This Is MS Multiple Sclerosis Community: Knowledge & Support

I am posting (with permission) various images.

First procedure done in Egypt Aug 8 2010.

Images from the dilation of the distal right IJ. Note the size of the vein versus the size of the balloon. I do not have any post dilation images (no on the CD) so I do not know what it looked like post dilation. The balloon used here seems large compared to the surrounding veins.



Here are the images from my venogram March 3 2011



The IJ is occluded for a long distance all the way to the skull base. We tried a variety of catheters and wire to cross this occlusion.

Since we could not cross from below, we attempted from the left side.

There is a severe stenosis intracranially at the confluence of the sinuses (http://en.wikipedia.org/wiki/Confluence_of_sinuses) - Green circles. Blue circles show collaterals around the occlusion.





It was very hard to even get an 0.014" guide wire to cross the stenosis. The microcatheter would not track across the stenosis. So this approach also failed.

Some options....

Try dilating the confluence of the sinuses? Unknown risks. If successful, this would allow better drainage of the right via the left. Would also allow an attempt at re canalizing the right side from above.

RFA from below on the right? Might work. However, likely very poor patency given the long occlusion. Stents will not last in this area either.

No good bypass options here.

Anyone with some different ideas?

Thank-you Dr. Cumming.

Based on the images you posted, it looks as though the condition of my vein actually worsened in the months after my first procedure. This makes my stomach sink.

I hope there is another avenue we can take. Here's hoping...

Hey, just read this thread. Winnipeg, I'm so sorry to hear of your problem.

Dr. Sclafani had no problem getting through my veins, it's just that I have an extrinsic muscle that is impinging my right internal jugular, which presents a problem with very few good options for resolution.

Ballooning will do nothing, as it will not affect the muscle whatsoever. Stenting is dangerous, because the muscle will put constant pressure on the stent, at the very least bending it out of shape, and at worst causing the stent to fracture.

Surgically excising the muscle, or even paralyzing it with Botox have been discussed, but both of these options carrying some serious risk. At the very least I'd probably be left unable to turn my head, at worst an open neck surgery is dangerous, and there is very little experience injecting Botox into the area in question, which is filled with muscles, nerves, and blood vessels. If the Botox migrated, as it sometimes does, there could be all kinds of very bad unintentional consequences (so I've been told, by a few doctors).

I'm currently assessing my options, and will probably undergo a second venoplasty with Dr. Sclafani sometime soon, more to look for other problems than to address the muscle impingement. All of this is further complicated by the fact that the consensus amongst my doctors (my primary neurologist, Dr. Calabresi at Johns Hopkins, and the neuroimmunology team at the NIH) is that I most likely do not have MS, although no good differential diagnosis has been able to be arrived upon. I'm quite the medical mystery.

Started IVIG therapy this week, because it treats a fairly wide array of conditions that have neurologic impact, including MS, which still can't be ruled out.

Meanwhile, my disease continues to march along unrelentingly. Right side completely out of commission, left side weakening…

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Marc
www.wheelchairkamikaze.com

Hi,

Yes, the vein went from being open (but narrowed) to completely occluded. I have seen this happen in other patients. In your case, I wonder if this was a result of using too large a balloon causing too much injury to the vein resulting it completely collapsing and scarring down (this is not thrombosis). There is a lot of "hype" about big balloons and this is one of the results of using them. Sal and I have talked about this.

Marc, you are right about the problems treating this segment of vein. I don't feel stents are dangerous - they just won't work for any period of time. BTW, I really have enjoyed reading your blog. You are a great writer.

There aren't any extremely strong stents on the market? What about a jugular graft using the PTFE tubing? It might be an extreme idea, but so is excising the muscle.


No good options there.

Like everyone here, I'll be rooting strongly for you. Dr. Sclafani has gained a lot of experience in the last year.

It is terrible that this is happening.

Thanks for responding Marc, Cece and Dr. C

Sorry Marc, I was under the impression that Dr. Sclafini could not enter your vein. Thanks for clarifying.

I am at a loss for words really. There is a part of me that believes I caused this... by going to Egypt and jumping the gun. If I would have waited would this have happened? I am not sure how much more of this I can take.

Marc, I too appreciate your writings. They give me strength to carry on, knowing that I am not alone.

Where do I go from here?

Winnigal and Marc,

Your stories just crush me, and make me realize how strong we all are, and remind me of my own gratitude that things are not so much worse for me. I wonder: how the f.uck you do it. How the f.ck I do it. I know the answer, but I don't know, either.

My very best hopes for you both, and to all that come here seeking information, solace, encouragement, and... hope.

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My name is not really Johnson. MSed up since 1993

Mark has some 'structural' stuff impinging on his vein, a bone structure pushing on it if you will, on one side. He is a difficult case for that reason for sure, but there are other issues. He details his architecture very well in terms of this issue. I would search Mark's name. I know he's not alone in that, but it's not super common either.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

I think you made the best decision you could at the time. The higher blockage you have on the right is a very difficult area to deal with. I have seen several of these come back occluded after ballooning. Be patient and let your other veins heal after the ballooning. As we gain experience we will find other options to deal with your problem.

Dr Cumming,
So if the restenosis is greater than it was originally, then we can suppose that there is scarring as well? In general, how do we know based on a Doppler if the restenosis is due to scarring or collapsing of the vein? Can we treat somehow the scarring? I assume that in case of a collapsing vein we can just repat the dilation?
Do you have any data on using large balloons, e.g. restenoses rate and how much of these are elasctic recoil or scarring or clotting? What can be done in these three cases and how long are we in danger of these after the operation? As far as I remember dr Sinan had excellent results, this is why others like dr Arata started to use his techniques. His patients in Kuwait were part of a trial, so they must have been well documented. Did you or dr Sclafani talked to dr Sinan recently about these issues? I heard only about WinnipegGirl's unfortunate case with occluded veins from Egypt. Do you know about more cases? Could it be that with time we can hear more of these as it happened to WinnipegGirl only 5 months after the operation?
Thx

Hi

I am new to posting (I have been a lurker) and want to say thank you to all of the posters, so much information has been provided. To all who have not had ideal results I am sorry that any of us has to go through this process.

I just went for a one month follow-up U/S so I would be on top of any issues and my LIJV is almost totally closed. The actually cause of the closure is unknown at this point, but I do know that I was feeling really great for about a week and then things started to go downhill.

Does anyone know if I have put my RIJV at risk by having the U/S this soon?

Thanks for any information.

Hi,
Where did you get the treatment? Did they use extra large ballons? Why would the U/S risk your RIJV? In many places they do an U/S a day after the procedure too.

Welcome, munchkin! Sounds like it was smart to go to that 1 month follow-up. I am sorry to hear about your LIJV being nearly closed. If it happened within a week of the procedure, it might have been elastic recoil (best case scenario, as this just puts it back to how it started) or clotting or this collapse/scarring down from having been overstretched by too big of balloons. Some people in the same position have been put on anticoagulants like Coumadin. Others have had quick repeat procedures; if there's a possibility of it closing up completely, this is important to do before it is completely closed so that a catheter can still get past the occlusion. Do you have a doctor to discuss your options with?

Hi

I had the procedure done in Minneapolis, my IR used a 16mm balloon. But it took several prolonged dilations and then the restriction popped. And it really popped, almost everyone in the room heard it. Apparently the RIJV has great flow.

In a moment of panic I thought the RIJV might close from the pressure of the U/S and needed some feedback from people in the know.

I have a call into my IR and hope to hear from him on Monday or Tuesday and see what suggestions he has.

Thanks for your feedback

I think Dr Cumming offers sound advice.