Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 Hi Janet, A friend of mine had a similar experience here in the UK. A vascular surgeon who no longer carries out the scan was adamant there was no blockage - when my friend went to Poland they found blockages via the Doppler. Having said that when my wife had her procedure another patient, an American lady, had her Doppler and they found no issues. Dr Simka suggested they do the venography regardless and they found occulsions very high up near her ears on both sides. Another patient was told she only had a minor blockage via the Doppler but when they did the venography they found a major blockage in one of the jugulars and one in the Azygos (which cannot be detected by a Doppler). The Doppler is usually a good indicator of blockages but the Venography is the GOLD standard. Cheers, Pinda > > > I had a test a few weeks ago at a local hospital here in Spain and was told I don't have CCSVI. However, I also found out that none of the MS people they had tested had it, nor any in the general populace, and it therefore did not exist! > > > > I do not believe this for one second and presume they are not doing the tests correctly, no doubt to disprove the theory. > > > > I am down for CCSVI testing and treatment in a couple of weeks' time in Poland. If I can just prove my neurologist wrong I shall be very pleased; walking will be a further benefit. > > > > I'll keep you updated. > > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 I would very much agree with you. I think that many doctors don't test with the correct protocols and when they do find and treat blockages, they often disregard 'minor' flow disturbances as unimportant. I also think that many doctors aren't identifying azygous issues. Dr Zamboni and Dr Tariq both find issues in a majority of patients whereas doctors in Belgium and Germany are not. I think the major ijv blockages are the easy obvious issues but unfortunately some of us aren't the easy fixes. I still believe being treated, albeit only partially, was absolutely worthwhile for me, but I do believe I have more issues to be addressed. (I was treated in Germany in August--40% blocked left ijv and 10% right) What tests did you have done in Spain? I hope you have great results in Poland! > > > I had a test a few weeks ago at a local hospital here in Spain and was told I don't have CCSVI. However, I also found out that none of the MS people they had tested had it, nor any in the general populace, and it therefore did not exist! > > > > I do not believe this for one second and presume they are not doing the tests correctly, no doubt to disprove the theory. > > > > I am down for CCSVI testing and treatment in a couple of weeks' time in Poland. If I can just prove my neurologist wrong I shall be very pleased; walking will be a further benefit. > > > > I'll keep you updated. > > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Janet that is WONDERFUL! I am so happy for you! We're saving up so I can get screened to see if I have blockages. Enjoy your new found freedom! Yvette On Fri, Oct 29, 2010 at 5:50 PM, Janet Orchard wrote: > > > > > Treatment late Monday night. 100%!!!! stenosis left jugular when seated, > 65% when lying. Hands not only got warm but sweated as they ballooned the > jugular. I looked up at the ceiling thinking some moisture was falling down > as it had been so many years since I'd perspired I had forgotten about it. > Total upper body strength and balance restored, normal hands (and I can > snap my fingers which I have never been able to do), clear, clear head, no > brain fog whatsoever. a different way of seeing things - no panic, no worry, > all totally serene. And that was all immediate. NO pain and so many other > things. > Constipation gone, incontinence too - so much so that I have just flown > from Warsaw to Barcelona (3 hour flight) with no toilet on board that I > could reach, stopped at Barcelona airport before the 2 hour car journey up > here and couldn't even pee! Sorry for the graphic info but I know a lot of > you would do CCSVI treatment to cure constipation/bladder issues/pain alone. > EVERYONE should do this. If you can't afford it, sell something, don't buy > a new car, forego your holidays/Xmas/birthdays, re-mortgage... > If anyone wants further info, I'd be happy to chat to you off-list. > Liberated Janet ))))))))))) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Janet - oh my gosh - that's wonderful! Where did you have the it done? betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Dear Janet, Absolutely delighted to hear what is the very best news. May it continue. We are all longing to hear how everything progresses. Congratulations, Judith CCSVI Treatment late Monday night. 100%!!!! stenosis left jugular when seated, 65% when lying. Hands not only got warm but sweated as they ballooned the jugular. I looked up at the ceiling thinking some moisture was falling down as it had been so many years since I'd perspired I had forgotten about it. Total upper body strength and balance restored, normal hands (and I can snap my fingers which I have never been able to do), clear, clear head, no brain fog whatsoever. a different way of seeing things - no panic, no worry, all totally serene. And that was all immediate. NO pain and so many other things. Constipation gone, incontinence too - so much so that I have just flown from Warsaw to Barcelona (3 hour flight) with no toilet on board that I could reach, stopped at Barcelona airport before the 2 hour car journey up here and couldn't even pee! Sorry for the graphic info but I know a lot of you would do CCSVI treatment to cure constipation/bladder issues/pain alone. EVERYONE should do this. If you can't afford it, sell something, don't buy a new car, forego your holidays/Xmas/birthdays, re-mortgage... If anyone wants further info, I'd be happy to chat to you off-list. Liberated Janet ))))))))))) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2010 Report Share Posted October 31, 2010 Congratulations! I want to read that you're walking soon and that your wheelchair is in the garage! > > > > > > > > > > > > > Treatment late Monday night. 100%!!!! stenosis left jugular when seated, 65% when lying. Hands not only got warm but sweated as they ballooned the jugular. I looked up at the ceiling thinking some moisture was falling down as it had been so many years since I'd perspired I had forgotten about it. > Total upper body strength and balance restored, normal hands (and I can snap my fingers which I have never been able to do), clear, clear head, no brain fog whatsoever. a different way of seeing things - no panic, no worry, all totally serene. And that was all immediate. NO pain and so many other things. > Constipation gone, incontinence too - so much so that I have just flown from Warsaw to Barcelona (3 hour flight) with no toilet on board that I could reach, stopped at Barcelona airport before the 2 hour car journey up here and couldn't even pee! Sorry for the graphic info but I know a lot of you would do CCSVI treatment to cure constipation/bladder issues/pain alone. > EVERYONE should do this. If you can't afford it, sell something, don't buy a new car, forego your holidays/Xmas/birthdays, re-mortgage... > If anyone wants further info, I'd be happy to chat to you off-list. > Liberated Janet ))))))))))) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2010 Report Share Posted October 31, 2010 http://www.lifeguardclinic.com/VIPProgramforMSPatients.htm You can have it done in Phoenix, AZ at the Arizona Heart Institute. > > > Janet - oh my gosh - that's wonderful! Where did you have the it done? > > betsy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2010 Report Share Posted October 31, 2010 Hi Janet, This is fantastic news - I am delighted to hear of your improvements. Remember to take things easy for the next couple of months - I know this will be difficult but it is so important not to overdo it. My wife has had what seems like limitless energy following her procedure back in June and on a couple of occasions she has overdone it and felt that MS may rear its ugly head again - so this is just a word of caution really. Isn't that strange feeling of 'something has just happend to me' whilst being on the operating table the best feeling ever? Not everyone who is Liberated gets such an immediate positive response. My wife said she knew straight away it had worked just like yourself. Beautiful. Cheers and enjoy. Pinda PS I feel that a sound dietary protocol is even more important than pre-CCSVI treatment so please ensure your diet stays in check! > > > Treatment late Monday night. 100%!!!! stenosis left jugular when seated, 65% when lying. Hands not only got warm but sweated as they ballooned the jugular. I looked up at the ceiling thinking some moisture was falling down as it had been so many years since I'd perspired I had forgotten about it. > Total upper body strength and balance restored, normal hands (and I can snap my fingers which I have never been able to do), clear, clear head, no brain fog whatsoever. a different way of seeing things - no panic, no worry, all totally serene. And that was all immediate. NO pain and so many other things. > Constipation gone, incontinence too - so much so that I have just flown from Warsaw to Barcelona (3 hour flight) with no toilet on board that I could reach, stopped at Barcelona airport before the 2 hour car journey up here and couldn't even pee! Sorry for the graphic info but I know a lot of you would do CCSVI treatment to cure constipation/bladder issues/pain alone. > EVERYONE should do this. If you can't afford it, sell something, don't buy a new car, forego your holidays/Xmas/birthdays, re-mortgage... > If anyone wants further info, I'd be happy to chat to you off-list. > Liberated Janet ))))))))))) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2010 Report Share Posted October 31, 2010 > PS I feel that a sound dietary protocol is even more important than pre-CCSVI treatment so please ensure your diet stays in check! > I don't see Janet giving up BBD anytime soon! lol Congrats Janet, and keep us posted! Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2010 Report Share Posted November 3, 2010 Hi Everyone, A recent study has shown no association between MS and impaired cerebral venous drainage. For more information, visit http://www.msif.org/en/research/ms_research_news/noabnormalcrania.html Best regards, Dudley Delany http://profiles.yahoo.com/dudley_delany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Studies are great for the folks out there who need them to proove their drug only kills a fraction of the people who used it. Look at the videos on YouTube and there's all the proof I you need to know some study that discredits CCSVI/Liberation treatment is nothing to factor in to an opinion that it's a valid treatment option. Sometimes you need to wade through all the medical BS and use good old fashioned god given common sense!!! C'mon people?! -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 I have PPMS and CCSVI treatment is the best thing I have done. It might not be able to readdress the damage MS has done, time will tell but it has been worth it to a) totally get rid of fatigue, brain fog, confusion, worry, pain and so many other things. Stop progression. The legs will take longer. I am in no hurry - 15 years with this, what is an extra month or so? And if it doesn't do it, I am so happy with all my new pluses which maybe from the outside of MS don't look such a great deal. Janet To: mscured From: mwrogers6005@... Date: Sun, 14 Nov 2010 17:53:24 +0000 Subject: CCSVI Well, reading all about this CCSVI is wonderful sounding, and I'd love to get involved. However, I just want to verify that us people with SPMS will not benefit from CCSVI diagnosis/treatment. There was a video on YouTube, Dr. Dake I think who made this statement re: SPMS/PPMS and the lack of benefit of CCSVI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 I don't have an answer for you, but I wouldn't rule CCSVI out based on what " other people " have said. I have SPMS. 5 years ago I could not see to read, or drive. I needed a scooter outside my home and a walker inside my home because my balance was gone. Most days I had trouble feeding and dressing myself because of ms issues. I was completely brain fogged and always exhausted. Doctors told my husband to start looking for a nursing home for me because I was quickly approaching that point. " They " told us diet, supplements and LDN wouldn't do anything for me. And yet, today my own family sometimes forgets I have ms. Friends and acquaintances don't know unless I tell them, and I only have symptoms when I am off my diet plan. I homeschool 4 of our 6 kids, keep up with our animals, run my copywriting business, and play saxophone in the local orchestra, and clarinet in the local community band. Right now I am under contract to write my second book, and have talked for the third in the works. Nope, I'm not " cured " but I am managing the ms. I've reversed all my symptoms and stopped the progression. After being told it was impossible. Even the " experts " don't have the answers, so never.. Never give up hope. Yvette. On Sun, Nov 14, 2010 at 11:53 AM, mwrogers6005@... < mwrogers6005@...> wrote: > > > Well, reading all about this CCSVI is wonderful sounding, and I'd love to > get involved. However, I just want to verify that us people with SPMS will > not benefit from CCSVI diagnosis/treatment. There was a video on YouTube, > Dr. Dake I think who made this statement re: SPMS/PPMS and the lack of > benefit of CCSVI. > > > -- Yvette Freelance Writer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 What does 'benefit' exactly mean? SPMS patients may not get miraculous results but if the CCSVI treatment means no more progression then surely its worth? There are some cases which do not fit the general consensus of " people with SPMS will not benefit from CCSVI " . I personally know two people, one with SPMS and another who has PPMS who have so far both benefited from the treatment significantly. Unfortunately pwMS will only know if the CCSVI treatment is worth it if they get it done. Cheers, Pinda > > Well, reading all about this CCSVI is wonderful sounding, and I'd love to get involved. However, I just want to verify that us people with SPMS will not benefit from CCSVI diagnosis/treatment. There was a video on YouTube, Dr. Dake I think who made this statement re: SPMS/PPMS and the lack of benefit of CCSVI. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 hi everyone, i had ccsvi done 8/27 at the AZ Heart Institute. (they are no longer doing the procedure). 80% was covered by medicare but i heard through the grapevine that they did not even mention ms in the paperwork only angioplasty for blocked blood vessels. debbie p.s. good luck...it's a piece of cake. CCSVI Hi all Anyone been to tampa, florida for ccsvi? I have an appt jan 20. Has medicare covered it? I mean has anyone actually been notified from medicare after the procedure that it was covered? Thanks, arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 what does CCSVI stand for?I have secondary Progressive MS  Pam G Subject: CCSVI To: mscured Date: Sunday, November 14, 2010, 8:25 PM    Hi all  Anyone been to tampa, florida for ccsvi?  I have an appt jan 20.  Has medicare covered it?  I mean has anyone actually been notified from medicare after the procedure that it was covered? Thanks, arlene  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Oh how wonderful ! What a great new year present. I wish you every success. If you are taking EGCg (green tea extract) gradually reduce the dose if you suspect you will be put on blood thinners - the 2 interact). I am so happy for you. Soon you will be crossing your legs and going up stairs too. (Of course you feel better already, it is only placebo - my neuro told me that when I saw him yesterday! He said Tysabri was much safer (which currently has 79 confirmed cases of PML, and 16 deaths). Biogen, the manufacturers, forecast quarterly sales of $1 billion. I looked around and surprise surprise there was a Biogen desk calendar, complete with poster on the other wall. Surprised I got out of the office without catching anything.) Janet To: mscured From: alpdesigns1@... Date: Thu, 30 Dec 2010 05:14:10 +0000 Subject: CCSVI I've been watching CCSVI videos today and I told my mom that I had to find a way to get this done. She reminded me that my dad's first cousin is a cardiologist in Ft. Worth, Tx. and that I should call him when we get to the ranch a few miles away. She said that she will pay the balance of the treatment from what I've saved. I haven't had the proceedure but I already feel better! Thank you all for bringing this to light and sharing your experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Oh how wonderful ! What a great new year present. I wish you every success. If you are taking EGCg (green tea extract) gradually reduce the dose if you suspect you will be put on blood thinners - the 2 interact). I am so happy for you. Soon you will be crossing your legs and going up stairs too. (Of course you feel better already, it is only placebo - my neuro told me that when I saw him yesterday! He said Tysabri was much safer (which currently has 79 confirmed cases of PML, and 16 deaths). Biogen, the manufacturers, forecast quarterly sales of $1 billion. I looked around and surprise surprise there was a Biogen desk calendar, complete with poster on the other wall. Surprised I got out of the office without catching anything.) Janet To: mscured From: alpdesigns1@... Date: Thu, 30 Dec 2010 05:14:10 +0000 Subject: CCSVI I've been watching CCSVI videos today and I told my mom that I had to find a way to get this done. She reminded me that my dad's first cousin is a cardiologist in Ft. Worth, Tx. and that I should call him when we get to the ranch a few miles away. She said that she will pay the balance of the treatment from what I've saved. I haven't had the proceedure but I already feel better! Thank you all for bringing this to light and sharing your experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Hi What great news!!! I'm sure we'll all look forward to hearing YOUR improvements and successes! As I'm sure you'll experience, even the small things are things that make a HUGE difference to our daily lives - I wish you well with it and am currently grinning ear-to-ear! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) > To: mscured > From: janetorchard@... > Date: Thu, 30 Dec 2010 11:44:55 +0100 > Subject: RE: CCSVI > > > Oh how wonderful ! What a great new year present. > I wish you every success. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 I'm not taking EGCg but what about butcher's broom and horse chestnut? > > > Oh how wonderful ! What a great new year present. > I wish you every success. > If you are taking EGCg (green tea extract) gradually reduce the dose if you suspect you will be put on blood thinners - the 2 interact). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 I'm not taking EGCg but what about butcher's broom and horse chestnut? > > > Oh how wonderful ! What a great new year present. > I wish you every success. > If you are taking EGCg (green tea extract) gradually reduce the dose if you suspect you will be put on blood thinners - the 2 interact). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Thanks . It might be awhile before this happens but knowing that it's a possibility has taken some of the stress away. > > > Hi > What great news!!! > I'm sure we'll all look forward to hearing YOUR improvements and successes! > > As I'm sure you'll experience, even the small things are things that make a HUGE difference to our daily lives - I wish you well with it and am currently grinning ear-to-ear! > > > 'What we do in life, echoes through eternity.' > MARCUS AURELIUS (121 - 180 A.D.) > > > > > > To: mscured > > From: janetorchard@... > > Date: Thu, 30 Dec 2010 11:44:55 +0100 > > Subject: RE: CCSVI > > > > > > Oh how wonderful ! What a great new year present. > > I wish you every success. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 i'm happy for you allison. you won't regret it. i've found that fish oil after the procedure will keep your blood from clotting and ip6 will dissolve the free iron in your brain. cups of green tea are also beneficial post procedure. good luck! CCSVI I've been watching CCSVI videos today and I told my mom that I had to find a way to get this done. She reminded me that my dad's first cousin is a cardiologist in Ft. Worth, Tx. and that I should call him when we get to the ranch a few miles away. She said that she will pay the balance of the treatment from what I've saved. I haven't had the proceedure but I already feel better! Thank you all for bringing this to light and sharing your experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 i'm happy for you allison. you won't regret it. i've found that fish oil after the procedure will keep your blood from clotting and ip6 will dissolve the free iron in your brain. cups of green tea are also beneficial post procedure. good luck! CCSVI I've been watching CCSVI videos today and I told my mom that I had to find a way to get this done. She reminded me that my dad's first cousin is a cardiologist in Ft. Worth, Tx. and that I should call him when we get to the ranch a few miles away. She said that she will pay the balance of the treatment from what I've saved. I haven't had the proceedure but I already feel better! Thank you all for bringing this to light and sharing your experiences. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Thank you. Fish oil as opposed to cod liver oil? I'm getting conflicting opinions on green tea. Why do you think it's beneficial? Did you take ip6 before the treatment? > > i'm happy for you allison. you won't regret it. i've found that fish oil after the procedure will keep your blood from clotting and ip6 will dissolve the free iron in your brain. cups of green tea are also beneficial post procedure. good luck! Quote Link to comment Share on other sites More sharing options...
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