Details of my procedure from July 27th... Bulgaria

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

Details of my procedure from July 27th... Bulgaria

Postby Taps » Tue Aug 03, 2010 4:04 pm

So here goes… (btw I’m RRMS, dx’d in Jan 2009, I suspect I’ve had it for 10 years though...)

I was slated for the 27th and after a crazy day of "Hurry Up and Wait!!!…" they slated me for 8AM the next morning (i.e. the 28th) 8O . I was both relieved and sad. Relieved that I could finally eat something because I'd been fasting all day but sad to not go through the procedure and live with another day of debilitation curiosity.

After numerous delays even on the 28th, there was finally hope at 3PM and after some clever thinking and escalation to management at the hospital by my childhood friend of 33 years - Johnny. I managed to finally get into the operating room and here goes...

My left jugular was 95% blocked, right at 75% and Azygos was at 70% as well.

All three veins responded well to ballooning by procedures end - no stents used. However, the left jugular was EXTREMELY difficult for Dr. Petrov to work with. For the left I had 2 areas of stenosis, 1 area of flattening, and 1 twisted area.

This was scary to hear when he mentioned (while still on the table). Keep in mind no sedatives are used during this procedure (unless requested). Just IV based pain killers and freezing at puncture point.

Procedure typically takes 1 - 2 hours. Majority of people I spoke to there were a little over 2 hours and someone had been in there for almost 5 hours. This caused quite the backlog as well apparently month end at Tokuda is a hectic time on its own (due to other Cardiac based procudures/surgeries). My procedure took almost 3 hours to give you an idea of the havoc in the veins. The procedure does indeed cause discomfort as the pressure from ballooning takes place.

After some rest at night (post procedure - still very uncomfortable as I could only lie on my back), Dr's came into the room at about 10AM and performed an Ultra Sound of treated veins. All the Doctors had a real look of concern after scanning the left jugular (the right and azygos were fine). The left had COMPLETELY re-stenosed again.... You can imagine how I felt when I got this news... 

Long of the short is, Dr. Petrov (who absolutely demands nothing but PERFECTION out of his work) wanted to balloon me again and most likely insert a stent/stents.

I REFUSED. Here's why...

A) I was beat :( . The procedure took allot out of me... and I mean A LOT.
B) As much as I didn't care about potential complications of stents, I was more worried about a 1 day recovery from literally 2 CCSVI ballooning procedures to one vein and then returning home so quickly without adequate recovery.
C) I already felt quite a few improvements a couple days after (walking, fatigue, digestive system, lack of "MS hug", brain fog etc.)
and last and most importantly
D) I simply don't trust my own veins. I trust the procedure but not my veins. Logic has it that if I could stenose as easily as overnight, what would make me think my stubborn left vein wouldn't stenose right over a stent? What about clotting? What about my other (right sided) vein? Could that restenose immediately when I got back to Canada? Who's going to treat this back in Canada if an emergency arises ? OK - decision made.

In the end I thought, "Let me show my family and friends how well im doing thus far". If I need to come back one day in the future, I most certainly will - but only after i've healed and evaluated. Dr Petrov also agreed with this approach. The team there - Dr. Grozdinski, Martina, Dr. Petrov, and all others are nothing short of extraordinary.

I was both physically and mentally EXHAUSTED. I needed a stiff drink which was conveniently located at the Greenvilled after discharge.

It’s been 5 days since angio and I’m getting quite positive results for having set an expectation of only trying to halt this disease and also having 2 out of 3 veins truly functioning.

To all I met: I will contact each of you soon! You folks are more than family to me now…

Dania: Wishing you the best. I truly am sorry to hear you going through your issues. Prayers and positive vibes for you from all around.
Last edited by Taps on Tue Aug 03, 2010 7:43 pm, edited 1 time in total.
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Postby cheerleader » Tue Aug 03, 2010 4:54 pm

you listened to your intuition, and may have made a very wise choice. I've written on here that one of Jeff's jugulars will not remain open. Even with stenting and other angios. He now has one repaired and functioning jugular that is taking most of the flow, and one collateral that works on the other side. He no longer has reflux. That may be the best he can do. Some of these veins may be beyond endovascular repair. Some may need surgical intervention. We just don't know what we do not know.

Please rest up, take care of yourself, and keep us posted.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Re: Details of my procedure from July 27th... Bulgaria

Postby Trine » Wed Aug 04, 2010 7:33 am

Thanks for sharing your experience. It would be tough for me to travel that far and still not have all insufficient veins fixed, but I think that was a very wise decision. At least you know that option is there for you.

Wishing you continued improvements.
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Postby Rokkit » Wed Aug 04, 2010 7:47 am

cheerleader wrote:I've written on here that one of Jeff's jugulars will not remain open. Even with stenting and other angios.

Cheer, do you think it's possible Jeff has an as-yet undiagnosed issue with a valve or something lower down which is causing flow issues upstream, resulting in additional collapse of the vein?
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Postby sbr487 » Wed Aug 04, 2010 7:47 am

Taps, that was a wise thing to do. This procedure should give you enough improvements to wait until enough research info emerges and at that point you can probably take much more informed decision. 2-3 years down the line if stent is what it takes to fix an issue, I will go for it. But I wont do that today .
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 Taps » Wed Aug 04, 2010 6:01 pm

Thanks to all for the replies...

I appreciate the support in stating it was the wise thing to do.

We'll see what the future holds for CCSVI - it has no choice but to be accepted mainstream. It's just a matter of time as this procedure is indeed a REALITY.

In my specific case, I have no idea why the vein would restenose the morning after... This could possibly be a birth defect in the first place. Who knows.
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