CCSVI: Behandelingen en updates

MS onderzoek&studies
Berichten: 3924
Lid geworden op: 15 apr 2016, 09:42
Locatie: leeftijd = jaar ms

Bericht door Klick »

[QUOTE=neuron;1094847]Ik vind de bijdragen van Marsei hier op het MSweb altijd heel interessant en waardevol!!!!!!


ik ook :cool: laat me hier weinig horen maar lees alles en waardeer al het werk wat er in gaat zitten. Scheelt mij enorm veel uitzoekwerk :ogen:
Miss J
Berichten: 92
Lid geworden op: 17 okt 2017, 12:59

Bericht door Miss J »

Die nep ingrepen hebben ze heus al wel gedaan zonder dat ze t zelf wisten :cool:

Zamboni heeft gewoon erg amateuristich gehandeld met z'n "Oh wow I can feel my legs again" terwijl ie aan t dotteren was, en niet doorhebben dat de patient aan t placebo-en/halucineren was, come on :haha:
Patricia H
Berichten: 515
Lid geworden op: 26 okt 2009, 10:55
Locatie: Venray

Bericht door Patricia H »

[QUOTE=knutselsmurf;1094845]Om de 10 regels met het woord "wetenschap" strooien en dan niet tegen kritische lezers kunnen :-)[/QUOTE]

afkraken kan iedereen..:D
Je kunt er toch gewoon uithalen wat voor jou belangrijk is...

Je bijdragen worden zeker gewaardeerd Marsei, in ieder geval door mij..
Berichten: 3261
Lid geworden op: 22 jan 2010, 22:00

Vera en Matthias

Bericht door Marsei »

Vera en Matthias

[URL=""][U]Vera en Matthias[/U][/URL] (vanaf 49 minuten)
Berichten: 3261
Lid geworden op: 22 jan 2010, 22:00

Steunbetuigingen aan Zamboni

Bericht door Marsei »

Steunbetuigingen aan Zamboni

Steunbetuigingen aan Zamboni

[QUOTE]I have been out of bed over five years now because of it.[/QUOTE]

[QUOTE]Andassero beatamente a quel paese!!!!
Forza Zamboni, io sono "rinato" e mai smetterò di ringraziarti...
(Kom op zamboni, ik ben herboren en ik zal nooit stoppen je te bedanken...)[/QUOTE]

[QUOTE]If i hadn't had this done in 2010 I wouldn't be walking right now. I do use a cane . Thank heavens I had it done in Poland 7 years ago. NO SHAME!!![/QUOTE]

[QUOTE]Had venoplasty 7 years ago and have better balance and less fatigue because of it. [/QUOTE]

[QUOTE]I received my treatment for CCSVI in Albany in July 2010. Had I not been so fortunate with this treatment, I doubt that I could have made it through to today. [/QUOTE]

[QUOTE]I had my procedure done in 1/2011 in Albany. I went from having to take muscle relaxers to bend my legs and becoming totally exhausted after walking 1/4 mile to hiking in the Adirondack high peaks. I wish someone would study those of us who did extremely well after the procedure to try and figure out why.[/QUOTE]
Did I give you info on my daughter? She was treated at 15. Doing great still at 20.[/QUOTE]

[QUOTE]Only had it once and am still doing great almost 7 years later
[QUOTE]The first time it worked wonders for me the second time nothing and now the doctor will not do it for a third time[/QUOTE]

[QUOTE]I had it done nearly 8 years ago now. I knew the moment I had woken up the next day that something had changed for the better. I really feel it was a successful procedure that restored many things I had lost along the ms journey and bought me some time to get my diet and lifestyle into a better place. I'm not perfect, but I'm still able to fight![/QUOTE]

[QUOTE]I know that it worked for me! EDSS 6.5 down to 4! If I hadn't gone for treatment, I would still be at least 6.5, probably higher, since it was almost 7 years ago. Life is so much better![/QUOTE]

[QUOTE]Big improvement for me as well[/QUOTE]

[QUOTE]Yes!! Not perfect, but something much better than drugs!!![/QUOTE]

[QUOTE]Oh, that anatomy class? Yeah, that was only possible AFTER the ccsvi treatment. Before hand, I couldn't have told you the name of the square thing on the wall that has shows and movies on it, let alone stood there in practicals naming fossa's and spelling them right.[/QUOTE]

[QUOTE]i had ccsvi procedure 2x..once in arizona, once in Chicago..., 1st lasted a few mos. but was wonderful, helped lots of stuff.....2nd, not so great, but did have minor relief.....i'm definitely a fan of this.....wher is the problem?? it was never posed as a cure......[/QUOTE]

[QUOTE]I had mine done Feb 2011 - it was like I was a new person- even the colour of my face went from pasty to rosy - I could stay awake - I could think- sad thing is it lasted about 6 months- if only there were a way to keep the veins from restenosis 😥[/QUOTE]

[QUOTE]yes, mine was great for 6 months or so....luckily, some things lasted, like swallowing....bladder never caught on. stability is not well, but still get around.....would love to do again, except to find radiologist is iffy.......[/QUOTE]

[QUOTE]I had the treatment 6 years ago and have improved and would do it all again[/QUOTE]

[QUOTE]For me, it has pretty well eliminated my fatigue . Even if you are in a wheelchair , it’s nice to be alert. Also I know someone who had lesions and after about 2 years after the CCSVI treatment, no lesions![/QUOTE]

[QUOTE]7 years for me too. No more brainfogg, dizyness, et cetera. Cognition back to normal, less tired. Still very happy having be treated on CCSVI[/QUOTE]
This is interesting. My daughter was treated at 15 after dx of RRMS. She had amazing results. No progression since. In fact she improved greatly. Her MRI improved each year. Lesions dissapeared. No new ones. It's been 5 years. My husband was treated 2 years ago after dx of PPMS. He had some improvements. His mobility is still declining. However the benefits he had stuck. I think early treatment is key. I have no regrets. I do it all again for my family. The fundraising and all.[/QUOTE]

[QUOTE]7 years since my treatment at Ameds. It got my brain back after a fashion but everything else faded. I have now been following the Ann Boroch candida protocol for just over 3 years, having also been on the BBD 11 years previously, and now have NO symptoms apart from the lower right leg still needing more exercise after being in a wheelchair for 17 years. For those of you who have re-stenosed try diet which could well get your blood flowing correctly.[/QUOTE]

[QUOTE]I got my life back after having the procedure done twice in 2010. I have a stint in my left jugular and another stint in my azygous. I also take niacin and a blood thinner. When I go without the blood thinner for even a day, I get headaches.[/QUOTE]

[QUOTE]I was treated 7 yrs ago-had great and lasting results. I was not prescribed blood thinners. I have had no disease progression or activity since treatment.[/QUOTE]

[QUOTE]Pilot study patient 007 having my first surgery in Italy changed my ms label immediately. Blood flow matters. Too many positives have changed for me including that edss scale.[/QUOTE]

[QUOTE]I had treatment done Sept 15,2010 in Albany, Dr. Mandato. Still have the benefits. Which is huge for me ... less symptoms to deal with than before treatment. No matter if CCSVI treatment lasted a short period or still stable certainly proves blood flow is a big factor for those with vascular issues not just MS. MS should not be part of this. This is a vascular issue.[/QUOTE]

[QUOTE]My treatment on Mar. 17, 2011 was the best thing that ever happened to me. I went from EDSS 6.5 down to 4, even though I had been secondary/progressive since 1996 and was NEVER supposed to improve. The neurologist who had been seeing me since my diagnosis in 1990 was very pleased to see my improvements and credited them to my venoplasty for CCSVI. No stents, no blood thinners, no big change in diet and all improvements have held. Nothing else helped and I tried many different things![/QUOTE]

[QUOTE]I was treated by Dr. Siskin in July 2011. I'm not perfect - numb hands and feet - but the other symptoms left and never came back. I go to a gym every day and exercise for at least an hour and maintain a healthy diet. If those of us who were treated had been followed and tested regularly we might have more answers now than we have. What I and others experienced and still enjoy is not a placebo and it can't be treated as anecdotal either. The question should be why did some improve and not others? As well, the treatment for CCSVI is not a treatment for MS but, rather, a treatment for a vascular condition.[/QUOTE]

[QUOTE]My son was fortunate that angioplasty opened his veins and they remained open just like 54% of the test subjects in the Zamboni study.[/QUOTE]

[QUOTE]I know I did, but the benefits weren't perfect - - but they did happen.[/QUOTE]

[QUOTE]My first procedure benefits lasted only about 3 months. Repeat procedure included destruction of an offending valve. Six years later ultrasound confirms the blood is still flowing.[/QUOTE]

[QUOTE]Proof is what many of us already know that proper blood flow restored has greatly increased the quality to our lives after venous angioplasty when it comes to our MS symptoms. I don’t need anymore proof to know after 7 years I have still had no progression with my SPMS.[/QUOTE]

[QUOTE]I know it helped me, but I am one that didn't keep the Blood flow. My Left jugular disappeared.[/QUOTE]

[QUOTE]Thank you! 6 plus years I am doing great![/QUOTE]

[QUOTE]I was treated over 8 yrs ago for CCSVI in my SPMS of over 20 yrs and I am still doing remarkably well! Thank you! May you always be blessed![/QUOTE]

[QUOTE]7 years being treated and still doing great!![/QUOTE]

[QUOTE]I’m going on eight years as well! Haven’t used cane or scooter this whole time!Thank you Dr. Zamboni! Your tireless work has set many free, me included. Almost 8 years now since treatment that has given me my life back![/QUOTE]

[QUOTE]Dearest Dr. Zamboni, I️ am eternally grateful. Thank you for all your good works. You are THE BEST!!!![/QUOTE]

[QUOTE]7 years since my treatment still feeling great![/QUOTE]
Chesapeake, VA, USA I had the CCSVI Treatment in 2011 and was diagnosed with MS in 1997, I got relief from heat intolerance in 2011 and more feeling in my feet and still enjoy the benefits of both since then. Please keep up the wonderful work and studies!![/QUOTE]

Thank you Dr Zamboni for everything. I have been enjoying life now[/QUOTE]

[QUOTE]Treated 2009. Never had another flare or need for IV prednisone. I️ am without any MS symptoms 😀🎈🎉[/QUOTE]

[QUOTE]Thank you! 6 plus years I am doing great![/QUOTE]

[QUOTE]Thanks to you, I'm able to be the Dad I want to be!! 6 yrs post angio & going strong![/QUOTE]

[QUOTE]tantissima gente ringrazia il professor Zamboni per essere stata bene dopo la CCSVI, i nomi sono quelli che scrivono, non esiste commento negativo ma solo persone che lo ringraziano Maria Maddalena
(Zoveel mensen bedanken professor zamboni voor het goed zijn na de ccsvi, de namen zijn degenen die schrijven, er is geen negatieve commentaar maar alleen mensen die hem bedanken)
Berichten: 56
Lid geworden op: 16 jan 2015, 08:45
Locatie: Amstelveen

Bericht door Rocco »

Brave dreams mag dan niet de door velen gehoopte en verwachte duidelijkheid hebben gebracht maar een van de onderzoeksresultaten was wel dat van een groot aantal onderzochten waarbij de ingreep heeft geleid tot een goede bloedstroom er geen ontstekingen of laesies bij zijn gekomen na de ingreep. Het onderzoek was gericht op pp en sp ms patienten. Zie verder andere ccsvi topic.

Ben zelf ppms en ben 5 jaar geleden geopereerd aan de vaten, omdat jugular te ernstig misvormd waren om met een dotter te corrigeren, heb een dotter gekregen in de azygos en er zijn 2 spiertjes in de hals doorgeknipt die de bloedstroom belemmerden. Resultaat was directe verbetering, kracht in armen helemaal terug, geen zware benen meer, cognitieve vooruitgang door betere doorbloeding hersenen en minder plasdruk. In de loop der jaren is vooral evenwicht langzaam slechter geworden, loop nu steeds met stok terwijl dat na de operatie maar ook daarvoor niet zo was. Ziekte is dus niet verdwenen maar wel steeds draaglijk gebleven. Heb bijvoorbeeld veel baat bij goede gerichte oefeningen/fysio.

Na de teleurstelling die de uitkomst van Brave dreams gebleken was, die ook naar zich laat aanzien ook gevoed is door de eenzijdige communicatie over het onderzoek, vroeg ik mijn neuroloog hier te lande (vu) of ocrevus een idee was om te nemen. Heb dus nooit enig medicijn geprobeerd. Daarvoor moest eerst een mri plaatshebben. Zo geschiedde en daaruit bleek dat sinds de enige eerdere scan gemaakt in kader diagnose ms ruim 5 jaar geleden, dus voor de ccsvi ingreep, geen verdere laesies te zien zijn. Ik blij. Ocrevus, die juist de voortgang ontstekingen moet remmen, dus ontraden, ik opnieuw blij.

Ik vroeg de neuroloog Van Oosten of er een verband zou kunnen zijn tussen uitblijven laesies en ccsvi ingreep, waarop deze antwoordde deze gedachte echt te kort door de bocht te vinden.Verder: 'Dit is een situatie die bij mensen met primair progressieve MS (behandeld of niet) vaak gezien wordt. In vergelijking met andere beloopsvormen van MS (met name relapsing remitting MS) zie je bij primair progressieve MS relatief weinig laesies op de MRI, met ook weinig toename in de tijd.

De achteruitgang hangt samen met processen die we op een MRI niet zo goed vangen.'

Laesies en toename daarvan zijn dus niet alleszeggend in zijn ogen. Op deze momenten voel ik mij heel erg een leek-patient en ervaar een dringende behoefte aan meer inzicht! Behalve de laesies is er ook sprake van afbraak van cellen herinner ik mij uit het gesprekje met Van Oosten waarbij ik de uitkomst kreeg. Ik ben er zeker niet iedere dag mee bezig maar wil toch de aantasting van mijn gezondheid zo goed mogelijk snappen. Zeg maar, sterkte iedereen!
Miss J
Berichten: 92
Lid geworden op: 17 okt 2017, 12:59

Bericht door Miss J »

Thomas11 = Leonard ?
Berichten: 3660
Lid geworden op: 23 mei 2010, 08:24
Locatie: Bunschoten

Bericht door Sylvia1 »

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