That's it! my CCSVI journey is over.

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

Postby pklittle » Wed Dec 22, 2010 7:20 am

Vivavie, you surely tried, and I for one appreciate your post.

Bless you and happy holidays.
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Postby Cece » Wed Dec 22, 2010 9:55 am

When I see the title of the post, I flash back on things that Cheer has said about this being a lifetime commitment. Once foreign objects have been introduced into the veins, there is a need to keep tabs on that through follow-up visits and possibly future cleaning-out or treatment of clots. Not everyone who gets on this train will require 5+ venoplasties but maybe vivavie is not the only one?
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Postby prairiegirl » Wed Dec 22, 2010 9:57 am

marcstck wrote:Also remember that we are very early in the game as far as CCSVI treatment goes. There are likely more vessels involved than just the jugulars and azygos, and the techniques and tools used in treatment are still in the embryonic stages of refinement. Procedures done a year from now could very well look extremely different than those done today. This is an entirely new field of investigation, we have barely scraped the surface, and can only guess at what lurks below…


I do hope that there will be answers for you down the road, Vivavie. So sorry for what you have gone through; wish you the very best!
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thank you!

Postby vivavie » Wed Dec 22, 2010 1:14 pm

Thank you everybody for your support and your good words!
At this point I am more frustrated than depressed (yet). I know that I am not the only one without results and least I am lucky to have been treated before it was too late and my veins shut tight irreversibly.

I figured my story was worth telling for those who start that journey thinking it is a one shot deal. Know that multiple procedures may be required and be prepared to spend a lot of money!

I choose to have the 1st procedure and the last, the 3 others: candy wrap stent stenosis let me in a worse state than pre-procedure with new symptoms, the collapsed vein made me feel horrible - I did not leave my bed for 3 weeks, the thrombosis was a no brainer.

People have to know it may cost them way MORE money than their budget for one procedure or they may end up WORSE than they are!

As for Lyme disease, I was tested in Poland. Dr Kostecki rejected around 5% of patients because of positive test.

I read there are different tests for it, it may be worth checking again.

Question: my MRI show 10 big lesions + zillions of small ones (like sky constellation at night) + lesions at the base of the neck + lesions lower spin. Is that possible with Lyme?

Again thank you,
Joyeuses Fêtes à tous!
S xoxo
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Postby Lyon » Wed Dec 22, 2010 2:02 pm

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Postby eric593 » Wed Dec 22, 2010 2:10 pm

Vivavie,

Who were you treated by 5 different times? 5 different doctors?
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Postby vivavie » Wed Dec 22, 2010 3:30 pm

Lyon: Hum, I am starting to see another side of you (that I prefer).
I wasn't sure how to interpret your comment: " I'm not sure how anyone could afford five procedures. " It pinched me...
Thank you, the article seems interesting, I will read it tonight.
Bon Appetit!

Eric: I was 1st treated in Poland in April, 4 other procedures in the states by the same doctor.
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Postby dania » Fri Dec 24, 2010 8:59 am

Vivavie, I think I know how you feel. I had the procedure done twice (in Bulgaria), I got great improvements with the first but they disapeared after a week. With the third attempt. Dr Siskin said everything was now blocked 100% and there was nothing he could do. I am trying one more time with Dr Arata, January 19. He thinks he can help. Hope he is right. Our stories seem very similiar. The frustration and knowing what I know now I would not have started this journey as it has made me more disabled than ever.
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Postby Lyon » Fri Dec 24, 2010 9:35 am

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Postby CCSVIhusband » Fri Dec 24, 2010 10:56 am

Lyon wrote:
vivavie wrote:Lyon: Hum, I am starting to see another side of you (that I prefer).
I wasn't sure how to interpret your comment: " I'm not sure how anyone could afford five procedures. " It pinched me...
I'm pretty dense so it doesn't come to mind how my question could have been taken badly but it wasn't meant that way.

I don't consider my wife and I poor but with house payment, putting 2 kids through college and everything else? If she wanted liberation WE WOULD find some way to do it but if there were problems or if it needed to be done five times, regardless of our desires and convictions more than once would be financially beyond our means is all all I meant.


Insurance covers this procedure in the United States, and liberation can happen in Michigan, Minnesota, Illinois, Indiana ...

Stenotic veins are a known condition ... a condition doctors and healthcare accepts as needing to be treated.
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Postby vivavie » Fri Dec 24, 2010 4:06 pm

Dania, what a FIGHTER you are!
I do feel worse now than pre-procedure but much better than during those 3 weeks with a collapse jugular. It was horrible! I know that it is your situation for a long time now! I can imagine how hard it must have been to get the courage and the energy to do the research work, planning, etc... to find someone that will help you!

The only consolation in this ordeal is that it is with complicated cases like us that the CCSVI knowledge will progress faster (provided that the doctors share the information and the others are receptive!) Some doctors are more conservative...


I will be thinking and sending positive energy your way. Good luck!
Please, do keep us inform.
Sylvie
Big Hug!
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Postby Brainteaser » Fri Dec 24, 2010 6:51 pm

vivavie - see jugular's report. Was your IR Dr Arata?
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Postby garyak » Fri Dec 24, 2010 7:26 pm

vivavie, it is significant that you posted your experience here. I have had two procedures now and have had a good 3 weeks since my second but after only about 2.5 weeks of gains after my first I can only hope for my current improvments to remain a lot longer. All the best to you through these holidays and your loved ones.
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Postby vivavie » Fri Jan 14, 2011 12:18 pm

ONE MONTH UPDATE

Compare to April (1st procedure) I feel and look 25 years older but compare to August when jug collapse after opening the candy wrap stenosis around the stent I have some improvements.

I used to read 6-7 books a month, between aug and dec I have read ONE pocket book! This is back, I am reading about a book/week - brain fog clearing up??

I had develop a new symptom: had numbness+ pins/needles, quit painful. That is gone too.

My sleeping patern is now even worse than pre-Dec but I am now DREAMING every night!!! Which has not happen in at least 5 years.
It gives me hope, the only problem is that they are nightmares: screaming, yelling, fitting, disgusting stuff also. I better stay away from a psychanalist for a while. :wink:

I had to skip my one month follow up, I could not gather the energy for the 7 hrs drive... I also am recovering from a horrible 2 weeks jaw neuralgy but that is another story.

I take this opportunity to wish good luck to Dania on your upcoming procedure with Dr Arata. All the best!
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Postby dania » Fri Jan 14, 2011 12:41 pm

Thanks Vivavie. I sure hope this improves my quality of life. I am not optimistic as this will be my fourth attempt. And I, like you, have become far more disabled.Someone I met in Bulgaria, who had great improvements, that lasted about 4 months is having done today by Dr Arata.
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