ozarkcanoer's liberation

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

ozarkcanoer's liberation

Postby ozarkcanoer » Tue Aug 24, 2010 4:28 pm

It has been 1 week since my liberation in Baltimore on August 17. I loved Dr H and the whole crew. I have hesitated to post before this because I have seen no improvements from the procedure and I want to be honest up front. I wanted to wait awhile and rest to see if it might take a little time, but sadly no. The procedure was a complete surprise to me because I was expecting that I would get just 1 stent, but I have 2. Both of my jugular veins are stented high up by my ears. Dr H used my posts from my root canals as a way to position the stents, would you believe it, LOL. I was wide awake during the procedure watching it on a monitor provided for me and I had my glasses on. So the images are these ghoulish pictures with glasses !!!. Dr H did my right IJV first because that is the one found by BNAC. Sure enough there was narrowing and multiple collaterals and Dr H said he was going to place a stent. And he did and it hurt like hades. But I got some happy juice for that. Then on to the left. It was a mirror of the right... the same exact situation with narrowing and collaterals. This one didn't show up on the BNAC doppler or MRV. HMMMMM. Anyway I got another stent but this one didn't hurt very much. Now on to the azygous. I just knew there was nothing wrong there so I was relaxing. Then I heard Dr H say he wanted to stent my azygous !!!! He showed me where it is twisted !!!! Golly gee I am a mess. A couple of minutes later he came back and said he decided not to stent the azygous after all. But he did balloon it. All done. I met with him the next morning and then we started the long 2 day drive home

I came home with 2 DVDs with movies of the procedure and movies of the IVUS.

Now the results. My major symptoms are atypical. I have double vision, major pain in my head, burning, piercing, aching, tender pain that is chronic, and my mouth and tongue burn almost constantly. I haven't got a clue if this is due to MS. I have 40 lesions on my brain and my O bands are 8. So far none of these symptoms have improved since the procedure.

Even with these results I do not regret having done this. Maybe someday all this CCSVI research will lead to new understanding of the importance of blood flow out of the brain and other treatments.

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Postby cheerleader » Tue Aug 24, 2010 5:19 pm

Dang, OC...
I know you were hoping for a bit of relief. You've had quite the treatment experience! Interesting that the doc found something in your azygos, too. You really were "a mess." And with those 40 lesions, you've probably had MS for a lot longer than the time of your diagnosis. You and Jeff were both dx later in life with lots of lesions.

Keep posting. It's so important that everyone knows the reality---that some patients do not get that instant relief, and maybe no relief at all. I still am hoping there's more to come for you, but no crystal ball.
take care---
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby L » Tue Aug 24, 2010 5:30 pm

Hoping you see improvements soon.
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Postby MaggieMae » Tue Aug 24, 2010 5:35 pm

Give it a little more time. You have been through a lot. I've read on this forum where others have not seen improvements until weeks or months later. There is still hope.
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Postby Rose2 » Tue Aug 24, 2010 5:40 pm

Liberated! Congrats! Please be patient. I have had things improve much later and still notice new things. REST. Relax. It is so hard to not be anxious, I KNOW! :roll:
So glad you wrote! Rose ;)
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Postby garyak » Tue Aug 24, 2010 6:51 pm

I hope your patience is rewarded by SOME results - very best of luck and thanks for your update.
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Postby Cece » Tue Aug 24, 2010 8:18 pm

Thanks for sharing even though it's not what we were all hoping for you. I would hold out hope for long-term improvement.

I just reread and you have movies & ivus! Does it show the collaterals disappearing after the procedure?
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Postby blossom » Tue Aug 24, 2010 8:36 pm

hope you start feeling better soon.
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Postby elyse_peace » Tue Aug 24, 2010 10:35 pm

Great news!!! :D
I'm so glad you have been treated. It sounds like your doc is wonderful.
Sorry you cannot feel improvements yet. But YOUR BRAIN is undoubtedly happy about the added oxygen. I'm hoping your benefits will come soon.
Healing thoughts, Elyse
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Postby Johnson » Tue Aug 24, 2010 11:54 pm

Hi Ozark,

I'm so glad that you had the procedure, but somewhat nonplussed that you did not find some relief. Do give it some time. Costumesnational has found that things improved after seemingly no benefit, and so I hope is the same for you. The high stenoses, such as you have, are the ones that make me wonder. It seems that it is the downstream that often affects the higher effects.

Will you go for a follow-up? Perhaps, down the road they will look at the azygos again. I've had "a bulge", "a bend", a bifurcation, and I suspect something amiss there.

I fervently hope that you have some improvement in short time.

My name is not really Johnson. MSed up since 1993
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Postby AlmostClever » Wed Aug 25, 2010 3:25 am


Hoping you get better with time!

If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Rokkit » Wed Aug 25, 2010 7:39 am

OC, take it easy for a few days. Most of us who got the high up stents had really bad pain for a week or two. I couldn't even sit at the computer without excruciating pain coming on - I had to go lay back down every time.

Your case is quite interesting to me. There's been so much talk of the problems up by the ears being secondary to lower stenosis or valve problems. While that is probably true for a lot of cases, it's not true for all. I'm confident in this day and age and with the help of IVUS, your doc would have found those issues. I assume you are like me, when the upper stenoses were opened, the collaterals went away. To me, that indicates the primary issue was addressed.

Also, don't forget azygous ballooning was very effective in Zamboni's research so you are probably in a very good position in terms of your treatment being successful long term.

I'm sorry you don't feel better yet. Hopefully improvements will come.
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Postby Blaze » Wed Aug 25, 2010 7:51 am

Thank you SO much for sharing your experiences with us--even though it wasn't what any of us wanted to hear for you.

We are all learning from the brave pioneers as we make decsions for ourselves.

I hope you may get some delayed improvements. Hang in there and keep us posted.
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Postby prairiegirl » Wed Aug 25, 2010 8:26 am

Thanks for posting your results to date, oc. Hopefully you will see improvements in the next while. Wish you all the best...
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Postby MS_HOPE » Wed Aug 25, 2010 10:18 am

Ozark, many thanks for posting your results so far, even though they're disappointing to you (and us). Please continue to take good care of yourself and be hopeful for positive changes to come. It sounds like your brain has to heal from damage incurred over many, many years. Good nutrition, moderate exercise as you're able, and a positive outlook will all help. Best of luck to you, and let us know of any changes, OK? Thanks again.
CCSVI:  Making Sense of MS
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