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


Postby turbotaguy » Tue Sep 28, 2010 7:30 pm

After a long long wait my liberation appointment date has arrived. My procedure is tomorrow at noon. I am in my hotel room now trying to relax, thinking about what will happen tomorrow.

Thanks to everyone who has done this before me and written up their experience. Based on reading tons of posts I have a pretty good idea of what to expect.

I will share my experiences and observations as I go... I'm so excited, I know I won't sleep tonight!
Last edited by turbotaguy on Wed Sep 29, 2010 6:55 pm, edited 2 times in total.
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Postby sbr487 » Tue Sep 28, 2010 7:43 pm

good luck ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Cece » Tue Sep 28, 2010 7:56 pm

best wishes!!!
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Postby Johnson » Tue Sep 28, 2010 11:51 pm

You will love it!
My name is not really Johnson. MSed up since 1993
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Postby CureOrBust » Wed Sep 29, 2010 4:36 am

good luck.
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Postby turbotaguy » Wed Sep 29, 2010 6:05 am

I'm in my hotel room getting ready to leave for the hospital in an hour or so. I am so nervous and excited I can't really even think.

Here are my current MS symptoms as I sit here today:
Dizzy - always there
Buzzing sound and feeling - always there
Slight balance issues - comes and goes
Brain fog - always there
Reading & Concentration issues - comes and goes
Sleeping issues - I don't sleep well - always there
Numbness @ both hands - comes and goes
Slight gait and walking issues - comes and goes
Minor vision issues - spots and "bugs" - comes and goes

I'll post my progress as I go. I have to be at the hospital at noon. My procedure is at 1pm.

Thanks for the well wishes!
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Postby IHateMS » Wed Sep 29, 2010 7:47 am

best wishes
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Postby turbotaguy » Wed Sep 29, 2010 2:35 pm

The procedure is done and I am back in my hotel room. Here is a quick run down of what happened today. I know many have posted, but I'd like to share in case it can help someone:

My procedure was scheduled at 1pm today. I was told to get to the hospital at 12:00 for check in. I got there right on time and did the usual check in with the radiology department. About 12:35pm a nurse came out to get me. She brought me back to the small room that will be home for the day. I changed into my gown, locked my clothes in a locker and was ready for liberation!

A nurse practitioner came over to run through the procedure and to talk about my history and expectations for outcome. She gave me a good deal of information on the history they have collected so far, her opinions, and even recommendations for dinner locations. She was very nice and professional. The on shift nurse came over, got me comfortable, and put an IV in my hand.

The doc made it over shortly after to run through the procedure and answer my questions. She seemed very comfortable with the procedure and very confident. She made me feel at ease as did all the other folks that I met here. The doc saw that I was a bit nervous and she offered some early pain meds to calm me down - I accepted.

They brought me into the OR and everyone introduced themselves. Very nice, calm, and friendly people. They made me comfortable, set me up on the table with blankets, etc and shaved my groin area. They gave me go juice for pain through my IV and told me that I would be aware, but not care. She was right. I was aware of just about everything, but didn't care. I do remember saying "I'm watching you.." "I'm aware of everything....should I get more drugs??" It was just a crowd of people in my groin area pushing and pulling stuff into the vein. Not exactly a party - somewhat uncomfortable. They did give a local at the site where they got into the vein. Once they were finished I was brought back to my room. I was out of it but tried to ask questions about how it went. My family was waiting in the room too.

They kept me laying down in the room for an hour checking the groin wound every 10 minutes or so. They set me up after an hour and brought dinner. I'm vegan and they actually put together a thoughtful vegan meal for me. The doc came in and told me that the Az veins were good, but I had severe narrowing in both jugulars near the collar bone. They angio'd those areas with good success. Both areas had started to grow collateral small veins to compensate.

The nurses saw how much I enjoyed the vegan meal and order another helping for me. I finished up, talked to all the nurses and thanked them. I need to go back tomorrow for an ultrasound to verify that both areas are still open. I was able to get out with no stints.

Overall, I don't notice any improvement immediately OTHER THAN my head is completely clear. The brain fog that has been so back for me in the past is much much better. I feel "different" also, I can't explain it. I will wait for a couple of days to see how it goes.

Thanks again to all that did this ahead of me. I did a lot of research before I decided to do this procedure. Fortunately for me many people did it before me and shared their stories. Much appreicate.

TURBOTAGUY is liberated!
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Postby David1949 » Wed Sep 29, 2010 3:14 pm

Congratulations and good luck to you! :D
Last edited by David1949 on Fri Oct 01, 2010 7:53 am, edited 1 time in total.
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Postby Vivianne766 » Wed Sep 29, 2010 4:28 pm

Thanks for the update and good news. Can't wait to hear about new improvements soon.
I'll be liberated by the same doc. in 2 weeks.
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Postby AlmostClever » Wed Sep 29, 2010 6:03 pm


Now REST!!! REST!!! REST!!!

If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby ClaireParry » Thu Sep 30, 2010 8:29 am

Thats great news!! Well Done!
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post procedure

Postby Kuly » Thu Sep 30, 2010 10:02 am

had my CCSVI done in Poland aug 09, be patient and depending on length of time you have had MS be happy as symptoms slowly improve. 8)
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Postby shoosh » Thu Sep 30, 2010 2:06 pm

Congratulations! Rest, drink plenty of water. And take things easy. I am finding that the signals that I am over doing things are not the same or as intense (dizziness, cog fog)....all the best to you :D
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Postby blossom » Thu Sep 30, 2010 4:03 pm

the best of everything to you.
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