This Is MS Multiple Sclerosis Knowledge & Support Community

Earlier this year, I was contacted by Community Care about CCSVI. They said that they would call me in the second or third quarter of 2011 and that 1-2 months later, I would get the liberation process. About a month after that I was contacted by the Vascular Foundation. They wanted to set up an appointment.

Both of these organizations were in Albany, New York. I finally screwed up the courage to call the Peripheral Vascular Institute in Philadelphia, Pa. I got thier name from the Hubbard Foundation. They emailed me the next day with a form. I emailed the completed form back to them the same day. I tried to be patient because the whole theory seemed cloaked in mystery and unavailability (or at least difficulty to attain.)

After a month, I called and asked what was going on. That was on a Friday and Becky asked if I could come in on Monday. I said, "HELLS YES!" On Monday, I met Dr. Worthington-Kirsch. He performed an ultra sound and said that he didn't see much out of the ordinary, just some turbulance on the right side, but we scheduled a venogram for the next morning. I couldn't believe the speed and ease that everything was taking.

When he did the venogram, the LJV and the azygous were OK, but there was a stuck valve flap on the right side that he venoplasted open. Since then, I've had a tremendous amount of energy and diminished fatigue but I still walk like crap and am bothered by the same myoclonal spasms in my legs every night. I wake up feeling more rested and don't experience the blah feeling or ringing in my ears. And, it was waaay cheaper than Albany.
Frank

Even though I didn't have CCSVI, I'm feeling better. I don't know if it's due to the procedure or if it's all placebo. Either way, I'm enjoying the holiday season. Plus, it was cheaper and closer to home.

I interpret this differently: if you had a valve problem, that in itself is CCSVI. Most of CCSVI is valve problems. The stuck valve was probably what caused the turbulence or reflux on the right side. That reflux is an indication of CCSVI.

Congrats, energy improvements and fatigue reduction are good and it's possible that the improved blood flow might result in gradual improvements in other areas. If you find your energy/fatigue worsening, I wouldn't consider that the placebo wearing off, I'd consider it likely to be a return of the valve issue and get it checked out asap! Merry Christmas!

I was treated by CC in August and they found and fixed significant issues with both juglars and my azy. Fatigue and headaches were my main complaint going in (I had no motor disabilities) and I have to say they are gone. Sure, there are times I am tired like anyone else, but I can attribute it to normal life versus MS as it is completely different than the overwhelming fatigue. It was nice walking into my 6 mo neuro checkup and being able to say that the only thing that reminds me of of MS are the shots. He suggested and I agreed that if things continue the way they are, we will do an MRI in 3-6 months to get a new baseline and discontinue the meds barring any negative change or area lighting up in the MRI and see how it goes. He even stated that if it is placebo, he'd love to see more of his patients with the placebo and be able to check "no" on every symptom.

Cece,
Thanks for the upbeat reply. I was thinking that because I didn't have any stenosis, that Dr.W-K only treated an incidental malformation, that anyone could have. He had fill out a 15-page neoro questionaire. He wants me to fill it out again at 1 week, 2 week, and one month intervals to track differences.
Frank

Instead of talking about stenosis, it's more inclusive to talk about "outflow obstructions" which includes the occasional case of narrowing, the frequent cases of valve malformations which sounds like what you had, poor development of the veins, completely absent veins, a bone obstructing into a vein...you get the idea. ;)

Without a better description from the doctor, it's hard to say, but I'd expect a "stuck valve" found in a pwMS to be exactly what we're talking about when we talk about CCSVI. My own doppler showed a bad but moving valve on my right side and a giant big immobile valve on the left. I am looking forward to getting both of them ballooned, perhaps I'll get some of that energy you're talking about.

That's interesting about having the neuro questionnaires even at 1- and 2- weeks and then every month. That's looking very soon after the procedure and lots of data, if only self-reported. It's possible that 3 weeks is a time when improvements are lost if the vein was underdilated in the first place so maybe we'll learn more about that if the docs focus on the early time period post-procedure.