tag:blogger.com,1999:blog-3605254543761446258.post456211832414371097..comments2011-05-17T22:54:27.360-04:00The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-3605254543761446258.post-86750502765145795222011-05-11T01:05:38.941-04:002011-05-11T01:05:38.941-04:00Hi, they just need a little more time. Your procedures were not covered by insurance, right? Do you recommend going to NIH? I mean what different can they offer me?<br />NicoleNicolehttp://www.mynewnormals.comnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-2871001092242130072011-02-19T07:41:58.184-05:002011-02-19T07:41:58.184-05:00MORE INFO ON THE ITALIAN SURGERY HERE:<br />http://www.thisisms.com/ftopicp-154344.html<br /><br />The story is that a patient in poor condition approached Dr. Spagnolo<br />from Monza, Italy because had already 3 angioplasty with poor success.<br />He convinced the doctor to do a venogram which showed a totally<br />blocked IJV.<br />At that point the doctor told the patient that there was nothing he could do.<br />The patient which was relegated to a wheelchair told the doctor he was<br />considering terminating his life because he could not continue like<br />that.<br />This forced the doctor to attempt a surgical procedure. He took the<br />saffenous vein from the leg and double its size and use that to<br />replace the defective Jugular vein. One week later the patient was<br />able to leave the hospital, this time on his own two feet instead af a<br />wheelchair.Celestehttp://www.blogger.com/profile/03438788567995310630noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-10124381244201671012011-02-19T06:36:11.130-05:002011-02-19T06:36:11.130-05:00FYI<br />A young man of Reggio Calabria (south of Italy), with MS and already paralyzed, re-acquired the use of legs after a surgery which consisted in the reconstruction of one of the jugular veins. The surgery was performed by Dr. Salvatore Spagnolo, Head of the Heart Surgery Department of the Policlinico in Monza (Milan, Italy).<br /><br />video:<br />http://www.youtube.com/watch?v=DulUnx5ZxrA&amp;feature=player_embedded#at=355<br /><br />the Italian Association CCSVI in MS:<br />http://www.ccsvi-sm.org/?q=node/757Celestehttp://www.blogger.com/profile/03438788567995310630noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-63468098489164487512011-01-11T12:09:23.743-05:002011-01-11T12:09:23.743-05:00I am 4 days post procedure. My left jugular was &quot;functionally absent&quot; and collapsed under the angioplasty. My right one opened up like a charm. I now have 3 stents on the left because there was no risk of losing it - my collateral circulation had been doing the job for years. I am sore and have been placed on coumadin. I am amazingly wakeful in the morning and my color perception is back to normal. I will return to Albany in April...the azygous vein has yet to be explored. Luckily I have a cardiologist for my murmur, my physician would not clear me for research surgery and will not follow me on coumadin. Put your plan in place with a protocol before the procedure.Pat Grace-Farfagliahttp://grace-farfaglia.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-42092625909195802922010-11-08T18:18:41.151-05:002010-11-08T18:18:41.151-05:00All the best and Good Luck in your quest and journey, and God Bless.Craighttp://www.securityking.comnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-62903721753143729822010-08-08T02:36:11.984-04:002010-08-08T02:36:11.984-04:00I love your blog. Do you read any French ? We would be very honoured if you visited our forum at http://www.forseps.org This forum was opened on May 1st in reaction to forces struggling to shut our mouth each time we would pronounce the criminal acronym : CCSVI ! I myself was operated in Sofia (azygous and right jugular blocked to 99%) but did not find a real amelioration, I can still walk but my legs are still very sore, and weak, 100 yards is a maximum for me, EDSS 5. However, I&#39;ve the &quot;feeling&quot; that my right hand somehow regained in fitness : no keyboard mistakes anymore, which was unstandable to me since I spend half my life writing. Sometimes we have to be aware of very small changes, this was a big one to me. I must go back to Sofia at Christmas. Wish you all the best, keep your happiness 4 us.MPascalehttp://www.forseps.orgnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-37510767965071577492010-04-01T09:49:57.020-04:002010-04-01T09:49:57.020-04:00Hey Wheelchair Kamikaze,<br /><br />This is such a crazy disease where no two seem to be all that alike. Pretty disappointing to not just be normal, let alone a normal MS victim.<br /><br />I hope that Dr. Sclafani finds a solution for you. I think these guys really are trying.<br /><br />Two other things: what a well-written article - kudos! And you&#39;re famous - within the CCSVI Calgary group I&#39;ve heard your name thrown around a couple of times. Thanks for being one of the couragous ones to give it a go, even if it didn&#39;t mean a &quot;go&quot; for you.<br /><br />Colleen O&#39;SheaColleen O'Sheahttp://for-greet.squarespace.comnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-89130190988397824142010-03-25T19:48:33.286-04:002010-03-25T19:48:33.286-04:00Not exactly sure why my &#39;Penrose Slitherlink&#39; puzzle image is relevant (except that it&#39;s a puzzle, and MS is a puzzle...), but thanks for using it :)<br /><br />- jbumjbumhttp://www.blogger.com/profile/00434015094535442113noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-49151900234824743402010-03-23T14:27:46.134-04:002010-03-23T14:27:46.134-04:00Marc,<br />It is with continued admiration I follow your journey. I think that you will be going the stent route as halting the progression and managing the risk of stent detoriation is a more attractive option then the status quo. Any benefits so far from the proceedure? Ruthie and I continue to pray. Warmest regards, Steven Simonyi-Gindele, simonyigindele@yahoo.comSteven Simonyi-Gindelehttp://www.idsuperstore.comnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-17239690699199049472010-03-23T11:36:55.380-04:002010-03-23T11:36:55.380-04:00Marc: Re: your comment about being a hero. I know that what all you are pursuing is for yourself, but taking the time to share it, and so eloquently is a gift to us all. Researchers research generally for their love of the search, yet we all benefit. So maybe hero isn&#39;t the right word--how about--you are exceptional in that your reach is wide and you have vision--you see beyond yourself. But I know what you mean about the wince factor of being called courageous, a hero, etc--last night a friend texted me that &quot;I was so strong.&quot; Such comments make me fee--well, I feel as if in some ways it is an unconscious demand that I be strong, or at least I feel as if I have to live up to that all the time; I break down all the time--mostly in private--so being called &quot;strong&quot; also makes me feel like a fraud. In my mind I&#39;m very weak--in fact, I feel as if I have no &quot;character.&quot; And I also feel the comment has undertones (overtones) of pity. But then again, I want friends to understand the shit storm this is. Am I being too defensive and critical? I know people don&#39;t know what to say and that is a better remark than some--as in the friend who is no longer the friend whose response to my news of having MS--&quot;Oh, they have so many treatments for that now. You are so lucky.&quot;Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-54191223162453163942010-03-23T09:44:36.854-04:002010-03-23T09:44:36.854-04:00Hello Marc--I have had MS for almost five years and the last year has proven to be the most challenging because the progression parade has begun. I too am pursuing the CCSVI theory with vigor, but was recently dismayed at the results of my testing. I have perfectly normal veins. No stenosis whatsoever. I had the protocol that was developed by Dr. Mark Haacke, a leader in this field, so I feel the testing was completed correctly. I don&#39;t really know what this means at this point in time. It&#39;s just a fact I need to mull over. I am truly hoping the CCSVI is a factor in MS progression, and that my case hasn&#39;t progressed enough (now walking with cane) for CCSVI to be present. Who knows? One thing I do know though, is the best patient advocates are educated patients. Thanks for being one of them. Regards-MimiAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-36218615425003339992010-03-22T21:14:19.123-04:002010-03-22T21:14:19.123-04:00Marc, have you discussed vein grafting with your doctors?CWhttp://www.blogger.com/profile/10649532247008592580noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-47347866877502262002010-03-22T15:59:56.994-04:002010-03-22T15:59:56.994-04:00Charlie-I&#39;ll second that emotion. I&#39;m all for saving asses...<br /><br />pfrox9-I&#39;ll share, I promise. But not too much, because we wouldn&#39;t want to get to &quot;normal&quot;, it is our quirks that make us interesting...<br /><br />costume-I can&#39;t take the credit for bringing CCSVI to Dr. Sclafani&#39;s attention. Another activist patient contacted him and got the ball rolling, and I simply jumped on the wagon pretty early on. I don&#39;t want to blow anybody&#39;s cover, but credit where credit is due...<br /><br />Moose-thanks for having my back. Shoot me an e-mail, if you get the chance, I don&#39;t have your e-mail address. WheelchairKamikaze@Gmail.comThe Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-34572666897980043902010-03-22T15:51:16.934-04:002010-03-22T15:51:16.934-04:00Can&#39;t think of the words. But know I&#39;m still cheering you on, boss.Mooseasaurus Rexnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-69386107808496650432010-03-22T06:22:01.866-04:002010-03-22T06:22:01.866-04:00Marc, i d like to thank you for taking this to Dr Sclafani. Having him abord on TIMS is huge!<br />This wouldn&#39;t happen if it wasn&#39;t for you.<br /><br />Costumenational.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-29414748482910283212010-03-21T10:15:19.943-04:002010-03-21T10:15:19.943-04:00I wish you good luck in your quest for normalcy. and if there is any extra once you find it, please share<br /><br />pfrox9Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-34636437245121030152010-03-21T09:29:19.164-04:002010-03-21T09:29:19.164-04:00Marc, Some of the Best things that you write are found in your comments. Thanks for making me laugh. Together we&#39;ll get through this and maybe somewhere along the way we can all save our own asses.<br />CharlieTunanoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-54647031992975984932010-03-20T22:38:05.693-04:002010-03-20T22:38:05.693-04:00Judy-thanks for the thought, but I really don&#39;t consider myself a hero. A hero is somebody who runs into a burning building to save somebody else. I&#39;m just trying to save my own ass...<br /><br />weeble-dammit, I told you to get that magic wand fixed weeks ago. Oh well, your kind thoughts and well wishes are the next best thing...<br /><br />chelsey-thank you so much for your kind words. The fact that people as sweet as you find me inspirational continues to boggle my mind. In any event, at least it makes my struggle with this disease seem to have some kind of meaning...<br /><br />Ginger-yes, some new stent designs would be most welcome. In the meantime, when navigating through uncharted waters...<br /><br />Shirley-as surprising as it sounds, there hasn&#39;t been much endovascular surgery done on veins thus far. The primary focus has been on arteries, and veins and arteries are extremely different anatomically.<br /><br />Patrice-thanks for the well wishes. Dr. Sclafani is indeed a good man, and he has my confidence. This is new for all involved, and the learning process has really only just begun...<br /><br />Dabble-I keep hoping the atypical nature of my disease might make it more fixable by vascular means also. The NIH seem to think that my problems could be mostly vascular in nature, so who knows. Thanks for your comments, and your support.<br /><br />Anonymous-I have managed to get myself seen by some of the best minds in the business, unfortunately most of them raise more questions than answers. I&#39;m going to keep trying, though...<br /><br />Aarcyn-I do believe that CCSVI will be at least a partial piece of the MS puzzle. Getting the doctors to talk amongst each other is a big challenge, each views things through a different set of blinders. I think one of the biggest problems with Western medicine is that doctors have become so specialized that they look at their patients as a bunch of components, not as a whole being...<br /><br />anonymous-well, it really has yet to be proven just how much stents suck, but I&#39;m not sure I&#39;m willing to let that proof be me.<br /><br />Anonymous-it could very well be that it takes decades for the damage he done due to irregular blood flow through the CNS to become severe enough to make itself known. It could just be a slow wearing away, like a river slowly carving a canyon...The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-18512423588949053992010-03-20T09:20:45.402-04:002010-03-20T09:20:45.402-04:00Marc,<br /><br />You are so articulate, I like to reading your articles. If your veins are that damaged, why do you think it took this long in your life for the disease to surface?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-65722724939529748842010-03-20T06:37:32.503-04:002010-03-20T06:37:32.503-04:00I hear what you are saying man...<br />Stents suck. Hope they come up with something better for you soon enough.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-36734461293090255522010-03-19T20:40:33.982-04:002010-03-19T20:40:33.982-04:00Thanks for the information on stents. CCSVI appears to be a good piece of the MS puzzle. I was really hoping that you would have had some modest positive change. You have gathered a good team of experts who are talking to other experts. You are giving me hope. AarcynAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-1760088654193701322010-03-19T17:48:29.495-04:002010-03-19T17:48:29.495-04:00Marc, you are far from boring, that&#39;s for sure. On the plus side your case has enough interest to grab the attention of some high powered medics. Lets&#39;s hope they come up with some viable options soon.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-56081372138294080332010-03-19T17:00:50.945-04:002010-03-19T17:00:50.945-04:00Good luck, Marc. I don&#39;t know if I&#39;d feel better in your case - knowing there is a problem, wondering about solution. Call me da queen of da Nile...;-)<br />In any case, traditional surgery has been done before and if they can get the clotting thing stabilized, could be a partial answer...other stenosed veins, Shirley, are commonly cut out and replaced with healthier ones...or just reattached.<br />Anyway, cheers and best wishes to you, Marc, and I hope a good solution comes soon. Maybe this is why you have atypical MS - and maybe if they can fix these veins, you will be well....hope so, hope so....Dabble and the Mad Sowhttp://www.blogger.com/profile/15738625142224210785noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-91736661617928489772010-03-19T16:16:08.638-04:002010-03-19T16:16:08.638-04:00Marc:<br /><br />I&#39;m rooting for you to become less unique in your health challenges. Your cognitive abilities seem very sharp at least (mine unfortunately are sloooowing.) It&#39;s good to hear Dr. Sclafani contacted the Italians for a discussion about your case (I have a gut feeling he&#39;ll find a very good solution for you.) Stay strong---you&#39;re not alone even if you&#39;re admittedly unconventional.<br /><br />PatricePatrice Wagnernoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-20288835863138598702010-03-19T14:43:04.635-04:002010-03-19T14:43:04.635-04:00Very well written Marc. I wish for that touch of boredom and being uninterested but, that&#39;s not me (in my mind) physically is a different story! I wonder why a Vascular surgeon would not have all these stent/ballooning and others figured out already. Has no one had a stenosed vein before?Shirley Renshawhttp://www.blogger.com/profile/14582377209411668582noreply@blogger.com