DrSclafani answers some questions

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

Postby patientx » Tue Jun 15, 2010 11:05 am

CureOrBust wrote:
drsclafani wrote:
magoo wrote:Dr. Sclafani,
Can you explain why people who have had treatment sometimes have a return of old symptoms when sick? ...

...i am not sure that "illness" brings on old symptoms when sick. perhaps it is the stress? I will look around.

if illness leads to stress???...
I have had MS symptoms for around 15 years (but have yet to be treated for CCSVI). My ONLY trigger for a relapse (ie new or worsening/return of old symptoms) is a cold/flu (ie illness). If I get a "bug" I can be guaranteed to have a relapse , no matter how minor the illness is. I have NEVER noted a relapse from stress, but I am not known as someone who is stressed easily.

I am not the only one who has this pattern, and when I told my neurologist, he said it was quite common to have a flair after a "bug".


I think it's pretty well established that an infection can cause a worsening of previous MS symptoms.
http://www.umm.edu/ms/what_is_ms.htm
Infections can also provoke a temporary worsening of symptoms and symptoms may resolve once the infection clears. Infection do stimulate the immune system and may provoke an exacerbation of MS. If symptoms persist once an infection is treated, treatment for a relapse may be warranted.


And not to say that the infections don't initiate an actual relapse in your case Cure, but many definitions of an "official" relapse specifically mention new or worsening symptoms in the absence of an infection (cold, flu, bladder infection, etc.) - the difference between a "flare" or "exacerbation" and relapse.
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Postby magoo » Tue Jun 15, 2010 11:13 am

Thanks patientx :D
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby MS_mama » Tue Jun 15, 2010 11:23 am

Dr S--

Can you tell us a little bit more about the possible risks of the procedure? I am concerned about what I am hearing from patients that they improve temporarily but then when they worsen, they worsen to a point worse than pre-procedure. Plus some patients are remarking that they start progressing faster than before. That makes me wonder if, as I had asked before, if this is related to the procedure causing the veins to become hyper-reactive.

I am also concerned about a couple of reports of people developing new symptoms immediately post-procedure. Have you seen this?

And lastly, if i may inquire about the potential relevance of the lumbar veins---so if I understand you correctly, hypoplasia of these veins may be associated with spinal lesions?and is there any possible connection between may-thurner and MS?
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Vonna » Tue Jun 15, 2010 12:39 pm

Hello Dr. Sclafini,
Thank you so much for taking valuable time to respond to our questions. We have so much respect for you and what you are doing!

I recently talked a local interventional neuroradiologist into doing the catheter based venogram. He seemed interested at first, then he must have learned that CCSVI is "controversial". He did it to "appease" me saying before the procedure that no matter what he saw he would not be treating it. With this, the procedure was done. While still lying on the procedure table, he told me that blood was draining adequately, and that there was nothing unusual.

He asked me if I would like to see the scans. I have seen a few before and after scans on CCSVI patients, so I was eager to see my own. From what I saw, the azygos looked normal at a glance.

The left jugular had a "twist" in it, although blood seemed to be getting through pretty good. I could tell that the blood was flowing because the contrast showed up as "cloudy" or "transparent". In other words, the contrast was not so thick that it completely filled the entire vein. I hope my attempt at describing this makes at least a little sense!

The right jugular looked very different from the left. Instead of one vein, two very prominent veins showed up! One was slightly wider than the other. The contrast in these two veins on the right side looked very different. The contrast in the slightly thinner vein showed up as on the left side. It was "transparent", or in my mind showing motion. However, the wider vein was completely filled with contrast. You could not see through it. It showed up much darker and more concentrated. It was hard to tell if this blood was actually draining because near the bottom of the scan, these two veins seemed to meet up and become one. As I viewed the section at the bottom, it looked more like the blood was actually only draining from the thinner vein because it had the same consistency, transparency, and amount as the thinner vein. I could immediately tell that the amount of blood trying to drain in the upper part of the scans was much more than what was actually draining.

To add to this, there was a large amount of collateral veins on the right side, at the top portion on the scans.

My immediate impression was that the wider vein was my jugular vein. It was stenosed to the point that my body had tried to compensate by making a new, thinner vein that was indeed draining some amount of blood. The collateral veins were also an attempt by my body to drain blood, although the collateral veins didn't seem to have an outlet.

I asked the radiologist why two veins showed up instead of one. He said that one was my internal jugular, and one was my external jugular. I didn't think to ask him why both my internal jugular and my external jugular had not showed up on the left side.

When I asked about the "web like" veins, he said they were collateral veins, and that this was completely normal. At this point, I thanked him. In my mind, I felt like I had the pictures to show stenosis and that was a great step! I determined to get the scans and have them evaluated by someone who could help me. So, a couple weeks ago I sent the scans off to you! :o)

Can you answer these questions in general?

Is it normal to have two prominent veins show up on the venogram? Could this possibly have been an internal and external jugular? Are collateral veins normal? Does it make sense that the "transparency" I am describing is the blood flowing while the darker, more concentrated view is a sign of stenosis because the blood has nowhere to go and is refluxing?

I look forward to your answer!

Lavonna
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Postby drsclafani » Tue Jun 15, 2010 6:44 pm

JoyIsMyStrength wrote:Hi Dr. Sclafani,

I have been an admirer of yours from afar... I can't tell you how much I appreciate your helpful, wise and witty posts.

Regarding your last post:

So i think that some of those who have had venograms that appear normal just havent had all the right imaging done.


It's obvious you were reading my mail. I've been thinking -- radical, I know, so I have kept it to myself -- that if someone with MS isn't proven to have CCSVI it's because somebody didn't know where to look... whether because they just plain missed it or there are things we don't know yet.

I'm going to Poland in 9 days. Would it be presumptious of me to share your post with Dr. Simka or do you think he would toss me out onto the streets of Katowice? (I've heard he's a nice guy but you never know.)

Thanks,
Pam (another one)
Energizer Bunny is my future
:-)


pam
if i am crazy enough to post all this stuff on an open forum, i am certainly not worried about who reads it

several IRs have expressed incredulity at my open posts

but i dont care, i could retire in shame to italy any day now!
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Re: THINGS I LEARNED IN FERRARA #2 THE ULTRASOUND

Postby drsclafani » Tue Jun 15, 2010 6:49 pm

simone wrote:
drsclafani wrote:That ultrasound is quite specific. The Doppler is quite relevant and the images need to be taken in just the right way, otherwise the diagnosis is unclear.


So it is clear that we need to create a standard. that standard needs to be specific, reproducible and simple.


by the time i learn this one, paolo may have perfected a US test that is easier to do with similar reliability.



Is anyone in the US or anywhere doing that?


no, he is really trying to validate it. He is not ready to publish

What are your thoughts on how to create a standard? [ If you don't mind]


a standard should be evidence based, practical and reproducible. It should be inclusive but with high expectations. It should be reviewable, and available. It should be by consensus.

ps did i hear dr Z say they are going to do a blinded study of sort? ( brain fog is getting worse)


yes
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Postby drsclafani » Tue Jun 15, 2010 6:51 pm

CureOrBust wrote:
drsclafani wrote:
magoo wrote:Dr. Sclafani,
Can you explain why people who have had treatment sometimes have a return of old symptoms when sick? ...

...i am not sure that "illness" brings on old symptoms when sick. perhaps it is the stress? I will look around.

if illness leads to stress???...
I have had MS symptoms for around 15 years (but have yet to be treated for CCSVI). My ONLY trigger for a relapse (ie new or worsening/return of old symptoms) is a cold/flu (ie illness). If I get a "bug" I can be guaranteed to have a relapse , no matter how minor the illness is. I have NEVER noted a relapse from stress, but I am not known as someone who is stressed easily.

I am not the only one who has this pattern, and when I told my neurologist, he said it was quite common to have a flair after a "bug".


infections cause stress. it could be physical, not necessarily emotional stress. just a guess
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Postby HappyPoet » Tue Jun 15, 2010 6:54 pm

WB Dr. Sclafani :)

I apologize for being late to welcome you, but it took this long for me to finally finish reading to the end of the thread. Why, sometimes I thought I'd never make it here! In more ways than I can count, your trip was a huge success and gives all of us so much hope.

Your wonderful idea for honoring Bridget Wehmeyer by naming your study after her also gives all of us much-needed hope. The original 6/1/10 posts follow:

girlgeek33 wrote:Today I learned of someone, a friend, that lost her battle with this MonSter. She was only 45. She had been in the hospital for several weeks on saline and steroids. Aren't Doctors supposed to do everything they can to help a patient live? Shouldn't an MS patient at that stage be able to be tested in the hospital in order for Doctors to all they can to preserve life? Isn't the possibility of the vascular connection enough at that point in the course of this disease for them to test and potentially treat? I am disgusted that we as MSers are constantly given minimal care because we have MS and things are just blamed on our disease!!! When did we become second class citizens?!

HappyPoet wrote:<tears>

soapdiva884 wrote:I am so sorry this had to happen. I agree, MS is blamed for everything and the correct care is not always given.
(((hugs to you)))

pollywogsis wrote:Hi,

I am so sorry to hear of your friend. To not intervene when the doctor's have taken an oath to operate under the "Best interest of the patient and preserve life" is paramount to murder.

I would contact the media!

my codolences

Thorouly disgusted,
PWS
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Re: How is a study conducted?

Postby drsclafani » Tue Jun 15, 2010 7:07 pm

Rosegirl wrote:Hi, Dr. Sclafani,

When your study is approved (!), how many doctors will be participating in it by actually doing venagrams on patients? Do you have a goal of the number of patients and/or treatments that you plan to perform each week/month of the study? How will you deal with the huge backlog of patients who are already on your waiting list?


my study is a safety study and calls for ME to do each study. I will have assistants but i will be the primary operator of each case. After 200 cases, we should be able to triple the rate of procedures. I would like to perform 10 per week, but need additional neurologists to do intake to get to that level. We are trying to recruit now.

The MS community may not have most of our neurologists on the CCSVI bandwagon, but it's more critical that we have IRs that are trained and able to treat us. How heartbreaking that so many doctors and patients are currently "operating under the radar" for fear of reprisal.


hopefully those operating under the radar are applying for institutional review and oversite. Some have asked to piggyback on my protocol. As i get going, i will surely offer opportunities for IRs to visit my operation, get some lecture and training.

And, finally, do you have a plan to share with other IRs the incredible gift of satisfaction that comes from being able to make such a huge and positive contribution to patients and their families?


i do that all the time. i have a big training program of 33 residents.
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Postby drsclafani » Tue Jun 15, 2010 7:21 pm

Daisy3 wrote:Hi Dr S,

My husband has been-recently-diagnosed with MS. It's also a rare form of MS too,known as RPMS. It seems a lot like PPMS.
Have you any experience with RPMS?
My slight worry is that when we do finally have the investigations done they won't find anything wrong with him.

Dr Zamboni did not mention this type of MS as far as I know..


I have no experience with this classification.
see below


Progressive-relapsing and relapsing-progressive multiple sclerosis: a re-evaluation.
Kremenchutzky M, Cottrell D, Rice G, Hader W, Baskerville J, Koopman W, Ebers GC.

Department of Clinical Neurological Sciences, University of Western Ontario, London, Canada.
Abstract

Classifications of multiple sclerosis subtypes have been largely based on clinical phenomenology. Nevertheless, definitions of relapse, remission and progression have been imprecise. Recently an international consensus group, as part of a reclassification of disease subtypes, recommended dropping the term 'relapsing-progressive' (RP) and retaining the term 'progressive-relapsing' (PR) multiple sclerosis. The term 'RP' multiple sclerosis had been applied when the early course combined both relapses and progression and was believed to identify some patients with a worse than average outcome.
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Postby drsclafani » Tue Jun 15, 2010 7:29 pm

Vonna wrote:Hello Dr. Sclafini,
Thank you so much for taking valuable time to respond to our questions. We have so much respect for you and what you are doing!

I recently talked a local interventional neuroradiologist into doing the catheter based venogram. He seemed interested at first, then he must have learned that CCSVI is "controversial". He did it to "appease" me saying before the procedure that no matter what he saw he would not be treating it. With this, the procedure was done. While still lying on the procedure table, he told me that blood was draining adequately, and that there was nothing unusual.

He asked me if I would like to see the scans. I have seen a few before and after scans on CCSVI patients, so I was eager to see my own. From what I saw, the azygos looked normal at a glance.

The left jugular had a "twist" in it, although blood seemed to be getting through pretty good. I could tell that the blood was flowing because the contrast showed up as "cloudy" or "transparent". In other words, the contrast was not so thick that it completely filled the entire vein. I hope my attempt at describing this makes at least a little sense!

The right jugular looked very different from the left. Instead of one vein, two very prominent veins showed up! One was slightly wider than the other. The contrast in these two veins on the right side looked very different. The contrast in the slightly thinner vein showed up as on the left side. It was "transparent", or in my mind showing motion. However, the wider vein was completely filled with contrast. You could not see through it. It showed up much darker and more concentrated. It was hard to tell if this blood was actually draining because near the bottom of the scan, these two veins seemed to meet up and become one. As I viewed the section at the bottom, it looked more like the blood was actually only draining from the thinner vein because it had the same consistency, transparency, and amount as the thinner vein. I could immediately tell that the amount of blood trying to drain in the upper part of the scans was much more than what was actually draining.

To add to this, there was a large amount of collateral veins on the right side, at the top portion on the scans.

My immediate impression was that the wider vein was my jugular vein. It was stenosed to the point that my body had tried to compensate by making a new, thinner vein that was indeed draining some amount of blood. The collateral veins were also an attempt by my body to drain blood, although the collateral veins didn't seem to have an outlet.

I asked the radiologist why two veins showed up instead of one. He said that one was my internal jugular, and one was my external jugular. I didn't think to ask him why both my internal jugular and my external jugular had not showed up on the left side.

When I asked about the "web like" veins, he said they were collateral veins, and that this was completely normal. At this point, I thanked him. In my mind, I felt like I had the pictures to show stenosis and that was a great step! I determined to get the scans and have them evaluated by someone who could help me. So, a couple weeks ago I sent the scans off to you! :o)

Can you answer these questions in general?

Is it normal to have two prominent veins show up on the venogram? Could this possibly have been an internal and external jugular? Are collateral veins normal? Does it make sense that the "transparency" I am describing is the blood flowing while the darker, more concentrated view is a sign of stenosis because the blood has nowhere to go and is refluxing?

I look forward to your answer!

Lavonna


off line, lavonna
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Postby CureOrBust » Tue Jun 15, 2010 9:09 pm

patientx wrote:And not to say that the infections don't initiate an actual relapse in your case Cure, but many definitions of an "official" relapse specifically mention new or worsening symptoms in the absence of an infection (cold, flu, bladder infection, etc.) - the difference between a "flare" or "exacerbation" and relapse.
No, thank you, and no offence taken, this is actually interesting, as it would imply I have possibly never had an actual clinical relapse, as all mine have followed an infection.

Although it's not a specific question OR answer, but your whole post with "So now i will do all my catheterization from the left femoral approach, even though I don't like to." was worth its weight in platinum. The whole post.

Also, I note on your visit to Italy, Erica Menegatti (Zamboni's personal ultrasound hero) provided a demonstration with explanation of the Doppler procedures utilized. Was anyone filming this???
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Postby hopeful2 » Tue Jun 15, 2010 9:19 pm

Welcome back Dr. Sclafani. I feel like what you observed and learned in Italy will likely benefit many patients. Your comments on PPMS and lumbar veins sound promising. I'm not PPMS but am aware that we need to find more solutions to help with these cases. Benvenuto in America, Dottore. :D
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Baloon Angioplasty

Postby Opera » Wed Jun 16, 2010 2:39 am

Dear Dr Scaflani,

Of the patients you have treated for CCSVI, did you have any who showed improvements only after several weeks?

I underwent the procedure about three weeks ago but have not experienced any improvements to the symptoms. It is possible I have restenosed. I have scheduled a follow-up doppler for next week.

With best wishes

A Big Fan
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Re: Baloon Angioplasty

Postby girlgeek33 » Wed Jun 16, 2010 3:57 am

Opera wrote:Dear Dr Scaflani,

Of the patients you have treated for CCSVI, did you have any who showed improvements only after several weeks?

I underwent the procedure about three weeks ago but have not experienced any improvements to the symptoms. It is possible I have restenosed. I have scheduled a follow-up doppler for next week.

With best wishes

A Big Fan


I have a couple of friends that were not happy initially but then after some time, and going to a physical therapist, the physic said there was definite improvement and that in time the strength would come back. Our bodies do need to get used to our new found health. especially muscles that are not used to being able to move freely...
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