This Is MS Multiple Sclerosis Community: Knowledge & Support

I think it's important for people to make the decision whether they're prepared for stents and the risks before they ever have a catheter inserted into their vein. They need to understand what exactly the risks are and weigh whether they're prepared to take those risks. If they can discuss this with a doctor familiar with stents and their risks beforehand, all the better. Even a gp would be something as opposed to making a blind decision. If someone decides on stents, it is crucial to have someone close by who can monitor vein health. This plan should be put in place BEFORE ever undertaking the procedure.

Alternatively, I think it's important for those people who decide they do not want stents at all to appreciate that a significant # of people re-stenose following angioplasty. They have to understand and be willing to accept that possibility. Zamboni's people were at 50% restenosis rate, I don't know about Dr. Simka's. But if you're putting your money into this at a place far away and you choose not to have stents, then you need to be prepared for the possibility that your vein(s) may close up again. And you need to know what you'll do in the event that this happens BEFORE you undertake the procedure. It's a significant possibility and I hope people have accepted that this might be one of the scenarios that transpires.

Because it seems to me after reading the posts of people who return home and lose initial benefits and then wonder what to do and what has happened that the emotional toll this is taking on people is tremendous. If you have a stent put in and this happens, I can only imagine the stress and worry this would put a person under. For those without stents, I can also imagine how frustrating it must be to not know what's happened and what to do, especially if you've spent a lot of money and you can't be easily or cheaply checked in any kind of timely manner.

These are all factors that people need to put into their initial evaluation of what they want to do. You should put more critical and cautious evaluation into this than you do in deciding what kind of car to buy or what school your children will attend.

I fear many many people are in an even worse position having flown halfway around the world, having spent thousands of dollars, only to return home feeling no better, and a lot worse emotionally because they have no one to turn to for answers. They feel invisible in the sea of positive, overwhelming stories of improvements, wondering what went wrong for them.

It's so easy to get swept up in the emotional hype that's going on with the "amazing" stories of improvements when making the decision that it is vital to remain grounded, evaluate the situation realistically, the risks, the possibility that it won't work or that one won't see benefits, the risks of stents, even the possibility that you could worsen (according to some anecdotal reports), and put some time and effort into local follow up care so that you at least have a professional ear to turn to with questions or concerns.

Please don't get swept up in the hype to the point of abandoning common sense and a realistic understanding of all the potential results that could transpire, and ensure that you have weighed and are prepared to take both the financial as well as the health risks involved with ballooning or stents, and have tried to mitigate potential problems afterwards by setting up the necessary professional support close to home in advance of the procedure.

I hope people are taking just as seriously the reports of those who have not seen sustained improvements or have worsened as they do the reports of tremendous benefits. Both are just as important, the negative reports possibly even more important when making the decision for oneself.

There is still a lot to learn about this. It may well be worth some people's while to wait it out for a bit until more is known and answers to some important questions have been identified rather than rushing in too quickly where much remains largely unknown and the results may be impacted by that lack of knowledge. This decision needs to be thought out calmly, logically and completely divorced from the hype of "best case scenarios".

eric593, beautifully stated and my thoughts precisely. The more data we can accumulate, the better, so we can adequately weigh the potential risks and benefits. Thus the need for treatment studies. I look forward to seeing even informal, preliminary results from all the sites doing these procedures, including Stanford, Poland, Dr. Sclafani, et al. Facts, please, doctors!!

Short of that, we're left to guessing at our odds of success by reading anecdotal reports of cases that may be unlike our own. I can understand those who are progressing rapidly or very debilitated being willing to assume some relatively non-quantified risks right now. For others of us, the decision is not as clearcut.

I may ask Dr. Sclafani, on his thread, to share as many details of his results so far as he can (if he hasn't already - haven't read everything yet. Anyone know?).

Yes, check out the most recent posts (Saturday and today, July 4) of that thread. This will help you not have to read the other 150 pages.

He has gone into detail on this. Maybe check the Dr Sclafani index? He had some patients with dramatic improvements...there was the guy who came in with a cane or walker and was running up and down the steps the next day, only to lose it some days or weeks later...others who had no effects...some or maybe just one who felt able to do physio afterwards and so any improvement could be related to the physio...his first patient, who did not get a complete liberation, and is waiting for retreatment...he saw more improvements in RR and SP than in PP, but his sample size was small. He has not used stents in anyone yet. But why not read the whole 150 page thread? It's as close to a textbook on CCSVI as we've got.

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"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

Eric that was a very good, well-thought out post. Thank you. Personally, I understood the pros/cons in advance, I have a back-up plan here at home (not sure insurance will cover or how soon I can receive treatment but it's there), and I spent hours reading of others' experiences in Poland. I went into it full of hope and I make no apology for that. I know it was a huge risk traveling so far and spending so much money but I think the level of disability and the urgency were deciding factors for me. I am not doing well at all and have lost most of my independence. I'm a burden on others, which I really hate.

We told the doc in advance my preference for stents given the long distance but it's not my decision to make... the doc decided for me.

While I'm disappointed that my condition has reverted back, it was a risk I knew was a possibility and at least I now know for a fact that diligently seeking treatment is the right course. Opening my jugular veins WILL result in improvements. That is knowlege... it came at a price but in the end it is priceless. For this reason I am not sorry we went to Poland and I am not giving up. However your points are well taken so once again, thanks for caring enough to make them.

Pam

Hi Pam,

It sounds like you made a thoughtful, researched decision, aware of all potential consequences, with plans in place to deal with them and, more importantly, you were emotionally prepared for however it might turn out.

You are a great example of a well thought out decision. I'm just sorry it didn't work out as well as you might have hoped.

Thanks for sharing your story.

I got 2 stents in the left jug, collar bone to jaw bone. I am glad I did, don't have to worry about restenosis.
I was sore for 2-3wks. I had to watch my eating, talking,sleeping but now I forget about them most of the time.

I also have to take Plavix for 3mos, again, not problems, just soreness.
I know everyone has to decided for themselves. Blessings to all

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Mino/Copaxone, IVIG
LDN, Prokarin
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Eric593, thank you for your post. It was very well presented and I have re-posted it on the site I am usually on PatientsLikeMe.com.

I am going the route of extreme research and careful thinking before going for the treatment. I have been scanned at the Hubbard Foundation and am still waiting on the report.

Thanks again.

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Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10

Thank all of you for sharing your "anecdotes" - it is so hard to make this decision. I also am no longer able to drive (fatigue), and pretty much can't do a damned thing by/for myself. It stinks to always need to take someone else's time. And I LIKE being alone.
But it seems that this like any other odds. Maybe yes, good outcome, maybe no, UH OH!!!

Pam, will you return for stents?

It's not that simple. As far as I know, I can't really demand stents. It is a judgment call for the doctor.

I think that rather than return to Poland for a 45-minute procedure I will take the info I have -- the venogram, the proof -- to someone locally or maybe even New York and hope for the best... for now. I think a lot of docs are leery of stents and I can certainly understand their wish to be cautious, no matter how frustrating it can be to wait.

Good question though.

Pam

Interesting, I would have wrongly assumed after restenosis it would be an automatic next step for them. Judging by the fact they include 1 stent in the package price (@ EM/Katowice)! In a way it's reassuring they're not gung-ho with stents, but understandably frustrating for anyone in your position x

Unfortunately, stents can cause problems, which tend to be amplified across various blogs and other areas of the internet. It has been decided to toss the baby out with the bathwater so to speak, and angioplasty will be "pushed" to no end. Angioplasty, while considered relatively benign next to implantation of a foreign device into the body, is as we are all well aware, prone to restenosis, and in fact there are many that angio simply will not "stick" due to physiology, location and other reasons like bone protrusions etc.

For every "bad stenting" story, which granted are relatively few, we'll have dozens and dozens of restenosis stories from angio, requiring either an angioplasty, or *gasp* stent placement.

Some, just want to cut to the chase and are willing to take the risk. Some are not. Neither pov is more valid than the other. I'm not pro-stent, I'm pro whatever you decide is the best for your condition and situation, under careful advice of a trained professional with all the information you can possibly garner, that's what I am "Pro". That stance has been my stance from the very start.

Others have wavered, seemingly tossed about by every new report that comes out . Fact is none of us know, but basically by default, embracing angio as the only answer (for now), is also encouraging many many thousands of repeat procedures, while not only very expensive, is also a drain on the psyche of the patient, who's only thought going in to the 2nd procedure, if they are even able to afford that, is, "what if this one fails also?". Then go in for a THIRD procedure to place stents? What if that isn't possible at that point? What if the veins are too far stretched to ensure a firm stent adhesion? What if the original Dr. doesn't do stents? Now you have to start all over again and wait in line with everyone else, perhaps years.

All the more reason to go local if you can, or like in AZ wait a bit of time you may have some local options or options in the states. If you've run out of wait, do what you have to do where you have to do it.

But please don't ever base a medical decision based upon what one person with zero vested interest in your health recommends on a blog or anywhere else, including here, pro or anti anything, no matter how eloquent and prosaic. These blogs are cherry picked stories based on a singular biased view and barely scratch the surface of what is out there pro/con or neutral to any procedure...

For every plus, there is a minus.

It is my hope that a dissovable stent is developed that can be transplanted in, and over the course of months the body will adapt to the new shape and hold it, then the stent goes away and one is left with a robust vein, able to weather the tide on it's own. They've already been developed for arteries, I'm sure they are in the works for this adaptation.

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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

Excellent post, CureIous! Best wishes to you.

Pam

I asked about this when I went to see a vascular surgeon yesterday, and they said there is nothing like it and that it doesn't exist. Do you have more info or a source for this CureIous? Many thanks x