This Is MS Multiple Sclerosis Community: Knowledge & Support

I think my doctor might be dealing with red tape. I had angioplasty in the right jugular vein. Initially the scans showed a very narrow right vein with two collaterals. All three were barely releasing a trickle. After the first angio, I had incredibly positive results. Wow! It was amazing but stopped after a week. I went in for another angio and they found that I had a PVC going on with my heart and pulled the plug on the angio even before starting. Now I'm having to get a green light from a cardiologist re the PVC and am going through all that testing right now.

So what I want to know is how many times am I going to have to go in for angio that fails before either quitting or getting stented. How do I convince my doctor to do stents? He's extremely apprehensive to do them. He knows all about CCSVI and what's going on with Stanford. He is a very experienced Neuro-radiologist/interventional vascular surgeon. I am too in tuned with myself and too skeptical about everything to experience a placebo effect, so I know without a doubt that expanding the vein to open the flow is what is needed. My doctor has done many stents but hasn't done it in jugular veins for MS patients. I am so incredibly disabled that I have nothing to lose. I'd sign my life away and so would my husband. That's how desperate we are.

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DX w/ RRMS 2004. Self DX PPMS. I don't sit here feeling sorry for myself; I just sit here. View my Blog--history and current events in my life at
http://boopieupsmsjourney.blogspot.com/

Can you find another doctor to do the stent, even if have to travel?
Would you want to be your doctor's first try at something he is not familiar with? AND that he is reluctant to do?

I think it's going to be very hard to convince a doctor to do a stent in the right Jugular. This is just my personal opinion though ...

The right Jugular basically has a direct route to the heart - unimpeded.

The left I would say is more safe ... but that's just my thought.

Angio may be the only way to deal with the right until vein approved stents come to market.

Doesn't the left IJV have a MORE direct route to the heart, since the heart is directly below the left jugular? (not that the right looks like it's that difficult to reach either)

http://crista-galli.com/temporis/xenobi ... rontal.jpg

I am so disabled that traveling/if only going to the local cardiologist requires an act of God and a non-emergency medical transport company. Basically going anywhere else other than where the transport company will go is out of the question. At this point, yes I would be a first-timer for this very experienced doctor. It is good that he's being cautious and apprehensive. That means to me that he is careful. At this point with me I think is coming down to doing a stent or letting me progress and then kick the bucket.

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DX w/ RRMS 2004. Self DX PPMS. I don't sit here feeling sorry for myself; I just sit here. View my Blog--history and current events in my life at
http://boopieupsmsjourney.blogspot.com/

The left IJV ends at the left innominate and must make a right turn into there. This must then make another left turn into the superior vena cava ... so two turns before entering the heart (both at a greater angle than 45 degrees).

The right basically flows straight down into the right innominate which goes straight down (again) into the superior vena cava heart. All in one straight shot.

http://en.wikipedia.org/wiki/File:Gray480.png

Got it. I wonder if there are any better pictures out there. I'm not sure either of our pictures shows an ideal representation of the IJV's flowing to the heart.

Boopieup, I'm not sure you'll ever be able to "convince" your doctor of anything, since it's up to your doctor to use his best clinical judgment. At this stage, many doctors don't feel stents are sufficiently safe to use on IJV's and will not use them. Other doctors feel comfortable using them. I doubt you'll change your doctor's mind. If you want to try, I would suggest having him speak to a doctor that IS using stents successfully. Maybe that might give him further guidance and reassurances that he needs to move ahead with their use. Otherwise, your choices at this point may be limited to a) waiting until there are safer stents made specifically for IJV's, or b) going to a doctor that is comfortable using them.

eric--
Good advice. Now that I have more understanding of what the deal is I understand why my doc is so apprehensive.

Are there any companies trying to make the stents that we need?

I'm just wondering if continuing getting just angio is a waste of time. It already only lasted one week the first time I had it done. Actually I got a lot worse after the failure. I guess I'm just looking for "permission" or some kind of evidence so I can tell my husband to stop. This just reminds me of what happened to my aunt (adopted). She was diagnosed with terminal cancer and then my uncle dragged her all over for alternative (cures) which made her miserable instead of enjoying the little time she had left. She died anyway. I frankly am sick of getting dragged around.

_________________
DX w/ RRMS 2004. Self DX PPMS. I don't sit here feeling sorry for myself; I just sit here. View my Blog--history and current events in my life at
http://boopieupsmsjourney.blogspot.com/

I am so sorry that you are not only not better off, but that you're worse off after your efforts to attempt this new therapy. I applaud you for even finding someone willing to do not just one but two angio's on you. Good for you, now THAT is tenacity!

Yes, apparently new stents for veins are in the works. Because stents can't be removed once they're put in, you might even be better off waiting until the better ones are developed, because if you have one now, you can't have the newer one put in in the same place when they're available. I don't know about the level of your progression, which may be slow at this point, even though you are already quite disabled. It's hard to make an accurate risk/benefit assessment when so little is known at this point. And this is all so new that it's very hard to know anything for certain, it's all a guessing game at this point.

There are a number of people who seem to get worse after angio and hopefully the doctors will learn more about risk factors once more research is done. It's positive that you did see some early improvements though! Hopefully your PVC's will turn out to be benign which is often the case with them. I know, I have them too!