DrSclafani answers some questions

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

Postby Zeureka » Sat Apr 24, 2010 12:11 am

Dr Sclafani,

When had heard of Kuwait action and results, thought this it! I was hoping this would open up the doors! Thanks so much for reporting to us about your views on the protocols (could not have been more positive!) and efforts for sharing experiences with Kuwait and other CCSVI researchers!

In case you would have any additional comments on the following statements?

confirms the association between ms and ccsvi.....surprise!
CTV News Article 9 April: >>CTV News has confirmed that Kuwait's minister of health has given interventional radiologists in the country the go-ahead to use the state-financed medical system to begin treating patients who have blocked veins and abnormal blood flow in their necks...
The procedure will not be performed to treat MS per se but to treat only "improper blood flow" in the veins. So we say this is a vascular problem in the neck. Patients, when you dilate the veins, they feel better. We don't have to talk about MS or the link to MS," said Sinan.<<

>>No stents were used in the procedures, a practice some doctors around the world have tried and one that Dr. Zamboni does not endorse.<<

=> This non-MS approach and general anti-stent policy does now not seem to reflect the protocols? Stating:
>>AIM & OBJECTIVE:
In Kuwait the MS patient is increasing and it is estimated about 3000 – 6000 patients. This program started in March. 2010, it is multidisciplinary approach, vascular diagnostic lab. doctor, vascular surgeon, and vascular intervention radiology, radiologist and neurologist.

Our objective to diagnose MS patient with Chronic cerebrospinal venous insufficiency (CCSVI) and to evaluate them with Duplex scanning and magnetic resonance venography and to evaluate clinical and or radiological improvement of these cases after treating them with angioplasty with or without stent of the diseased affected part of the internal jugular vein,

This method is a new application of a standard procedure that may be helpful in relieving some of the symptoms of MS patients with CCSVI and it was advocated in Italy, Poland and USA. In Kuwait we would like as usual to lead the way in the Gulf state and Arabian countries to study and assess the feasibility of such a new method of possible clinical improvement of some or all of the symptoms of MS patients which may help improve quality and functions of the patients and whether or not reach and meet our expectation, therefore we will do a pilot study of 100 patients and evaluate clinical improvement by a neurologist at 1, 3, 6, and 12 months. Colour Duplex scan at 1, 3, 6, 9, and 12 months intervals. MRV at 6 and 12 months intervals. MRI brain at 3, 6, and 12 months intervals. If the initial results of the study fulfilling our objectives then we will do more cases and continue the study for 1 year to include total 500 cases at least.<<

some clinical improvements great!
GREAT INDEED what is stated in addition to the improvements list Johnnybaby248 reported already from the link: http://www.ccsvikuwait.com/Details.aspx?d=4
>>THE RESULTS:
The angiography may stop MS progression, BUT it cannot
fix all symptoms, especially if axons have already been lost.
However, some symptom improvements (anecdotally reported) are
immediate, such as increased visual acuity and decreased (or
eliminated) brain fog, tinnitus, and fatigue.<<
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Postby zenja » Sat Apr 24, 2010 3:49 am

What do you make of the use of Valsalva manouver. Is it helping or damaging? As described by GuRu in this thread...

http://www.thisisms.com/ftopict-11340.html

Thank you for taking your time here.
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Thyroid

Postby silverbirch » Sat Apr 24, 2010 6:35 am

Dr Sclafani

2009 I attended hosp with stroke ? two weeks found out MS 3 lesions LP positive DX RRms/CIS no dmd prior to this I never had any problems migrains treated with counter meds.

Just attended (for the 1st time) The National Queen Sq London had , a third MRI awaiting new results bloods normal
Except TSH 5.5G (N.R.D.27-4.20) /FREE T4 13.5 following a search on net this is Thyroid?
Told Dr I like CCSVI they understood and were not cold.....

If I understand this correctly? then the text below supports evidence on Dr Z's/ Dr Sclafani CCSVI theory assuming this -I can then ask for my venous vascular system to be checked on NHS prior to me being placed on meds .
Am I correct ? if I’m correct Ill be strong and wont be fobbed off I need confirmation.

Wikipedia Thyroid (source of info)
The thyroid is supplied with arterial blood from the superior thyroid artery, a branch of the external carotid artery, and the inferior thyroid artery, a branch of the thyrocervical trunk, and sometimes by the thyroid ima artery, branching directly from the brachiocephalic trunk. The venous blood is drained via superior thyroid veins, draining in the internal jugular vein, and via inferior thyroid veins, draining via the plexus thyroideus impar in the left brachiocephalic vein .

Funny one of my complaints is Rash on neck under ear lob (under skin )
R side of neck like a board evident on touch hot ear / occasionally ear sound disturbance. Cracking in neck. Palpitations on/off.

I weigh 8/9 stone lost 3 stone since attack in 2009 - it sounds like thyroid .

I’m booked EHClinic 9th July CCSVI screening / Also on Ameds awaiting next stage date - any how....

Apologies for long email

Silver
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Dr. Sclafani

Postby msfitz » Sat Apr 24, 2010 10:46 am

Do you know when you might be permitted to perform testing and treatment again? I live in the MW and nobody seems interested in CCSVI, I've written teaching hospitals, universities even a VS/IR clinic (VIRChicaco) all in or near Chicago also St. Louis University. The clinic did say they were going to start a study, but I can't wait. I already use a walker and will be going to assisted living in July. I was just divorced Dec. '09 and I know I'll never be 100% but even the smallest improvement is stilll an inprovement and a big one is you've lived with MS for fifteen years! My biggest problem is that I can barely use my right leg, and I have terrible drop foot, I hear drop foot is one of the symptons people are showing improvement with after being liberated, and I just want a chance to get even a little better and if not, we'll know CCSVI wasn't my problem!

Please inform us when you can do the procedure again, thank you.

Bridget Wehmeyer
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Postby drsclafani » Sat Apr 24, 2010 12:12 pm

drsclafani wrote:

A great start....kudos to dr sinan and his colleagues!

I wrote:

Dear Dr. Sinan

I wanted to congratulate you on the initial results you have shown.
I admired your protocols and your planning and look forward to further reports.

i have been performing liberation since December 2009 on clinical indications but recently stopped while my IRB protocol was under analysis and consideration.

I look forward to re-starting my treatments.

If you don't mind, I would like to share experiences with you as we are all relative newcomers to this exciting field.

again, best wishes and hope to meet you soon at meetings.

Please consider the environment before printing this e-mail
Salvatore J.A. Sclafani, M.D.


he responded
---------------------------------------------
Dear Sclafani,
Its a honor to receive an email from you. Every body knows about your work and great experience.
I am very grateful for your help.
I appreciate if can have a look at our protocol and make any suggestions. www.ccsvikuwait.com

Can please help me by sending me as much information about you treatment technique ( Balloon sizes and types, wires, do you use cutting balloons ? do you start with valve or distal. Azygos approach)
If you don't mind, we would like to invite you to Kuwait to avail of your expertise.
Best regards,
Tariq
------------------------------------------------------------------------
Larmo was right. you are an army. thanks for giving me a headsup on tariq's weblink

you will soon all have a representative in kuwait when I visit! I am sure I will learn more than i can teach.


sorry i havent answered questions. I am fixing my proposal as suggested by the IRB....things are moving
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dr Sclafani

Postby aliyalex » Sat Apr 24, 2010 12:28 pm

Thank you doc for reminding me that this is a global effort with global ramifications. this knowing gives this formerly type A personality more endurance to sit longer in my wheelchair with patience, trust, and AWE. Aliyah
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Postby SofiaK » Sat Apr 24, 2010 12:53 pm

Dear Dr. Sclafani:
Thank you for your inormative posts. I have MS. I know I have vein constriction from my Doppler results. How can I be treated by you?
Many thanks,
Sofia
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Postby drsclafani » Sat Apr 24, 2010 1:01 pm

SofiaK wrote:Dear Dr. Sclafani:
Thank you for your inormative posts. I have MS. I know I have vein constriction from my Doppler results. How can I be treated by you?
Many thanks,
Sofia


dear sofia
i am currently undergoing IRB review of a 200 patient safety trial in preparation for a larger randomized trial. The purpose of these research efforts is to give neurologists the evidence they want to refer patients for the liberation procedure and for insurers to be required to provide payments for these procedures.

You can email Holly Barr at CCSVILIBERATION@GMAIL.COM and she will send some information, a questionaire and put you on our waiting list. Please wait two weeks send in the request. By then she be back at work from her much needed vacation.

I am hopeful that I will be resuming procedures in June sometime. The hell with vacation!

hang in there
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Re: Dr. Sclafani

Postby drsclafani » Sat Apr 24, 2010 1:05 pm

msfitz wrote:Do you know when you might be permitted to perform testing and treatment again? I live in the MW and nobody seems interested in CCSVI, I've written teaching hospitals, universities even a VS/IR clinic (VIRChicaco) all in or near Chicago also St. Louis University. The clinic did say they were going to start a study, but I can't wait. I already use a walker and will be going to assisted living in July. I was just divorced Dec. '09 and I know I'll never be 100% but even the smallest improvement is stilll an inprovement and a big one is you've lived with MS for fifteen years! My biggest problem is that I can barely use my right leg, and I have terrible drop foot, I hear drop foot is one of the symptons people are showing improvement with after being liberated, and I just want a chance to get even a little better and if not, we'll know CCSVI wasn't my problem!

Please inform us when you can do the procedure again, thank you.

Bridget Wehmeyer


bridget
follow my message below to sofia. Get on the waiting list. maybe more than one. Time will go by and you will be treated. Do not wait to get on a list,

when the logjam breaks you want to be in the boat
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Postby SofiaK » Sat Apr 24, 2010 1:10 pm

Thank you very much. I'll do as you advise and write to to your assistant.
Best,
Sofia
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Postby SofiaK » Sat Apr 24, 2010 2:34 pm

If veins stenose after 8 or 9 months of angioplasty, does a patient go back to his/her original MS state when diagnosis was made?
I'm confused about that.
:?: :?: :?:

Thank ypu.
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Postby JOhnnybaby248 » Sat Apr 24, 2010 3:31 pm

Hey Dr. S as you have said the IRB has temporary shut you down So the question I have is

WHY have they ?

How many have you Liberated ?

Do you feel the Neurologist are at a point where they feel threatened by the fact that IR are taking there patients from them helping them ?

One other thing is this dr. Omar Khan, M.D. out of Wayne state university OMG for a Neurologist How can he possibly come out and say this

<shortened url>

Also can you Imagine Dr. Mark Haacke running into this guy in the hall ways of Wayne State University Lol

Dr. S keep up the good work Remember you are the Light in A deep dark tunnel we have all been following to reach the exit Please dont let anyone put your light out. :lol: :lol: :lol: :lol:
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Postby QueenMum » Sat Apr 24, 2010 6:54 pm

Hey JOhnnybaby248!

Welcome!

I just had to tell you that I had a much needed laugh when I saw you avatar
today. Wow, I can't even begin to tell you how many times I've felt like that! Thanks!

Mum :wink:
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Postby jr5646 » Sat Apr 24, 2010 7:11 pm

Johnnyb.. 1) Your avatar is disturbing LOL 2) IRB as pertaining to Dr. S has been previously discussed on this thread.. 3) Dr. Khan's article is chocked full of inaccuracies.. if not downright "BS" - not even worth reading 4) Can you imagine all Neurologists treating MS being this misinformed?? I'm frightened now to realize I've left my life in the hands of Neuros for the past 9 years... on the other hand, it is plausable he is INTENTIONALLY spewing fear - but for what reason(s)??? 5) I believe Dr. S has previously posted the number of procedures he has performed. 6) Unfortunately, we're probably still going to need Neurologists even after ccsvi treatment.. lets hope that the newly dx would benefit the most and completely halt progression altogether and therefore not need a neuro. ever again - This scenario would explain a neuro's fear that his cash cow may go out to pasture.

Please just read this whole thread. Very enlightening..

Dr. S - you may just need a vacation afterall ... yeoman's work is very tiring and the pay sucks...

I just can't thank you enough for your expertise, effort and compassion.

Looking forward to meeting you in June, July, August or whenever ...(fingers crossed).

Hey, maybe a (working) vacation to Kuwait??? The sharing of information is phenomenal!!
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Postby drsclafani » Sun Apr 25, 2010 4:35 am

monik_77 wrote:Dear Doctor,

How to read the results of a spectrum graphic done by eco-doppler, with the end of to determine the presence or not of reflux??? How are and change the spectral lines (always up or up/down)??


Thank you,

M.


I find this difficult to teach. the Echo-doppler exam, also known as a color flow doppler ultrasound exam, is composed of two parts: an anatomical part that shows the outline of the vein and a color flow physiological component that measures flow, velocity and direction.
The exam studies direction of flow toward or away from the transducer. It assigns a color to flow in one direction and a color in the opposite direction. Generally convention is that flow toward the heart is blue, and flow away from the heart is red. So arteries are displayed as red, and veins are displayed as blue.
if the flow backs up, the color changes to the opposite one or there is mixture of blue and red flow. This is insufficiency. There is normally a slight back wash but it is very minor and lasts for a very short time. Abnormal reversal was defined by Zamboni in his articles as 0.5-0.8 seconds of reversal of flow.
There is also a spectral analysis which charts the direction of flow and the velocity. The upstroke shows the maximum velocity and the direction is shown as being in one direction (above the 0 line) or the other direction (below the zero line). When the velocity is seen below the zero line for too long, this is considered reflux.

i hope that helps
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