CCSVI Mentioned On My Local News!

[EddieF]

Awesome! Saw it this morning here. Surgeon said during procedure, the lady patient said she feels improvements. He didn't believe her (with a smile). Soon as procedure was complete, she stood up without walker and took a lap around OR table. Now she cares for her grandchild. Awesome. Of course, one Dr in interview said " I still need to see more research blah blah blah.." as he stood there with his physically fit body without MS. Dork. Can't wait till FDA gets caught hiding real reasons why they frown on CCSVI.

I'm scheduled for MRI of brain & cervical Wednesday. I'm gonna call neuro Monday & see if I can change it to a MRV providing it'll still show lesions. If not, I might just have him change it to MRV & say screw the lesions till Jan.

[SallyC]

I wonder why, even though. all who get the CCSVI where blockage results are the same, that some have great surgury results and some have none or very little??

[EddieF]

Sally all I know is i'm gonna embrace the thought it can help maybe 25% of the people I cheer up in support group & with any luck, myself, yourself, and everyone else!

[Lady]

Sally, CCSVI is a pretty new procedure that is one reason. All doctors doing it are not on the same page, which they are working on. It happens. Remember the first heart transplant, lung, liver, etc.

The first heart transplant person lived only a short time, so over time they get better and better at procedures. All procedures.They all are still learning. The tests are in infant stage, machines are tech savvy. things can look better or worse on machines.

Apparently the fMRI is the best. Yes with the f there. The Doppler is good but tech savvy and the way our bodies are positioned can show flow or no flow just by turning the neck. The Chest vein (Azygous) can't be seen on Doppler.

So the Gold Standard in the Venogram. Stick the wire up to the jugulars and chest veins, and more places, and dye is injected. If blocked then balloon angioplasty. Then do another Venogram to check out the if the veins stayed opened, if not balloon again. There is a lot to it. The procedure can be 45 minutes to mine ..was 3 1/2 hours.

The doctor has to be so well trained in what he is looking at and how to treat, what size balloon or style of balloon. So much to consider, not like getting a tooth pulled, and not like an Appendectomy either. It is a procedure, yes. But normally you get up and away in two hours with a band aid, and can go eat or rest, whatever.

If they don't get it right the person may not see any benefit, or the meds are not right, or not taken by the person. So much to it, it boggles the mind.

Some PWMS just have too much damage, but are happy for better speech, hearing, or vision, or to transfer when they could not, or no pain. Others get lots of energy, balance or can walk, but they all need PT to get those muscles going again, if they haven't used those legs. Some see benefit right away, others a few weeks or months later.

Some see no benefit, maybe all the ducks were not in a row??? All blockages not seen and corrected? It's a real learning curve.

It is so individual, like everything about MS. Does this help?

[SallyC]

Thanks for that Lady, it makes perfect sense.

[ItsWonderfulLife]

Thanks so much for all of that information about CCSVI. I have looked into it alot and think its defintely a promising form of treatment and that give me even more hope! Im glad that you explain how the doctors arent necessarily checking properly or unblocking properly.I heard Montel Williams had it done and is going to talk about it sometime this month with Dr. Oz (unless it has already aired i never watch tv lol) which should shed alot more light on it. How are you doing after your ccsvi? What improvments did you see and how long has it been?