This Is MS Multiple Sclerosis Community: Knowledge & Support

Interesting article of the cause of restenosis.
http://radiopaedia.org/articles/intimal-hyperplasia

Interesting reading Dania, thanks for the post.
I hope things are looking up for you!

Hi all

This is really interesting. And makes perfect sense.
So maybe we would be well advised to take an anti inflamatory, like ibuprophin, after the prceedure, as long as it works with whatever blood thinner they put us on, which is mainly aspirin ? It sounds like it is worth trying as long as they are compatible.
Thoughts?
Scotland

But the article says absolutely nothing about taking an anti-inflammatory as a means to reduce intimal hyperplasia. It talks only about warfarin and blood thinners!

great find. I like the diagrams especially. Not sure about the ibuprofen. Intimal hyperplasia is one type of restenosis, elastic recoil and thrombosis/clotting are the other two.

I have been on Coumadin for over 10 years and it did not prevent this with me. So complex this procedure. It is turning out to be not as simple as we first thought.

You had the hypercoaguability issues, didn't you.

Is hypercoaguability something that a person might have and not know it or is it fairly easy to recognize the symptoms and be diagnosed?

It's a definite risk factor going into this and, with the large numbers of people getting this treatment, there will be others with hypercoaguability.

I did not know I had a problem until I got a clot in my lung. I was then tested (blood test) and it turned out that I had a hereditery factor, Factor V Leiden and a protein C deficency. Unless you are tested you will never know that you are at risk of forming blood clots.

That's scary, Dania. And there was the report of someone in Canada who had clotting post-venoplasty all the way up her arm. Dr. Sclafani thought that might be a hypercoaguability case too.

dania, when you had the procedure were the doctors aware you had this?
i was trying to look up what i have and see if it is similiar to what you have. i have mthfr short for methylenetrahydrofolate. which is a genetic thing making me more prone to clotting, heart attack, vascular disease and strokes. i had never had a problem but a neuro. running blood work on me found it. he has me on an asparin and folic acid.

before i had the ccsvi procedure i told the dr. in plenty of time and mentioned it even right before we went the surgery room. actually, by her response and look i got the feeling she had never heard of it. "i could be wrong". but she said it shouldn't effect anything.

i have had 1 regular doppler in my hometown and they said no clots and i had flow. but it still is a worry to me. as i am worse.

i think the doctors should run a test for this stuff or require a test before hand just like they test to see if your kidneys are ok. then they could at least maybe have a better idea what blood thinners etc. would work best.
or in some cases just not risk it until there is more known and a better way to prevent this from happening.


i wonder how many of the people having clotting problems after the procedure are not even aware they have this. but i think the doctors should be takeing this into consideration more than what some are before they just do it and send you home. it would be very imporant to be put on the right medicine right off the bat. the clots could be starting before you have time to see the doctor when you get home "if you have one to come home to". i don't think this is that rare and i got a feeling a lot of people with ms have it. just my opinion.

blossom
We weren't discussing these clotting disorders back in August, not that I remember.

Ask in Dr. Sclafani's thread? What about getting a CCSVI doppler not just a regular doppler?

cece, i know where you are coming from. i mean no disrespect. whether we were discussing them "clots" or not isn't all the issue i'm trying to get to. tims is such a big help and we've all learned a lot as we go. i'll always be glad i found this site and all the great people.

i'm saying that even though we were aware of some risks and made up our own minds and there is no blame and pointing fingers. i can't help but feel that doctors should be or should have been addressing the issue that some of us have with these disorders. they should insist on knowing before hand so as to maybe help to prevent some of this. i'm sure it happens in people that are normal but when the risk is higher i would think it would be looked at and treatment adjusted to fit. they do it when treating other things and surgeries and they know you have a blood disorder. anything that will help have the best outcome.

we're only ordinary people wanting help. we are being treated by doctors. some treating too fast and impersonal. they are supposed to be looking at these angles and i'm sure some of them are and i'm sure some aren't.

dr. sclafani said something to the effect that he may not be treating as fast but he will be treating with the best of everything available. "hope i'm sorta quoteing that right". he is a doctor from what i get out of his post that does address issues like this. i feel his patient is not just a number.
there are other very good doctors too we all know this and they are devoted too.

to sum it up i hope these disorders are addressed everywhere as they should be.

I don't know, should a doctor have caught these clotting disorders and changed treatment plans? Yes. But. CCSVI is so new. There are docs who don't think clotting is a likely concern and send their patients home on aspirin only.

You'd mentioned mthfr before but I didn't understand it then. I am sad that you've gotten a bad outcome and maybe mthfr had something to do with that.

cece, you are right ccsvi is so new. but angioplasty is not. when we all read about it we knew there were risks but the risk out weighed the hoped for outcome. one of the risk is clotting. and as you said some of the dr.'s sent people home on asparin and for some that was fine but what about the ones that maybe it was not ok.

like dania said you can have this disorder and not know. i didn't know i had it until they were checking for other stuff and found it. there are test to find out. so, again i would think that common sence would have doctors check every patient for these disorders before getting ccsvi treatment if they have not already been diagnosed just for safety and what choice of drugs they put you on and length of time etc.

i let them know i had it. but????? did it make a difference? if it did it was not discussed. i can pretty feel it wasn't considered.

cece, do you have mthfr or the clotting disorder dania has? chances are you don't know. that's what i'm trying to get across, wouldn't it be a shame if you had complications that might possibly be prevented if you were treated with medications that might have a better chance of preventing it. nothing is 100 per cent but make the odds as good as possible.

is the process mentioned just about arteries or veins or both?