DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby Rosegirl » Tue Oct 30, 2012 6:43 pm

Dr. S,

Is there a data base yet that can provide any correlation between locations of problems, treatment methods and relief of specific symptoms?

If so, how many patients, procedures and doctors are included? And are there any other potential uses for the data base?

And regardless of the existence of a comprehensive data base, are you still seeing the one-third ratios of patients in terms of their remission of symptoms?
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Oct 31, 2012 3:18 pm

Rosegirl wrote:Dr. S,

Is there a data base yet that can provide any correlation between locations of problems, treatment methods and relief of specific symptoms?

If so, how many patients, procedures and doctors are included? And are there any other potential uses for the data base?

And regardless of the existence of a comprehensive data base, are you still seeing the one-third ratios of patients in terms of their remission of symptoms?


sorry rosegirl, i am a bit up to my shoulders with hurricane sandy

i have a patient in my office, just completed procedure and now i find that they have closed the bridges, making it a problem for the poor man to get to his wife and child in manhattan. I am going on a road trip tonite trying to get him onto manhattan island. how exciting
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Postby munchkin » Mon Nov 05, 2012 9:23 am

Hello Dr. S

My thoughts are with everyone who has been affected by Sandy.

When you have had to use stents; have you noticed a difference in how the vein heals if you have had to use a stent during initial treatment vs a stent placed after a vein has healed between venoplasties?

Thanks
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Re: DrSclafani answers some questions

Postby bruce123 » Wed Nov 07, 2012 6:59 am

My wife and I met a couple from Jersey in Dr. Sclafani's office on Oct. 24. If you would like to get in touch please send me a pm.

Bruce.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Nov 07, 2012 11:29 pm

munchkin wrote:Hello Dr. S

My thoughts are with everyone who has been affected by Sandy.

When you have had to use stents; have you noticed a difference in how the vein heals if you have had to use a stent during initial treatment vs a stent placed after a vein has healed between venoplasties?

Thanks

I have noticed two responses: healing and healing with intimal hyperplasia. I have not been able to predict when intimal hyperplasia will occur.

I rarely use stents during the initial visit so I cannot make an experienced opinion about cases of initial stenting. The only indication I use for initial stenting in intimal dissection requiring stenting to maintain blood flow. It is very uncommon.
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Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Nov 07, 2012 11:31 pm

drsclafani wrote:
Rosegirl wrote:Dr. S,

Is there a data base yet that can provide any correlation between locations of problems, treatment methods and relief of specific symptoms?

If so, how many patients, procedures and doctors are included? And are there any other potential uses for the data base?

And regardless of the existence of a comprehensive data base, are you still seeing the one-third ratios of patients in terms of their remission of symptoms?


sorry rosegirl, i am a bit up to my shoulders with hurricane sandy

i have a patient in my office, just completed procedure and now i find that they have closed the bridges, making it a problem for the poor man to get to his wife and child in manhattan. I am going on a road trip tonite trying to get him onto manhattan island. how exciting


neither rain nor snow keeps me from my appointed rounds. Patient was delivered to their hotel on the upper west side near central park without incident. I rewarded myself with two frozen pomegranate marguiritas with no salt at Rosa Mexicana, across the street from Lincoln Center.
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Re: DrSclafani answers some questions

Postby Lety » Thu Nov 08, 2012 2:55 am

drsclafani wrote:
drsclafani wrote:
Rosegirl wrote:Dr. S,

Is there a data base yet that can provide any correlation between locations of problems, treatment methods and relief of specific symptoms?

If so, how many patients, procedures and doctors are included? And are there any other potential uses for the data base?

And regardless of the existence of a comprehensive data base, are you still seeing the one-third ratios of patients in terms of their remission of symptoms?


sorry rosegirl, i am a bit up to my shoulders with hurricane sandy

i have a patient in my office, just completed procedure and now i find that they have closed the bridges, making it a problem for the poor man to get to his wife and child in manhattan. I am going on a road trip tonite trying to get him onto manhattan island. how exciting


neither rain nor snow keeps me from my appointed rounds. Patient was delivered to their hotel on the upper west side near central park without incident. I rewarded myself with two frozen pomegranate marguiritas with no salt at Rosa Mexicana, across the street from Lincoln Center.



Hello Dr. Sclafani

Wow, that is not common and that would not make every doctor, I think your reward had to be much more than two frozen pomegranate marguiritas :wink:

A thought from me: see that, unfortunately, only a few of your patients report how they are doing after the treatment

Would it be possible for you to report to us? Of course, only anonymous and only a few recent cases, for example :
patient's age, date of diagnosis, MS type and result


Of course, only if it allows your time

Thank you

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Re: DrSclafani answers some questions

Postby NZer1 » Thu Nov 08, 2012 1:02 pm

NZer1 wrote:Dr S have you heard any more from Paulo about the collar and if it will be a commercial 'tool'?

Other question have you been able to advance your understandings of VV's?

Franz Schelling made a comment to me that PwMS do better if they don't move, at all! I like his sense of humour and think that the reflux of the VV's, is, as he says an area that is poorly understood and has much more effect on symptoms than we are currently aware!

Good to see you back, all nice and refreshed, with a belly full of food!
Nigel


I notice from my reading that Intracellular gram negative bacteria are Anti-Apoptotic. That could produce all sorts of issues for intra-vascular infections and PTA, don't you think! Cells not dying at a Natural time and having their ATP stolen by the infection as well, imagine the symptoms that would create in any/every part of the body that could mean diseases/symptoms like MS, Alzheimer's and Parkinson's and so, on and so on!
Oh that's right those are the same diseases that have CCSVI commonality!

CPn being so common, 'extremely' difficult to dx and outcomes from PTA being variable without known reason, as yet!
Co-Incidence that vascular infections are the most published issues for CPn infections?

https://apps.facebook.com/forumforpages ... c7fdecb7/0

Makes testing for CPn and Lyme go Hand in Hand with PTA imo!

Regards,
Nigel
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Re: DrSclafani answers some questions

Postby Cece » Sat Nov 10, 2012 11:41 am

I never had a pomegranate marguerita, they must be good?
It's strange that you don't encourage patients to choose hotels in Brooklyn.... :wink:
Any interesting cases lately? Preparation for upcoming conferences?
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Re: DrSclafani answers some questions

Postby drsclafani » Sat Nov 10, 2012 12:07 pm

Cece wrote:I never had a pomegranate marguerita, they must be good?
It's strange that you don't encourage patients to choose hotels in Brooklyn.... :wink:
Any interesting cases lately? Preparation for upcoming conferences?


based upon my suggestsion, most patients spend the evening before and after treatment in brooklyn. I want them close to my home on the rare instances when something is troubling to them after treatment. I encourage, if they can afford the extra expense, those that want to visit nyc to move to a hotel in manhattan which is closer to all the fun and siteseeing.
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Re: DrSclafani answers some questions

Postby Robnl » Sun Nov 11, 2012 1:50 am

drsclafani wrote:
Cece wrote:I never had a pomegranate marguerita, they must be good?
It's strange that you don't encourage patients to choose hotels in Brooklyn.... :wink:
Any interesting cases lately? Preparation for upcoming conferences?


based upon my suggestsion, most patients spend the evening before and after treatment in brooklyn. I want them close to my home on the rare instances when something is troubling to them after treatment. I encourage, if they can afford the extra expense, those that want to visit nyc to move to a hotel in manhattan which is closer to all the fun and siteseeing.


Well, a good option is the Best Western Prospect Park in Brooklyn, great/friendly, 25 minutes walk to the clinic (15$ taxi) and 139$ per night (manhatten hotels are much more expensive). Taxi to Times Square is 35$
And Brooklyn also has nice things to see (prospect park, Downtown Brooklyn, 5th avenue)
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Re: DrSclafani answers some questions

Postby mo_en » Sun Nov 11, 2012 2:59 pm

Dear doctor, how good is angiography in visualising the confuence of sinuses? Is MRV better? I ask this because, as i understand it, Dr Schelling considers the patency of the confuence critical in the ability of the jugular veins to be used as natural alternative flow path of each other.

I find it puzzling that there are patients who have apparently solved their major extracranial vein issues but continue to experience CCSVI symptoms without the slightest improvement.
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Re: DrSclafani answers some questions

Postby Kleiner » Wed Nov 14, 2012 9:31 am

drsclafani wrote:
Kleiner wrote:Still here...reading several times a week...still trying to decide when to take the plunge...


what needs to be answered to make a decision?



I've been thinking of how to answer this question. I think I know deep down that I will eventually get the procedure done. It just seems that little things keep stalling my progress. Most recently I finally met with a doctor (vascular surgeon) here in Ontario that was willing to talk to me and actually give me some advice (I've been to many who knew nothing of CCSVI and refused to learn or just wouldn't speak about it with me at any length). This doctor applied to be part of the clinical trials getting underway here and I was on the list to take part. Unfortunately, his group was not awarded the trial. In fact, no one in Ontario will be part of the trial. So, back to the drawing board for me.

From everything I have read I think the CCSVI procedure will help with my symptoms. My main symptoms are constant dizziness/light-headedness, lack of energy, daytime tiredness (sleep apnea), headaches, cog-fog and some slight balance issues. This is on a very basic level, unlike some of the members on here science is most definitely not my forte (I'm an accountant!) and I quite often get lost in the scientific detail of some of these posts.

I have had CCSVI testing at the Port Perry clinic which showed 4/5 of the criteria for CCSVI (Dr. you were kind enough to translate my report in this thread a couple of years ago).

I think the lack of support around here (from my family doctor and other doctors I have reached out to) is really making me hesitant to proceed even though I know it is probably in my best interest. Although I feel the effects of this everyday and generally feel unwell if this was more physically disabling I think I would have already had this done. And because I can still get through the day, albeit a struggle some days, I haven't had that push to make the next move. On the flip side...what kind of damage is taking place while I wait??

Sorry for the rambling...I guess the short answer to the question is a little bit of confusion on the right time to proceed and lack of local support.

Thanks for your time and dedication.
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Re: DrSclafani answers some questions

Postby CureOrBust » Thu Nov 15, 2012 3:14 am

Kleiner wrote:... Most recently I finally met with a doctor (vascular surgeon) here in Ontario that was willing to talk to me and actually give me some advice ...
Kleiner wrote:... and lack of local support...
What happened with the local Vascular Surgeon you spoke to previously?
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Re: DrSclafani answers some questions

Postby vesta » Thu Nov 15, 2012 7:35 am

Kleiner's symptoms sound like lack of oxygen in the brain due to poor blood circulation, a result of CCSVI. When I heard about CCSVI I immediately began to ask for a neck massage forcing the blood down towards the heart which is enough to stop an "attack" for me. I also give myself a daily Acupressure treatment with a TENS electrical stimulation device. These might be interim options until K can get the angioplasty procedure done.
As I understand it, to prevent restenosis the balloon in angioplasty has to be large enough to open the vein sufficiently. However, if it is too large there is the risk of damaging the vein wall which could lead to thrombosis, in my opinion a rather serious outcome.
Dr. Sclafani, what percentage of your patients in the last year, for instance, have experienced restenosis, or worse, thrombosis of treated veins?
Perhaps with the use of IVUS etc these complications are no longer a problem. What are the current success rates of angioplasty intervention?
For interim self help ideas check out MS Cure Enigmas.net
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