DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby CureOrBust » Fri Aug 17, 2012 3:41 am

NZer1 wrote:
CureOrBust wrote:I have had two treatments in Australia. After these two, I went and saw Dr Thibault and his sonographer for a follow up, and they could not find any evidence of CCSVI. I was then treated by Dr S in Brooklyn, and he did find evidence using the ultrasound, and also more than one location to treat. NB I am a non responder. :sad:

When I go to see Paul this is the sort of info I need to be telling him. He is in favour of IVUS and there isn't interest from the IR's, so its a problem for us all at the end of the day.
The areas that Sal found may not have been detectable with Doppler, eg azygos. Where were the areas Sal found using ultrasound Cure?

Sal are you able to help in this, I want to give Paul the benefit of your experience, even if he doesn't contact you for what ever reason to ask for help!

If Paul doesn't get this feed back nothing will change!

Dr Sclafani, please feel free to provide Nigel the information regarding the locations found by Ultrasound and those identified by IVUS. Its good to hear he is now interested in IVUS, in my treatment. I remember the last time I saw him I explained to him what it was. He hadn't heard of it, at least not as IVUS. I should really set up another appointment for a scan.

From memory, I had no treatments of the Azygos. I do remember the ballooning in my Jugulars. It hurt!
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Re: DrSclafani answers some questions

Postby Lety » Mon Aug 20, 2012 8:46 am

hello to everyone here in the forum and in particular to Prof. Sclafani, I am new here but read you for a long time (I'm sorry my English is not so good, I'm from Germany, hope you understand me anyway).

Prof. Sclafani, as you know I'm interested in a treatment, I am plagued by uncertainties, unfortunately, that's why I could not decide yet.

Can you please tell me how high the risk of complications from a stent is (you had cases in which stents were used and it still came to restenosis?)

Then you have to take blood thinners for life?

Is it according to your experience that problems with legs, bladder, bowel are associated with Problem to the Azygosvein?

Thank you in advance for your answer.

Best Regards

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Re: DrSclafani answers some questions

Postby CureOrBust » Sat Aug 25, 2012 1:56 am

A little off topic, but have you been in contact with anyone (or yourself?) performing CCSVI treatments for Lyme? This web page says that they present with 3-4 of Zamboni's criteria; compared to our measly 2.
http://betterhealthguy.com/joomla/blog/242-a-deep-look-beyond-lyme
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Re: DrSclafani answers some questions

Postby Cece » Sat Aug 25, 2012 1:47 pm

CureOrBust wrote:A little off topic, but have you been in contact with anyone (or yourself?) performing CCSVI treatments for Lyme? This web page says that they present with 3-4 of Zamboni's criteria; compared to our measly 2.
•There are 5 parameters that are looked at during a CCSVI evaluation. In MS, 2 of 5 are often observed. In Lyme, it has been closer to 4 of 5 and in autism, it is often 5 of 5. The best Lyme patient thus far was 3 of 5. Lyme patients, on average, test worse than MS patients.
Do you think he's likely to publish on this? I'm not familiar with who Dr. Klinghardt is.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Aug 29, 2012 4:10 pm

Sake

Thanks once again for your response Dr Sclafani. I discussed your thoughts regarding this type of complication with my surgeon although he does not believe that my case is caused by thrombosis. He also advised that he would be very open to discuss with you the details of my recent procedure and complications regarding the occlusion, for your thoughts and comments. Would it be ok if I included you in an email to him via your ccsviliberation@gmail.com email address in order to initiate this contact?


Yes, of course, sake. I would be delighted to speak with any colleagues who are treating ccsvi. It is lonely here you know
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Aug 29, 2012 4:18 pm

NZer1 wrote:Another piece of news from FaceBook;
Jenna Mach
Hi Dr. Arata, I am sure you had a chance to see the video and know the theory of Atlas Orthognal; does this have a merit, sounds very convincing and very logical but we have been "showered" with so much logic but nothing seems to be "IT" and yet we go after all what has been served from the "MS ALMOST CURE” Menu. Would appreciate your input, Jenna.
Mike Arata;
Stylocervical compression identified at venography is the most common cause of lack of response with CCSVI treatment. Atlas alignment therapies such as NUCCA seem to relieve stylocervical compression. This leads to conversion of non-responders in most cases. This is the case even if both jugulars are occluded.
https://www.facebook.com/Dr.Arata

Thoughts?

Nigel

Stylocervical compression is something that is more apparent on MRV than on catheter venography. when i look at these narrowings with IVUS many of them seem to be phasic. In other words rotation, flexion or extension of the neck allows the vein to take on a larger diameter with better flow.

Is this a normal physiological situation? Does relieving this narrowing result in sustained clinical improvements? Do they need treatment? Tough questions with unclear answers so far.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Aug 29, 2012 5:12 pm

NZer1 wrote:I am going to see Dr Paul Thibault in Australia and have a Doppler check of my Veins in a week or two. He is the one who DXed the CPn Bacterial infection of my 'brain'.
I am looking forward to step one of the journey to your operating theatre.
I got the news about the other case and wondered if there is something happening in the Southern Hemisphere?
The Australians are set in their minds about the findings not all being valves etc and it interests me!
The talk some time back from Mike Arata was much the same but opposite, that everything was valves.

So as an observer, I am observing and wanting to get some thinking going and feed back.:)

Nigel


NIgel, since no one in the Southern Hemisphere is using a test that looks in detail at the valves, how can they be sure that these narrowings are not valves?



in my experience narrowing of the venogram is caused in decreasing order of frequency by

1. Valve immobility at least 85%
2. muscular compression
3. hypoplasia
4. septum
5. C2 bony compression
6. prior occlusion
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Aug 29, 2012 5:17 pm

CureOrBust wrote:
NZer1 wrote:I am going to see Dr Paul Thibault in Australia and have a Doppler check of my Veins in a week or two. He is the one who DXed the CPn Bacterial infection of my 'brain'.
I am looking forward to step one of the journey to your operating theatre.
I have had two treatments in Australia. After these two, I went and saw Dr Thibault and his sonographer for a follow up, and they could not find any evidence of CCSVI. I was then treated by Dr S in Brooklyn, and he did find evidence using the ultrasound, and also more than one location to treat. NB I am a non responder. :sad:


a courageous person, traveling alone to brooklyn, cureorbust was my first patient from the southern hemisphere. Sorry i could not achieve improvement, Cureorbust
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Aug 29, 2012 5:28 pm

NZer1 wrote:
CureOrBust wrote:
NZer1 wrote:I am going to see Dr Paul Thibault in Australia and have a Doppler check of my Veins in a week or two. He is the one who DXed the CPn Bacterial infection of my 'brain'.
I am looking forward to step one of the journey to your operating theatre.
I have had two treatments in Australia. After these two, I went and saw Dr Thibault and his sonographer for a follow up, and they could not find any evidence of CCSVI. I was then treated by Dr S in Brooklyn, and he did find evidence using the ultrasound, and also more than one location to treat. NB I am a non responder. :sad:


When I go to see Paul this is the sort of info I need to be telling him. He is in favour of IVUS and there isn't interest from the IR's, so its a problem for us all at the end of the day.
The areas that Sal found may not have been detectable with Doppler, eg azygos. Where were the areas Sal found using ultrasound Cure?

Sal are you able to help in this, I want to give Paul the benefit of your experience, even if he doesn't contact you for what ever reason to ask for help!

If Paul doesn't get this feed back nothing will change!

Nigel



I found bilateral stenosis of the J1 segment of each internal jugular vein. My records show that there were immobile valves causing about 60-70% stenosis. There was also hypoplasia of the ascending lumbar vein. 18 and 20mm balloons were used requiring 13-15 atmospheres.

non-responder? perhaps. but perhaps the valves just will not stay open. perhaps surgery or stenting would have a better chance.
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Re: DrSclafani answers some questions

Postby CureOrBust » Thu Aug 30, 2012 3:29 am

drsclafani wrote:non-responder? perhaps. but perhaps the valves just will not stay open. perhaps surgery or stenting would have a better chance.
History has shown that re-stenosis is an issue. The one thing that was disheartening was that a lot of people notice some if not amazing spontaneous improvements. My MS felt no different. And don't concern yourself / second guess, if you hyad offered stents for the Jugulars, I would of declined, for now.

I have been planning a trip for a new ultrasound, I'll send you an email with some questions I should request they take special care in checking.

I am the biggest non responder to everything. Interferons, ABX, Aimspro, Gilenya, AO ...

cureorbust was my first patient from the southern hemisphere. Sorry i could not achieve improvement
I thought there was someone else before me from Aus? One thing that is a clear memory, was after the procedure, the clinic staff put on the internet radio and selected Australian Hits for my benefit. A certain Australian female singer was played and Dr S let us all in a small crush he had on her. At the time I didn't know it, but by unfortunate chance, she also has MS now. And only a few months ago a TV programme they showed here a story of her travelling to Brooklyn for CCSVI treatment. :-H

As for the Improvement, I understand we are still at the beginning of the understanding and treatment of CCSVI and its relation to MS, so there are no guarantees. It almost upset me more that I could not go home to my Neuro with some better substantiation of my "crazy" path I am investigating.
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Re: DrSclafani answers some questions

Postby NZer1 » Thu Aug 30, 2012 3:56 am

Cureorbust, I have just got off the plane from being over and seeing Paul. Did you have his CPn blood test? I did while I was there and waiting on results. I am yet to read the results from Warrens Ultrasound and I want to send it to Sal. BTW Sal Paul is very keen to talk, he is snowed under with all the work leading to this moment in time and I hope to be able to get help for his investigations. He is almost on his own with the study he is doing as well as his normal practise work. It all sounded very positive in his approach to the science of his CPn investigation. He absolutely does NOT have blinkers on BTW. He was fantastic to talk with and has his heart and mind in the right place.
Will need to get my CD of the ultrasound to Sal so some feedback can happen for Warren the Sonographer who is very particular and cautious as well!
Regards,
Nigel
Need to get 3 days worth of sleep that I missed out on!
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Re: DrSclafani answers some questions

Postby NZer1 » Sun Sep 02, 2012 11:18 pm

Dr S I am not sure if I have suggested this before,
I think with the talk on CPn and Lyme and the coincidence of CCSVI that having bloods done as part of your work up, pre PTA, may be a way to confront the restenosis/vascular infections that is found in some people and also to get a balanced picture on 'issues' that may get across the BBB, due to reflux, that will need attending to in order to address the symptoms of those invaders, as well as dealing with the standard IVUS findings at PTA?
There is also the issue of some Labs consistently coming back with negatives to contend with, quote from Dr Paul Thibault;

    "Why there is so much variance in Cpn serology results is probably due to sourcing of the reagents, but I haven't enquired into that at this stage."

Thoughts?

Regards
Nigel
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Re: DrSclafani answers some questions

Postby dlynn » Mon Sep 03, 2012 7:39 am

Dr. Sclafani,
When stenting the renal vein, does the patient receive "conscious sedation" as in CCSVI procedure?
And do you enter the femoral vein?
If I recall correctly, you addressed this topic several pages back, but I can't find it.
thank you!
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Re: DrSclafani answers some questions

Postby NZer1 » Mon Sep 03, 2012 1:42 pm

Cureorbust and Dr S I have forwarded to Paul Thibault the feed back!
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Re: DrSclafani answers some questions

Postby Cece » Mon Sep 03, 2012 6:55 pm

CureOrBust wrote:A certain Australian female singer was played and Dr S let us all in a small crush he had on her. At the time I didn't know it, but by unfortunate chance, she also has MS now. And only a few months ago a TV programme they showed here a story of her travelling to Brooklyn for CCSVI treatment. :-H
Lol! She was also in attendance at the CCSVI Patient Day last year. Rock stars, Montel, Dr. Sclafani, Wheelchair Kamikaze...rather a celebrity-packed event!
I found bilateral stenosis of the J1 segment of each internal jugular vein. My records show that there were immobile valves causing about 60-70% stenosis. There was also hypoplasia of the ascending lumbar vein. 18 and 20mm balloons were used requiring 13-15 atmospheres.

non-responder? perhaps. but perhaps the valves just will not stay open. perhaps surgery or stenting would have a better chance.

Have you seen any association between the percentage of stenosis and whether or not the stenosis stays open in the long-term?
Previously another doctor suggested that the best chance at success is on the first procedure. (Obviously this would not hold true for any stenoses that were missed on that first procedure.) But that made me wonder if the stenosis is at its highest grade or most resistant on that first procedure, and if that would mean the localized pressure on the stenosis would be higher?
Conversely a higher-grade stenosis would mean more residual valve material and more of a chance to restenose due to that. It would be nice to be able to predict restenosis, even roughly.
in my experience narrowing of the venogram is caused in decreasing order of frequency by

1. Valve immobility at least 85%
2. muscular compression
3. hypoplasia
4. septum
5. C2 bony compression
6. prior occlusion

#1, 3, 4, and 6 would require an IR or vascular surgeon to treat, if treatable. #5 bony compression gets a lot of discussion here at TiMS but I see you ranked #2 muscular compression as being more frequent. Solutions previously brainstormed were using botox to completely relax the muscle or trying neck stretching/massage/heat. Would you term these compressions to be 'secondary CCSVI'?
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