Added: 1 year ago
From: kezzcass
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  • We have been keeping patients hospitalized for a week to 10 days as a matter of safety and monitoring them for symptoms. Nobody who has the liberation therapy gets discharged earlier than that. During that time we do daily Doppler Ultrasounds, blood work and blood pressure monitoring among other testing. For more information Log on to ccsviclinic.ca OR Call on: +1 (404) 461-9560.

  • This has been the safe practice standard that we have adopted and this post-procedure monitoring over 10 days is the subject of our recent study as it relates to CCSVI for MS patients.” For more information Log on to ccsviclinic.ca OR Call on: +1 (404) 461-9560.

  • Hello, I am very interested in the CCSVI treatment but the information is so controversial. Could you please tell me how do you feel since your angioplasty and if there were any visible changes on your MRI scans? Thank you very much!

  • @xlaonis Hi, I am doing great. Please see my very latest video (posted two days ago). I answer all these questions. Kerri

  • A good friend of mine who has MS, will be visiting Melbourne next week and would very much like to talk to/meet with someone who has had the liberation procedure performed and is willing to chat about it. My friend is seriously contemplating having the procedure in the near future but does not have easy access to the internet and is seeking some reassurances through a face to face chat. Can you suggest someone in Melbourne that might be able to help.?

    Best Regards

    Peter

  • @petesullys Hi Peter, I have been O/S so perhaps I have missed them. PM if there is anything I can do to help. K

  • oin my group on facebook... ccsvi and the liberation treatment in the USA. help me fight

  • @apsugovs32 Sure thing. K

  • Hi

    Have being following your video posts relating to

    CCSVI.

    I have appointment in Poland in September for CCSVI testing.

    I find your video posts very informative and enlightening.

    Great that you are benefiting from CCSVI.

    Denis

  • @MACGWEEDORE Thanks Denis. Hope all goes well in Poland. Kerri

  • Can you please advise how and with whom you arranged the Doppler test and who performed the angioplasty?

  • @mcilveend Yes - Melbourne Radiology Clinic for the doppler (Victoria Pde) and The Alfred Hospital, Prof Thomson, Head of Vascular Radiology for the Angioplasty. Go for it! K

  • Hi,

    Been a long time, you are looking well and things seem to be going well for you. I hope that everything keeps going well.

    Philip

  • @philruff1 Thanks Philip, things continue to go well. K

  • hi

    it is fantastic !!!!!!

    can you have your name on your t shirt so we can identify you ...

    i aam going to walk on sunday

  • @51amalia Hahaha - I can tell you my number is '69' Go to the tent with the blue signs about CCSVI. If you look for the blue balloons and such you will find us. K

  • HI Kerri. My GP is very supportive in assisting me to access the CCSVI diagnostic process and subsequent treatment. He would very much like to discuss this with other doctors in Australia who have had some first hand experience with this and has asked me to see if I can give him some leads. Can you assist? While I live in the Northern Rivers area of NSW any Australian leads would help a lot.

  • @petesullys Absolutely, I will PM you.

  • Way to go Australia!!!!

  • @BrendaRaven1 Yay us and so hope we can be taken seriously by other MSS around the world.

  • Great Kerri. Thanks, Rick

  • Hi Kerri, just wondering if you received a receipt from the MS Society for a donation to the CCSVI fund with no mention of CCSVI but only mention of helping with payment for personal assistance and equipment for them. Is this normal and because they just haven't changed their receipts yet. Will ring them if I'm the only with this type of receipt in case it has been accidently given to a different area.

    Thanks, Rick.

  • @rickileeway Hi Rick, yeah you get a generic receipt. If you want to check if your donation went through you can click on the team and check through the list of donations until you find your name. If it is not there you can call MS Australia and make sure it has been matched to the correct team and they can move it if needed. K

  • Hi Kerri, Jane 47 living with MS 18years. Your video has just made my day, after the nuero visit I just had. If I have to hear.....there is nothing we can do at your stage, just control your symptons.....but they can't even do that.  I am having my scans this Thursday and can't wait!! I'm knew to YouTube so still trying to get the hang of it. Cheers, Jane

  • @JaneRuggieri Jane, I am so pleased to hear that you are getting the scans. At least then you will know whether you have some relief ahead for at least some of your symptoms. Please let me know how you go. Kerri

  • @kezzcass Thanks Kerri, feels like finally l can have some control of my body.

    Will keep u updated. Jane

  • Way to go Australia! Sure hope Canada follows your lead immediately!

    Thanks so much for sharing this great news.

  • @curmudgeonine Yay - I hope so too :o)

  • Hi Kerri, good job on all your help. I have an appointment on Wed May 26 with my doctor. He is the director of the MS rehab at the University. My GP said she wanted my Neuro to do the referral. It will be interesting to see what he says. Hope you are still feeling better. You look great.

    Christine

  • @christinedavi Thank Christine. Hope all goes well with the referral and it happens easily. I still feel pretty good. Kerri x

  • You've been a busy girl Kerri. Good that Bill's been affected by everyone's passionate and desperate pleas for change. I wonder if it's the MS Society who want to appear reasonable on the 6th by not allowing the wearing of banners etc. ? Lol. I agree that It's a good time for diplomacy though, now that we finally have a foot in the door and Bill has agreed to help us. Lets hope he pathes the way for other CEOs around the world. It's wonderful news and you have been marvellous Kerri. Rick

  • @rickileeway Hi Rick. Yeah, well it is certainly worth it to MS Australia to keep us contained to a tent! But hey, being given a tent and table also gives us credibility I think. Coming out and promising dollars and vocal support is far more valuable to our cause however. I really hope Bill is seen to be an innovative leader in terms of representing PwMS and that other CEOs see merit in following suit. K

  • Done! You have done so much for this cause! words escape my typing!

    Am in the US but my sis put her right foot forward and donated.

    We must work together! NO matter where are? we our in Gods country !

    I wish I could have been a fly on the wall to hear all that took place today! But as you do so well! in reporting I felt I was there! Thank you :) for being the extra voice we all need ! you are so special Kerri !

  • @ThePennygirl You are sweet Susan. Well I felt like I had all my youtube friends in my pocket with me to be honest! For those who have not had opportunity and are too tired to fight for this right now. Thanks to your sis too. I said back in January I am really proud of how the world of MSers are banding together and sharing ideas/resources - all our voices are making a loud noise - even from way downunder haha! Kx

  • Thank you Kerri, for all of your vlogs! I am so envious and want so bad to be able to have this done! I am in the US and here they will do ANYTHING to stop any kind of treatment close to helping cure the effects of MS.  In saying this, I will have to travel to Italy, Canada or AUS. Again, thank you for giving me hope for a real life again!

  • @BrendieRB Yes - I feel extremely fortunate and I guess that is why I am putting back in. It's only right that all 2.5 million of us get a turn I think. I scratch my head about your country and the health system there. I can only hope that pressure from other nations will help speed things up. Kerri

  • The objectives should be immediate treatment for all MS patients wanting it for CCSVI. Money for research does not result in treatment -- it is a delay tactic for maintaining the status quo. The $750,000 objective is plenty.  At least 50% of that money should be going into CCSVI research if there is a serious intent from Bill Younger. You are being used to maintain the status quo.

  • @idsuperstore MS Aust exists to support PwMS, not research. Aust has a separate entity called MS Research Aust to research treatments/cures. It is MSRA who should put resources into CCSVI. Money raised for CCSVI by MSA will go to expanding treatment that is already offered and formal analysis.

  • This is brilliant news, good stuff for everyone.

  • @MrMarkafisher Hey Mark! We have been talking about this for months eh? So good for all MSers - only time and energy to spread the word (because MSers are unlikely to hear it from their Neuros right?) See ya at the walk. Kerri

  • FANTABULOUS!!! Cant wait for the statement from the CEO!! So, how will this new development translate to the neurologists and will they be onboard and easy going with their referrals and are we free to get LIBERATED now or ??? MS Victoria is more onboard and aware than NSW is, I'm so jealous. Also for those of us on DSP pension, isnt it covered by Medicare? Why the fundraising? (just curious, as I'm clueless)

  • @fridayfc Good questions. Neurologists will likely be slow. We as patients can self refer or go via our GPs. CCSVI is not a neurological condition. What is needed for Aussies is the info where to go and what to ask for. Best place to learn all this is on CCSVI-Aust Facebook Group. Medicare covers procedure. Fundraising and MSAust is endorsement of what is already happening & for work on official clinical trial.

  • That's great Kerri! Lead the way Guys! and Dolls!  :)

  • @gekiryudojo Thanks Trev. Hope the wave gains momentum across the globe! Kerri

  • Oh, my dear Kerri!!! THIS IS AWESOME NEWS!!!!!!!!!!! Australia is moving forward so fast and this is simply amazing!!! You are the most amazing activist I know!!!! You are doing and outstanding work and I admire you so much!

    Congratulations, Kerri! You are bringing hope to us and to the citizens of your country!

    Millions of hugs,

    Angela

  • @angelusa73 Angela my friend, it is amazing isn't it. It goes to show what a group of people who have resolve and determination can do to get things done. Also all you need is one sympathetic ear in the right place! Thanks for the hugs - millions back! Kerri x

  • Wahooooooo go MS Society Australia! Gotta love an MS Society for the patients!!

  • @SRainbolt Woot Woot!! That's right. Didn't believe it until I saw Bill write it in black and white for all the world to see on our Facebook group. No going back now Bill too many people have heard it!! ;o) Thanks Sarah you are working hard too I know. Kerri

  • Kerri I AM so excited for you guys. You are an excellent leader. I'll post this on our own facebook site. I think things have just started in Maryland and 3 others so far are getting scanned for CCSVI. :) We are able to find neuro's in our state that will write the script for the test (not my own of course LOL) but there are some that are being convinced to at least allow the test. :) love you! hugs, Judy

  • @donotconcede Thanks Judy.  So pleased things are happening over your way. Isn't it crazy that you need their permission to have a simple test? Things will change I hope and very soon. Kerri

  • So nice to see what diplomacy and finesse can accomplish. Way to go.

  • @gphx Hey thanks Darrin. Just hope we can take it all the way home! More than that - I want to see this happening for MSers in all countries. Kerri

  • thats way awsome go kerri!!!!!!!!!!!!!!

  • @7minibike2 Yay us - it has been a team effort it really has. Everyone joining together in many forums have succeeding in us being heard. I am so pleased to have had preparation meet opportunity! Kerri

  • Great new Kerri! I'm posting this to my Facebook page. :)

  • @thepasture Excellent - thanks so much.  Kerri

  • PS doviedove is my username on youtube but really I am Michele from MS-CCSVI-UK. xxx

  • @Doviedove I know ;o) Just wasn't sure if you just keep to your alias on youtube.  K

  • Good on you Kerri... All of your message is relevant to us in the UK too, I am meeting with the CEO of the MS soc UK next week and would like to send the same message about being the kind of people the MS soc will feel comfortable dealing with. Happy noises, determined messages, smiling with purpose but no mud slinging... :o)))

  • @Doviedove That is so good. Yes - we should have a united, calm approach. Cannot wait to hear how things go next week. Kerri

  • Exciting times.. We in the UK have a rally outside the MS Society head quaters.. BUT we have been invited in to the MS Society for a meeting which will be broadcasted live on the web..

  • @omexmc80 Holy smoke Batman! That is fantastic!! Give us the details of the broadcast and we'll be watching :o) Hope you are keeping rested Omar you have a big few weeks ahead.  Kx

  • Whoa Kerri! Hobnobbing with the big knobs. Will I have to get 'my people to talk to your people' next time we catch up? So proud of you. Mandy.

  • @missalgernon Hey you can always call my mobile chick ;o) xx

  • That is really great news for the 'Land Down Under' I just wish that there was a world-wide commitment from the MS Society's.

    I am a Scot exiled to Belgium and have my CCSVI scan on Tuesday 25th May - my only problem now is trying to curb my enthusiasm to avoid being terribly let down should the treatment work only slightly.

  • @tav15h Hey well it would be a good idea to let your MSS know what is happening here - perhaps it could create some positive pressure??? I hope everything goes well for you on Tuesday, understand about trying to stay realistic about the result - it's the only way I think. At least you will know either way :o)

  • Wow - congratulations! Where is this leading...?

    P.S. yes, I totally get what you mean about anti-antagonism, well said x

  • @lovingfatalist Hey T... well for a full roll out of testing/treatment for all 20,000+ Australian MSers I hope! OK maybe that is over-optimistic... but it's a start. Right now we are just trying to get the word out to MSers and get funding for it to move full steam ahead. Having MS Australia on board will go a long way in getting these two goals achieved. Phew! Kx

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