IVCC/CCSVI, vidéos et échos de murs de ce lundi.

Publié le par Handi@dy

ccsvi-quote2.jpgBarre google de traduction très utile pour la fin!

Moins de posts, dimanche oblige. Pourtant, après ma sortie d'hier, j'ai remonté le fil de l'accueil à 8h du matin pour ne rien rater! Dimanche...

D'abord une vidéo de citations positives qui a circulé hier et que j'ai aimé: pleine de sagesse!


Encore une vidéo éloquente sur les labos pharmaceutiques et leur malhonnêteté.
Tessa, je remets sa vidéo post OP et une plus récente postée hier.
Elle parle de la nécessité de repos après l'OP car comme l'amélioration des capacités donne envie de faire des milliers de choses, on est claqué. Excellent sommeil, possibilité de refaire le ménage à fond, plus de spasticité. Son EDSS est bcp mieux, revenu 2 ans en arrière!
Libération d'Amélie, une amie aussi, la vidéo explique et montre très bien comment les blocages des veines provoquaient sa SEP!
Bonjour tous!!

Me voici revenue d'Albany!!

J'ÉTAIS BOUCHÉE!! Il y avait 3 veines ou je pouvais être bouchée et elles étaient bouchée les 3!!

Donc voilà, l'expérience là-bas a vraiment été forte en émotions mais absolument tout le monde était génial, du Docteur aux infirmières...

C'était une journée ou il y avait 5 canadiens!! J'en connaissais 3. De plus il y avait un médecin canadien qui 'observait' les procédures et qui nous a confirmé qu'effectivement c'était bien qu'on soit là parce que ce sera long avant d avoir ça au Canada...

Le Docteur Siskin était absolument génial et tellement dévoué, passionné. Il a dit combien c'était gratifiant voir autant de gens qui retrouve l'espoir d'une nouvelle vie de changement suite a l'angioplastie.

Je n'ai pas de stent mais ma jugulaire gauches était presque totalement bloquée, avec du reflux sanguin, ensuite mon azygos (environ entre les omoplates) était pas mal bouchée également, et ma jugulaire droite était bouchée également. Donc j'ai ''mal'' à mon coup, mais sans plus. (Ça fait mal quand j'avale et c'est tout!!)

Mes améliorations jusqu'à maintenant sont : que je n'ai plus l'air d'un vampire, j'ai enfin un teint rosé!! J'ai de l'endurance pas mal plus qu'avant, à être debout par exemple!
Aussi je marche avec plus de stabilité même en terrain vague, sans poteau près.

Donc c'est ça mais bon on s'entend que ça fait à peine 48h...

J'ai un film que je suis en train de convertir de ma jugulaire gauche.


Pre/Post Angioplasty

*Echos de murs, à lire absolument, il est question de la douleur dans les stents, mais aussi de l'absurdité de ne pas pratiquer l'angioplastie, courante pour les non SEPiens. on a là la preuve que les labos s'interposent!

* Carol Prest  If you have an opinion on how the MS Society is advocating on your behalf for CCSVI testing and treatment, go to their Facebook pages and let them know how you feel...MS Society of Canada FB and MS Society of Canada, Alberta Chapter FB
 Carol Prest  Important read how the Yves Savoie (MS Society) and Neurologists (Freedman and O'Connor) jointly support/advocate for Tysabri to get approved by Provincial health care in spite of the known risks.


* CCSVI Calgary  We're up to 900 Facebook fans! Yee-haw!

* Trish Jensen  If I hear the words 'placebo effect' one more time, I will go stark raving mental!
Laddie, daddie, and everybody that has the treatment, can't ALL be experiencing 'placebo effect'; the treatment may just very well be the remedy to it all. I'm just sayn;.

*Steve Morgan I'd like to know why the CCSVI placebo effect works so much better than all the others.

*Trish Jensen Oh, please...If the treatment had the backing of a drug company...They would be jamming down our throats! The fact that we, the MS community now are using our own voices, saying that at the very LEAST, give an option, you know?, now the medical community is on the defensive. No one likes the squeaky wheel, but it always gets the grease in the end.

*Aaron Thompson  Give me a little placebo, this Tysabri ain't doin' sh** for me.

*Anna Delorme
Wow! I just saw this on TIMS: I have steppred down as chief of radiology to dedicate my attention on ccsvi. I will ansswer questions when I return to new york
Dr. Sclafani

* Ken Torbert via Denise Manley : CTV Calgary- Premiers on the fence about controversial MS treatment - CTV Newscalgary.ctv.ca
Matt Brinck I still feel any study is a waste of time. A blockage is a blockage. Not having MS they would fix it. Total discrimination. Where are the lawsuits. Not saying anything new. I just wonder how they can get away with this? Venoplasty is not a untested platform. Its not experimental. Hogwash again and their playing mulehockey!

*Vicki DAnnunzio
I'm going for a scan on Aug. 19th at the Hubbard Institute in San Diego. If they discover blockages I am going to see a vascular surgeon in Seattle. If they will not agree to open up the blocked veins, I'm going to talk to an attorney. If a...nyone else has had this happen, please tell me what you did. It doesn't even seem right that I have to pay the $2,500 for the scan but much less 'right' if the blockage is there and they won't fix it. Has there been any law suits to date? If an outcome is in favor of the patient, maybe the elected officials will think twice about the fence.

* Ken Torbert  Step by Step directions on how to get the liberation treatment done in the USStep #1: Fire your Neurologist! Do NOT allow a Dr. to be in the way of recieving treatment, learn all you can! Step #2: Do what you have to do to get an MRV. You need to be referred by a doctor...By: Denise Manley

*(à propos de la douleur des stents, ce qui m'intéresse, ndlr)

* Anna Sousa  hey sarah...i haven't spopken to you in a while..how are you doing? Ive been really relaxing and healing my body. The stents were awful in the beginning..so painful..but that pain has gone away..but i would love to talk to you again and just wondering how you are doing?

*Jane Vitelli  actually...how r both of u? I had stents and they were painful at first, too. ..I am also healing..physical therapy soon

*Sarah Rainbolt
No stents for me thankfully, mind you I have heard people who get stented seem to have better outcomes! I am fine it's like a rollercoaster for me sometimes I feel so much better and then thing creep back and then it happens all over again.... It was hard to get used to but I think I've got it now.I am so happy to hear you are relaxing and letting your body heal properly :o) I saw the pics of you at the cottage and I'm so jealous! I grew up at a family cottage and now it's been sold so I have to just remember how great it was and we take at least one driv eup to the area each summer. I think we'll rent a spot somewhere next summer.

How are your symptoms?

Anna Sousa
yes...it is so good to get away sarah..away from where we are living..i can breath up there better. Do go if yu have a chance to go..
my symptoms are still there..the numbness is the worst...balance is on and off..i fell down the carpet stai...rs the other day ..just slipped and i got this huge bruise on my right bum cheek..i am bruising so easily now thhat im on a blood thinner .. it was so nice that your replied ..send me your number . Sarah send me your number again..as we talked on FB chat that time and i didn't write it down..i will now put it in my phone. PM me..take care and i'll talk to you soon!

* Yvonne Andersen  Having a relaxing week, with only one mishaps. lol Dogs got out yesterday and ran like the wind to the beach. Riley jumped down over a steep cliff to get to the beach and the pup decided to take the stairs! LOL Of course I can't chase them, good thing Steve's brother was here. Thanks Evan! Closing on the new hou...se is Wed! Final move is next weekend!! YAY!!!!!!!!!

*Tessa Rushton  via CCSVI AUSTRALIA :
Multiple Sclerosis

Tessa Rushton
per Kerri: CCSVI AUSTRALIA This presentation aims at contributing towards resolving some of the most burning issues of multiple sclerosis research. Of central importance is the pathogenic relevance of flow inversions pushing back into parti...cular venous drainages of the brain or spinal canal. The author is wholeheartedly convinced that by demonstrating the impact of these venous flow-inversions and their cerebrospinal fluid displacements, directly in vivo and/or at post mortem, the relevant venous anomalies can better be understood and remedied. Kerri
 Tessa Rushton  Tomorrow... it's the kitchen... hmm this'll challenge my strength! LOL

 Tessa Rushton  So excited to be able to dust all the furniture in one go! Nap time again :)

 Tessa Rushton  Staying hydrated is so important post angioplasty! If I start feeling bad, I drink water - it is amazing how quickly I feel better! the vascular system loves water :)

* Ken Torbert  CCSVI steals the spotlight at meeting of Canadian politicians; Treatment Available in Mexico

Christopher Alkenbrack
I`m not surprised at the reaction of the NS premier, Darrell Dexter. When we had the rally in front of the NS parliament on May 5, a friend of mine cornered him afterwards and he is quoted as saying, "Oh, no. The testing is far too dangerou...s !" Wonder if any of his female relatives have ever had an ultrasound test - as venous doppler is THE SAME THING EXCEPT ON THE NECK !!! This is laughable.....we`ll know which party NOT to vote for in the next election. Guess the province has more money to waste on MS meds than to actually do a simple, non-life threatning procedure.

Ken Torbert ‎" How come insurance covers Viagra and not CCSVI, they are both vascular blood flow problems!" Ken Torbert
Judy Filipkowski  Oh Ken, that gave me my Sunday laugh! Wonder if Darrell Dexter falls into this category!

Patrick Farrell
Wow, "Boner-pills" are covered, but not angioplasty for CCSVI, what a mess! What does that tell you about healthcare in North Amererica?
You can let yourself go and we'll provide you a pill so you can get your rocks off, but if you have a P...ROVEN BLOCKAGE no dice. What a world!
Christopher Alkenbrack Reminded me of what I read about Dr. Gianfranco Campalani, the heart surgeon with MS that had the angioplasty treatment twice. http://for-greet.squarespace.com/journal/tag/gianfranco-camplani He never took MS meds, but he admitted to using viagra. Gotta love the Italians, eh ? Priorities, priorities.

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