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Have been trying to get ahold of him. Former patient question.

Last post I saw from him was a few months ago, but saw someone say they had the procedure from him fairly recently as well.

Hoping to see ... had sent him a PM.

If anyone could get ahold of him - it'd be much appreciated.

Hi CCSVIhusband, Yes Dr. Sclafani is still around. I saw him yesterday (Aug. 4th) for a CCSVI procedure, if you look on his thread at the bottom of his replies, he has an email address you can contact him at........hope this helps,
dlynn

Hello dlynn

I believe you've undergone several CCSVI procedures with Dr Sclafani. Could you give us an update of your experiences? You obviously find the treatments helpful. Thanks, feedback is always helpful.

Best regards, Vesta

hi Vesta
actually this past Friday was my first CCSVI procedure with Dr. Sclafani. In the past, yes, the treatments have been very helpful with balance and heaviness in my limbs. I had 4 other procedures by two other Drs. It's still early to tell of improvements but I'm extremely hopeful as he is a very good Dr.
dlynn

I would like to hear of your results. I am still considering having another procedure, if the good Doctor is still in business,

I can say Dr S. Is absolutely still around. I spoke with him a couple of moths ago. Now the thing I need from all of you who may be reading is, is this REAL!! I've been watching and reading about this since the I can jump video. I've read everything including the stuff I didn't understand. People in my life tell me it's not medically proven and it won't help me. But I've seen all the people get better and I'm still waiting for someone to verify it. Which could take forever. And I'm still here getting worse. All you guys out there, please tell me, is all I see here true? Including Dr S being a good safe doctor? I beg anyone to answer me.

Jjpink wrote:All you guys out there, please tell me, is all I see here true? Including Dr S being a good safe doctor? I beg anyone to answer me.

For me I had real and lasting results (but I had no mobility issues so nothing to change there). I was treated by Dr. Sclafani, I consider him a very good and safe doctor. Yes, the wait to verify has been years and years at this point. Seven years since I first heard of it, six years since I was treated. Angioplasty however has been around for thirty years and is considered a safe and proven technique for clearing blocked blood vessels. For me, I was diagnosed by ultrasound and by MRI and by 2 different doctors (Dr. Sclafani and Dr. Cumming in Minneapolis). The MRI (actually MRV, an MRI of the veins) was particularly easy to see where the flow in my veins just ended, on both sides. So I would say CCSVI is very real, it's a condition of its own that impacts neurological health and seems to have a correlation with multiple sclerosis, and there's a treatment for it.

b

Jjpink wrote:I can say Dr S. Is absolutely still around. I spoke with him a couple of moths ago. Now the thing I need from all of you who may be reading is, is this REAL!! I've been watching and reading about this since the I can jump video. I've read everything including the stuff I didn't understand. People in my life tell me it's not medically proven and it won't help me. But I've seen all the people get better and I'm still waiting for someone to verify it. Which could take forever. And I'm still here getting worse. All you guys out there, please tell me, is all I see here true? Including Dr S being a good safe doctor? I beg anyone to answer me.

I will find it terribly ironic if some neurologists ever start acknowledging that the central vein sign is the defacto means of diagnosing MS. I think the former "time and space" criteria are nothing but a way to get more MRIs done, and delay diagnosis, which is cruel. Radiologists are quite familiar with the central vein sign.

Delaying diagnosis does only one thing for the patient. With a diagnosis of MS, you may automatically lose insureability, so it may delay that unfortunate aspect. MS, when it is in the so-called Relapsing-Remitting phase, is very expensive to treat, given the extreme pricing of oral and injectable drugs. So you delay that expense.

Once you are diagnosed (in writing) you have what insurance companies like to call a "pre-existing condition". You are then not insureable by the US government, depending on if Trump manages to get rid of Obamacare. In Canada, it is a pre-existing condition. But, if the diagnosis was made after the insurance policy starts, you are still insured. Pre-existing conditions in one country may start at the time of diagnosis, while in another, they may have legally "existed" before diagnosis (even while still unknown). I doubt if Donald Trump understands this distinction, but it is a real one.

You see how standards of diagnosis may in some cases have legal and economic consequences?

Dr. Sclafani is a good safe doctor who uses IVUS (intra-vascular ultrasound) to examine the veins from the inside. This is the standard of care for CCSVI. He is also a professor at SUNY. He taught interventional radiologists.

The FDA has tried to make CCSVI treatments illegal, but that is completely up to the doctor doing the treatment, so there is nothing illegal about it. There are several doctors in the US who do it. In the US they will usually not offer stenting. That is because the pressure is low and flows towards the heart (stents in these conditions tend to come loose and move "downstream"). In Canada a patient died because the procedure was not done in Canada, so the medical system here abandoned him (even worse, made him fly out-of-country), even though he was experiencing complications.

Blood treatments used in the weeks following a CCSVI procedure (I was on Plavix for 12 months) may thin the blood. That has resulted in one US patient's death. The complication in that case may have been air travel while on blood thinners. Ask the doctor about blood treatments, and possibilites for follow-up examinations. Remember that travel to get this procedure complicates things. My follow-up was an ultrasound given in Barrie, Ontario. All my travel post-treatment was by car. I was already on Plavix for a heart stent, and I flew to Syracuse for the procedure. Just lucky, I guess, or the right cabin pressure, or something.

Don't be surprised if there are medical, legal, and political roadblocks. But don't be surprised either if it doesn't make you improve, or if improvements don't last. About 1/3 see improvements. Mine didn't all last, but some did. "I never promised you a rose garden."

Trump: GOP health care bill 'guarantees' coverage for pre-existing conditions

As reported by CNN:

http://www.cnn.com/2017/04/30/politics/ ... index.html


President Donald Trump says the Republican plan to repeal and replace the Affordable Care Act "guarantees" coverage for Americans with pre-existing conditions

As I said, pre-existing conditions vary by country depending if you were insured at the time of diagnosis. Life is a pre-existing condition almost everywhere.

Besides, Donald "Left Bowser" says a lot of untrue things. I think most Americans are used to it. If he was Richard Nixon, and death was not a pre-existing condition, he would have resigned by now. Would we be stuck with Pence, or does the Russian interference invalidate the whole election? That's what the imoluments clause in the US constitution is about. Most people who are still supporting him don't give a damn. In a true democracy, the people get what they deserve. Hard to find anyone who voted for Nixon or Agnew these days...

Dr Arata, who helped me in 2015, refers me now to Dr Sclafani. Dr. S. had me fill out a detailed symptoms questionnaire before he said I'm a candidate. I'm about to fly to NYC (Brooklyn) from Northern California. Procedure date not yet confirmed as of today, October 16, 2017, however.

(I do not have MS, fortunately. "Chronic Lyme" plus genetic hypercoagulation.)

Best wishes, violin! Dr. Sclafani once shared with us images of the jugular vein valves of a Lymes patient. IIRC, the valves were bumpy and stuck in place, blocking flow, as opposed to smooth (but also stuck in place, blocking flow) like the valves of MS patients. This was suggestive that the blocked valves were an acquired condition, due to the Lymes, as opposed to a congenital condition in the MS patients who would have had malformed valves likely since birth. Here is hoping that there is something to find and fix. You've told the doctor about the hypercoagulation? That would affect any anticoagulation regiment post-treatment; it is important for everyone, in my opinion, to get follow-up checks for any possible clotting but even more important if there is hypercoagulation, I would think. Hope you've found someone to attend you the night of the procedure. Good luck!

Thank you Cece. Interesting about bumpy vs. smooth. If Dr. makes a comment regarding this after my procedure, I'll post it.

Dr. A. could not get his instruments up the jugulars due to bony blockages, so I've been doing Atlas Orthogony for a couple of years. The jugular valves were occluded and abnormal, but more than this I don't know.

We have some familial tendency toward neurological problems. With the potential of CCSVI relating to neurological problems in general, maybe my outcome could help inform relatives or future descendants.

I've found a friend's daughter in Brooklyn who probably could stay with me. The date is Dec. 15, 2017.

RE hypercoagulation: Yes, Dr. S. had me fill out a detailed medical questionnaire. So far, I've not had to take any anticoagulation medicine in general. I asked for some, however, for a long air flight due to my tendency to get foot cramps. It helped. Dr. S. prefers Pradaxa. After Dr. seeing A., I took Xarelto for a month. But as hypercoagulation tends to worsen with age, I certainly want to monitor this. I wonder if there is a home-use monitor for this, as for blood pressure or blood glucose. That would be a different forum, I guess.

Just a comment: I've been treated for food sensitivities (avoidance, antifungals, enzyme potentiated desensitization) since the 1980s., especially G.I. tract mold overgrowth that causes more food allergies unless treated aggressively. I am usually very careful with my diet. I tolerate butter and heavy organic creme, but not casein (the protein part of dairy). After I accidentally ate a bit of moldy broccolli a year ago, I could barely walk. So: hypercoagulation, infection ("Lyme", additional Borrelia species, and HHV-6), antigen immune complexes due to allergies, veinous inflammation from my particular hypercoagulation mutation... Just musing.

Violin, can you please let us know how your experience was??? Please. Now I really don't know what to do.

My local family practice MD saw me a few days before I was to leave for NYC. He noticed swelling in my left neck (where I ache nearly every morning) and jaw. He thought I might have a failed root canal. Said not to fly!

So disappointed. I have been trying to accomplish this for 6 months or so.

The endodontist checked carefully and found no root canal infection. (I think root canals are controversial, and I don't want to keep mine, but apparently that's not the immediate issue.)

I have written to try again to see Dr. Sclafani.