Quote:
Originally Posted by Judy
Thank you so much, JM, for sharing your experience with us. It does sound REALLY PROMISING!!! I'm going to take you up on your offer to answer some questions:
1. How many years have you had MS? --> Officially diagnosed January 2009, but in retrospect have had symptoms since at least 2000. Believe it was triggered when I got mono in 1997. I always said that it was like I never fully recovered from mono.
2. What type was it when you had the procedure
done? RR...SPMS...PPMS??? ---> I was RRMS but I suspect I may have been trending into SPMS....
3. Did your insurance cover everything? --> So far my insurance (CDN) has covered squat. They are still adjusting my claim. It cost my about $15,000 between travel, hospital, meds, etc.
4. Did you have any bad side effects? --> My "bad" side effects were a really sore neck for a week after (pain radiating from the stent), and a month or two of some shoulder pain. All was resolved with massage therapy and accupuncture. Compared to the improvements I got, I was more than happy to accept those side effects!
5. Did the procedure hurt? Can't stand much more pain here. ---> Yes, it did hurt, but it was nothing I couldn't breathe through. Because my stenosis was fairly close to my ear, every balloon infection felt like ear infection pain.
6. A big one I should have put at #3, were you walking, getting around, etc., or using a chair when you had it? If a chair, can you now walk? ---> I was ambulatory, but using a cane much of the time as my left knee often wouldn't support my weight. My left leg used to often drag badly as well. In heat or when I got really tired the cement block action also happened
I appreciate you taking the time to answer these questions for us. Being spms and in a chair, I'm ready to try just about anything as long as it does no harm. Where did you have it done? ---> I had my procedure at the Tokuda Hospital in Bulgaria. It's a Japanese owned private hospital.
Trust your wonderful results continue and more appear in the future. Take care......  |
I had 75% stenosis in my left jugular vein. Repeated balloonings (30+) wouldn't open it so I ended up with a stent. I had results on the table. It felt like someone poured warm water down my legs. Cog fog disappeared immediately, like switching on a light. Color came back to my hands and my face immediately. Fatigue lessened dramatically within a day or two. Muscle spasisity is gone. No more myclonus/jerking. Bladder urgency is pretty much gone. Have not used my cane once since the procedure!! Feeling in my fingertips (didn't realize it was gone!) came back a month after. I dream at night now - never did before. I wake up refreshed now. Almost never even need to nap since about three months after. Word recall started improving within in days and is now pretty much the same as a normal person. Rate of speech improved within a day or two. Parasthesia is gone. No more vertigo!!!!
Honestly, it's been a dream come true. I had just resigned myself to the fact that I was screwed and then this came along! I won't say I'm "cured", but I can forget that I have MS for the most part. Now it's back to annoyance stuff instead of disabled and utterly miserable like I was before. I can't even let myself use my handicapped parking placard now because I feel guilty.
I do still have to make sure I don't let myself run down though. If I over do things for a few weeks I do start getting some mild dizziness, mild fatigue and some optic neuritis. Considering that showering used often be the only thing I could do in a day, this is a 1000% improvement.
I am off ALL medications except my low dose aspirin and my vitamins. Stopped taking my copaxone a month after and weaned off my SSRI in June/July.
It's still hard to fully accept that I have been freed from my prison. Somebody pinch me!