This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

Im soon going to have liberation treatment, but im not sure wheher to request balloon angio or stents,

i just wanted others opinions on what they would or did choose and why..

is the chance of migration that great?
is there an accurate percentage of those who had stent migration?

thanks

Best of luck in your liberation.

I followed Zamboni's paper suggestion.

Balloon angioplasty first.

If restenosed, then balloon angio again.

If restenosed, then my vascular surgeon and I will talk about stenting, but only until then.

Rox

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Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

I concur with Rox vis. Dr, Zamboni's protocol; balloon, balloon, then maybe balloon again. For me, the contra-indications are much broader than stent migration, which is probably the lesser of worries with stents. The Great Doctor Sclafani is not big on stents either. Neither is Sinan, nor a few others. BUT, it seems that our Stanford Pioneers overwhelmingly would not trade their stents in for much of anything (and I hope that they all live for another 50 years with no problems).

I was prepared to take a stent on my first round in Poland, and was relieved that I did not have to make that choice. My right IJV is much too large for a stent in any case (they don't make stents that big), and after 4 balloons on the right, and 3 on the left, the veins looked to be staying open. I have great hope that the second round of balloons will do the job (for a few years, anyhow), but if it doesn't, I will look to having a vein graft before a stent. Stents are a last-ditch effort for me. They are designed for situations where the life-expectancy is not so great; people on dialysis, with major coronary problems, etc. I hope to be around another 40 or 50 years. Will a stent last that long without fracturing, thrombosing, etc. in the neck? I doubt it. Once that stent is incorporated in the vein, it has to be cut out... ie: a vein graft will be required.

What is of great interest to me are bio-absorbable stents, but they don't seem to be on the market yet.

I must say, however, if my veins had refused to stay open, and I was facing the same physical state that I was in before treatment (or worsening), I would have gone for a stent.

marcstk posted a paper on stents that is worth reading if you are unsure about things.

Good luck on your procedure, and your choice. I do not think that I would tell the doctors that I want a stent, or that I want angio, before they even get in there. I will say (on my second trip) "NO STENTS", but my humble advice is to listen to the docs. If my veins don't stay open on the table, I will be tracking down a doctor to do a graft.

Clear as mud?

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My name is not really Johnson. MSed up since 1993

I am getting the procedure in the USA next Tuesday August 17th. I know the doctor will use stents if needed. I also know I have major stenosis in my right IJV that will require a stent according to a local neuroradiologist who reviewed my MRV images with me. My first inclination was do have balloons only. However since I know it most likely won't help me right now I am leaning toward stents. I have been living with chronic pain and fatigue for three years and there is absolutely nothing any doctor has been able to do to help me. So I am willing to take the chance.

ozarkcanoer

Perhaps I have some perspective on this....having undergone two separate liberation procedures. (both balloons, no stents)

After the first procedure, I felt great. The venograms taken during the procedure "proved" to me that I had stenosis just like Dr. Zamboni's CCSVI theory said. High up on both left and right internal jugular veins; everything (azygous) else checked out OK.

After they re-stenosis, I was gun-ho for stents. I wanted to get this over with; something which would last. The doctor who did the second procedure didn't feel it would be safe to use stents, so ballooned me just on the left hand side.

Now with the right hand side still collapsed, my symptoms have made some improvements which are being maintained some 2 months later.
I must admit worrying about the left (opened up) side re-stenosis everyday, but so far so good.

I would suggest finding a doctor you can trust. The most conservative course of treatment would be to first definitely determine what the vascular problem is and where it is located. Next try ballooning. Maybe even a second ballooning. Stents are the last option.

However in some cases, ballooning alone isn't realistic-I have read that in some patient's veins re-collapsed right after ballooning and just won't stay open by themselves. In that situation, stents are the only hope.
I think everyone undergoing treatment now should realize how experimental this all is; but with my progressive MS and age I don't feel that I have time to wait.
Good Luck.

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I am wishing you all the best...good luck! Please let us know what happened and your post-op progress.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

personally, if i got tested at all, it would depend if health care would cover it.

it would also depend if i felt on board with the optimal testing methods involved. (example: i got approved for coverage for rebif but decided against it in the end)

same thing with treatment.

if someone was going to pay for my treatment choice, it would likely be venoplasty first, then see what happens, then decide to consider stenting.

it would all depend on what my scans looked like.

my 2c

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

My answer is straight forward. I have already decided. My progression rate is no less than RAPID.
I will obviously hope that ballooning is successful but if not I want stenting 100% . 3 years ago I was running 6 km 3x/week and had a 7 handicap in golf. Today I can't stand on my own and now use a wheel chair fulltime etc etc etc. and instead have an EDSS of 7.
I get worse in most all my symptoms every 2-3 weeks and have for 30 months. I want to be able to play catch with my 5 yr old grandson more than anything in the world - even for 5 minutes-can't right now.
I have very little time left IMO and am 100% ready for that risk, because .....

I would be too. I am sorry.

It is "easy" for me to have my outlook because I am still upright. For that, I am very thankful.

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My name is not really Johnson. MSed up since 1993

There are SO many variables here, that simply asking yes/no stents or angio is nearly unanswerable, even with 4 very controversial stents in my neck, (as opposed to the 5 to NINE that other's have had implanted) I try to put myself in the "what if I just learned about this all right now what would I think?" frame of mind, and frankly, I haven't the foggiest what to think any more, there's so much conflicting info flying around to boggle the mind and confuse, I would be asking the same q's myself if not for the already answered question. It was so much simpler last year, with so little info to go on except for the given of restenosis in 50% of the Zamboni cohort, no negative results (yet) for stents, and my inability financially to embrace the prospect of multiple treatments, the path was a bit more clear cut, albeit the short and long term consequences in an unproven application of (note I said application, not strictly usage) stents in jugulars was basically an unknown x factor, and really, it still is, 5 years from now we'll know more about the long term effects, but for now, wouldn't trade my stents for extra angioplasties if they were free. Angio, while being relatively safe , isn't like going to a drive thru to get another burger if you don't like the last one you had, who knows what the long term effect is of constant stretching and ballooning of a specific tissue in a specific area of the body.

But see, that's just my opinion as I see it, nobody on this site or any other has the "real lowdown" when it comes to this stuff, it's a work in progress and will remain that way for the forseeable future, studies or not. Remember, Zamboni isn't "anti-stent" just because he's pro-angioplasty, there's some nuance there, it's a conditional pro-angio approach until as such time some better, more reliable and IJV vein-specific stents can be developed, and put into patients who themselves will be test subjects in their own right.

Mark.

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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

adamt and ozorkcanoer,

Wishing you both the very best for next week.

Adamt would you consider the possibility of your doctor using Dr.Tariq Sinan of Kuwait's method of ballooning? He said he has had excellent results using a larger balloon as he is not allowed to use stents in Kuwait. His discussed his technique at Dr. Sclafani's symposium in July and it was pretty impressive.

Drury

thank you everyone for ypour replies,

i think i have made my mind uip, i will get balloon angio first, and if i restenose, then i think i will go for stents,

lets see how the ballooning goes]
thanks everyone

Good luck Adam, keep us updated on your journey!

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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

Good for you, I think that's very wise.

OK, everyone, I had the angios at the end of July. The R jug was narrowed to the diameter of what looked like a thread. and the L jug was expanded to take the overflow..{I guess?] Well, the procedure went well and I was feeling better immediately afterwards: toes uncurling and pain alleviating. Ms "hug" gone....After about a week, maybe less, things started tightening up again, the hug is back and toes....not so good. SOOOOOOOOOOOOOOOOO
I'm off to Albany in October for ??re-evaluation????
I'm going to discuss stents with the doctor and see what he says. I signed for possible stent insertion, initially, but they were not put in. I suppose that determination was made upon viewing up close and personal........
I'm gong to see what he says, but if I'm asked my preference, I'm going the way of the stents.
As one before me has said,"I'm sick and tired of being sick and tired"
I just hope I'm not part of that group who have seen -and will see- no improvement. So, I feel like I have to do ALL they have to offer, now!
Wish me luck................................Hurry up and wait....AGAIN!