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

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Postby chrishasms » Tue Oct 06, 2009 9:09 am

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Postby catfreak » Tue Oct 06, 2009 10:33 am

Chris,

I would not go back and change anything I have done with Stanford. I just posted my update and I feel better.

The only thing I can say to you is if the veins are blocked then they need to be treated regardless of anything else that is going on with you or your MS.

I am praying that you will find peace with your decisions and you should do the same. :)

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Sharon » Tue Oct 06, 2009 10:52 am

Chris - it sounds to me like you really have not made a decision to do the testing and procedure. Did you have the same feelings/doubts when you went for the Revimmune? As I remember correctly, you kind of jumped in with both feet when deciding to go to JH. Maybe you first need to figure out why you are struggling with the decision. There is time - this is not going to go away in the next few months. Your mental attitude is going to affect the outcome, so unless you are 100% "all in", I would wait.

Sharon
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Postby chrishasms » Tue Oct 06, 2009 11:02 am

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Postby MaggieMae » Tue Oct 06, 2009 11:26 am

Chris,

I followed your posts daily through Revimmune and I remember that at first you were hesitant, then when you finally made up your mind, you were full steam ahead. Maybe you have some questions that are bothering you. I know I worry about the stents vs non-stents.

There are plenty of people on this forum who also have tried many treatments for their MS. You are not alone and they do understand.
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Postby Loobie » Tue Oct 06, 2009 11:59 am

The fear, I think, is coming from what will it do for your MS. I mean you're smart enough to know that fixing a plugged jugular is good to do regardless of MS. However, what is working for you now? That's the question I used to make the leap. My answer was this: nothing. So that's why I went for it. I am SP, I still feel like I have MS, but am taking no drugs and don't FEEL like I'm progressing. I feel very stable. Things flare up from lack of rest and over doing it, but nothing new has appeared and I haven't had a CRAB or a Ty infusion in 18 weeks. So, and I'm assuming here so tell me if I'm way off base, that the trepidation isn't necessarily in fixing a plugged jug. It's probably more of the emotional investment, which you already made in Rev., and now you may have to do it again for something unproven. Because reallly just fixing the jugs is pretty benign; the surgery hurts but you get over it. But the effect it will have on your MS is the sticky wicket.

As I"m sure you've heard me say, there's no parting of the clouds, or lifting of the veil of disability for me yet. However, I want to just quit all the damn drugs, and since they weren't working anyway, I may have done so with or without CCSVI surgery.

I'm sure your emotional investment was no small thing when you did Rev. I followed your blog every day and you were in it to win it that's for sure. You were all over it if memory serves. Now to sit down with another respected and brilliant doctor and do it all over again, but about something completely different. I mean we are all doing it for our MS, that's no secret. However, I've yet to hear Dr. Dake say "this is going to fix your MS right up". It may and it may not, but for me, I had to try something as I can't get any worse without needing some serious assistance and I think you're there too. I just can't call it the magic bullet yet, but I think folks who were 100% RR are doing so. Mel, Jeff, Mark, they were all RR and have responded wonderfully. People like Gici are who I really pay attention to because that's the boat I'm in. He says it takes serious time to notice, and that's what I have to do. So in doing this you probably won't have RR like results. You know I say that, but I remember from your Rev. blog that you did have enhancing lesions. So who knows? That's the million dollar question.
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Postby chrishasms » Tue Oct 06, 2009 11:59 am

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Postby CureIous » Tue Oct 06, 2009 12:21 pm

chrishasms wrote:See I want to know why I can't try to do the balloon first. If I need to come back in 2 months anyhow for a recheck why can't we see how it goes and if then I need to be stented?


I don't think Dr. Dake will have any problem at all with ballooning you. He was doing that at first but it was collapsing pretty quickly, that's why the stents but there shouldn't be a problem doing the angio's then you can stent later if needed/wanted.

Mark.
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 radeck » Tue Oct 06, 2009 1:08 pm

Re ballooning versus stenting...To the extent that we can compare to Dr. Zamboni's larger group of patients, it seems that the chance of re-stenosis is 50% or greater in two years (i.e. we only know that the 50% that had relapses post surgery had re-stenosis as well, but we don't know how many of the patients without relapses had re-stenosis). Now it seems as if Dr. Dake saw re-stenosis rather quickly after the ballooning, i.e. right there on the operating table. I agree that this is strange.

Good luck with the decision. Perhaps try to not think about it at all for a day or two and then quickly look back at it and see what your intuition tells you? I know, it's easier said than done...
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Postby mrhodes40 » Tue Oct 06, 2009 5:23 pm

Now it seems as if Dr. Dake saw re-stenosis rather quickly after the ballooning, i


That is how it was for me they blew up the balloon and t=when they put down the balloon it went right back. See mine is like muscles pushing the vein shut, so push on your arm with your thumb, when you take your thumb away the arm plumps right back up....same with my jug, opening the balloon in there was just like my thumb pushing on my arm--temporary.

but EVERY stenosis is different, some probably can be ballooned, just ask!! Maybe yours is in a different location. Ask your questions of Dr D go with the attitutde that you get to decide. That helped me a lot when I saw my MRV I was so completely decided....no problem.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Jamie » Tue Oct 06, 2009 7:17 pm

Chris,

Mel went through the same thing.

In the end she abdicated all responsibility to me and said 'I'm trusting you here'.

Even then, the deal was only she would go and have the scans only then decide.

She'd almost decided to come back a month later.

Then when Dake showed her the blockages, the malformed third jug etc she instantly made the decision. How COULD she leave herself like that? This was all without any prompting from anyone. I'd have adhered to the deal, if she wanted to go home no surgery then I would have cheerfully (outwardly) kept to the bargain.

I think its telling that lots of people have gone there with that attitude but once they can actually SEE it they want it fixing. I don't think anyone's gone, tested positive then decided not to.

I'll get off the fence mate and say do it. Just go get the scans. I don't understand everyone's hesitancy over stents but again that's just us a personal feeling. Get the scans - see what's what then decide.

Or wait a year, see where this leads. I know I got off the fence but to get back on, if you are doing okay and feel you can wait then that's a very good option too.

Good luck,

Jamie
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Postby whyRwehere » Tue Oct 06, 2009 11:37 pm

I think once bitten twice as shy....revimmune didn't completely work for you, so you are wary to do anything else...it's just natural.
Like people have said, you can do all the testing and say balloons only if you plan to go ahead, but don't be surprised if you had a jugular issue and have to return...will insurance cover you twice?
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Postby gibbledygook » Wed Oct 07, 2009 7:54 am

Just think; you're neck will be partially titanium nickel alloy. What's not to like about that?!! :D
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby chrishasms » Wed Oct 07, 2009 11:30 am

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Postby whyRwehere » Wed Oct 07, 2009 10:53 pm

Yah, well, in my eyes if there is stuff left over, then it didn't work completely.
But whatever, Chris, do what you want.
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