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Cece wrote:

Over on reddit, I did a search to see if CCSVI has ever been discussed there.
Indeed it has…and by a psclafani…which does NOT stand for Professor Sclafani…

Interestingly, the venous strictures warrant the treatment regardless of any MS connection.

Death is always a possibility in any decision we make. I think that the afflicted are looking for life to be a possibility too.

It is exciting medicine like this that makes me wish I had followed in his footsteps.

Hi cece
thanks for the info. This is my son Paul Sclafani.His profession also focuses on fluid dynamics

I love him very much.

Hi Dr., it's been very quiet here lately. Are you still treating many CCSVI patients? Are you now involved in the Hubbard trials?

tzootsi wrote:Hi Dr., it's been very quiet here lately. Are you still treating many CCSVI patients? Are you now involved in the Hubbard trials?

There has not been much activity here. No one has questions any more. Seems like i have fulfilled my purpose. As you can see, I will still answer questions fairly promptly.

Yes, I still treat patients, although the activity and interest is much less than previously. I have received some funding to participate in the trial but have not completed all my requirements to see patients as part of the trial yet

DrS

Hi doc,

It's important to continue; brave dreams trial is active, hubbard's registry, the opinion that bad blood flow influences neurogenerative diseases, Buffalo university urging for more research.

I was flabbergasted by my neuro last month ; after 5 years no, no, no, lies, not true....he said that he sees changes...

I also showed tilt's video last year, he said; can not be true, neurodamage does not heal that fast.
I reminded him his words; now he says....this guy does not have ms...

So, keep the faith!

Regards,

Robert

Dr. Sclafani,

It is three years this month since you treated my husband for CCSVI. Since his first attack was in 1975, you can imagine that much damage was done. However, he continues to maintain the benefits he received from the procedure and even though his walking didn't improve, it has not declined either. (Walking began a continual decline around 1995). I am so thankful that we made the decision to have the procedure and that we decided to do it before insurance started refusing to pay. I feel that is likely a big part of why not as many are seeking treatment. I personally know of others who would seek treatment, if they could afford the treatment let alone the cost of travel, etc.

Wishing you a blessed Easter.

MaggieMae wrote:Dr. Sclafani,

It is three years this month since you treated my husband for CCSVI. Since his first attack was in 1975, you can imagine that much damage was done. However, he continues to maintain the benefits he received from the procedure and even though his walking didn't improve, it has not declined either. (Walking began a continual decline around 1995). I am so thankful that we made the decision to have the procedure and that we decided to do it before insurance started refusing to pay. I feel that is likely a big part of why not as many are seeking treatment. I personally know of others who would seek treatment, if they could afford the treatment let alone the cost of travel, etc.

Wishing you a blessed Easter.

Maggiemae
That is great news and it is so important to share that info with me. It is a great gift.

The most difficult part of treating patients is the difficulty of staying connected, getting followup and responding to issues withou having routine checkups, something that is determined by interest, finances; distance; outcomes; and sometimes because of patient desire to just move on.

Would you help the evolution of treatments by sending me an email to ccsviliberation@gmail.com so that we can securely and privately get updated on your husband's condition and progress.

Dr. Sclafani,

I looked back in my old e-mails and I did give updates for the first year (2011-2012) but did not last year. Will do.

Dr. Sclafani,
After reading your reply to MaggieMaes' post, I thought it would be ok to give you an update , here, on my procedures
because it was not for "CCSVI". My procedures were 12-20-12 and 12-28-12, you first treated my PCS then stented my LRV.
It's been over one year and I no longer have overwhelming pain. I recall two days last year when I had twinges of pain,
but it subsided, and just yesterday a twinge of pain (flank pain). Other than that I have no pain and I'm truly grateful to you
and your staff, thank you.

God bless!!

MaggieMae wrote:Dr. Sclafani,

I looked back in my old e-mails and I did give updates for the first year (2011-2012) but did not last year. Will do.

Thanks maggiemae
that things remain stable and that improvements have persisted is very encouraging and it is important for me to know this so that I can give good advice to my patients

dlynn wrote:Dr. Sclafani,
After reading your reply to MaggieMaes' post, I thought it would be ok to give you an update , here, on my procedures
because it was not for "CCSVI". My procedures were 12-20-12 and 12-28-12, you first treated my PCS then stented my LRV.
It's been over one year and I no longer have overwhelming pain. I recall two days last year when I had twinges of pain,
but it subsided, and just yesterday a twinge of pain (flank pain). Other than that I have no pain and I'm truly grateful to you
and your staff, thank you.

God bless!!

PCS,or pelvic congestion syndrome is a debilitating syndrome of pelvic, vaginal, ovarian pain that is caused by reflux down the ovarian veins into the pelvis leading to pelvic congestion.
pelvic congestion should be more common in patients with MS because PwMS have a much higher incidence of renal vein compression which often leads to reflux down the ovarian vein. I have had several patients who commented that treatment of the left renal vein compression as part of CCSVI had the added benefit of decrease abdominal, back and flank pain, decreased bloating that had never been explained over many years of ms

drsclafani wrote:Seems like i have fulfilled my purpose. As you can see, I will still answer questions fairly promptly.

It has been a remarkable conversation. I am sad if it is winding down.
Back in 2011, a few weeks before I was treated, my neurologist objected to me getting treatment. Not surprising. One of his objections was that if everyone rushes in for treatment, no one will be left to participate in the trials. This statement concerns me on that account:

Yes, I still treat patients, although the activity and interest is much less than previously. I have received some funding to participate in the trial but have not completed all my requirements to see patients as part of the trial yet

Cece wrote:

drsclafani wrote:Seems like i have fulfilled my purpose. As you can see, I will still answer questions fairly promptly.

It has been a remarkable conversation. I am sad if it is winding down.
Back in 2011, a few weeks before I was treated, my neurologist objected to me getting treatment. Not surprising. One of his objections was that if everyone rushes in for treatment, no one will be left to participate in the trials. This statement concerns me on that account:

Yes, I still treat patients, although the activity and interest is much less than previously. I have received some funding to participate in the trial but have not completed all my requirements to see patients as part of the trial yet

It is the nature of knowledge attainment, I think. As more is understood, people become used to knowledge and need less explanation. I surely know much more about veins, valves, endothelium, balloons, stents, anticoagulation, neurological assessment, ms, lymes, chronic fatique, ivus, than when I started answering questions. I should have set up a quiz back in the day and given it again in three years. It would have been interesting.
I will remain available to answer questions. Its not like I am winding down. I remain wound up by this treatment. In fact as I have gained experience I am more confident but more reasoned about the effects

drsclafani wrote:...............I surely know much more about veins, valves, endothelium, balloons, stents, anticoagulation, neurological assessment, ms, lymes, chronic fatique, ivus, than when I started answering questions....................Its not like I am winding down. I remain wound up by this treatment. In fact as I have gained experience I am more confident but more reasoned about the effects

Hello Dr S,
I have such confidence in your skills that I recommend pwMS (with sufficient funds) travel from Oxford England for diagnosis and de-stenosis by you. My question is:
Have your skills and techniques developed significantly over the last 3 years (when I visited your clinic) to justify another trip to Brooklyn???
Kind regards,
MarkW

Dr. Sclafani,
I forgot to mention that since my procedures (for RVCS and PCS), my eyesight has improved.
Even though I still need glasses, I no longer need a magnifier to read small print. It wasn't immediate, I still recall
you asking me if I still needed my glasses after the procedure. It was a few weeks before I noticed the improvement
and I'm still benefiting.
And happy you will remain available.
Thank you

dlynn wrote:Dr. Sclafani,
I forgot to mention that since my procedures (for RVCS and PCS), my eyesight has improved.
Even though I still need glasses, I no longer need a magnifier to read small print. It wasn't immediate, I still recall
you asking me if I still needed my glasses after the procedure. It was a few weeks before I noticed the improvement
and I'm still benefiting.
And happy you will remain available.
Thank you

dlynn
you are not the first person who has described improved vision after renal vein stenting. Can you imaging explaining this to a skeptical neurologist! I was skeptical as well, but with several patients describing this type of improvement, i need to better understand this phenomenon. Have you visited an ophthalmologist and had your vision tested? did you have any double vision? This is wonderful to have these reviews. Several patients have emailed me privately to tell me of the effects of treating CCSVI.

Any others willing to share both good and bad experiences from my treatment would enlighten many. I would like to restrict this reporting to outcomes of patients treated by me because I believe that my treatments have been standardized and uniformly performed by one technique for more that three years.

DrS