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:
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.....................
I can't even bring myself to read the tread: "how come it works so fast"