Hi Kerri. I'm in the States. Had th procedure 5 days ago. Wanted to comment that I had NO testing beforehand. IR stated you really couldn't tell about blockage til you got in there to do it!! So, please don't rely on tests!
@chowdershop That is a really good point, it is only good as a screening tool but you can't rule out CCSVI as there is the possibility of a false negative. It is so operator dependant.
A new CCSVI clinic it is available in Bucharest, Doctors team from Bucharest are certified by DR.ZAMBONI in Ferrara and by Dr. Simka in Poland to perform the CCSVI treatment/procedures.
The price of the treatment INCLUDING Travel Expenses(flight ticket,accomodation,transfers,all exams,angioplasty) is 8200 USD for USA/CANADA patients and for europe patients 5100 Euro Incl. Travel expenses.
I was diagnosed with MS back in 1983.Recently I came across ccsviclinic.ca. They are screening in Fargo, ND. Called (404)461-9560 and spoke to Nurse Lisa. Their Liberation Package includes pre-op video consultation with their doctors, flight costs, visas, accommodation within their hospital premises. The treatment includes stent, medications, reports & post-op followup for next 6 mths. Email:apply@ccsviclinic.ca. Getting liberated mid-November. Thankful to CCSVI Clinic for making this happen!
I agree with you,I think if a person could not walk anymore it might be worth taking the chance of going there but it also comes with the big exspense so I thinf I will just wait awile till it comes to Canada.Lets keep in touch if you do not mind.
I had one friend go to India for this treatment with a big cost to bring home with him and he said himself that he is no better in the long run,and I agree with him that he is no better so I think I will just old off on going down there myself at the moment..I need to see some better results before I go...
@lawrence181961 Yeh I am inclined to agree to be honest (easy for me to say). I don't think I would be going to India either. I have had terrific results don't get me wrong and I recommend it for everyone to at least get tested and if CCSVI is found be treated. I just feel follow up is very important, a scan at least a few months later to see if the blockages have renarrowed and further treatment if needed.This is not a one stop fix it needs monitoring. Best to fight for it at home :)
@lawrence181961 He might have cross reactoins with food causing his MS.. I've heard of peopel having gluten or dairy intolerences and removing that food from their diet only to find that their nerve problems disappered. Artifical sweetners are killers too, reallly messed me up with nerve problems, thankfully they werent permant.
Hi Kerry this is Lawrence again,do you think the cost of this treatment is worth it in the long run?I can still walk pretty good and was wondering if would be worth it to have this done or if I should wait a couple a years???
@lawrence181961 Hi again :) Tough question. In Australia it is covered under Medicare as a standard vein angioplasty procedure so I did not have to make this choice. Would I have paid $5,000 for it? Possibly, but with hindsight, knowing that restenosis is possible, I would probably now be waiting to see if there are more long lasting alternatives (stents? not sure) Just highlights we need urgent research into treatment - it should be available to all. K
@lawrence181961@lawrence181961 I am quite in the same situation as you i have been diagnosticated with ms for an year now and fortunatelly i can still do a lot of things, i can´t run anymore though, but the question is the same: should i pay that much amount of mony for the ccsvi? i mean is just an angioplasty after all. i live in portugal and the doctors here say that ccsvi is a scam. there is a clinic here though that do this procedure but the cost is like 9000 euros. that´s a lot of mony
@sorinlisboa79 9000 Euros is a lot of money! I can't advise you either way. I will say, if it were me and I didn't feel like I was progressing, I would wait it out a little longer and see if the research comes through soon. Once it is validated I am sure the prices will come down. You are right, it is just an angioplasty. It should not be costing so much money to have done. People have this done for different reasons everyday and it is a shame because someone has MS it is this expensive.
it comes to CCSVI, the interests of the neurologists and the societies are best served by having CCSVI marginalized, by not funding any CCSVI treatment research, and by lobbying the government to not allow any treatment of impaired venous drainage in persons with MS despite the obvious health hazard such a condition represents. The reasons for such actions are straightforward.
I just wanted to say that these posts truly show how powerful youtube can be as a communication medium. I live in Tampa, Florida, USA. I have an number of friends that are living with MS and this procedure has been a hot topic. As it turns out, I work closely with some Vascular Interventional surgeons and I am passing on as much information about this topic as I can in hopes that they will see the potential benefits this procedure has for the recipients. WOW, THIS IS EXCITING!
@brianleemorrison You are right, social media is amazing at bring results all together in one place and you can get a very good picture of what is happening. Also many of us who have had the procedure were posting to youtube months before CCSVI was heard of so you can see us for the month/years before hand and compare with now. Thanks for your comment. Kerri
So chuffed you're getting on so well. Does your surgeon do many liberation procedures for o/s patients? Is he v skilled? Do you know the cost? My concerns are risk factors and restenosis? Is the procedure often repeated? Is a 2nd enough? Also, if I come home from another country after the procedure and I have issues this could be problematic? Ps I cried when I heard how you felt after the procedure! I've also a few questions which I didn't want to post. If its ok how I could ask you? Cheers x
@mollyhaddock Wow heaps of questions! At the moment there are no procedures being scheduled at the hospital I was treated in. This is devastated but not unlike what seems to be happening around the world - not enough evidence! I had a second procedure as I did restenose. It is best to get treatment as close to home as possible as follow up is necessary. Thanks for your kind comments (sorry for late reply) K
Hi Kerri, my wife had the operation at the Alfred immediately after yours (we were number 4 with the Prof, and I think you were number 3?) and we have had similar results to you. I'm not much of a commenter/blogger but I wanted to say a huge thank you for posting these videos. The surgery videos really helped our nerves and this 9 week post op video is just wonderful. we have had a very similar experience to you and it's so great that you're sharing. My wife is a new person. Thanks. Mark
@milillywhite Hi Mark, that is the best news. So thrilled for you - it really has changed my life and I hope we see this rolled out to Aussies very quickly once all the boxes are ticked! Of course I want to see it happen world wide but amazing to be part of the early ones who now have some strength to do what we can to inform of our own experiences and hopefully influence those who can to take some action. Thanks for commenting. Kerri
@WithCourage2008 Thanks Anna :o) I am still doing well - no relapses since the treatment which is the big test for me. I have also gone from only being able to walk about 500 metres to 10 kilometres! That just amazes me. Hope you are doing well. Kx
Kerri, Thanks again for keeping the rest of us updated from another "in the line to be tested/treated" folks. To make things hard on you, the video close shows "CREDITS" but then does not list anybody. You should at least give yourself credit in the "CREDITS" -- because you are keeping us informed directly.
@SixtyFiveDropTop Hahaha I didn't realise I did that until I had waited an hour for it to upload!! Ok well I will take some credit but perhaps next time I will list all the people in my life who has made it possible for me (and others) to get this far - and there are many! I hope your line is moving quickly! K
Kerri. I really enjoy your informative videos. You are a brave woman and a pioneer for this new treatment. I'm really hoping that CCSVI will one day become a standard treatment for MS. Please keep the video updates coming. As Livy54 says, there are a lot of us interested in your progress. Thanks again.
@Del1957z Thanks, I hope it will become a standard test and treatment - the question is how long will it take to get this moving?? I really appreciate the kindness and support of everyone who is following. Kerri
Always have enjoyment watching your videos to see how strong you still are. Recently diagnosed with ms so I am still in the learning phase. Hope you continue to improve.
@merlynohmerlyn Thanks so much. There is a quick learning curve when you are first diagnosed I know and so glad you are being proactive and getting informed. Kerri
Thanks Kerri, your videos are such a help. I hope you realize how many of us follow your progress. This documentation is so important for both sides of this issue. I hope you continue to improve and speak out for all of us who are waiting for more testing and progress with CCSVI therapy.
@Livy54 Thanks so much. I'll keep going as long as it takes to get this treatment rolling out as a matter of course. Also there is the matter of researching whether it is causing MS or a co-morbid condition. Hope you don't have to wait too long. K
Kerri, great update as always!!! :) Again, looking so great! :D
I strongly believe (and actually was just saying earlier before I saw this vid) that I'm certainly CCSVI is connected to the warmth issue (my hands/feet always cold.. now that I've been eating very low fat diet for nearly 2 years, I'm seeing improvement in temperature.. I'm sure because the flow's been improved over time!). Also my migraines. Love ya girl! xoxo :)
@dmplaura Thanks Laura :o) Warmth issues - makes sense I reckon. Blood flow not what it should be to the heart then blood flow to the rest of you not what it should be right? Love back at ya. Kxx
Wonderful Kerri, Thanks so much for the updates. We are all so interested on people who have had the procedure and how the are doing...Good and Bad. Thanks for being so honest. :)
@Foxette1955 Thank you, I am glad that I have the story to tell and hope to see many more stories coming out in months ahead. You are right the good and bad need to be told. I think we can fear that any negative outcome might jeopardise the procedure coming out but I think there is learning to be had from all the results. K
I think that your approach to all of this has been smart and reflective. I love the show and tell part, seeing is believing! So glad that your doing well and that your doctors are working together. As everyone else has said you look Fab!!
@MSVlogSupport Thanks Andrea. I am a visual person so it always helps me to 'see' something to understand it. You cannot deny it by seeing it in black and white. I am so pleased my two Profs are talking - it can only be good for me and others. K
a friend of mine emigrated to Australia in 1994, I with I had, but then again my beautiful son was born in 1996 so i will just have to be patient! Your looking well Kerri ! I am glad you did this video I wondering how you was the other day , Nice to see you getting on well.
You look 100% better than your early videos. HEALTHY!!!!!!!!!!! Your DR is great and seems to care about the health of the people he works with. I live in a small town in the USA, Altoona Pa. I have been bugging everyone about CCSVI. You are a HERO to all of us trying to inform thge medical community. Did you decide what you are going to do about Tysabri? I am looking into Bulgaria for treatment. I used to be an athlete and wold like to look and feel as healthy as you appear to be.
@MrRhoover9 Thanks! Prof T is a legend. I am still undecided about Tysabri and a lot will depend on what happens in the next couple of months. I think MS has stolen a great deal from us all - I used to weight train and run. Yesterday I went for a short run - it felt fantastic (although I still look ridiculous running)!!! I hope I can keep building on that but am keeping realistic. K
@SRainbolt Yes, if flies in the face of the old adage "you be a good little patient and take your medicine!" I think to know your own body and act when you feel intervention is needed brings some empowerment over your own condition. He has been so good at explaining everything and giving vision for what he hopes to do. This is priceless! K
Oh dear Kerri! It is so nice to see you and to hear your words! and I am so happy that more people are getting this procedure done in the area of Australia where you live. Your explanation is very interesting. You are clear, helpful and interesting.
Thank you so much for what you are doing. It gives me hope...since all the doctors in the States are shutting me down...Take good care and THANK you for sharing your experience with us.
Lovingfatalist I do not find you comment to be constructive. Clearly, patients do not have the same assets from an organization or a doctor and Kerri is doing a wonderful job. How could she waste on accountancy? I do not understand. Kerri is just presenting information as a patient. Doctors have not care to address the topic.
@NaomiItagaki you've misunderstood a figure of speech - I just was paying Kerri a compliment. I'm sure many accountants are warm and wonderful people. I'm fairly uninhibited, for better or worse, and have made far less 'constructive' comments than this before. While I agree that we should all help each other to stay positive, I'm also sensitive to the psychic harm that repression can cause. Sorry if I caused offence, ok?
You're wasted on accountancy Kerri - I reckon you'd do best in something that involves presenting information in a clear, accessible and balanced manner. Your goodwill and equanimity is such a welcome balm. This video is gonna make Mark's day. Many others also, no doubt :-)
@lovingfatalist Aw shucks, thanks T. Yeah well as you know I don't count beans anymore (the numbers were getting harder and harder to balance!) And now my head's a lot clearer... well I am not really interested in doing it again. Life used to make more sense when everything balanced... learning to feel a bit more comfortable in the uncertainty. Kx
You truly are a pioneer Kerri - thanks so much for keeping us updated and getting the word out there! Hopefully great results like yours convince the neurology guys to allow him to keep doing the procedure! Fingers crossed - I'm seeing him 8th June :-) Kylie.
@Marlimouse78 Haha - that makes me laugh. I can't imagine the Prof thinks he needs the Neurologists permission to unblock stenosed veins. Hopefully it will bring them on board quicker. Wouldn't it be great if our Neuros could accept that this is a common condition and that it was made part of the diagnostic process? So great to hear you are seeing him - let me know how it goes. Kerri :o)
Hey kez, looking fabulous and great video as always! I'm so so happy for you. What video editing software do you use? I'm setting up my computer in my new room at the moment and want to get organised. Might even get on facebook! (join the revolution!) speak soon, Mandy.
@missalgernon Hey Mandy :o) I have started using Windows Live Movie Maker. Although I didn't really edit this. It is pretty simple though if you want to cut and paste. Yes join facebook - seeing we've met I guess we can be friends ;o) So glad you got a new computer, don't know how you've been doing it all this time from your phone! Kez xx
@watzgoodinthe711 Hey yeah... that was a huge estimate. It is much cheaper in reality I discovered (less than $4000) but overseas patients will not be put before Aussie patients in the public hospitals so please keep that in mind. I was diagnosed 2 years ago but looks like I have had it since I was 16. If you look back at my vids I pretty much go through all my symptoms. K
Kerri THANKS for that! :) Again I truly appreciate your honesty. I am wondering though, there is certain criteria that Zamboni and his team followed to get the high number of patients that showed stenosis. Are the doctors there following all the tests? It will be interesting to see where the patients were I am going are in that scale as they are following all the zamboni criteria for scanning and testing. :) These are exciting times. :) I'm glad that I am in the MS family with you.
@donotconcede Hi Judy, this result I am referring to was done under the golden standard Venogram. Why was this?? We don't know yet, perhaps there is a good reason, perhaps there is stenosis apart from Jugulars/Azygos? Incorrect initial MS diagnosis? I don't know but this is why we need all data checked out and researched, both +ve and -ve. Perhaps there is a commonality between patients who do not have stenosis. I believe Simka has had patients without stenosis using venogram too. Kx
@kezzcass Thanks for that Kerri. I thought I might have repeated myself in my question, darn MS. :) I really appreciate you, you know that :) hugs, Judy
Hi Kerri. I'm in the States. Had th procedure 5 days ago. Wanted to comment that I had NO testing beforehand. IR stated you really couldn't tell about blockage til you got in there to do it!! So, please don't rely on tests!
chowdershop 3 months ago in playlist More videos from kezzcass
@chowdershop That is a really good point, it is only good as a screening tool but you can't rule out CCSVI as there is the possibility of a false negative. It is so operator dependant.
kezzcass 3 months ago
This has been flagged as spam show
A new CCSVI clinic it is available in Bucharest, Doctors team from Bucharest are certified by DR.ZAMBONI in Ferrara and by Dr. Simka in Poland to perform the CCSVI treatment/procedures.
The price of the treatment INCLUDING Travel Expenses(flight ticket,accomodation,transfers,all exams,angioplasty) is 8200 USD for USA/CANADA patients and for europe patients 5100 Euro Incl. Travel expenses.
CCSVIROMANIA 9 months ago
I was diagnosed with MS back in 1983.Recently I came across ccsviclinic.ca. They are screening in Fargo, ND. Called (404)461-9560 and spoke to Nurse Lisa. Their Liberation Package includes pre-op video consultation with their doctors, flight costs, visas, accommodation within their hospital premises. The treatment includes stent, medications, reports & post-op followup for next 6 mths. Email:apply@ccsviclinic.ca. Getting liberated mid-November. Thankful to CCSVI Clinic for making this happen!
rebecawatson57 1 year ago
Comment removed
lawrence181961 1 year ago
I agree with you,I think if a person could not walk anymore it might be worth taking the chance of going there but it also comes with the big exspense so I thinf I will just wait awile till it comes to Canada.Lets keep in touch if you do not mind.
lawrence181961 1 year ago
I had one friend go to India for this treatment with a big cost to bring home with him and he said himself that he is no better in the long run,and I agree with him that he is no better so I think I will just old off on going down there myself at the moment..I need to see some better results before I go...
lawrence181961 1 year ago
@lawrence181961 Yeh I am inclined to agree to be honest (easy for me to say). I don't think I would be going to India either. I have had terrific results don't get me wrong and I recommend it for everyone to at least get tested and if CCSVI is found be treated. I just feel follow up is very important, a scan at least a few months later to see if the blockages have renarrowed and further treatment if needed.This is not a one stop fix it needs monitoring. Best to fight for it at home :)
kezzcass 1 year ago
@lawrence181961 He might have cross reactoins with food causing his MS.. I've heard of peopel having gluten or dairy intolerences and removing that food from their diet only to find that their nerve problems disappered. Artifical sweetners are killers too, reallly messed me up with nerve problems, thankfully they werent permant.
wordey123 1 year ago
Comment removed
lawrence181961 1 year ago
Hi Kerry this is Lawrence again,do you think the cost of this treatment is worth it in the long run?I can still walk pretty good and was wondering if would be worth it to have this done or if I should wait a couple a years???
lawrence181961 1 year ago
@lawrence181961 Hi again :) Tough question. In Australia it is covered under Medicare as a standard vein angioplasty procedure so I did not have to make this choice. Would I have paid $5,000 for it? Possibly, but with hindsight, knowing that restenosis is possible, I would probably now be waiting to see if there are more long lasting alternatives (stents? not sure) Just highlights we need urgent research into treatment - it should be available to all. K
kezzcass 1 year ago
@lawrence181961
sorinlisboa79 1 year ago
@lawrence181961 @lawrence181961 I am quite in the same situation as you i have been diagnosticated with ms for an year now and fortunatelly i can still do a lot of things, i can´t run anymore though, but the question is the same: should i pay that much amount of mony for the ccsvi? i mean is just an angioplasty after all. i live in portugal and the doctors here say that ccsvi is a scam. there is a clinic here though that do this procedure but the cost is like 9000 euros. that´s a lot of mony
sorinlisboa79 1 year ago
@sorinlisboa79 9000 Euros is a lot of money! I can't advise you either way. I will say, if it were me and I didn't feel like I was progressing, I would wait it out a little longer and see if the research comes through soon. Once it is validated I am sure the prices will come down. You are right, it is just an angioplasty. It should not be costing so much money to have done. People have this done for different reasons everyday and it is a shame because someone has MS it is this expensive.
kezzcass 1 year ago
how big is the incision for balloon angioplasty?
GeorgeN111 1 year ago
@GeorgeN111 Hi :) The incision was about 5mm. No stitches were required just a plastic adhesive patch which came off after three days. Kerri
kezzcass 1 year ago
This has been flagged as spam show
it comes to CCSVI, the interests of the neurologists and the societies are best served by having CCSVI marginalized, by not funding any CCSVI treatment research, and by lobbying the government to not allow any treatment of impaired venous drainage in persons with MS despite the obvious health hazard such a condition represents. The reasons for such actions are straightforward.
MrLeooreo 1 year ago
walk for ccsvi.
MrLeooreo 1 year ago
Are you listening neuros...???
MrLeooreo 1 year ago
I am so HAPPY that you have had such results! GREAT!!!
brianleemorrison 1 year ago
I just wanted to say that these posts truly show how powerful youtube can be as a communication medium. I live in Tampa, Florida, USA. I have an number of friends that are living with MS and this procedure has been a hot topic. As it turns out, I work closely with some Vascular Interventional surgeons and I am passing on as much information about this topic as I can in hopes that they will see the potential benefits this procedure has for the recipients. WOW, THIS IS EXCITING!
brianleemorrison 1 year ago
@brianleemorrison You are right, social media is amazing at bring results all together in one place and you can get a very good picture of what is happening. Also many of us who have had the procedure were posting to youtube months before CCSVI was heard of so you can see us for the month/years before hand and compare with now. Thanks for your comment. Kerri
kezzcass 1 year ago
Comment removed
brianleemorrison 1 year ago
So chuffed you're getting on so well. Does your surgeon do many liberation procedures for o/s patients? Is he v skilled? Do you know the cost? My concerns are risk factors and restenosis? Is the procedure often repeated? Is a 2nd enough? Also, if I come home from another country after the procedure and I have issues this could be problematic? Ps I cried when I heard how you felt after the procedure! I've also a few questions which I didn't want to post. If its ok how I could ask you? Cheers x
mollyhaddock 1 year ago
@mollyhaddock Wow heaps of questions! At the moment there are no procedures being scheduled at the hospital I was treated in. This is devastated but not unlike what seems to be happening around the world - not enough evidence! I had a second procedure as I did restenose. It is best to get treatment as close to home as possible as follow up is necessary. Thanks for your kind comments (sorry for late reply) K
kezzcass 1 year ago
Hi Kerri, my wife had the operation at the Alfred immediately after yours (we were number 4 with the Prof, and I think you were number 3?) and we have had similar results to you. I'm not much of a commenter/blogger but I wanted to say a huge thank you for posting these videos. The surgery videos really helped our nerves and this 9 week post op video is just wonderful. we have had a very similar experience to you and it's so great that you're sharing. My wife is a new person. Thanks. Mark
milillywhite 1 year ago
@milillywhite Hi Mark, that is the best news. So thrilled for you - it really has changed my life and I hope we see this rolled out to Aussies very quickly once all the boxes are ticked! Of course I want to see it happen world wide but amazing to be part of the early ones who now have some strength to do what we can to inform of our own experiences and hopefully influence those who can to take some action. Thanks for commenting. Kerri
kezzcass 1 year ago
i had the balloon thing and i do feel better :o) bulgaria is so cool
burgerhouse111 1 year ago
@burgerhouse111 That is terrific. So much good news coming from Bulgaris :o)
kezzcass 1 year ago
Thank you so much for doing this, Kerri!! I am so glad that you are doing well! That is fantastic!!! I hope you keep improving and improving!!
WithCourage2008 1 year ago
@WithCourage2008 Thanks Anna :o) I am still doing well - no relapses since the treatment which is the big test for me. I have also gone from only being able to walk about 500 metres to 10 kilometres! That just amazes me. Hope you are doing well. Kx
kezzcass 1 year ago
@kezzcass WOW, Kerri! That is just incredible! =) I am so proud of u! Keep up the great work! So sorry I have been MIA! I have been so busy!
Wishing u the best!
WithCourage2008 1 year ago
Keep the updates coming! Thanks for leading the way!
msclinicaltrialsinfo 1 year ago
@msclinicaltrialsinfo Will do, not that I am alone in leading the way, just playing my part. :o)
kezzcass 1 year ago
Kerri, Thanks again for keeping the rest of us updated from another "in the line to be tested/treated" folks. To make things hard on you, the video close shows "CREDITS" but then does not list anybody. You should at least give yourself credit in the "CREDITS" -- because you are keeping us informed directly.
SixtyFiveDropTop 1 year ago
@SixtyFiveDropTop Hahaha I didn't realise I did that until I had waited an hour for it to upload!! Ok well I will take some credit but perhaps next time I will list all the people in my life who has made it possible for me (and others) to get this far - and there are many! I hope your line is moving quickly! K
kezzcass 1 year ago
Kerri. I really enjoy your informative videos. You are a brave woman and a pioneer for this new treatment. I'm really hoping that CCSVI will one day become a standard treatment for MS. Please keep the video updates coming. As Livy54 says, there are a lot of us interested in your progress. Thanks again.
Del1957z 1 year ago
@Del1957z Thanks, I hope it will become a standard test and treatment - the question is how long will it take to get this moving?? I really appreciate the kindness and support of everyone who is following. Kerri
kezzcass 1 year ago
Always have enjoyment watching your videos to see how strong you still are. Recently diagnosed with ms so I am still in the learning phase. Hope you continue to improve.
merlynohmerlyn 1 year ago
@merlynohmerlyn Thanks so much. There is a quick learning curve when you are first diagnosed I know and so glad you are being proactive and getting informed. Kerri
kezzcass 1 year ago
@sandyCanada56 Thanks, thought I'd share some of my 'green.' :o)
kezzcass 1 year ago
@sandyCanada56 Thanks Sandy. I hope it moves faster everywhere!! Keep banging that drum Canada!! K
kezzcass 1 year ago
Thanks Kerri, your videos are such a help. I hope you realize how many of us follow your progress. This documentation is so important for both sides of this issue. I hope you continue to improve and speak out for all of us who are waiting for more testing and progress with CCSVI therapy.
Livy54 1 year ago
@Livy54 Thanks so much. I'll keep going as long as it takes to get this treatment rolling out as a matter of course. Also there is the matter of researching whether it is causing MS or a co-morbid condition. Hope you don't have to wait too long. K
kezzcass 1 year ago
Kerri, great update as always!!! :) Again, looking so great! :D
I strongly believe (and actually was just saying earlier before I saw this vid) that I'm certainly CCSVI is connected to the warmth issue (my hands/feet always cold.. now that I've been eating very low fat diet for nearly 2 years, I'm seeing improvement in temperature.. I'm sure because the flow's been improved over time!). Also my migraines. Love ya girl! xoxo :)
dmplaura 1 year ago
@dmplaura Thanks Laura :o) Warmth issues - makes sense I reckon. Blood flow not what it should be to the heart then blood flow to the rest of you not what it should be right? Love back at ya. Kxx
kezzcass 1 year ago
Beautiful video. Very interesting. :-)
Prissie28 1 year ago
@Prissie28 Thanks Astrid :o)
kezzcass 1 year ago
Wonderful Kerri, Thanks so much for the updates. We are all so interested on people who have had the procedure and how the are doing...Good and Bad. Thanks for being so honest. :)
Foxette1955 1 year ago
@Foxette1955 Thank you, I am glad that I have the story to tell and hope to see many more stories coming out in months ahead. You are right the good and bad need to be told. I think we can fear that any negative outcome might jeopardise the procedure coming out but I think there is learning to be had from all the results. K
kezzcass 1 year ago
I think that your approach to all of this has been smart and reflective. I love the show and tell part, seeing is believing! So glad that your doing well and that your doctors are working together. As everyone else has said you look Fab!!
MSVlogSupport 1 year ago
@MSVlogSupport Thanks Andrea. I am a visual person so it always helps me to 'see' something to understand it. You cannot deny it by seeing it in black and white. I am so pleased my two Profs are talking - it can only be good for me and others. K
kezzcass 1 year ago
a friend of mine emigrated to Australia in 1994, I with I had, but then again my beautiful son was born in 1996 so i will just have to be patient! Your looking well Kerri ! I am glad you did this video I wondering how you was the other day , Nice to see you getting on well.
Trev
gekiryudojo 1 year ago
@gekiryudojo Well perhaps you are needed in the UK for a reason? Thanks for kind comments. Kerri
kezzcass 1 year ago
You look 100% better than your early videos. HEALTHY!!!!!!!!!!! Your DR is great and seems to care about the health of the people he works with. I live in a small town in the USA, Altoona Pa. I have been bugging everyone about CCSVI. You are a HERO to all of us trying to inform thge medical community. Did you decide what you are going to do about Tysabri? I am looking into Bulgaria for treatment. I used to be an athlete and wold like to look and feel as healthy as you appear to be.
MrRhoover9 1 year ago
@MrRhoover9 Thanks! Prof T is a legend. I am still undecided about Tysabri and a lot will depend on what happens in the next couple of months. I think MS has stolen a great deal from us all - I used to weight train and run. Yesterday I went for a short run - it felt fantastic (although I still look ridiculous running)!!! I hope I can keep building on that but am keeping realistic. K
kezzcass 1 year ago
You're looking great Kerri!
margreet0 1 year ago
@margreet0 Thanks :o)
kezzcass 1 year ago
Awesome to have a doc willing to trust you on monitoring your symptoms and he'll redo it when/if necessary.
Also great that he's putting together such a presentation regarding this :D
SRainbolt 1 year ago
@SRainbolt Yes, if flies in the face of the old adage "you be a good little patient and take your medicine!" I think to know your own body and act when you feel intervention is needed brings some empowerment over your own condition. He has been so good at explaining everything and giving vision for what he hopes to do. This is priceless! K
kezzcass 1 year ago
Oh dear Kerri! It is so nice to see you and to hear your words! and I am so happy that more people are getting this procedure done in the area of Australia where you live. Your explanation is very interesting. You are clear, helpful and interesting.
Thank you so much for what you are doing. It gives me hope...since all the doctors in the States are shutting me down...Take good care and THANK you for sharing your experience with us.
Angela
angelusa73 1 year ago
Lovingfatalist I do not find you comment to be constructive. Clearly, patients do not have the same assets from an organization or a doctor and Kerri is doing a wonderful job. How could she waste on accountancy? I do not understand. Kerri is just presenting information as a patient. Doctors have not care to address the topic.
NaomiItagaki 1 year ago
@NaomiItagaki you've misunderstood a figure of speech - I just was paying Kerri a compliment. I'm sure many accountants are warm and wonderful people. I'm fairly uninhibited, for better or worse, and have made far less 'constructive' comments than this before. While I agree that we should all help each other to stay positive, I'm also sensitive to the psychic harm that repression can cause. Sorry if I caused offence, ok?
lovingfatalist 1 year ago
@NaomiItagaki I understood lovingfatalist's comment. No offense was taken by me. Thanks for your kind comments. :o)
kezzcass 1 year ago
Hey Kerri! So good to hear from you! I too am doing well with my Liberation! It's amazing! We all have so much to look forward to!
9gabbycats 1 year ago
@9gabbycats Too true :o)
kezzcass 1 year ago
You're wasted on accountancy Kerri - I reckon you'd do best in something that involves presenting information in a clear, accessible and balanced manner. Your goodwill and equanimity is such a welcome balm. This video is gonna make Mark's day. Many others also, no doubt :-)
lovingfatalist 1 year ago
@lovingfatalist Aw shucks, thanks T. Yeah well as you know I don't count beans anymore (the numbers were getting harder and harder to balance!) And now my head's a lot clearer... well I am not really interested in doing it again. Life used to make more sense when everything balanced... learning to feel a bit more comfortable in the uncertainty. Kx
kezzcass 1 year ago
@kezzcass the numbers were getting hard to balance? You weren't working for the Lehman brothers were you?
lovingfatalist 1 year ago
@lovingfatalist damn you used serious vocabulary LOL
watzgoodinthe711 1 year ago
You truly are a pioneer Kerri - thanks so much for keeping us updated and getting the word out there! Hopefully great results like yours convince the neurology guys to allow him to keep doing the procedure! Fingers crossed - I'm seeing him 8th June :-) Kylie.
Marlimouse78 1 year ago
@Marlimouse78 Haha - that makes me laugh. I can't imagine the Prof thinks he needs the Neurologists permission to unblock stenosed veins. Hopefully it will bring them on board quicker. Wouldn't it be great if our Neuros could accept that this is a common condition and that it was made part of the diagnostic process? So great to hear you are seeing him - let me know how it goes. Kerri :o)
kezzcass 1 year ago
HI Kerri,
you're looking great! Thanks for keeping us updated and being so honest about everything. It's excellent to see you looking so good :o)
Have a great walk!
H
13Harms 1 year ago
@13Harms Thanks H, Hope you are keeping well. K
kezzcass 1 year ago
Thank Kerri, the pice of ur veins are very interesting.. :)
will see u soon!
Omario
omexmc80 1 year ago
@omexmc80 It is pretty clear isn't it? Before and after shots are hard to argue with!
Yes you shall - looking forward to our vid ;o). K
kezzcass 1 year ago
Hey kez, looking fabulous and great video as always! I'm so so happy for you. What video editing software do you use? I'm setting up my computer in my new room at the moment and want to get organised. Might even get on facebook! (join the revolution!) speak soon, Mandy.
missalgernon 1 year ago
@missalgernon Hey Mandy :o) I have started using Windows Live Movie Maker. Although I didn't really edit this. It is pretty simple though if you want to cut and paste. Yes join facebook - seeing we've met I guess we can be friends ;o) So glad you got a new computer, don't know how you've been doing it all this time from your phone! Kez xx
kezzcass 1 year ago
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watzgoodinthe711 1 year ago
@watzgoodinthe711 Hey yeah... that was a huge estimate. It is much cheaper in reality I discovered (less than $4000) but overseas patients will not be put before Aussie patients in the public hospitals so please keep that in mind. I was diagnosed 2 years ago but looks like I have had it since I was 16. If you look back at my vids I pretty much go through all my symptoms. K
kezzcass 1 year ago
Kerri THANKS for that! :) Again I truly appreciate your honesty. I am wondering though, there is certain criteria that Zamboni and his team followed to get the high number of patients that showed stenosis. Are the doctors there following all the tests? It will be interesting to see where the patients were I am going are in that scale as they are following all the zamboni criteria for scanning and testing. :) These are exciting times. :) I'm glad that I am in the MS family with you.
donotconcede 1 year ago
@donotconcede Hi Judy, this result I am referring to was done under the golden standard Venogram. Why was this?? We don't know yet, perhaps there is a good reason, perhaps there is stenosis apart from Jugulars/Azygos? Incorrect initial MS diagnosis? I don't know but this is why we need all data checked out and researched, both +ve and -ve. Perhaps there is a commonality between patients who do not have stenosis. I believe Simka has had patients without stenosis using venogram too. Kx
kezzcass 1 year ago
@kezzcass Thanks for that Kerri. I thought I might have repeated myself in my question, darn MS. :) I really appreciate you, you know that :) hugs, Judy
donotconcede 1 year ago
@donotconcede No probs, it was probably a question other people were thinking anyway. K
kezzcass 1 year ago