CCSVI tracking project-POST PER P.1 FORMAT ONLY
The purpose of this thread is to get an overview of the experiences of patients getting tested for CCSVI and those receiving treatment (ballooning, stents, open neck surgery, or other), be it in Italy, Poland, USA, or elsewhere (we hope to include translations of this introductory post in the near future). Now there has been a "patient log" thread here already, but it ended up loosing structure as newbie's and other's who got exited commented on patients logs. Here we hope to collect as many accounts as possible, neatly organized without interruptions so that newbie's and others can get an overview of diagnoses and of side effects and subjective as well as objective efficacy of the treatment. For quantitative tracking purposes, the FSS, MSIS, and/or EDSS scores, as well as number of relapses (if applicable) will be important. Once tabulated, this will allow us to show a snapshot of group progress.
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, experiences with the treatment and post-treatment medications, and perhaps most importantly, CCSVI/MS symptoms pre and post treatment.
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. Comments outside of personal CCSVI accounts will be erased by the moderator.
[JL edit: please use the post subject field to specify 'positive' 'neutral' 'negative' 'pending' or similar, re response to treatment, so that readers have a quick way to assess individual response. the subject field can also be edited over time as appropriate.]
CCSVI TRACKING [Please use date format MM/DD/YYYY]
Name (if want to give other than TIMS login name):
Date(s) & type of neurological diagnosis (RRMS, SPMS, PPMS, CIS, or other):
Lesion locations (most affected side, if known), number:
MS symptoms before stenosis intervention:
Number of relapses before intervention (if applicable):
EDSS before CCSVI intervention (self-assessed or physician-assessed?):
[To review EDSS rating, click the following link: http://www.mult-sclerosis.org/expandeddisabilitystatusscale.html ]
FSS before CCSVI intervention:
[To calculate FSS rating, click the following link: http://www.mult-sclerosis.org/fatigueseverityscale.html ]
MSIS before CCSVI intervention:
[To calculate MSIS rating , click the following link: http://healingpowernow.com/msis.htm ]
Are you using Inclined Bed Therapy I.B.T? (Y/N)
Have you had testing (and possibly procedure) for blockage yet: (Y/N)
[Some patients may wish to start with a baseline report, if Y, continue with next section]
STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure:
Type of venographic study: (MRV, Doppler)
Type of procedure:
Procedure/drug related symptoms:
[Repeat this section if there have been more than one procedure]
Number of relapses since first CCSVI intervention:
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates):
EDSS as of this update (self-assessed or physician-assessed?)
FSS as of this update:
MSIS as of this update: