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)
. 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.