Awhile back, Dr. Sclafani made reference to that we were much more action-oriented lately, comparing notes on treatments and IRs, and less of the whining about neurologists.
So, I am sorry to disappoint, and perhaps this is backsliding, but Oh MY. I had an appointment yesterday with my MS specialist. I had brought up CCSVI a year ago and he blew it off, said it was way too soon, made some dismissive comments...but this time, I had brought in my MRV because it has the standard MS MRI on it too. I was not looking to discuss CCSVI, I wanted to know if I had any new brain lesions, it was my first MRI in two years.
He asked me what I knew about CCSVI.
I kept it simple and said that I knew a lot, I'd been reading up.
And that was it, he was off on a rant.
Some high points from his ranting:
* 2 deaths. Did I know there had been 2 deaths? 2 deaths.
* everything we read is just anecdotes
* stent migration was very serious, that guy was very lucky, he could've died
* He's had a few patients who have done this. One came back thrilled because he feels better. But his neuro exam went down by a point. But the guy still feels better.
* possible symptomatic relief but nothing to do with the cause of MS
* no way for reflux to be involved, no iron in the brain, this was all just made up out of nowhere
* Zamboni's original 100% findings haven't been replicated
* have I heard about the Amsterdam study?
* I've heard about the Amsterdam study (second time brought up)
* absolutely has been determined that the association between MS and CCSVI is 65%; other neurological diseases 50%; normal population 40%
* restenosis is likely
* it's fraudulent to charge it to insurance
* when I suggested the risk of injury and clotting in the jugulars, he actually dismissed that one, since it wouldn't matter if it clotted off since these veins are unnecessary, but a brain infarct would be bad
* Zivadinov is no longer behind this
* there's some "guy out in San Diego" (I'm assuming Dr. Hubbard) (it's as if only neurologists counted, Hubbard and Zivadinov, might as well refer only to Salvi instead of Zamboni!)
* low cerebral perfusion in MS is due to brain atrophy and needing less blood flow, not due to blockages
* should only be done in controlled sham trial, but there are long waiting lists
* doctors are just popping up everywhere to do this, it's a money grab
* bee stings, LDN, prokarin, bee stings again
It wasn't a discussion or a dialogue, which I might've enjoyed; it was a one-sided rant. He was sometimes right but more often wrong and it was all so strongly stated. I could've countered his points, but didn't think it would do much besides inflame him further.
Once he established that I'd heard everything he was saying and knew that he strongly advised against it, he returned to looking at my MRV. He found my stenoses in both jugulars to be remarkable. It's easily the worst he's seen yet from the discs his patients have brought in. He mentioned that he's even written a few requests for CCSVI MRVs for patients, which surprised me.
He acquiesced to signing a note saying that I had MS, which Holly had asked for in order to be treated by Dr. Sclafani.
He gave me samples of Nuvigil to replace Provigil.
We had no time for the neuro exam, no time to look through the MRI and see if I had any new lesions. He scheduled me back in two months.
It was a stressful appointment. If I knew less about CCSVI, I would've been scared by some of the things he said. It's hard for me to try and see it from his side. I think he believed every word he was saying. I wonder where it's getting reinforced, for him to know only the negative and none of the positive. While there was so much bias from him in such a short time as to be ridiculous, it did seem genuine.
I am not happy that other patients will be getting the same misinformed rant from him.