8 weeks after procedure and flare-up?

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

8 weeks after procedure and flare-up?

Postby Villagemaid » Sat Nov 06, 2010 6:53 pm

I had the angioplasty in Bulgaria on September 8th. Felt like a million bucks afterward.

And as of last week, I think I am having a flare up. Wait, I actually AM having a flare up. The symptoms are from a relapse I had last year so it would be considered recent damage.

I only had ballooning (80% stenosis on RJV and 90% Stenosis in Azygos).

I am wondering if this might be due to a immune response to a severe migraine a few days ago and the fact that I'm been giving it 200% in the last 8 weeks.

A little bit concerned.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby ThisIsMA » Sat Nov 06, 2010 9:44 pm

I am not an expert on this and I have not had the CCSVI treatment myself (yet) but since you are in BC, would it be possible to get a doppler check at Falsecreek?

If nothing else, that would give you knowledge: peace of mind that you are not restenosing or thrombosing, or information that you need follow-up treatment.

Hopefully someone who has gone through the procedure and experienced a setback will respond to your post with more and better ideas.

Best of luck to you and please keep us updated on how you are doing.

Mary Ann
DX 6-09 RRMS
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Postby blossom » Sat Nov 06, 2010 10:21 pm

i had the treatment. i was concerned about clots. at this time to try to travel is too hard and also even if i am restenosed for all i got from the treatment i'm waiting in hopes they will be coming up with more things.

anyway i had a local dr. in my area order a doppler. not the zambonni protocol for sure but they said no sign of clots and i do have blood flow. it did give me a little peace of mind. others may have better suggestions i'm sure.

i hope this passes and you get back to feeling good.
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Postby Villagemaid » Sat Nov 06, 2010 10:50 pm

Thanks to you both for your replies!

I could go for an ultrasound down at False Creek, but I am trying to think in the back of my mind that everything is as it should be. I mean, we still have MS, right?.....and I am experiencing symptoms of my most recent replapse (newest inflammation). And, I have been pushing it HARD the last eight weeks....I have done over 10 kickboxing classes and lost ten pounds!!!! So, maybe it's just my body telling me to slow down...lol...

If I still find around Christmas that I feel the same way, then MAYBE it will a trip down to Vancouver in the new year to False Creek.....

Keep the hope alive!!!....lol...
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Cece » Sun Nov 07, 2010 9:22 am

It is my understanding that any return of symptoms is a possible sign of restenosis. And restenosis can be a result of clotting, which can lead to permanent loss of the vein. And these veins are important.

Different docs have different schedules of follow-up dopplers, but the first is usually between 1 - 3 months.

Even with ballooning only, the wall of the vein is damaged which opens the door for regrowth and clotting. Also there is a three-month timeframe for when a clot can be treated, after that it is a permanent part of the vein. And during that three months, a clot can continue to grow until the vein is completely occluded and a catheter cannot be inserted through it, making treatment not possible. Anticoagulants help after a clot is discovered by preventing further growth of it, which may or may not allow the clot itself to break up.

I feel like I came into your thread with a little gray rain cloud, Villagemaid, it just is that a doppler ultrasound is such an easy way to check for this and the consequences if it is clotting have been dire for some. People assume that restenosis is the vein going back to the way it was, they don't realize that restenosis can mean the vein gets permanently worse.
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Postby Villagemaid » Sun Nov 07, 2010 9:37 am

Thanks Cece.....

I was told to take the Blood-thinners for one month only.....and I am still taking it. It just didn't seem long enough to only take it for 4 weeks.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Villagemaid » Sun Nov 07, 2010 9:42 am

Would you suggest getting an ultrasound? Maybe I'll go back on my bloodthinners TWICE a day.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Villagemaid » Sun Nov 07, 2010 10:13 am

I think I will do an ultrasound........it might put my mind as ease.....
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Cece » Sun Nov 07, 2010 11:31 am

Villagemaid wrote:Would you suggest getting an ultrasound? Maybe I'll go back on my bloodthinners TWICE a day.

Isn't it crazy that we'd be making these decisions ourselves? Right down to how much anticoagulation to take and for how long? Which blood thinner are you on? If it's Plavix, it's antiplatelet, not anticoagulant, and I don't have the knowledge base to know if that has an effect on a potentially already existing clot.

For myself, when I am treated, I plan to follow Dr. Sclafani's schedule of follow-up ultrasounds at 1, 3, 6, 9, 12 and every 6 months thereafter. And I would react with the same urgency and concern if I experienced a return of symptoms as I do whenever I read about it here. Does that help? I can't give actual medical advice, because I am not qualified and because I know some people are choosing not to pursue post-treatment follow-up care because it isn't available locally and the expense of travel.
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Postby Villagemaid » Sun Nov 07, 2010 12:03 pm

Thanks Cece......

I agree.....so much is up for interpretation...it really is a guniea pig society regarding this ccsvi.....lol.....

I'm still not sure what to do, but will maybe go talk with my GP....just see what she thinks....just keep doing what I've always done regarding this whol thing...research, research research!!!

:D
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Cece » Sun Nov 07, 2010 12:33 pm

Asking Dr. Sclafani is a worthy option too.

Or asking your original doctor. Bulgaria?

A GP might not know, a vascular doctor might, but the issue of CCSVI is so politicized. Plus it is so new. Doppler ultrasound is the way to know for sure....
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Postby Villagemaid » Sun Nov 07, 2010 10:12 pm

I know Cece....so mcuh is so new adn who knows!!!

Well, I guess it's like living one day at a time...who knows if my Copaxone injections were preforming the way they were supposed to...and I never questioned or was asked to have a repeat MRI...lol...so why shoould I feel like I need a repeat ultrasound to know if it the angioplasty is working?....I went on blind faith of so many medications, maybe I shoud go on blind faith this time as well....

Sounds about right, eh???...lol.... :wink:
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Nasti » Mon Nov 08, 2010 2:29 am

I am similar case, 5 mos post-op flare up. So I guess it all comes down to doing another doppler check... I mailed Dr. Grozdinski, no answer yet, I am thinking of going back to Bulgaria, it is actually close, but it is sooo much trouble and I am just tired...
However I love your positive attitude :)
If I decide to go this week, I will let you know what he said, if you're interested. And thanks to Cece for the support :)
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Postby Villagemaid » Mon Nov 08, 2010 9:15 am

Thanks Nasti! Please let me know how it goes! It seems a little too soon after the procedure for me! :(
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby jacksonsmommy » Mon Nov 15, 2010 9:08 pm

Hi VillageMaid,

Based on my experience, I'm guessing that you are just over doing it!! This is your body telling you to slow down. You are still healing. You still have past damage.

You MAY have restenosed, but I think you just need to rest and let your body heal. There were a couple of times when I thought I may have restenosed but it turns out I just need to chill for awhile.

Give it time. Slow down and listen to your body when the "early warning system" kicks in.
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