CCSVI: Some Words of Caution. Wheelchair Kamikaze's new blog

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

ccsvi

Postby blossom » Sun Nov 21, 2010 8:04 pm

i agree with mark. i don't take it that he is putting ccsvi down. pretty close to being in the same catagory as mark as far as disability goes i took the "desparate" route. if i were as early on as some no way would i have done it. this is too new and is not as plain and simple as we all hoped for. as he says further down the line there will be more known good and bad. but, i don't take his comments at all as putting ccsvi down. he merely is stressing caution. and, for those of us that got worse well, i guess we just hope somebody somewhere gets it figured out soon.
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Postby Cece » Sun Nov 21, 2010 8:33 pm

marcstck wrote:A word about my own decision to undergo venoplasty. In my post, and others about I've written regarding CCSVI, I've always made the distinction between patients who are desperate (in this case I defined these as people who are hurtling towards being bed ridden) and those who are suffering from less aggressive and/or less advanced disease.

apologies, Marc, you shouldn't have to defend that decision, although you do so very well.

I make the mistake of assuming others here are in my exact situation, I am surprised that anyone here can work a forty-hour week (or a twenty-hour week!) without completely collapsing but also am often surprised and distressed by the physical toll that MS has taken on some of my friends here. I've had my eyes opened too to just how bad it can get and I almost wish they were still closed.

Magoo, it's because we won't say "I told you so" if stents began fracturing that we have the responsibility to warn people off of them now, if evidence begins to point towards stents being dangerous, which I believe it does. I am however happy for you and others treated by Dr. Dake, I think your experience has been aided by his skill and follow-up care, which others receiving stents as medical tourism have sadly sadly lacked.
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Postby magoo » Sun Nov 21, 2010 8:56 pm

Magoo, it's because we won't say "I told you so" if stents began fracturing that we have the responsibility to warn people off of them now, if evidence begins to point towards stents being dangerous, which I believe it does. I am however happy for you and others treated by Dr. Dake, I think your experience has been aided by his skill and follow-up care, which others receiving stents as medical tourism have sadly sadly lacked.

I would like to see the evidence pointing to the danger of stents in the jugular. At this point there is none. Risk, yes. Improper follow-up, sounds like it.
I think it is our own responsibility to make informed decisions. Again, it is up to the individual whether or not to take this risk. It's not our responsibility to warn people off of stents or this procedure.
Medical tourism has it's added risks. There are also a lot of people who have benefited. It's not up to me to tell people what to do about their health. What if Barb Farrell had not traveled for treatment?
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby MrSuccess » Sun Nov 21, 2010 9:16 pm

I think Marc's blog is well written . Of course I am free to accept or disagree with his opinions . And I have .

At this point ..... CCSVI is getting the attention it deserves .

We now have a variety of opinions - professional and patient - that only add to the body of knowledge . And that is extemely important.

I am so very pleased that CCSVI was debated at ECTRIMS.

The next ECTRIM's will have a much larger and scientific CCSVI content.

Personally speaking .... anecdotal reports ..... by pwMS that have first hand experience with CCSVI medical intervention ...... impress me.

Mix those reports in with the strong statements provided by the CCSVI pioneer medical practictioners ..... and it is hard NOT to conclude that Dr. Zamboni's discovery has great merit.

Regretably .... not everyone treated has benefitted . YET.

What we DO HAVE .... is a great deal of information ..... based on the variety of experiences pwMS have with CCSVI ..... different doctors .....different procedures and medical opinions.

We are far from being in the dark.

The wonderful doctors pioneering CCSVI are continually collaborating with each other . Often , they disagree. This is normal .

So I think it unwise for people posting on TIMS to take sides . Or declare one method better or worse . I think the medical profession will eventually pinpoint and focus on the most SAFE and EFFECTIVE ....CCSVI medical intervention ....

And I can see that happening this year.


Marc - remind me ..... are you able to withstand surgery on your pinched vein/nerve bundle ?



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Postby magoo » Sun Nov 21, 2010 9:19 pm

Absolutely wonderful summary Mr. Success!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CureIous » Sun Nov 21, 2010 10:03 pm

magoo wrote:
Magoo, it's because we won't say "I told you so" if stents began fracturing that we have the responsibility to warn people off of them now, if evidence begins to point towards stents being dangerous, which I believe it does. I am however happy for you and others treated by Dr. Dake, I think your experience has been aided by his skill and follow-up care, which others receiving stents as medical tourism have sadly sadly lacked.

I would like to see the evidence pointing to the danger of stents in the jugular. At this point there is none. Risk, yes. Improper follow-up, sounds like it.
I think it is our own responsibility to make informed decisions. Again, it is up to the individual whether or not to take this risk. It's not our responsibility to warn people off of stents or this procedure.
Medical tourism has it's added risks. There are also a lot of people who have benefited. It's not up to me to tell people what to do about their health. What if Barb Farrell had not traveled for treatment?


I think if one is looking for "evidence" for any POV, they just need to look really hard for it and they will find it.

I have the premise that pitbulls are dangerous dogs, I'm assuring those around me that if they get one, the odds of a vicious attack are high enough to warrant extreme caution, and as such they should avoid pitbulls for the time being until one can be bred to alleviate such dangers.

Off we go, actively searching news stories, and sure enough, our fears are confirmed:
Terre Haute Boy Attacked By Pitbull‎
WIBQ - Nov 8, 2010
Police shoot pitbull after attack on girl‎
My Fox Boston - Oct 29, 2010
Pit Bull Kills Newborn Boy in Fla.‎
CBS News - Kevin Hayes - Oct 26, 2010
Pit bulls attack Chihuahua‎
Victoria Advocate - 3 days ago
Mother, 2 sons hospitalized after attacks by pit bull at ...‎
KSPR - Nov 14, 2010
More charges against man in dog attack‎
Knoxville News Sentinel - Don Jacobs - 5 days ago
Only in Print: Tougher laws called for after pit bull attack on child‎
The uni0n Leader - Nov 11, 2010


This seems to be adequate enough anectdotal evidence to issue a warning to all those considering a pitbull as a pet, the dangers are real, as real as it gets. However, I can't tell you how many pitbull owners have had safe and loving family pets, as there aren't any reports to make a determination, but suredly, considering the above, it's just too risky at this time to NOT warn people in the strongest terms possible, to avoid pitbulls at all costs. We just don't know how many people with dangerous, vicious killer pitbulls are not reporting such incidents, so the numbers are probably much higher. Perhaps they are afraid to come forward?

Now, while I myself am not a dog breeder, nor an expert in behaviours of particular species, not a veterinarian, or have even had a pitbull, I do know people who are familiar with them, and they feel the same as I do and said as much. So don't get pitbulls, for your own good. Get a fish, a goldfish, they are obviously safer, though prone to dying quickly if the precise water ph levels are not maintained, especially in the smaller tanks, but if they do die, you can always go and get another one, yes, they cost 5-10,000 each, as they are a special goldfish, and yes, you will need to get a new setup for each one, and break it in carefully, but it's a sure thing. The store has hundreds of them, so your options are only limited by your available funding and transportation to and from the "store". Now, some goldfish store owners are better than others, some don't have the latest techniques to ensure you go home with the latest and greatest, healthiest and most vibrant goldfish, so be warned, not all store owners operate with the utmost integrity and efficiency. Shop carefully, ask many many questions before, look at the fish a few times, read up on the characteristics, go home and think about it then come up with some more questions, get a variety of opinions from various sources, question everything, even the things you think sound good. Take a step back, and evaluate with a different mindset, as if you knew nothing about goldfish and were just seeing them for the first time. Read things out loud, ask yourself how it sounds. Does it sound reasonable? Could there be more to the goldfish that you aren't seeing, or aren't being told? Perhaps you found the pitbull stories through the goldfish seller. Maybe the goldfish seller doesn't like pitbulls in the first place.

Question everything, assume nothing, and most of all, never ever make medical decisions based on what you read on the internet, any more than you would call up your mechanic and get advice when he hasn't even looked at your car yet.

Remember, EVERYONE is biased. Period. Everyone brings their particular flavor to the potluck. Even judges, the bastion of objectivity in discerning law in our society, bring their own past and prejudices to the bench. Whether that is good, or bad, is in the opinion of the beholder. I would guess, if they make a judgement you agree with, you will think them to be a great judge, and vice versa.

I'm out of metaphors for the evening, and will stand by to see how long the analogies break down. Shouldn't take long, I can do it myself, but will leave it to others.
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 Cece » Sun Nov 21, 2010 10:47 pm

We do have a responsibility to each other. Whether they should or shouldn't, people are using information found here and on other sites to make major medical decisions and they are not doing it in conjunction with a local personal doctor.

It is why Joan has repeated her "Go Local" message, people can do with it as they like but it's an important message to get out there even when it's a painful message because there is no local option.

The worst outcomes have all involved stents.
Last edited by Cece on Sun Nov 21, 2010 11:00 pm, edited 1 time in total.
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Postby dreddk » Sun Nov 21, 2010 10:59 pm

I think the key thing at this stage as Mark alludes to is for people to be conscious of the risk versus potential rewards. Current state is:

Testing methods - variable. Operator dependent. Likelihood of incorrect analysis of stenosis - High.

Treatment options. Stents - High risk of clotting etc. Angiopolasty - risk of thrombosis, high likelhood of re-stenosis.

Benefits- Anecdotal.

Given the low odds of getting the right scan that identifies that right veins that are then treated with the right method (that doesn't result in side effects) and delivers the right results.....is the risk worth it?

Hopefully in 6-12mths the balance will have well and truly shifted...
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Postby CureIous » Mon Nov 22, 2010 12:20 am

Cece wrote:We do have a responsibility to each other. Whether they should or shouldn't, people are using information found here and on other sites to make major medical decisions and they are not doing it in conjunction with a local personal doctor.

It is why Joan has repeated her "Go Local" message, people can do with it as they like but it's an important message to get out there even when it's a painful message because there is no local option.

The worst outcomes have all involved stents.


I'm curious who these people are, have they come forward to say "I read a news article, read a few blogs and booked an appointment, had no idea of the warnings, though they be quite easily found in adequate proportions from one end of the internet to the other?

I'm sorry, maybe I give people too much credit for being intelligent human beings, whether or not they belong to this site?

The go local message is being replaced with one much more dangerous, "avoid stents, just do that, and you'll be safe". Don't worry about operator dependent variances, just keep away from stents and you'll be fine, is the end message. "Go local" gets lost in the noise. Don't stress patient education because there's too much work to be done scaring people away from stents.

Now, if you have a genius like our good Dr. S looking after you, who is constantly updating his knowledge base and improving his skill set, along with keeping in touch with fellow researchers, then there's not much more one can do in my opinion. Would that all our medical professionals be as tenacious and unrelenting in the pursuit of perfection.

Sadly, they are not, and while it may make some feel good to sound the clarion and sound it loud and frequently, there are MANY Dr's and clinics around the world, who will say, "ballooning special this Friday only".

That's the message that gets lost in all these faulty news articles and blogs, we've gone from talking about CCSVI in relation to MS, and changed it to "just keep away from stents", as if the rest just kinda works itself out. Where's all the plugged up jugular veins post angio minus stents that we hear so little about? Why don't those get headlines too? There's at least one on this very site.

I think the reason is, is it gives us something to clearly and definitively point the finger at. If someone has an issue and happened to have a stent, well there you go, stents are too risky, avoid at all costs, we have our "bad guy" if you will. Keep the lack of aftercare as a footnote, or even what patients SHOULD be asking themselves before considering such a creature. That part NEVER gets into the articles or diatribes. Do people even understand that just about any vessel you injure, be it angioplasty or stenting, should be (from what I understand) at a minimum treated with anti-coagulants and/or blood thinners, and those questions should be asked and satisfactory answers given before even considering a surgical intervention? That people vary significantly in their clotting factors, and that one size does not fit all when it comes to aftercare in this regards? IOW you may be fine, I may be not, I may clot at the slightest provocation or injury (such as what occurs during the expansion of any device in a vein, I'm sure we can all freely agree that endothelial lining is being torn using either method without much debate), point being that creating two diametric extremes is in my opinion, the worst possible thing for the neophyte, newbie, newly turned on to CCSVI, whatever you like to call them. "If not A, then B", each with a simplistic and underreaching definition, which makes for good soundbites I guess, but doesn't do much to effect stimulation of the "wait, I need to slow down, there's more here than meets the eye" part of the human brain.

So once again, I proffer that the media in all it's abilities to do good, does more harm, by presenting the juicy parts, and leaving out much of anything that could be truly helpful on a broad basis. They could end every one of those articles on our dear fallen Costa Rican tourist with say an interview with a real doctor, explaining specifically the hows and whys of the role blood thinners or lack thereof played a part, just for instance, not that I know anything about thinners or stents. They could do that, quite easily, I'm sure there are dozens of medical professionals that would jump at the chance.

In other words, a little balance, a little education, a little responsibility other than dire warnings, all fused together with other patients who *THINK?* something is amiss, but aren't sure and haven't been even looked at for follow up? Even conjecture now is news. Go figure.

It really has nothing to do with how nice we think media people are, or how kind of them to put this to the fore, if what you say is true, if you really believe that people do that, as a result of the media stories and a few message boards (which they were led to by the media in the first place), if that has really resulted in people jumping on planes to fly to foreign countries to be treated by God knows who for that much money, then I guess the media can help clean up some of the mess they created, sounds fair doesn't it?

I know they won't, as "10 things you should know before booking an overseas medical trip for CCSVI intervention" is not nearly as much a grabber as "man dies after experimental MS treatment".

They use people, and toss the leftovers out the window. They, the corporate media, the business, do NOT care about our health. At all. Only how much ratings it will generate.

There are no easy answers, but I'm sure that few of them will ever come from the media.

I'm personally disgusted that someone with the appropriate message (say um, Joan?) and balance wasn't thrust to the fore long ago.

I've said it before, loud and clear, and will say it again, don't trust the media, they have a distinctly divergent purpose from ours and it's not good health.
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 marcstck » Mon Nov 22, 2010 12:30 am

MrSuccess wrote:Marc - remind me ..... are you able to withstand surgery on your pinched vein/nerve bundle ?

Mr. Success


Mr. S-I suppose it depends on how invasive the surgery needs to be. I have problems with medical procedures not only because of my neurologic difficulties, but also because of all kinds of endocrine weirdness that I have. It's suspected that I may have some kind of subclinical version of Addison's disease, a condition in which the body fails to create the natural corticosteroids that help it to recover from trauma.

This can be combated by the introduction of artificial steroids, but then I have that avascular necrosis problem, which can be made worse by the use of artificial steroids (and was in fact caused by a 10 day course of IV Solu-Medrol, done several years ago as a "Hail Mary" to try to roll back my quickly declining neurologic condition, which had been exacerbated by sinus surgery). Quite the conundrum, and one that I have to consider with things as minor as oral surgery. 80-year-olds have no problem bouncing back from cataract surgery, usually back on their feet in a day or two. Last year I underwent cataract surgery and was on my back for over a week.

There's also debate as to whether the muscle bundle pinching my vein closed is actually creating a problem. Although the muscle is dramatically impacting the vein, and has resulted in the formation of a web of collaterals (according to my venogram pictures and Doppler results), when Dr. Zamboni examined the evidence he didn't think there was enough blood flow turbulence to be causing a problem. This all still needs to be sorted out, and I may still have other venous problems, as my Doppler indicated other areas of concern.

You may be Mr. Success, but to my doctors I am Mr. Atypical. At least as far my medical condition goes, I'd much rather be Mr. Run-Of-The-Mill…
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Postby Interrupted » Mon Nov 22, 2010 7:13 am

CureIous wrote:I'm curious who these people are, have they come forward to say "I read a news article, read a few blogs and booked an appointment, had no idea of the warnings, though they be quite easily found in adequate proportions from one end of the internet to the other?

I'm sorry, maybe I give people too much credit for being intelligent human beings, whether or not they belong to this site?


I see what you're feeling but honestly i've met and spoken to people who have done or were/are about to do just this. Literally read a newspaper report and booked in, in one case.

When I was abroad having the procedure, it became apparent to me from the briefing the day before surgery that a fair percentage of the people there were agreeing to stents without knowing much at all about what they actually were, let alone the risks or lifelong need for drugs that would follow if they were needed. It worried and shocked me the clear confusion that appeared on their faces as they asked such basic questions, it genuinely did because they should have been aware (IMHO) of all this before. I felt that they suddenly found themselves so far in that I doubt they would have disagreed even if they were no longer sure.
There was also one person there who was worried about "bursting the balloon in her neck" after she had the procedure. I have since heard that this is quite a common belief that balloons are actually implanted.

So if you believe that some people (whether the percentage is tiny or not) knowing nothing about the basics, about what a stent is or does, or not having looked up what angioplasty is and the balloon does, let alone the risks of any of the aforementioned means we should all keep schtum on the balance of good/bad incase it sheds a negative like on the treatment then I have to disagree. If people don't want to know or know already (as i'm sure a majority of course do) that's fine, they won't read it.

Personally I would voice the dangers that we know of as we learn them 'just incase' someone doesn't know and let them read or disregard as they like.

I didn't find he initial post negative, just a relating of the way it seems things are at present - if this were new to me i'd probably feel reassured these things were being said out i the open, and thus feel informed. I don't think I know jack compared to most people on here but I am an advocate for it, and I do hope that people make the decision themselves and in full knowledge of all the facts. :roll:
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby Cece » Mon Nov 22, 2010 7:45 am

Joan has a good platform, with the facebook page (as well as ccsvi.org), and I believe she makes good use of it. The 'Go local' and 'avoid medical tourism' messages come through. Here, we discuss things deeper, because the format allows it, but there, she has an authoritative voice with her notes and responses and also more names of U.S. doctors are shared, which helps keep people local. But facebook does have the medical tourism ads on the side. And there are still people paying $30,000 for treatment when it can be had in other places for $10,000.
I have since heard that this is quite a common belief that balloons are actually implanted.

I've read a post by someone, post-procedure, who believed that too.

Responsibility comes back to landing on the doctors, some of whom are churning patients through. Vulnerable adults, some of them. I do not like the term but back when I volunteered with the developmentally disabled, it was the term used then as well, and there is meaning to it.
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Postby magoo » Mon Nov 22, 2010 9:20 am

I think the issue here is medical tourism. Of course this is not an ideal way to get treatment, but for some it is the only option. Most of us have not had to make this incredibly hard decision. Assuming these people have a huge lack of knowledge is incredibly obnoxious. I assume most are informed and there are a few jumping the gun. The approach to putting information out there as an overall warning to all is what I take issue with. There are a lot of very intelligent people getting treated who may know more than those of us here, and I feel they are not contributing because of the way things are being discussed.
When your brain is not getting adequate blood flow and your health could turn tragic at any moment, the urgency is justified. How many stories will we hear once this is accepted by the medical community about patients who lost their health because they waited? The warnings should be directed towards the dangers of leaving your country for treatment, the follow-up blood thinning treatments, and the lack of knowledge or willing doctors to help you when you return home. IMHO.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CCSVIhusband » Mon Nov 22, 2010 9:23 am

^ 100% agree.
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Postby BooBear » Mon Nov 22, 2010 9:31 am

^ Me, too.
Three veins angioplastied.  One renewed life.  
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