DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Iliac & renal veins

Postby drsclafani » Mon Sep 27, 2010 3:36 pm

Ned wrote:Hi Dr Sclafani
I've had ms for 30+yrs, SPMS for approx last 10
Had angioplasty mid may, 60% stenosed right jugular
Terrific results all round, except right hip/leg/foot & right hand not good
No flex in my right leg, no dorsiflexion, and hand is weak/numb

Looking to 2nd angioplasty as now re-stenosing

If the iliac & renal veins are stenosed and subsequently treated, could this benefit my seemingly awol ilioapsoas muscles?


glad to hear you had improvements.

I think that disease duration and disease burden are related to outcomes.
how long did you experience clinical improvements? How many dilatations, low long did they last, what were the result immediately after dilatation.

if relapses are coming on so quickly, then we have to see what the technique is to determine why restenosis

you see?
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Postby drsclafani » Mon Sep 27, 2010 3:38 pm

HappyPoet wrote:Dr. Sclafani,

I want to thank you again for creating "drsclafani answers some questions." I wish I knew how to express how important it is for people with CCSVI/MS to have a place on the Internet where they can feel safe to ask questions, to debate new ideas, and to learn, all in a peaceful, supportive atmosphere.

My question: For many reasons, I cannot print, by hand nor by machine, the letter you need to accompany my CD of images for use in your book. Would it be possible for you to accept in email the letter if it has an electronic signature? Thank you!

~HP


of course, just need your real name
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Re: Missing azygos?

Postby drsclafani » Mon Sep 27, 2010 3:44 pm

Hooch wrote:I posted this yesterday but in the wrong place. My question is about my azygos vein. I was in Albany for the CCSVI procedure last week. Dr Siskin, who as we all know is very experienced, could not find my azygos vein meaning that I may not have one. I am 56 years old and wondered if I should be concerned about this.


yes dr s is quite experienced now. I can think of two reasons why he could not catheterize the azygos vein
1. it does not exist
2. the mouth of the vein is so narrow he cannot enter it

A chest CT scan with contrast might be able to tell
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Postby drsclafani » Mon Sep 27, 2010 3:47 pm

AlmostClever wrote:HIya Doc. S!

I was tossing this about in another thread but I am really left in the dark on this one!

This is a picture from my venogram showing the blood flow in my iliac veins/IVC (for those playing along at home!).

Can you give me your impression of what is going on here? I have argued that without a 3-d MRV or CT scan it would be difficult to interpret exactly. My doctor argues that without pain and swelling, he can't order the scan!

My symptoms are numbness in both legs and the right is much weaker than the left.

Have you ever seen and/or treated something like this?

What can be done? Do you think this might need to be treated?

Thanks in advance!

Image


interesting images

1. to me it looks like a partial duplication of the left inferior vena cava with connections between both. of course this is all semantics.

i do not think that this is may thurner syndrome. The left iliac vein should be narrowed somewhere and it isnot
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Postby NZer1 » Mon Sep 27, 2010 4:00 pm

Quote "nigel
where did you get the 70% nonresponder rate? I have not read that."

Dr.S my figures were taken from Thekla's quote which I think was a misquote of Gary Siskin's quote
"This also helps explain the variance in the effectiveness of the liberation treatment from patient to patient. Some patients see dramatic improvements in their condition, sometimes almost immediately after having their veins unblocked. Other patients exhibit no benefit from the procedure, and some even get worse. Dr. Gary Siskin, an interventional radiologist doing the Liberation Procedure in Albany, New York, has publicly stated that one third of his patients see dramatic improvements, one third minor improvements, and a final third no improvements at all."
So I guess that would read more accurately as being 60% having an improvement and 40% not having an immediate improvement.[/quote]
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Postby hopeful2 » Mon Sep 27, 2010 4:43 pm

Dr. Sclafani, I pm'ed you earlier today but I'm not sure if the message was sent. Did you by any chance receive it (with images)? Thanks.

Patrice
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Iliopsoas muscles

Postby Ned » Mon Sep 27, 2010 5:18 pm

Hi Dr Sclafani
Thankyou for your reply & here are the answers to your questions :
My disease burden prior to angioplasty was one of gross fatigue, and physical slowness. I had been experiencing severe stiffness, and couldn't get into bed, or roll over. This was for about 2 months.
Due to that, I chucked methotrexate and clomazepam and started taking LDN & 4-AP. I was comfortable again - LDN & 4-AP were my lifesavers.
I then had the angioplasty.
The IR ballooned the stenosis twice - 60% in right jugular
I wasn't aware of any changes "on the table", but in recovery I felt the tingling in my hands was lifting slightly.
Immediate changes were restored balance, swollen ankles, woozy head, sore back of neck/head/shoulders, stiffness, back ache & heat intolerance disappeared.
Things kept improving for 14 weeks after the procedure, all except my right leg, which didn't gain any benefit from the angio. It's like an anchor.
I still drive and swim, and use one or two elbow crutches to walk. I was extremely active until SPMS got me.
For the last 2-3wks have not been as clear mentally, falling asleep often Back spasms, total leg & arm numbness at night are new
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Postby Thekla » Mon Sep 27, 2010 5:29 pm

I got the one third numbers from Prof Vogl. He said about one third of patients experienced great results, one third small slow results and about one third nothing. Whether that was his personal experience or from others' talks, I don't know. He said I appeared to be in the second group with small positive results, primarily lack of fatigue.

I do wonder whether standardization of diagnosis and procedure might not eliminate some of the variability in outcomes.
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Postby drsclafani » Mon Sep 27, 2010 5:47 pm

Cece wrote:where oh where is Dr.Sclafani today?

In case anyone missed this:
GiCi wrote:You all will be pleased to know that Dr Sclafani and myself have been invited to take part in a debate on CCSVI, which will be held in Belfast as a satellite symposium in a conference of Vascular Surgery on the 24th of September. We will argue in favour of the liberation procedure, while two well known neurologists will argue against it. The debate will not change the world, but I hope that it may open some eyes.

So who'd'ya think won, our guys or the neurologists?



ok let me share the discussions that occurred in Belfast it was quite a challenge and I am not sure there was a winner.

There were four speakers. Dr. Goianfranco Campalani, an MS patient who is a cardiothoracic surgeon at the Royal Victgoria was first.

Then TWO neurologists spoke back to back. Dr Stanley Hawkins is the senior neurologist in Belfast and is a consulting neurologist in the Royal Victoria Hospital, Belfast City Hospital and the Causeway hospitals. He is a well written MS neurologist. He was fol.owed by Martin Duddy who was also a consulting neuorogist with special interest in MS. He is a busy clinician. Finally yours truly got to speak

Dr Campalani gave a detailed account of his disease and the effects of balloon angioplasty on his life. It was the common description of progressive deterioration to the point of dysfunction and his dramatic improvements after balloon angioplasty. Followed again by recurrence, repeated angiopastly and a satisfied patient. Dr Campalani passionately spoke in favor of the procedure as a patient. He acknowledged that existing disease was not likely to be totally reversed and accepted his residual symptoms. He argued in support of universal availability of the liberation procedure.

Dr Hawkins then proceeded to state that neurologists understood this disease better than most. Perhaps in a wry joke, he showed a line illatration of the brain and spine and then insisted on repeating this in case it was too complicated for the audience. I could not tell whether he was insulting or just making a bad joke. He then reviewed the natural ihistory of MS, indicated that it took a long time to reach SPMS. He showed various tables indicating the waxing and waining course of MS, indicating that long periods of remision occured without treatment, that placebo was a real problem for assessing research, He pointed out that quality of life scores were not really very scientific and then stated that Zamboni's paper in JVS would not have been published in a neurology journal for its statistical deficiencies.

I had a lot of difficulty with Dr Duddy's presentation. He seemed to be mocking the entire subject as irrelevant. He kept pointing out things that proponents put forth and kept snickering and laughing about it. I could not tell whether he was mocking in a conptemptuous way.

he then reviewed samboni's papers, deconstrucing them as poor science with suboptimal outcomes abd crappy data. He discounted Zamboni's work because he had 100% correlation in ultrasound. he dsmissed zivadinov's confirmation because zivadinov know zamboni so "we couldnt really accept that, could we?" biased and all.

He showed some placebo studies and argued that the improvements seen by zamboni were less than those improvements reported for placebo trials. Interesting how he brought up the "unacceptable" zamboni data and then used that data to prove his point.
He then brought out the big hitters, the kahn editorial (lots of good data there) and the doepp paper as proof positive that zamboni was wrong.

Finally the commercial enterprises that are performing liberation were charlatons. That a 7,000 pound expense for this procedure was a real hardship. I wondered what he thought of the expense of some of the DMDs

Finally I had an opportunity to speako

I made four major points
1. that ccsvi has many causes although ms was the most common cause
2. that other causes of ccsvi are treated. I asked why MS patients could notgg be treated.
3. I argued that demands for a randomized trial were very premature if needed at all. i showed them the diagnostic challenges, the laack of clarity about the type, size, duration of balloon angioplasty, the unclear role of doppler, MRV, venography etc made it very unclear what represented best practice. without that knowledge we cannot compare liberation to durgs or to sham, etc. I gave countless examples of the confusing issues and numerous examples of bizarre veins

Finally I argued that the patients were not satisfied with the status quo. That they were intelligent and could make up their minds about whether it was worth their while to seek treatment. I warned the neurologists that a paternalistic attitude would one day bit them in the ass.

a vote was taken at the end and most did not commit one way or the other. the surgeons told me that their minds were opened by the debate.

I spoke to dr hawkins at the evening's dinner. I reiterated my need for collaboration between neurologists and interventionalists. I asked him how he would propose that i create that collaboration. He didnt give me a satisfying answer.

was the trip worth it? I thought it was . i think minds were opened a bit. Lets not give up hope about neurologist partnerrs. We really do need them

Hey......I am jet lagged beyond belief....have a good evening.

s
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Postby drsclafani » Mon Sep 27, 2010 5:49 pm

LauraV wrote:
Cece wrote:where oh where is Dr.Sclafani today?

In case anyone missed this:
GiCi wrote:You all will be pleased to know that Dr Sclafani and myself have been invited to take part in a debate on CCSVI, which will be held in Belfast as a satellite symposium in a conference of Vascular Surgery on the 24th of September. We will argue in favour of the liberation procedure, while two well known neurologists will argue against it. The debate will not change the world, but I hope that it may open some eyes.

So who'd'ya think won, our guys or the neurologists?


I'll put my money on our guys. I don't know GiCi but Dr. Sclafani knows his stuff and is an impressive speaker. Wouldn't it have been great to be there? I wonder if it was recorded.

And what about debate(s) here in the US, Dr. Sclafani? I love it......accurate information about CCSVI coming out with every neurological spin refuted immediately.


i do not believe that this was recorded for public consumption.

unfortunately, this is not a game where debates happen winner take all

it will come in short bursts.

on one thing dr hawkins and I agreed. much of the work on this should be directed toward neurologists. they are in the best position to take care of things
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Postby AlmostClever » Mon Sep 27, 2010 5:56 pm

Dr. Sclafani,

Many PwMS on TiMS have been told they have similar conditions to mine and that there is still adequate blood flow from their legs.

I believe you are very correct in that I do not have "classical" May Thurner. The vein is not cut off or constricted and I have no severe pain or swelling in either leg. (Feet sometimes really hurt!)

I really think Nunzio's interpretation (p. 277) is a great explanation:

The left common iliac is dilated due to a blockage in the IVC, which resulted in a collateral vein formation between the left and right iliac.

The blockage in the IVC is causing overflow into the ascending lumbar.

As a result there is diminshed flow in both legs and therefore diminshed oxygen to leg muscles and nerves. My symptoms could be mainly due to claudication. (cold feet, leg fatigue, numbness, limping - same symptoms!) It's worse on the right due to the reflux created by the collateral coming from the collateral flow from the left iliac.

The lesions in my spine (like Nunzio suggested) are probably from the overflow from the left common ilac vein into the ascending lumbar combined with a faulty lumbar system and/or renal vein which overloads the azygous. (I added the claudication, lumbar system/renal part!)

I know it's like a Perfect Storm but so is getting MS?!?

There are papers where people with similar conditions have had IVC stenting and improved. (Nunzio can provide!)

Would you consider getting treatment of the IVC (stent)?

Thanks so much! We all know how hard you work for us - I don't think words can express it!!!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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FINALLY THE ACTUAL UNIVERSITY PROFESSIONAL VIDEOS

Postby drsclafani » Mon Sep 27, 2010 6:18 pm

THANKS TO DRBART, WHO WORKED VERY VERY HARD TO GET THE UNIVERSITY CREATED VIDEOS OF MY FIRST SYMPOSIUM UP ON LINE

SEARCH

http://www.youtube.com/user/RadiologySUNYDownst
Last edited by drsclafani on Tue Sep 28, 2010 10:31 am, edited 2 times in total.
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Postby Cece » Mon Sep 27, 2010 6:35 pm

drsclafani wrote:Lets not give up hope about neurologist partnerrs. We really do need them

I wonder then what it will take to convince them.

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Postby Lena » Mon Sep 27, 2010 8:13 pm

Dear Dr. Sclafani,

My 15 year old daughter has not been officially diagnosed with MS (about a year ago she was diagnosed with brain lesions after paralysis of her right leg from the knee down which lasted about two weeks). Her only symptoms at this time are fatigue and somewhat foggy thinking. She was also born with one kidney (accidental discovery during a late ultrasound). Fortunately she hasn't had any issues with the kidney, but I'm really worried about repeated exposure to the contrast agent during an MRV and later on during the actual procedure. My question is, do you know of any physicians diagnosing CCSVI solely based on a doppler ultrasound or IVUS?

Thank you so much!
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Belfast Debate

Postby MS_HOPE » Mon Sep 27, 2010 9:47 pm

Oh dear, Dr. S, now I'm really confused. Thanks so much for your summary of the Belfast debate. One statement you made really got my head spinning: "I made four major points
1. that ccsvi has many causes although ms was the most common cause...."

YIKES. From all I've read, I'm convinced it's the other way around - that MS is probably caused, at least in large part, by CCSVI (and other concurrent, and probably variable factors, depending on the individual pwMS.) I am persuaded by the thinking of Ashton Embry (cited on p. 226 of this thread by NZer1) as to the probable causes of MS.

I won't be surprised to learn, eventually, that other diseases like Parkinson's, Alzheimer's, and normal pressure hydrocephalus (NPH) also have vascular malformation(s) as a component. (Though there's NO other MS in my very large, extended family, my father had Parkinson's, my mother had NPH, and an uncle had Alzheimer's.) I'm intrigued by the quote (provided by NZer1 on p. 227) attributed to Michael Flanagan (uprightdoc.com) that mentions Parkinsons, NPH, and Alzheimers in addition to MS when discussing brain blood flow issues. (I've yet to read up on that.) Apparently Dr. Hubbard has also recently found CCSVI in a Parkinson's patient.

Any comments or clarification of your thoughts on this would be much appreciated!
CCSVI:  Making Sense of MS
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