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

Publié le par Handi@dy

ccsvi I loveBarre google de traduction indispensable!



3 mois plus tard!
Cecil avant la procédure, il va bientôt être angioplastié! Tous ses amis et des inconnus se sont cotisés pour luii!
*Echos de murs à lire attentivement, il y a du contre aussi, je vous ai toujours donné le pour et le contre, car MOI je ne censure pas l'info pour les SEPiens, contrairement à d'autres!
*Ken Torbert  The ISNVD and CCSVI seminar--reflections by Dr. David HubbardSome reflections on the recent formation of the International Society for Neurovascular Disease and the CCSVI Seminar at SUNY Downstate by Dr. David Hubbard-- thanks to the Hubbards for sharing these thoughts...By: CCSVI in Multiple Sclerosis
The ISNVD and CCSVI seminar--reflections by Dr. David Hubbard
Ken Torbert  Amy Gaylord-Preston Shelley Black is one of 4 CCSVI advocates participating in the first CCSVI Working Group meeting hosted by the MS Society in Toronto on September 20th. The working group will be comprised of 4 CCSVI advocates, 4 medical professionals and 4 MS Society board members. See More below:
Ken Torbert
Amy Gaylord-Preston The NMSS will not reveal the information of any of the other participants to Shelley at this time. It appears to me that the four CCSVI advocates are working blind against a group of 8 who have likely had pre meetings to... slam dunk this whole endeavour.
(From Judy Filipkowski)
Amy Gaylord-Preston
The NMSS will not reveal the information of any of the other participants to Shelley at this time. It appears to me that the four CCSVI advocates are working blind against a group of 8 who have likely had pre meetings to slam dunk this whol...e endeavour.
This comment and the one above originated with Judy Filipkowski.
Ken Torbert Judy Filipkowski Shelley is requesting that anyone who has had the angioplasty treatment for CCSVI send her a treatment testimonial so that she may bring as big a stack as possible with her to present to the working group. Shelley’s email address is shelley@zingsphere.com. Despite how you may feel about the MS Society, the advocates going there will be doing everything in their power to fight for your rights!
Michelle Walsh  Got my PowerPoint presentation completed too Val & I are ready to rock it tomorrow. But I am very sad today I just got word that a lady in SK who just got word to go to Phoenix for her angioplasty this week died early this am at 2:05am. RIP Beverli Sylvestre xoxo I am very,very sad your poor body gave out on you sweetheart.
Michelle Walsh  YEs Laurie that is fine :-) Yes another one and unfortuantely more will happen because this is improper blood flow they have in their bodies how can they go on with no blood flowing? just wrong and criminal. The family asked me where should they send donations to cause they do not want to give it to MSS and I said then help us win this fight in memory of Beverli www.angioplastyforall.com
Rob Darwin  im leaving in 7 days for my liberation treatment ! cant wait to post and share with you my results here on facebook ,i have all positive thoughts,thank you for sharing yours with me!
CCSVI at UBC MS Clinic - Information and Support  I just saw that Franz Schelling is the society Secretary for the new International Society of Neurovascular Disease. What a delightful surprise! Here's the list of officers:
CCSVI at UBC MS Clinic - Information and Support  Listen to this half hour CBC audio clip on CCSVI that aired today and will air again Sept 13 (noon; non in Newfoundland and Labrador). Why weren't the CCSVI experts called on to be interviewed?:
CBC.ca | White Coat, Black Art | WCBA Season Debut
Judy Capstick-Keagan  ‎1 week left before the auction ends. Check out the items up for bid, you may see something you like & remember, all money raised will be going to a great cause...getting my husband well again. He's going overseas to have angioplasty on his jugular veins and hopefully this will enable him to walk again and get his life ...back. Thanks so much to those of you who have already been bidding on the items, god bless you! ♥
A LIRE!!! CCSVI at UBC MS Clinic - Information and Support  My doctor who performed my original angioplasty wrote me this today: "The risk of intervening in a location that's already been treated is very high in terms of permanent vein damage/occlusion." To me, this means repeat angioplasties in the same location carry increased risks if we re-stenose. This was news to me -- I ...hadn't heard of this concern being expressed by doctors doing these treatments before. Anyone else?
CCSVI at UBC MS Clinic - Information and Support  Has anyone heard whether the Seattle clinic requires a neurologist referral and, if so, what options are open to someone whose neuro says no? ~Sandra
vendredi, à 01:53 · Commenter · J’aimeJe n’aime plus · Afficher le feedback (30)Masquer le feedback (30) · Partager
Sarah Rainbolt  News to me as well. I know people who have had more than one and one in particular whose doctor told them they could do it over and over so very interesting indeed. Maybe it's something that's been passed around by docs who have performed it a lot already?... I guess these are the things studies will show us in the meantime wouldn't this mean they could still stent?
Steve Morgan At the AGM of the MS society, the vascular guy Mccan (or however it is spelled) talked about this.
Jay Boulet I wonder if the same goes for cardiac stents. Would be worth investigating. Interesting. NEver heard of that i the cardiac world of things.
Darrell Watchorn  if this is true which does make sence in that having to repeatedly expand the veins by anioplasty could weaken them, then hopefully stents will be improved on which I'm sure they will be because of demand. but I for one would like to hear this information coming from other sources than whom ever it is that the NMSS is requesting it from
Claudette Friesen  your right Steve - Dr. Macan (not sure of the spelling either) did mention it. one of the reasons I'm on the fence about this procedure
Tim Wooldridge  I have heard that they are devolping the proper stents for these viens although there is nothing wrong with the ones they are using.
Kathleen Lynch  I just observed Dr. Tariq perform 15 angioplasties,three of which were retreats from other doctors. One patient was undergoing his third treatment. All three retreatments were successful.
Darrell Watchorn  after reading what Kathleen just stated then one should be sure to check the credentials of whom is placing these stents in us
Jen Hoodspith  Yes I red a couple of places, and unfortunately cannot recall where that repeatedly doing it to veins can damage them...I am sure he is speaking with integrity.
CCSVI at UBC MS Clinic - Information and Support My treatment was at Albany -- they are very experienced. I am just putting this out there to let you know it's not a slam dunk that we can go back again and again without consequences. If the vein occludes as a result of a subsequent treatment, I would think they could stent it. But it does cause me to pause before automatically assuming I can go for repeated angioplasties if need be.
Dawna Austin This is not encouraging to me ..
Dawna Austin This is not encouraging to me ..
Christian Hag  Well the doctor at Ameds told me he could do repeating angioplastic many times. This is done in arteries already.
Christian Hag  Well the doctor at Ameds told me he could do repeating angioplastic many times. This is done in arteries already.
Mike Deegan yes i had been aware of this. im sure ive covered it somewhere. everytime you go into the vein you put strain on it
Diana Gordon The location where they put the stents (above or on a valve), as well as the size (2mm larger in diameter than the vein) ensures the least likelihood of stent migration. I have a 6cm (in length) stent in my azygos vein and know that because of the shape of that vein, that there is 0% risk of migrating. It's like a cage on the inside of the vein to ensure the vein stays open, and further intervention won't be required.
Abigail Canter
Not that I'm an expert in any way....but being an RN, I can tell you that the physiological makeup up veins is different than that of arteries. Veins are more pliable...and even when putting in an IV you have the possibility of 'blowing' t...he vein. Arteries can be opened more than veins. BUT the 'fix' for a blown vein the size of the jugulars is a stent...there are MANY procedures with and without stents that are done on veins that have nothing to do with MS/CCSVI...so if you get an IR that has venous experience, it shouldn't be an issue for them...they are doing the same treatment, just for a different diagnosis. Just do your reasearch!
Denise Manley  Dr. Tariq doesn't use stents, Kathleen stated repeat angio plasties. Dr. Siskin also does repeat angios as well. Diana is correct about the stents too. Why do people still believe that stents haven't been made for veins? That is just not true.
Tara Wilkinson My friend who has had two angioplasties done on her veins already has had mixed results. She seems to have blood clots, but was treated with clexane successfully the first time. The second time, we're still waiting to see. The results with her may still be mixed for the good doctor was unable to touch most of her azygos--way too narrow.
Kathleen Lynch
Dr. Tariq DOES use stents, but only on rare occasions. He has an aggressive ballooning technique with a low re-stenosis rate (20%). The stents made for veins on today's market are for chronic dialysis patients and not really directly transf...erable to the needs of ccsvi patients. However, that will change soon. Following is Dr. T's position on stents:

"Although we typically don't initially use stents, we do have them available for each patient. If we have any doubt about the result of the angioplasty, we will use a stent at that setting. Also, we will use a stent if any complication develops while we are performing the procedure.

There are three main reasons we use stents sparingly. First, the stents available now on the market are designed for arteries, not veins; secondly, our foremost concern is patient safety and there is a risk of migration; and third, there is a lack of large, precise, self-expanding stents available. For those reasons, we do not often use stents."

Love that this dialogue is out there. Just for the record, I am neither in favor of stents, nor opposed to them. I believe the decision to stent depends on the doctor, the patient and the clinical situation.
>Tara: My love to both you and your friend.
Catharina Kokke Cyr Well if I restnosed I will go see a experienced Doc to put the stent in.Thats what I had in mind in the first place.
Kathleen Lynch  IMHO, not enough patients have been studied - with and without stents - and not enough time has elapsed to draw definitive conclusions. I reserve judgement at this time. However, I am glad that we have a diversity of experiences among us "pioneers" (are we still in the pioneer stage?) to inform our pre-angioplastered (my irreverence is rearing its smart-ass head again) brothers and sisters so that they have information with which to make their own decisions.
Stacy Lee Saman  Good to know...as a pre-angio girl...I will ask my doc...
Carla Ubell Or Adamarczuk
I agree with Abigail, & I am a nurse also. Artery walls are thicker & stronger than vein walls, because the volume of blood in arteries is more, & the blood runs faster in arteries. That being said, you would wonder why the fear of stent m...igration is greater in veins. I like to compare it to sailing with no wind. You would just float aimlessly with no direction. I have no fear of getting venous stents, as I also have no fear of flying! There are risks in everything you do in life. If a person needs to get venous stents, don't worry about what MAY happen.
Cecilia Neville Murray
We were told by Dr. Mandato in Albany that one can only get into the veins 2, maximum 3 times before there is a risk of clotting. Because the body sees stents as a foreign body, it tries to get rid of it and sends out white blood cells, etc.... They only like to do stenting if they see a major improvement that then drops off dramatically.
We got the angio in the hope that it would slow down the progression and buy time for the researchers to develop venal stents- ones that work well in veins. Then, if he clogs up again, we could go back and get a more permanent fix.
Hope this helps. - Cecilia
Brenda Raven
I understood 2 or 3 times myself, not just once.... but I have a stent and even when stented areas stenosed, Dr. Simka had said they can be re angio'd with quite a good success rate.
there is an FDA approved venous stent, I wonder why they...'re not making use of them. In Poland they use modified arterial stents.Afficher la suite
vendredi, à 18:38 · J’aimeJe n’aime plus ·
Wendy Schmidt  http://passportmedical.com/2010/06/ccsvi-june-6-2010-update/
Ginger MacQueen  OMG! YES!!!! Angio and re-angio can cause thrombosis and even rupture of the vein walls! This is why I am such an advocate of stents.
Nadine LeGier  Wow. I wish I had gotten stents now!
Brenda Raven it's why I went for the stent when angio didn't work on the table, first I didn't go all the way to Poland not to be fixed, second I knew that reangioing stented areas has been successful if need be, and if all else fails, they can do a vein graft where I had mine. It is different depending on which vein and where you are talking about though, the azygos is a lot more complicated and intricate.
Addie Hollingsworth I seem to remember Dr.Z saying the aygos vein didnt need to ever be stented-it's so confusing :(
Janet Harrison  i had been told this by my neuro, he said it was dangerous to redo it, but if its already being done im still all for it, if and when i ever make it
Colleen O'Shea  And every time you don't go into a blocked vein you end up getting worse.
Kathleen Lynch  One more bit of information: stents can and do break. One of the angioplasties I observed was a retreatment that involved a fractured stent of the jugular.

Christopher Alkenbrack  I`ve had MS since before my kids were born. When my daughter was in Kindergarten, she used to take days off school to visit me in the hospital. Throughout the years, I`ve always said that she was my "little nurse" helping me along. Now that I have improved quality of life she says, "Now I can just be your little girl !..." Thanks, Leah....you`re an angel to dad ! (P.S. I still need your help sometimes !)

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