3 Months Post Lib. Proc. In Bulgaria. WAY MORE DISABLED

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

Postby dania » Mon Aug 02, 2010 11:46 am

Maybe this should be made a sticky. I thought I was the only one that got worse after having the procedure done for the second time. It was said that some people did not see improvements but they did not get worse. And when I did and asked the doctors in Bulgaria if anybody else reported their condition further deteriorated after the procedure and they said no. One husband posted on Facebook CCSVI that his wife got worse after having it done in Egypt. She could walk before the procedure but could not after it.
My veins were originally stenosed 60%, 70% and 90%. Not only had they restenosed but the stenosis was now 99% in 2 veins and 100% in the other as the stent there had blood clots in it.
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Postby joanp » Mon Aug 02, 2010 1:26 pm

Dania

They made this thread a sticky for those that did not improve after procdure...

http://www.thisisms.com/ftopic-12342-90.html
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Postby dania » Mon Aug 02, 2010 1:32 pm

joanp wrote:Dania

They made this thread a sticky for those that did not improve after procdure...

http://www.thisisms.com/ftopic-12342-90.html

Yes, I am aware of it. But what about those of us that actually get worse? I was not aware that this could happen. And I would suspect that most would be unaware that it could be a possiblity.
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Postby NotFound » Mon Aug 02, 2010 8:26 pm

Chris1967 wrote:
In the mean time, does anyone here want to suggest what in the world I should be telling or asking my GP? His office just called my wife, my wife just called me and I had to tell her to wait until I find out on here who it is I need our GP to refer me to. Is it an interventional radiologist? I am not an avid study of all things MS or CCSVI like most on here. Im just starting to get my feet under me, so to speak, and shake some of this depression and try and help my self if I can.

~Chris


Chris, why don't you post what state you are in. Several people on this board were very successfully treated by local USA doctors, who's names they do not reveal (rightfully so).

I would hope that somebody that was treated in your state will PM you their doctor's info (maybe clearing it with their doctor first) as an exeption.

Also, there are several clinics in the States that are openly advertising their services - in Albany, NY (waiting list though), in California (at least two places - one does testing only and one does treatment)

Short answer - yes, the best would be Interventional Radiologist.

However, any vascular (cardiovascular) specialist can perform Doppler on you. Doppler Ultrasound can detect clogged jugulars. It can not check azygos, but it would a first step.

Lastly, if you have Blue Cross - you do not need a referral from your GP. You can self-refer. (At least it is so with my Blue Cross).

Hang on Chris. Things will turn around.
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Postby Drury » Mon Aug 02, 2010 8:35 pm

Chris,Vivavie and Dania,

This is such awful news.

We are all hoping for so much from this procedure and our hearts ache to hear the suffering you are going through.

Thank you for giving us this information as we know how much it has taken out of you and thank you for reminding us that there is so much to learn about this treatment and we need to know the good, bad and ugly.

Truly hope you will get the treatment you need locally and will see some improvements soon.

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Postby Rokkit » Mon Aug 02, 2010 8:36 pm

Hey Chris, I know you're doubting CCSVI right now and I don't blame you. One thing that occurred to me though, I have no idea what could have gone wrong, but the fact that you got so bad shortly after someone monkeyed with your veins supports the connection of CCSVI to MS in my mind. If they weren't related, messing with your veins a little here and there shouldn't have much affect on your MS I wouldn't think. So maybe you're on the right track, there's just some detail that's yet to be determined in your case.
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Postby ThisIsMA » Mon Aug 02, 2010 9:49 pm

Dania, Chris,

I am so sad to hear that your condition worsened after the CCSVI procedure. Please don't give up. Here are a few ideas. I am not an expert on this, these are just brainstormed ideas:

Would it be possible to go to your local hospital emergency room, tell them you had angioplasty out of country and you are having a medical emergency because you think your veins have restenosed (or have clotted) and ask them to do an MRV, or a CT scan, or doppler, or something to determine what's going on with your veins?

Or better yet, could you contact USA based doctors near you that are currently performing CCSVI angioplasty, explain your situation, and ask them to bump you up to the top of the list to be seen immediately since it is an emergency?

Top priority should be given to people who have had the procedure and are having a relapse (restenosis/clotting). Everyone else waiting to have the procedure done for the first time would certainly want to know that they would also be given this same priority if they were in the situation you are in.

You deserve the highest priority. Ask for it. Please don't give up!
DX 6-09 RRMS
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Postby Pauline » Mon Aug 02, 2010 11:19 pm

cheerleader wrote:Chris--
I'm so sorry. I hope you can be seen by medical professionals in your area. LR gives great advice.

Here's a thread you started back in January regarding going to Poland. I know this doesn't help you, but I've really been trying to make sure patients have follow-up care and that they stay home for treatment...here's what I said back in January---
http://www.thisisms.com/ftopict-9939-.html

I know I sound like a broken record (that reference gives away my antiquity), but we need to find local interventional radiologists and vascular surgeons in our own home towns. This is the only way. Bring the research to your local universities. Book conferences with IR doctors, e-mail as many IRs as you can. There will be more research coming out in the next month, which will help. wishing you the best, Chris, truly. I'm sorry.


to all reading this thread. Please , stay at home. Get treated by doctors that can follow you, monitor your INR/PT time, keep an eye on you.


Cheerleader I'm delighted to report that I have found an interventional radiologist right on my doorstep (Middle East) who is looking after me and knows exactly what he's doing. Had a doppler end of June which revealed possible intrastent stenosis since procedure in Poland April. He simply went in (last Wed) - no bruising on my leg this time and barely a mark at the catheter entry site - and ballooned open the stent as much as he could. Vein very resistant however so not much more we can do. Would say I have more or less got back my original improvements so long may it last...

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Postby dania » Tue Aug 03, 2010 4:56 am

Rokkit wrote:Hey Chris, I know you're doubting CCSVI right now and I don't blame you. One thing that occurred to me though, I have no idea what could have gone wrong, but the fact that you got so bad shortly after someone monkeyed with your veins supports the connection of CCSVI to MS in my mind. If they weren't related, messing with your veins a little here and there shouldn't have much affect on your MS I wouldn't think. So maybe you're on the right track, there's just some detail that's yet to be determined in your case.

I agree with you as I had the procedure, did get some improvements but they disappeared and I got worse. I went back and had it done again. They found that all 3 veins had restenosed but now they were 99% closed compared to the original stenosis of 70%, 80% and 90%. So it was no wonder I was feeling worse. For me it makes perfect sense.
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Postby vivavie » Tue Aug 03, 2010 7:16 am

Thank you Chris for your soothing words. I really had a break down this week end. Thankfully my son is away for few days so it did not affect people around me. That may also be the reason, i did not have to put on facade... all the feelings bubble up...

MS is hell! When I had cancer, you do what you have to do then you either get better or die! MS until ccsvi was just a slow drag with no hope. Like you I acted. I did what I had to do to get better. Now I feel helpless because I am doing worse and can't get treated. I tried contacting and informing as many doctors as possible in Quebec. I used the Dr S symposium and article to try to get their interest. This took a lot of time and ENERGY.

After I read your reply I had a good loooong cry which I never allowed myself since the first 15 minutes after dx for cancer. This morning I pick up myself again. Thank you to have taken the time and energy to answer.
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Postby vivavie » Tue Aug 03, 2010 7:30 am

[

Chris, why don't you post what state you are in. Several people on this board were very successfully treated by local USA doctors, who's names they do not reveal (rightfully so).

I would hope that somebody that was treated in your state will PM you their doctor's info (maybe clearing it with their doctor first) as an exeption.

Also, there are several clinics in the States that are openly advertising their services - in Albany, NY (waiting list though), in California (at least two places - one does testing only and one does treatment)

.[/quote]

Notfound: In June when I could not find anybody to treat me in Quebec I applied everywhere. The waiting lists are very loooong. I exchanged emails with US IR, answer::"If your stent is blocked and it is not addressed quickly, then it may not be possible to open."
I really appreciate that he took the time to answer But I still have to wait! That answer really hit me hard. QUICKLY??? what am I supposed to do???

I would prefer not to go back oversea to have proper follow up. Back in March there was not too many places in America. If anybody has a name anywhere on the East Coast other than Albany and Florida (already on) it would be appreciated.
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