Any statistics on vein tearing?

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

Any statistics on vein tearing?

Postby selkie » Fri Dec 17, 2010 2:48 pm

I've noticed several posts by people who have had pain in their neck and other areas after the ballooning. My big fear is tearing of the veins (yes, I know every procedure carries risk, yada yada) not to mention other complications I've read of.

The thing that really bothers me about having the procedure - though I believe CCSVI is a real condition and if it is present, should be treated - is the fact I have no choice but to travel at least 2,500 miles and no follow up will be performed, and no follow up with anyone knowledgeable exists where I live.

Sad that trials & treatment are so slow getting off the ground and forcing people to either wait until treatment is available close to home, or insurance pays for it (which mine won't), or at least follow up is available close to home.

So, although I have an appointment, I'm strongly considering canceling it. Not because I don't believe in the benefits of treatment - but because of the assembly line methods being used (treat today, go home tomorrow), and because no one in my area is available for follow up.

This means if I had complications, the difficulty in getting a flight back to where the treatment was done, would take at least one, possibly as many as 3 days (flights get solidly booked here).

The stress is completely tearing me up as I do believe the treatment could help me. But the risks may be too great - not so much of the initial procedure - but the lack of follow up and the extreme apathy of all of my local doctors as to what I do and what happens to me.

The truth of the matter is, I don't think any doctor I have gives a fig - and the ones doing the procedure, though they believe in it, are basically running an assembly line. I'm told I'm welcome to come back should I need to, but again the cost of flights, delay in booking, difficulty of an 8 hour airplane flight - are sobering realities.

I think I need to wait until this procedure is offered close to home. And that may well mean getting no treatment as I'm no spring chicken!

Talk about stress. But I need to be real about my particular situation. Believe me - if I lived closer, and could get this done via a road trip or short air flight, I'd have it done in a heartbeat. But that's not my situation and I feel it's not for me - not until the doctors here finally open their friggin minds.
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Postby Cece » Fri Dec 17, 2010 3:00 pm

I am sorry to read this, selkie, what a situation. Have you contacted a lot of IRs on the islands? No interest? There's been such an expansion of availability of CCSVI treatment, I have to believe it will reach Hawaii too in time, maybe sooner than we think.
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Postby soapdiva884 » Fri Dec 17, 2010 4:08 pm

Selkie, I am so sad to read your post. It is a shame that your flight to treatment will be so lengthy. I can understand what your saying about not having follow up and being concerned. In my opinion you NEED to have follow up by someone qualified to let you know if your veins are operating correctly after something like this. Not to mention if your taking an anti coagulant you need to be monitored too.
I hope things work out for you and pray you can have this done with the proper follow ups.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Cece » Fri Dec 17, 2010 6:38 pm

here's the SIR doctor-finder for Hawaii:
http://doctor-finder.sirweb.org/?w2=&co ... rovince=HI

When you're just looking for follow-up care, that's easier than finding one to do the treatment in the first place. This could be possible, selkie! Even if you line up someone on one of the other islands, that's a huge improvement over a doctor on the mainland.

I think your concerns about tearing are misplaced because that is something that would happen and be discovered during the actual procedure. So it would be dealt with at that time too. It's all the other stuff (clotting, restenosis, anticoagulation issues) that could take place once you're back home.
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Postby selkie » Wed Dec 29, 2010 10:36 pm

Cece, no one here even knows what it is, and the neurologists who do are talking it down.

I'm done with trying to get the procedure. My situation is such it's not possible.

I wish everyone who is young and has the money and lives close to where treatment is available, will at least get tested. Maybe one day insurance will pay.

But it's not it my cards - I won't go to California with no follow up available, all the other illnesses that are cropping up at my age, and so many stories of restenosis and complications, and which I just can't ignore.

Good luck to everyone else - may this year see more trials and concurrent treatment. May knowledge and compassion win out over profits.
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