That's it! my CCSVI journey is over.

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

That's it! my CCSVI journey is over.

Postby vivavie » Tue Dec 21, 2010 2:33 pm

Last Monday was my birthday and I was hopping for it to also be my RE-birth... but no!! nothing happen!!

This was my FIFTH and LAST procedure - some of those venograms were not to treat CCSVI but to repair complications: blocked stent, thrombosis, collapsed vein.

I said before that I could not end my CCSVI journey while feeling undertreated. My IR was always reluctant to watch Dr Sinan presentation but the week before he did and he picked up some tricks... I have no more excuses hence no more hope for this treatement, it just does not work on me! Everything that could be done was done:

Dec 13th:
clean up my 4 stents in LIJ and angio 12mm (even if stents are 10 mm)
Azygos: 2 waists were angio with 10 mm (a kink was repaired in a previous procedure)
RIJ: angio 14mm high pressure
In my specific case those are very big ballons because my veins are very small and stenosed by radiation of previous tongue cancer.
My LIJ was 5 mm before it collapsed down to 1mm (the size of the catheter) they increased the size to 10mm with the stents!

I did everything by the book, I stayed in bed at the hotel most of the time for 4 days to make sure to have good blood flow thru the jug.

Do I have some regrets? NO, for the past 10 months I did not think about death everyday! Now people around me know I did everything possible, I did not give up.

One thing I don't understand: how come I never got back the "moderate" improvements I experienced for 6 weeks in April after my 1st procedure in Poland? They were not placebo, I would NOT unconsciously regulate my bowels, bladder, saliva, body odor, skin complexion! I did not know then that they were related to ms. I also had no more headache, warm hands and feet. The only improvement that stock is no more hip compensation when tire or after sitting or exercise.

RRMS Dx 2000
Major symptoms: PAIN 24/7- FATIGUE - BRAIN FOG - daily Headache
+ all the nagging symptoms: insomnia, bladder, bowel, speech, saliva, swallowing, noise sensitive, etc.....................

Now what???
I can't even bring myself to read the tread: "how come it works so fast"
S
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Postby Lyon » Tue Dec 21, 2010 3:14 pm

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Re: That's it! my CCSVI journey is over.

Postby vivavie » Tue Dec 21, 2010 4:59 pm

Lyon wrote: I'm not sure how anyone could afford five procedures.

I know it's going to be hard but try to have a good holiday season.


Thank you for your concern Lyon.

As for paying for those procedures don't forget that the 1st ones were around 80-100k, now it's more 5 to 12K.

I am very lucky to have a group of 7 friends since grade 4 (it pays to be nice to your friends!). We started raising money 7 years ago for ms, we are pretty well organized. Would you believe that we do an annual monster garage sale that raises around 17 500$. We also have other activities. So far we raised enough to pay for half of my expenses and I used my frequent flyer points to go to Poland. We even managed to give a good amount to Angioplasty For All!

It is very humbling to have people dedicate so much time and effort for my well being!
I am forever grateful.
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Postby marcstck » Tue Dec 21, 2010 5:02 pm

So sorry to hear of your frustrating experiences. You've certainly been a good soldier.

Try to keep in mind that there could very well be a significant portion of the MS population for whom CCSVI plays very little role in their disease. MS is an extremely heterogeneous disease, and might not even be a disease at all, but rather a syndrome. This means that it is likely a collection of conditions that share some common symptoms and diagnostic criteria, but stem from different causes.

There is certainly a "silent minority" out there who don't post on websites or Facebook about the lack of benefit they received from CCSVI treatment, and most of these "failures" aren't due to restenosis. Through my blog, I receive a steady stream of e-mails from people who have had disappointing results, as well as reports of startling improvements.

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…
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Postby Blaze » Tue Dec 21, 2010 5:28 pm

Oh Vivavie, I'm so sorry to hear that. As you know, I was concerned we hadn't heard from you in a while.

I knew you were scheduled for a fourth procedure. I didn't realize it was five (Yikes!). That must be a record. You have been a brave soldier, and I completely understand why you are saying "That's it!" I don't think I could have hung in as long as you did--physically, emotionally or financially.

I hope you will keep in touch with us and let us know how you're doing. CCSVI is still in its infancy and maybe some new developments might be able to help you in the future--perhaps even right here in Canada. I'll be thinking of you.

Joyeux Noel et Bonne Annee, mon amie.
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Postby THEGREEKFROMTHED » Tue Dec 21, 2010 5:34 pm

VIV,
first of all Happy belated B-day! I am truly sorry for the fact that the present you were hoping for never came. As the Kamikaze and I can attest the frustration of not reaping any benefits from the procedure can be devastating. Personally it has taken me 6 months of highs and lows and continued progression and finding myself in some dark places before I have been able to get over the "shock and awe." The excitement pre-procedure must undoubtedly be kept in check as the post-procedure outcomes are so scattered across the board.

I give you some major credit for tackling 5 procedures. If that isnt indicative of the sentiment of wanting to feel better than I dont know what is. As the articulate and brilliant Kamikaze has stated we have a ways to go and years from now the procedure may take on a completely different technique. I realize that does not help you now, but dont stop fighting. there is not proof that CCSVI is the cure at all nor the cause, so keep trying and keep fighting and you just might do that one thing that hits the bullseye.

Its easy to find all the excitement surrounding this procedure but believe me there is an entire other side that is not nearly as often reported because we want to believe this is it. Keep the faith and who knows maybe you will get that "Christmas Miracle."
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Postby NotFound » Tue Dec 21, 2010 6:07 pm

Vivavie, I have no wise words to share, but please accept my hugs, well wishes and Holiday greetings.

Not seeing results after two procedures in my case is highly disappointing, I can only imagine how it must feel after five.

A gentle PS... Did you get tested for Lyme by any chance? Headaches, noise sensitivity, all ring a bell... maybe?
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Re: That's it! my CCSVI journey is over.

Postby Lyon » Tue Dec 21, 2010 6:25 pm

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Re: That's it! my CCSVI journey is over.

Postby Cece » Tue Dec 21, 2010 6:42 pm

vivavie wrote:One thing I don't understand: how come I never got back the "moderate" improvements I experienced for 6 weeks in April after my 1st procedure in Poland?

Six weeks is a long time to have had those improvements too. I don't have an explanation for that, do you have any guesses?

Everyone else has said it better than I could, but I too am sorry that after so much effort you have not gotten where you wanted to be.
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Postby Trish317 » Tue Dec 21, 2010 7:27 pm

My thoughts and prayers are with you....
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Postby blossom » Tue Dec 21, 2010 10:24 pm

you are one tough determined human being. i did not have the results i had hoped for with my procedure and at "this point and time" i'm not ready to try it again. but, i did not experience 6 wks. of improvements, if i would of i would have wanted it back like you do.

i agree that if you haven't been tested for lymes by a dr. that is a specialist in that field then you might want to look into it. also, dr. flanagan's thread here on tims cannot be ignored and he really understands blood flow. then there's ctos. so many things we are finding out and so many unnowns. it can all make a person almost nuts.

if you went through this 5 times you don't sound like you are one to give up easily. so, keep in mind that if you do start to sink a little in that "black hole" as i call it and it is easy to do when we are dealing with these symptoms they have labeled ms, you start looking for the light and move on. it is good to hear you have people around you that care as much as they do. this is a weapon against this monster they call ms that will get you through.

so, you little tuffy and the most determined person i've read about on here, you have my most heartfelt best to you. if anyone can pull out of this and find help, you can. no stone unturned one shoe does unfortunatly not fit all.
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Re: ccsvi

Postby concerned » Tue Dec 21, 2010 10:30 pm

blossom wrote:i also, dr. flanagan's thread here on tims cannot be ignored and he really understands blood flow.


Did Dr. Flanagan's training in Applied Kinesiology and TCM aid in his scientific explorations of MS?

If so, I'd be highly skeptical.
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Postby eric593 » Tue Dec 21, 2010 10:54 pm

Why does your CCSVI journey have to be "over"?

Why don't you give your body time to heal and give the doctors time to learn more. The rate of knowledge accumulation, as Dr. Sclafani said in his interview, will be exponential.

Rather than being "over", how about just not rushing back in but giving the doctors time to reach a place where they have better answers and procedures?
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Postby blossom » Wed Dec 22, 2010 1:03 am

i don't want to take away from why the person that started this thread and her feelings. and i was only wanting her not to give up not even on ccsvi. that's why i noted i would not do it again "at this point."

but, concerned , first i want to thank you. by you posting your thoughts and questions like this i think it keeps the ball rolling. maybe not in your court, but none the less the ball keeps rolling.

myself, i have symptoms of a disease they put in one bucket and with all the science and research and written papers yada yada, they have not come up with a leg to stand on. i personally have aways felt that different things cause these symptoms they call ms and there would not be a one and only cause or cure. i wish. of course i have no science behind me but i got one thing science does not have--i have symptoms they call ms. so, myself, and i think others are looking for help and relief from these symptoms they call ms.

dr. flanagan may not have the so called scientific proof that you so badly yearn for but i would put him up with the best of them when it comes to understanding blood flow and the spine.

in answer too, is that he just as others are treating "symptoms" science has dubbed ms. just as the doctors treating ccsvi are opening veins because it helps the "symptoms" of a disease that science named ms and
put us all in that bucket.

i agree that lots of research is needed but not the same old hum drum and drugs that there are plenty of scientific work behind and enough written papers to circle the world and they have not cured the symptoms they choose to call ms.

so, ccsvi is moving forward, thoughts and eyes are opening to different avenes for help the closed doors of ms are opening. and, if i can find anything that will help with my symptoms and the science "has not yet caught up"--Frankly My Dear, I Don't Give A Dam!!
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Postby Algis » Wed Dec 22, 2010 1:28 am

I like what you said blossom :)

Be well!

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