CCSVI TESTING / TESTS CCSVI *CANADA*

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

CCSVI TESTING / TESTS CCSVI *CANADA*

Postby SickButHappy » Wed Apr 28, 2010 12:52 am

*VERSION FRANÇAISE DANS MESSAGE SUIVANT*
The purpose of this thread is to get an overview of CANADIAN that got tested for CCSVI. Here we hope to collect as many accounts as possible, neatly organized without interruptions.

So, the idea of this thread is to have one post per patient, each of which will hopefully be updated regularly using the "Edit" feature, basically however often patients like (though probably not too often as this might make the long term development hard to follow). Edits should be to the point and could include past MRI and other test results, original CCSVI testing results, side of major IJV stenosis (if applicable), side of most lesions as well as symptoms.

**This is not a thread compiling treatment** (might be coming)

Finally, if you could post MRV and other images, that would be fantastic to give people a feel for what kinds of malformations we're looking at. I found http://photobucket.com/ a hassle-free site for uploading and hosting images anonymously.

For the sake of keeping the thread neatly organized, we ask others to refrain from posting comments on patients logs. [u][u]Comments outside of personal CCSVI accounts will be erased by the moderator.[/u][/u]

*the moderator does this to help Canadians with MS to get information, but this doesn't represent any form of statistical analysis, the moderator cannot verify the information submitted and finally, this IS NOT a governmental site or from for the MS Association* THIS IS PURELY INFORMATIVE.

================================================

CCSVI TRACKING [Please use date format DD/MM/YYYY]

MS HISTORY
Name (if want, use your nickname on this site):
City/Province:
Male/Female (M/F) :
Age:
Number of years with MS:
Form of MS:
MS symptoms:
EDSS (To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ) :
FSS (To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ) :
Are you using Inclined Bed Therapy I.B.T? (Y/N) :
Tests done for diagnosis:
Name of the machinery used (if known) :
Protocols followed (Simka's, Haake's, if known) :
Have the tests been done in Canada? (Y/N) :
Where? :
As a clinical trial? (Y/N)
(if yes, where?:)
Practician that referred you for the test (neurologist, GP....) :
Cost for the test (s):
Was (where) the test(s) showing CCSVI? (Y/N) :

Date and type of lesions:
Lesions location (if known) and number:
Will you (or did you) get "liberated" in Canada? (Y/N):
If so, by which type of pratician (Interventionist radiologist, vascular surgeon...):
Do you think going outside the country for a treatment? (Y/N):
Where?:
If the treatment was avaible in Canada within a year, would that change your answer? (Y/N):
Last edited by SickButHappy on Fri Apr 30, 2010 10:46 am, edited 21 times in total.
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VERSION FRANÇAISE

Postby SickButHappy » Wed Apr 28, 2010 1:12 am

Donc, l'idée de cette compilation est d'avoir un message/patient CANADIENS, que vous pourrez mettre à jour si nécessaire en utilisant le bouton "edit". Les mises à jour doivent être courtes svp, pour garder le tout facile à lire.

**Ceci n'est pas un lien compilant les traitements** (un suivra sûrement)

Finalement, si vous voulez mettre vos images MRV ou autres, ceci pourrait être fantastique, rendant le tout plus tangible. Le site [url]http://photobucket.com/[/url] semble facile d'utilisation et permet de mettre des images de façon anonyme.

Pour le bien de la compilation, nous vous demandons de ne pas commenter sur les messages des patients. [u]Les commentaires sur les messages seront effacés par le modérateur.[/u]

*le modérateur fait ceci pour aider les Canadiens ayant la SP à obtenir de l'information, mais ceci ne représente pas un exercice statistique, le modérateur ne peut pas contre-vérifier l'information et enfin, il ne s'agit PAS d'un site gouvernemental ou de l'Association de la SP* CECI EST PUREMENT INFORMATIF.

SUIVIS CCSVI (svp utiliser le format JJ/MM/AAAA)

HISTORIQUE SP
Nom (si vous voulez, utilisez votre nickname dans le cadre de ce site):
Ville/Province:
Homme/Femme:
Age:
Nombre d'années avec la SP:
Forme de SP:
Symptômes SP:
EDSS (pour revoir échelle, allez à: [url]http://mult-sclerosis.org/expandeddisabilitystatusscale.html[/url] ) :
FSS: (pour calcul, voir: http://www.mult-sclerosis.org/fatigueseverityscale.html ) :
Utilisez-vous la Thérapie du Lit Incliné? (O/N) :
Test(s) fait(s) pour diagnostic? :
Nom des machines utilisées (si connu) :
Protocoles suivis (Simka's, Haake's,...; si connu) :
Lieu:
Dans le cadre d'une étude clinique (O/N?):
(où?) :
Qui vous a prescrit le test (neurologue / généraliste /...) :
Coût du test:
Avez-vous testé positif pour le CCSVI? (O/N) :

Date et type(s) de lésion(s) constatée(s):
Localisation des lésions si connue et nombre:
Serez-vous (ou avez-vous) été "libéré" au Canada? (O/N):
Si oui, par quel type de médecin (Radiologiste interventionniste, chirurgien vasculaire...):
Avez-vous l'intention d'aller à l'étranger pour un traitement?:
Où?:
Si le traitement était disponible au Canada d'ici 1 an, cela change-t-il votre réponse? (O/N):
Last edited by SickButHappy on Fri Apr 30, 2010 10:47 am, edited 1 time in total.
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Tested

Postby eveable » Fri Apr 30, 2010 8:48 am

CCSVI TRACKING CCSVI TRACKING 30/4/2010

MS HISTORY
Name: eveable
City/Province: Toronto. On
Male/Female F
Age: 58
Number of years with MS: 8
Form of MS: RR
MS symptoms: Weak right foot and right hand
EDSS (To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandedd ... scale.html ) : 2
FSS (To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ) : 1
Are you using Inclined Bed Therapy I.B.T? : N
Tests done for diagnosis: Doppler
Name of the machinery used (if known) :
Protocols followed (Simka's, Haake's, if known) : Zamboni
Have the tests been done in Canada? : Y
Where? : Barrie Vascular Imaging
As a clinical trial? (Y/N) (if yes, where?:) No
Practician that referred you for the test (neurologist, GP....) : GP
Cost for the test (s): OHIP covered
Was (where) the test(s) showing CCSVI? (Y/N) : Y

Date and type of lesions: lesions on MRI, spinal between C1 and C2 and 4 in brain
Lesions location (if known) and number:
Will you (or did you) get "liberated" in Canada? (Y/N): unknown
If so, by which type of pratician (Interventionist radiologist, vascular surgeon...):
Do you think going outside the country for a treatment? (Y/N):
Where?: NY
If the treatment was avaible in Canada within a year, would that change your answer? Y:
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