has anyone had cssvi treatment for more than 2yrs?

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

has anyone had cssvi treatment for more than 2yrs?

Postby shucks » Tue May 10, 2011 9:05 am

Is anyone who has had the liberation procedure still doing better 2yrs or more out? It is really at the top of my list of ways to begin treatment if it really works. I bet I've read 1000 pages of things pro and con about this procedure in the last 6months, but as a complete newbie, I wanted to ask the question I haven't seen the answer to yet.
Has anyone had the procedure and is still better after 2yrs or more?

Thanks guys.

If I violated any rules in doing this, Please remove it mods.
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Postby wobbly » Tue May 10, 2011 9:27 am

2 1/2 4 me -was part of 1st 2 go 2 italy done by dr z team - guess i m abt the same which i guess is good - but this deal still sux PEACE ALL :) :) :)
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Postby dania » Tue May 10, 2011 9:52 am

Seeing as the public was only made aware of Zamboni's dioscovery by CTV W5 rerporter Avis Favaro in Nov 2009, it would stand to reason that the only patients that has had this done 2 years or longer are Zamboni's patients.
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Postby shucks » Tue May 10, 2011 12:52 pm

I just said 2yrs, thinking that that was the outside distance. Maybe I should have said over 1yr. Thanks for the clarification.
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Postby Cece » Tue May 10, 2011 1:02 pm

The very first of Dr. Dake's patients are coming up on two years now.

One year ago CCSVI treatment was available in Europe only. It was later in May, one year ago, that Dr. Siskin's name became publicly known; his was the first group to openly treat CCSVI in large numbers. By the end of summer there were more. You'd easily find people who are six months post-procedure!

The techniques continue to be refined, so many of the patient outcomes from a year or more ago do not reflect current techniques. Offhand I can think of people who had the procedure done a year or more ago; they've generally had to have a second procedure since then.
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Postby cheerleader » Tue May 10, 2011 1:15 pm

Jeff is 2 years this week-at Stanford. He has had 2 other angios (tune ups) since his original. One for intimal hyperplasia, one for stenotic dural sinus, both were successful. He took his blood thinning protocol, hydrated, stayed active, remained on Swank and endothelial health program.

He has had no MS progression, no new lesions. His brain atrophy, which was slight, has reversed on last MRI. He's working full time. Went downhill skiing again this winter (something he had given up with MS) New movie score coming out in fall, Pacino in Wilde-Salome, premiering at Venice. He is very happy he was treated by a local doc and had follow-up care, because this was not a one time deal for him. He had some severe venous malformations, and now he doesn't. We're very thankful and we hope and pray these interventions hold.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Donnchadh » Tue May 10, 2011 1:43 pm

I underwent one of the first US performed procedures back in March 2010 (seems ages ago!) but needed two more procedures since then.

Like what Cece said, there has been tremendous improvements in treatment as knowledge of this beast (CCSVI) has been gained.

There is no doubt in my mind, if the procedure was initially done following current state-of-the-art techniques, I might well only needed one procedure done. My treated veins are staying open!

Donnchadh
Kitty says, "Take that, you stenosis!"

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Postby CureIous » Tue May 10, 2011 5:18 pm

21 months out from my Dake treatment. Never been better. No drugs, no symptoms, long list of improvements. Anxious to get the next MRI and/or MRV coming up very soon. Since my lesions appeared to be pretty consistent between 2008>2010, I don't expect anything dramatic in that department, but if QOL, and daily stamina, and the longevity of improvements are any measure, well the lesions are, what they are, and although I believe they are still there, I cannot say what impact they are having. Hope that helps, but people stop in here all the time trying to gauge what their "odds" are for this thing improving their lot in life, and while there's nothing wrong with that at all (we all did it pre-op), the fact is your mileage may vary by quite a margin, and the only thing to expect, is the unexpected.

Many have said they would be happy with just no further progression. THAT must be something you really and truly accept, not as some idea, but as reality. Consider all else beyond that, icing on the cake. Some are shocked when they have no mountain-topping out of this world dramatic change, some are shocked when they have no change at all, others are shocked when they become WORSE. These are all very real possibilities and cannot be overstated. Good luck on your journey and keep us posted.

Mark.
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 bruce123 » Wed May 11, 2011 6:56 am

Donnchadh wrote:Like what Cece said, there has been tremendous improvements in treatment as knowledge of this beast (CCSVI) has been gained.
Donnchadh


I have been hearing this over and over. I'm not sure I agree. There has been lots of "experience" gained in the past year, but I don't think there are any significant "improvements".

Sure there are doctors using techniques that they believe are better than what was used previously, but they are not necessarily improvements. If they were improvements then we would see improved results. The truth is is that patients are still falling into the 1/3 – 1/3 – 1/3 grouping that they were a year ago. Patients are still unable to maintain their improvements for more than a few months. Sure there are exceptions, but statistically, very little has changed in the past year.

There have been many great ideas proposed in the past year of discovery but to call them improvements is premature. I recommend everyone to listen to Dr. Siskin's interview http://www.youtube.com/watch?v=9MojxHbwqxA&feature=player_embedded . He is a well respected leader in treating CCSVI and may be the most experienced in the North America. It is clear that he is has made a few changes to his procedures, but not many. I have followed him closely since he started treating CCSVI. My wife was on his waiting list since it began. She was treated by his team late last year. I have nothing but praise for him and his techniques but if you listen to him speak you will see that his procedures have not changed much from when he started.

Then there is Dr. Sclafani who is using IVUS and is focusing on his theory of treating the valves. This is great stuff. It is different, but is it an improvement? He stated in one of his posts that it will be quite a while before we know if his treatment techniques are any better at reducing restenosis.

I am not advocating that pwMS not get treatment. We are very happy that we did. My wife’s improvements were dramatic but only lasted 2 months. We are pioneers and I believe everyone at this point is a pioneer. Have there been some changes in the treatment of CCSVI, yes. Are they improvements, we don’t know.

Bruce
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Postby shucks » Wed May 11, 2011 6:56 am

Cureious,
What were your symptoms prior to the treatment? You had a marked improvement, so I'm wondering what the differences were.


Bruce, how severe were your wife's symptoms prior to the treatment?
has she leveled off at the prior level of symptoms or is she getting worse?
I just wonder if it makes a difference what stage, and the amount of disability you are at when it is done.

Thanks
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Postby Cece » Wed May 11, 2011 8:24 am

The truth is is that patients are still falling into the 1/3 – 1/3 – 1/3 grouping that they were a year ago. Patients are still unable to maintain their improvements for more than a few months. Sure there are exceptions, but statistically, very little has changed in the past year.

The thirds concept was never proven, it is an observation or estimate. Statistically, we don't have statistics for then and we don't have them for now.

It is humbling to think that six months ago, I'd have called the use of the oversized balloons an improvement, but then that has been called into question as something that may have done more damage than benefit in some patients.

I think of everything that was presented at ISNVD. The mouse study, Dr. Hubbard's fMRI study, plethysmography, etc, etc. They are further along in the discovery process than they were a year before, not just in regards to techniques, but to understanding CCSVI as a whole. But there is more ahead of us than behind us, to be sure.
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Postby drsclafani » Wed May 11, 2011 8:42 am

Cece wrote:The very first of Dr. Dake's patients are coming up on two years now.

One year ago CCSVI treatment was available in Europe only. It was later in May, one year ago, that Dr. Siskin's name became publicly known; his was the first group to openly treat CCSVI in large numbers. By the end of summer there were more. You'd easily find people who are six months post-procedure!

The techniques continue to be refined, so many of the patient outcomes from a year or more ago do not reflect current techniques. Offhand I can think of people who had the procedure done a year or more ago; they've generally had to have a second procedure since then.


I started treating in 2009

I have reimaged three patients who are greater than one year out from intial procedure.

just reimaged a patient with RRMS from february 2010 who is doing well and has no restenosis. this time around i treated the left IJV stenosis that i underestimated back in the old days.

Two others, one with PP and one with advanced SPMS have also had followup imaging. Neither has had major improvements.
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Postby bruce123 » Wed May 11, 2011 10:35 am

shucks wrote:Bruce, how severe were your wife's symptoms prior to the treatment?
has she leveled off at the prior level of symptoms or is she getting worse?
I just wonder if it makes a difference what stage, and the amount of disability you are at when it is done.

My wife has had MS for about 5 years. It is progressive, not RR. She has a number of symptoms including balance (she uses a cane), fatigue, shaking hand and the big one is recurring neuropathic arm pain that is sever and comes on 3 - 5 times per day. These symptoms had been steadily getting worse for the past few years.

After treatment she didn't notice anything right away but things started to improve after a couple of days and continued to improve for a few weeks. After 4 weeks she was walking much better, had no fatigue, and most of all, had no arm pain. It was fantastic. This lasted about 2 months and then over about a week her balance got worse and the arm pain returned. Her balance is not quite as bad as it was and oddly, her fatigue has not returned. Her arm pain is as bad as ever.

She is now 5 1/2 months post procedure and she is a bit better than before the procedure, but not much. I don't know if her progression has slowed or stopped. I would say that the best thing about having done it is that we know that it works. We are now waiting for some conclusive evidence that it can be done so it will last for extended periods of time. Until then, we will wait.

Some people achieve great results, some don't see much change and a few seem to get worse. Life is full of risks.

Bruce.
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Postby shucks » Wed May 11, 2011 11:57 am

Drsclafani,

Have you noticed a difference in your patients long term forecast depending on when they had it done? DO folks that have it earlier in their progresion stand any greater chance of long term recovery than those who have it done later?
As an aside, I read a study that seemed to say CCSVI is more common in devics than in RRMS over all. Have you seen or treated anyone with Devic's or NMO?

Thanks
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Postby hannakat » Wed May 11, 2011 3:44 pm

[quote="bruce123] He is a well respected leader in treating CCSVI and may be the most experienced in the North America. It is clear that he is has made a few changes to his procedures, but not many........................listen to him speak you will see that his procedures have not changed much from when he started.
Bruce[/quote]

This is somewhat disturbing. With the treatment being so new, I would expect to hear of significant changes. From reports, the 1/3, 1/3, 1/3 was off from the beginning, alluding to a 2/3 chance of some type of improvement, which hasn't been evident in the people I know who had treatment. It also doesn't cover the percentage of folks who became worse. Unfortunately, many have hung onto those numbers basing a very important decision on them.

Also unfortunate is the fact that most still have no local follow-up care options.
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