Having My CCSVI exam tomorrow
 

I broke down and committed to speaking to an "interventional radiologist" tomorrow about CCSVI. He will scan my veins and see what shape they are in, and answer questions and so forth. I have NOT made up my mind how I feel about this research, its process or its outcome.

One of the things that bugged me most was folks were clamoring to get this done, and had a wide spread of videos on the internet showing them stumbling, tripping, and unable to function well, then it went onto a functional balanced person who ran down the hall with no cane, no assistance and a dramatic change in their life. Sometimes you got one or two follow ups, but once six months went by you never heard from them again.

Even if its bad news or a redo or a failed attempt or you back slide to where you were before this thing, I would want to see it! So many said they didnt post anymore videos for fear that it would discourage folks from being tested. Well...duh! At least it was fair to tell us, instead of us assuming your life got better and you moved on and forgot us.

So...IF and that is a huge IF I choose to have this done, I promise to post a video, before, after, one month, two months and all the way thru a year, with or without progress, with or without backslides or a worse disease course.

Step one...go for the exam. Tomorrow is my day.

Say a prayer for me. its going to snow ...again! and we are driving right thru the thick of it to get there. Im so car sick now from the blindness. its gonna be so hard on me to be in the car 2 hours.

Wishing you a good day w answers that you need.

And, I agree w the lack of public discourse about failed or no progress results. I'm not on FB, so maybe it is there?

Thanks for your promise,
ANN

Go get 'em girl. I'll pray it works to bring your sight back, if nothing else..:hug::hug::hug:

ok, climbing in the truck in a minute to go for my exam. Since nothing is being done but an exam, I dont feel the need to post a video.

Thanks
Dej:cool:

Hoping all goes well and you hear the news you want to hear. Even if the procedure brought back your sight and nothing else it would be well worth it. I'm so glad you're getting the chance to at least explore the options.

Report in as soon as you get home. Well you may eat first..:D

Good Luck..:hug:

I hope all goes well for you today. Report back when you get a chance.:hug::grouphug:

:smileypray::smileypray:

you're in my prayers today, sweetie...

This MD does use the Zamboni method. he was well versed in this procedure and has done about 400 or so of them. He did a doplar study of my IJ (internal juglars) and said they looked good, but that doesnt surprise him at all. They are finding the doplar scans are tricky and are not showing true blockages, since the veins are so flimsy and floppy. He agrees that stents should not be used at this juncture until they make stent specifically for veins and not use arterial stents in veins.

He said my exam showed that my chest vein is about 75% closed. My right IJ keeps kinking over, and he thinks I would probably benefit from this.

That being said...only about 50% of those that have this done, see any improvement in sx. The next 25% see short term results and have it redone about once or twice a year to keep the blood flow going. The other 25% see next to nothing, but even if he can improve my fatigue or mental clarity its a win win. He said due to the advance stage of my optic nerve decline he may or may not have any effect on them, and IF he does, it will be gradual and slow going as the nerve heals. I should not expect to jump off the surgery table and then say I CAN SEE! he said it would take weeks to months IF anything at all happens, and I need patience. Even if we can stop the sea sickness, or the vestibular off balance stuff, I would be a better candidate to get a dog, and not fall on it. As it stands, I may not qualify for a dog because my walking is so slow, and I am so clumbsy that they may want me to have more work done.

So..I am being pre approved, and once they get that, they will call me to schedule this. Once that happens and if we choose to go, I will then make a video and post a link for my before shots.

Thanks for the prayers and well wishes. :cool:

Wow...you got a ton of info today...prayers still going out for you dear...