I'm still doing WAY better than I was before the procedure. I do still have some MS related limitations though. Underlying infections still bring on some mild neuro complications - kind of like a mediocre day before treatment.

The biggest improvement has to be the improved energy levels. I think I may still not have quite as much energy as a "normal", but 1000 times better than I was before.

I haven't used my cane once since the procedure. If I have an underlying infection I do still sometimes get a slight limp, but nothing like before. I no longer have to crawl up my stairs. Most days I can run up them! I'm fighting a cold right now and I can still go up them it just takes a bit more effort.

Heat intolerance is still gone. Haven't had the "cement blocks" on my feet since.

It's still so odd to go into a store/park/etc. and not have to worry about getting stuck there because of my legs giving out. I also no longer have to mentally pre-plan around my energy levels. Before it was an elaborate decision making process for *everything* - if I went up the stairs twice I wouldn't be able to make supper, and so on...

I think pre-treatment I was within a year of being out of the workforce permanently. I was also within a year or two of needing a scooter for outside of the house. I was also looking into selling my two storey home. I actually had to cancel my accessible housing home evaluation to take the trip to Bulgaria!

This treatment gave me back my life. Do I still have MS? Yes. This is not a cure, but it sure dramatically improved my quality of life. I can't help but wonder want would have happened if I got the treatment years ago. Could I have avoided all the myelin damage? Would it have then been a cure?

I know that I was one of the lucky ones. The stat I've read is that 1/3 get the great results that I did. I think my results were better because my MS was "mild". It sure didn't feel that way to me though. My life was a daily misery. I can only barely imagine what life is like for people whose MS is further progressed. Considering I think I've had the disease since at least 2000 (and I suspect 1998) I realize that I was already somewhat fortunate.

My advice to people considering CCSVI treatment is to mentally prepare yourself for no improvements. Then any improvements you do get are all a bonus.

I did not go into this procedure lightly. I have a risk management background, so my options were carefully weighed.

Even if only 1/3 of MSers get great results, that is a hell of a lot better than any of the drug companies have been able to do. I figure it's worth a shot.

Amanda, I am so happy for you. You showed great improvement right away. Are you on any blood thinners of anti-coagulants because of the stent? Did you have any follow-up ultrasound done after the 3, 6, or 9 months?

You're are a very pretty young woman. You don't need your cane anymore and you have energy to spare. That's wonderful! Thanks for sharing your video. :hug:

I thought, you thought, I made one. I didn't. I am seeing results slow but sure. I have 30 years of MS junk to clean up. I have MS since you were a toddler. :eek:

I'm healing because my stent got thrombosis. The Plavix did nothing for me, luck of the draw. Now I am on Warfarin and being closely monitored and doing very well, TG.

Lady, how are you feeling now? :)

Lady - did the Warfarin clear the thrombrosis? How are you feeling?

I was given 6 months of Pradaxa, 1 month of detralex and aspirin. I will continue to take the low dose aspirin for the rest of my life.

I did manage to fight and get myself a follow up ultrasound here in Canada at the 6 month mark. I don't think it was Zamboni protocol (even though I gave it to them), but they did confirm that my stent was still patent.

Hi,
I am doing great. It's two months now and I see so many improvements. I'm blessed. I have so much energy too. I go next month for my three month 3D color transcranial Doppler Ultrasound check up, and consult in Albany, with Dr Siskin.

I still take my meds Warfarin, and have weekly blood drawn to stay within the right level so any tiny clots I may still have will disappear, and new clots won't form. I also have a new Blood pressure pill which I hate. It makes me dizzy. I am getting used to it though so that should go away.

I have to be on Warfarin until I see the doctor in March. We'll go from there.

Those drugs you are on Amanda are not approved in the US. They probably are better than Warfarin (which is rat poison). Brand name Coumidin. Maybe I can switch to Aspirin if all is well. As long as I don't clot or re-stenos I'll be happy.:hug:

If I have to do it again, I will. Once you feel like you don't have MS most days, you want to keep it that way. :grouphug:

That's awesome Lady congrats. Good MS news is great to hear. Thank you for teaching me something called a transcranial doppler :)

Lady and Amanda......I am so thrilled that this has worked for you both and that you're seeing daily improvements.

Amanda, I watched the video and it was very informative. Thanks for sharing it with us here.

I hope you both continue to improve. For those this therapy works for it seems like a real breakthrough. I'm happy for you both! :)

P.S. Last Neuro appointment I had he listened to both sides of my neck with his stethoscope. He's never done that before.

Kitty he can only hear the whoosh of the arteries with a stethoscope, I think. Not the jugulars next to them. They only flow down, not pumped by the heart.

They only flow when you lay down. While in an upright position they don't flow, the vein collapses. With CCSVI or any blockage, nothing may flow.

Did he check you while you were laying supine? Perhaps he could hear something with stethoscopes of today.

Your brain drains blood without oxygen down by itself to the heart to get more oxygen from the lungs and then the arteries pumps it back up to the brain so we don't get fatigued, etc. without enough oxygen.

No pump in the brain, so it can back up very easily, like a clogged drain. Not with plaque, that is only the arteries.

The veins get kinks, bones compressing them, webs, valves reversed or missing, twists and turns and more. It happens. They think it is congenital. Just something the happens in the womb. We are not all born perfect.

Something triggers it to occur in the womb. Like lack of sunshine to Mom's in the winter pregnancy, thus more born with MS in the summer months.:confused:

Sorry to ramble.