This Is MS Multiple Sclerosis Community: Knowledge & Support

Thanks Dr S,
reminds me of watching teenagers looking in the fridge when their hungry, fridge is often full, they don't see food though?
Regards
Nigel

An update from;https://www.facebook.com/paul.thibault.37
"Paul Thibault. No we don't use Zamboni's protocol. Our understanding of CCSVI is that it is an obstructive venous disease and Zamboni's protocol is best to assess reflux rather than obstruction. Our own protocol allows for objective measurements of the degree of obstruction and is therefore more useful in initial assessment and monitoring progress of patients.
And
Paul Thibault. I don't think the vascular surgeon that does the venography and venoplasties in our team has access to intravascular ultrasound."

Thanks Dr S for your comment before.
My new thought on this is that every angle has to be tested to a conclusion, and then the total picture will have more colour.
Regards,
Nigel

Edit, haha, I see why now, present arrived in my inbox
http://www.facebook.com/l.php?u=http%3A ... 3QYnf0VLsj

perhaps there is something to discuss here?
http://www.ncbi.nlm.nih.gov/pubmed/22640502

the limitations of venography

(edited)

deleted

This is an unauthorized draft of a paper I wrote that is in print. There are at least typographical errors in this document. Also it is a word document and I cannot verify that nothing has been edited without my authorization.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

unauthorized? should I delete my comments? I found this posted on the CCSVI page on Facebook. Is the paper itself in print somewhere?
I am only halfway through reading but have not noticed any typographical errors. It's really good.

it's great and accurate
extremely important to all the doctors involved in ccsvi treatment

A part of it is already translated in the greek ccsvitalk forum

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getafix

The Greeks are fast!
I find this convincing.
This too. As a patient, you want to be treated where this is a stenosis, and you also want to not be treated where there is not a stenosis.

editing makes it cryptic ...

The finalized paper was part of the Siskin journal

the reference is



Sclafani SJA: Intravascular Ultrasound in the Diagnosis and Treatment of Chronic Cerebrospinal Venous Insufficiency. Techniques in Vascular & Interventional Radiology 15: 131-143, 2012.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Apologies to dr Sclafani:
http://www.facebook.com/permalink.php?s ... 0796282297

I also have read the document, is anyone still debating the usage of ivus??

Fantastic! Proof is in the pudding as some of my issues in my case weren't seen until Dr S fired up the IVUS action.

Great read.

tilt

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...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Dear Dr Sclafani

I was diagnosed with PPMS 10 years ago. A few months thereafter, I developed a TOS problem, leading to surgery to remove the first rib. The op was unsuccessful. Since then, my right hand is discolored, my middle, fourth and fifth fingers are crippled and my right shoulder is frozen. I get around with a walker as I have severe gait/walking difficulties.

I came across a fascinating article dealing with the interrelationship between CCSVI, TOS and MS on the Internet. It is entitled “The Thoracic Outlet Syndrome and its apparent relation to Multiple Sclerosis” written by 2 Vascular Surgeons from Chile, Drs Silva and Selmonosky.
The authors found that all MS patients presented a complicated TOS because they all had jugular retrograde blood flow inversion. They stressed that jugular vein blocks occur precisely at the level of the thoracic outlet.

What is your experience in this regard?

It's my understanding that the majority of CCSVI IRs do not use IVUS. Can't say I understand it.

I am no expert in this regard. HOwever, i was asked to discuss the unusual causes of CCSVI at last year's ISNVD meeting. Of them all, i think that the Nutcracker syndrome is the most prevalent and the most serious unusual cause of CCSVI.

There are three thoracic outlet syndromes. The thoracic outlet syndrome is a constellation of symptoms that is caused by obstruction of the neurovascular bundle (artery, vein and nerves) exiting the thoracic cage. The overwhelming number of these cases are the result of compression of the nerves as they exit the chest. Thus peripheral nerve problems, not demyelinating damage of the white matter, are the result. Venous problems are reported to occur in 2-8% of the cases with the unusual arterial compression taking up the few remaining cases.

When the venous compression is present, the disease is called paget schroetter disease is present.
This is manifest as narrowing and fixation of the vein by scar, scalene muscle enlargment, cervical ribs or axillary bands.
Repetitive compressive motions leads to endothelial stress, intimal hyperplasia, inflammation, webs, perivenous fibrosis, stasis and thrombosis of the vein, usually the subcvlaviian or axillary vein

In the acute phase, thrombosis leads to arm, forearm, hand swelling, with cyanosis, pain and numbness and tingling. Symptoms of CCSVI are rare and not yet reported in peer reviewed literature.although migraines are occasionally present and dilation of the deep cerebral veins have been reported.

It is true that TOS can involve the area of the inferior jugular bulb, but this is uncommon. When it does, it may augment cerebrospinal venous channels via external jugular collateral collaterals. Thrombosis generally requires more than anticoagulation, usually local thrombolysis to get the vein open and then surgical resection of the first rib, division of the scalene muscle and other maneuvers are usually necessary. Vein bypass is done surgically with angioplasty reserved for stenoses seen after surgery.

I am in agreement with the International College of Phlebology: CCSVI in MS appears to be most commonly associated with trunucular congenital malformations of these veins.

.

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Is the first rib usually blocking the outlet area in these cases? Do we count ribs from the top or bottom?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience