Where's Marc? He explains this so well. It does make sense. The surgery itself is risky, but finding out if it's a problem just takes a good MRI and someone who knows what they're looking at. It would be good to know how many MSer's have some kind of blockage or narrowing. I think it's a promising line of investigation!
hello. i have rrms dx in 2001. upon being scanned for a problem with my swallowing, 2 cysts showed up on my thyroid. at the bottom of the mri was a note saying:
cardiomegaly and borderline pulmonary vasculature. when i asked the dr about the results, he dismissed the note and told me its nothing, not to worry. this was 3 yrs ago. i have many symptoms that were pushed aside... should i disregard this notation in the scanned results or should i have looked into this further? i should say even before the test was taken, i had been to the e.r. a few times for palpitations and for a resting pulse of 140 or over. waiting for my dr to return to send me for follow-up with scan on neck... somehow, i think the research for ccsvi makes alot of sense and answers alot of the questions i have had over the past few years... anyone else with ms had any scan results noting cardiomegaly (enlarged heart) or pulmonary vasculature? i would appreciate feedback if anyone has. Thanks so much,
MamaGirl
thank you very much for your help...
MamaGirl
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Old 11-17-2009, 09:58 PM #22
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Originally Posted by poetic license View Post
same with you, huh? I just had a relapse plus two episodes of disease activity (that I'm not sure would be "relapses" per se). I'd heard so much about LDN but I'm still hanging on to hope that I'd be worse off with out it and the copaxone. I wish I could go to stanford but I have insurance issues, a baby, no job, yadda yadda, plus I'm allergic to nickel, I have to find out if they have non-nickel stents. I am going to email dr. Zamboni and see if there is some hope for me entering a trial with balloon angioplasty.
Poetic license, I am sure the stents would have to be made from Titanium, so that MRI's can be taken during and after the surgery and when needed for MS MRI's.

Stainless steel sometimes has a nickel coating on them, like with injectable needles (syringes), it makes them smooth on the surface so they enter the skin easier. Nickel is in so many things. I am allergic to that too.

I thought that was why the Copaxone was causing me such bad site reactions, from the needles and the "new smaller, easier to use needles that don't have the burrs on them."
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Old 11-19-2009, 10:38 PM #23
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Poetic license, I am sure the stents would have to be made from Titanium, so that MRI's can be taken during and after the surgery and when needed for MS MRI's.

Stainless steel sometimes has a nickel coating on them, like with injectable needles (syringes), it makes them smooth on the surface so they enter the skin easier. Nickel is in so many things. I am allergic to that too.
One of the people who had the surgery said that the types of stents she got were:
Cordis Acculink Nitinol
Cordis SMART Control biliary

both are titanium nickel.... and both, incidentally, were billed to insurance at 10,000 a pop!

I really worry about the nickel, because I so badly want to be treated for this--even if there are no guarantees that it will help the MS at least I know that there is something that's tangibly "broken" that could be fixed, instead of these random drugs that they don't really know how they work, and just barely work at that.

There's a study coming out the 24th that will detail the 18 month or so follow up from the 100 patients who had the "liberation procedure", and explain how it affected their relapse rate, MRIs, etc. Can't wait to see the results.
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Old 11-20-2009, 01:58 AM #24
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Quote:
Originally Posted by MamaGirl View Post
hello. i have rrms dx in 2001. upon being scanned for a problem with my swallowing, 2 cysts showed up on my thyroid. at the bottom of the mri was a note saying:
cardiomegaly and borderline pulmonary vasculature. when i asked the dr about the results, he dismissed the note and told me its nothing, not to worry. this was 3 yrs ago. i have many symptoms that were pushed aside... should i disregard this notation in the scanned results or should i have looked into this further? i should say even before the test was taken, i had been to the e.r. a few times for palpitations and for a resting pulse of 140 or over. waiting for my dr to return to send me for follow-up with scan on neck... somehow, i think the research for ccsvi makes alot of sense and answers alot of the questions i have had over the past few years... anyone else with ms had any scan results noting cardiomegaly (enlarged heart) or pulmonary vasculature? i would appreciate feedback if anyone has. Thanks so much,
MamaGirl
thank you very much for your help...
MamaGirl
MamaGirl, I've been accused of having too big a heart but somehow I don't think it was cardiomegaly or pulmonary vasculature.

I don't have any answers but if I found something like that on my MRI report and my neurologist dismissed my questions I would press it further and do some immediate investigating to understand what it meant as far as MY body went, and possibly even go looking for a new neuro.

When it comes to my health and my body I want it explained, and if the doctor doesn't have time to explain it in detail for me, I want one who will, even if they consider it something "minor",because after educating myself, I would wonder WHY MY doctor, who is supposed to be a PARTNER in MY being as healthy and happy as I can be, wasn't referring me to a cardiologist!

I hope someone here can help you to find an answer!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
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Old 11-20-2009, 11:37 PM #25
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This is being broadcast tomorrow (sorry if it's a repeat, W5 airs on CTV - Canada):

Statement from the Executive Producer of W5:

We at W5 are excited by the worldwide interest being expressed in Avis Favaro's report about the new therapy being used by Dr. Paolo Zamboni and now being studied in North America.

To confirm, our documentary "The Liberation Treatment" will be broadcast on the CTV television network (seen in Canada at 7 pm local time) Saturday, November 21. W5 is also available via the Internet at www.W5.ctv.ca - online information about our documentary will be available approximately 6 pm Eastern Time. Avis' report will be available for viewing, without subscription, after 7 pm Eastern Time. Unlike entertainment programs there are no restrictions on viewing W5 stories from anywhere in the world - assuming you've got the bandwidth to stream the video.

If you get to the site - just click through the main-page story and you'll be taken to the viewing page. Note that each part of the story - this one is in two parts - play separately after a brief ad, so be sure to look for the second part after viewing the first part. You need to select it as it does not play automatically. Our documentaries typically remain available on the site for many months.

As a matter of background for those unfamiliar with W5 - we are the longest-running newsmagazine/documentary program in North America, now in our 44th season. We are also the most-watched and most-respected program of its type in Canada.

Anton Koschany
Executive Producer
W5

So it's nice to see that this will be available worldwide for everyone to see (nothing worse than getting a black out from being from another country! Grr!).

I'm very excited to watch this show
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 11-21-2009, 09:53 AM #26
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Another article on CCSVI-

http://www.theglobeandmail.com/news/...rticle1372414/
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Old 11-21-2009, 03:02 PM #27
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Thank you everyone
I just heard about this yesterday from Canadian friends; they are DVRing it for me from their satellite and I will get to see this program tomorrow. I read some of the articles (not all) and it really seems like it might be exciting-afraid of getting my hopes up
RW, you are amazing
Linda
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Old 11-21-2009, 06:22 PM #28
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I don't get my hopes up too high anymore, as most of you who have ridden this pony for long can understand, but I'm always looking for new information and listening, and this is making a buzz around the world.

Only time and study will tell. I am keeping an open mind until more information is available.

I can't get the net show on the Canadian channel, since I've got dialup, but I will be interested in what they have to say, if those of you who can watch will give us a synopsis of the program.

TIA!

(BTW, I CAN spell, so please ignore the MY for "may" in the title..*WEG*)
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.

Last edited by Riverwild; 11-21-2009 at 06:41 PM.
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Old 11-21-2009, 06:48 PM #29
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Quote:
Originally Posted by Riverwild View Post
I don't get my hopes up too high anymore, as most of you who have ridden this pony for long can understand, but I'm always looking for new information and listening, and this is making a buzz around the world.

Only time and study will tell. I am keeping an open mind until more information is available.

I can't get the net show on the Canadian channel, since I've got dialup, but I will be interested in what they have to say, if those of you who can watch will give us a synopsis of the program.

TIA!

(BTW, I CAN spell, so please ignore the MY for "may" in the title..*WEG*)
I just watched the show. WOW. I emailed them already. My father had a similar procedure done for his heart. This would make too much freaking sense if proven correct for me in my own situation - beyond the MS point. WOW..

Try this RW

http://www.ctv.ca/servlet/ArticleNew...1121?s_name=W5

There's an excellent Q&A off this page too. My email's already sent. I'll travel to Toronto if I have to to have this surgery done. Maybe I'm being overly optimistic but I'm a firm believer of this one...
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 11-22-2009, 10:53 AM #30
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Just throwing this out there for those of you who know more about this and have been keeping track of CCSVI.

In all that I have read so far, they talk about the blood brain barrier and stents to help unclog arteries/veins in the brain. But what about the spinal cord? I, like others on here, have t-spine lesions as well. Would Zamboni's theory hold true for spinal lesions? How would they stent the veins/arteries within the spinal cord? I can't seem to find anything about CCSVI and spinal cord lesions.

Also, is it possible that these are 2 different diseases? That people who only have brain lesions actually have a vascular disease but those who have lesions in other places have something else? And, if CCSVI some type of a congenital condition, wouldn't it tend to run in families more often? Or, again, is CCSVI a different disease?

Why is it that MS has areas within the brain that it "likes"? (

So many questions. Sorry, just trying to get a better understanding. CCSVI truly makes sense in regards to the brain. In my mind, I liken it to a stroke.
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