Thursday January 18th 2018

CCSVI: My Doppler Results and Plans for Treatment

Yesterday I met with a Professor who is expert in cardiovascular and interventional radiology. He reviewed my scans and reports and is recommending a course of action involving inserting a catheter and balloon into the vein to open up the stenosis. I forgot to mention a couple of things. They will be testing the blood in the brain for Hughes Syndrome (to rule out this being the cause of the narrowing). I don’t believe I have Hughes Syndrome as it is not in keeping with my symptoms. Also a strange thing to note, my jugular valve is inverted. Has anyone else who has had the doppler found they have this? Interestingly I was the third MS patient to enter his office that week with narrowed jugular veins. (he has not seen MS patients before with this complaint) so clearly people are starting to hear the research and are presenting for treatment. Also, MS Research Australia released a statement yesterday which in part said “MSRA understands the sentiment of excitement arising from the Buffalo and other studies but urges that people with MS do not proceed to treatment of any identified venous abnormalities until further studies independently validate these findings.” But I ask the question, if I did not have MS and discovered I had a stenosed jugular to the degree mine is… why would I not have this procedure? Surely a blocked jugular is a bad thing whether you have MS or not. www.msra.org.au I will be sending my reports and details of the proposed treatment to my Neuro (as I

Posted by Harris Luis

25 Comments for “CCSVI: My Doppler Results and Plans for Treatment”

  • kezzcass says:

    Thanks Mel xx

  • harveysmummy says:

    Good luck and much love to you today Kerri, I am thinking of you

    xx Mel xx

  • nicv11ita says:

    Good luck today!!!

  • kezzcass says:

    Aw shucks! Not sure about amazing but ‘a dog with a bone’ and ‘ taking the bull by the horns’ are two phrases I have heard a bit lately! (also I reckon pain in the bum is said behind my back!) haha

    Thanks for your encouragement. I just hope I have good news to report next week! Kerrix

  • nicv11ita says:

    You’re amazing! I’m really looking forward to hearing how you’re doing after the procedure.

    I’m hopeful for u and wish u the very best!

  • kezzcass says:

    Hi Diana, I have just connected with your friend in Sydney. I am happy to help anyone in anyway the more who know the better. Thanks for your kind words. Kerri

  • dianagordon says:

    Hi Kerri, I’ve been watching your videos and I am so happy for you!! I’m just waiting for the phone call to tell me when I’m to go get wired, too. Any day, now.

    I have spoken to someone today, that had never heard of CCSVI before. She’s from OZ, too, so if you could “friend” me, I can put you in touch with her. She’s only 25 years old, too. 🙁

    I’m Diana Gordon. Congratulations!!! Wishing you all the best.

  • xMIKEBROWN30x says:

    Great news Kerri. I’m going to call and organise the doppler for myself today, is there any chance you could name drop the Professor? My email address is m i k e b r o w n 3 0 @ l i v e . c o m . a u (no spaces obviously)

  • kezzcass says:

    Oh wow – that is great, perhaps you can get the scan done too while you are here?? I will message you. K

  • kezzcass says:

    Thanks Christine – will keep in touch. Kerri

  • christinedavi says:

    very interesting and I’m looking forword to hear how you feel after the procedure. Wishing you well.
    Christine

  • eclipsedeyes says:

    @kezzcass Hi! I’ll actually be in Melbourne in a couple of weeks (well early March), I’ll be pretty busy with some work/phd stuff but if you’re interested in meeting up to chat about things let me know, can definitely find time. Just send me a message if you would like to! (I’m doing very well mostly, though not coping with the heat too well at the moment)

  • kezzcass says:

    Hi Susan – yes, crazy-fast! Just trying to catch my breath! Oh you tried vegemite? – yeah living on the edge!! hahaha Glad you liked it. Thanks for your prayers too. Kerri x

  • kezzcass says:

    Thanks Jamie. Ok so perhaps I am not so quietly hopeful (seems I have been loudly hopeful!) hahaha But hope nonetheless! Which is what we need. Kerri

  • kezzcass says:

    Hey there, long time no speak! So nice to hear from you. I understand what you are saying totally, and if I didn’t have a strange pressure feeling in the back left side of my head I may not have been so interested. Took me a little to warm up to the idea. Now I am looking forward to judging it fully for myself! Hope you’ve been keeping well. Kerri

  • ThePennygirl says:

    WOW Kerri,
    Things are moving so fast for you!
    Thank you for keeping the updates!

    PS did try the veggiemite LOL different but I liked it 🙂 LOL
    Prayers are with you,
    Susan

  • mackierojo says:

    WTG Kerri we are with you for support. the powers to be around the world are following with you as well. Thank you for keeping us updated as we are all being quietly hopeful.

    Very Well said Kerri!!..

  • eclipsedeyes says:

    Interesting especially what you said about the pressure, because before I was diagnosed with MS they gave me a CERETEC scan (something that measures diffusion of blood in the brain) to make sure I hadn’t had a stroke, and on my results it said something about increased pressure in the central vein (unknown cause). I am definitely hopeful that this turns out to be the answer for many of us, and so glad that you have something else to try! Good luck with your surgery and please keep us posted!

  • eclipsedeyes says:

    Hi Kerri! Good on you for pursuing treatment for this. I have to be honest and I’ve been wary about CCSVI because of the rhetoric about it, people using words like “liberation procedure” and “the big idea” and so forth before it’s been proven just sets off alarm bells (perhaps because both my parents are scientists and raised me to be sceptical about this kind of language use!) but this is very interesting.

  • kezzcass says:

    Not crazy at all. I was so relieved to hear that I had this, mainly because it was treatable! You will hear from me as soon as I have had the procedure. :o) Kerri

  • SHIRLEYRENSHAW says:

    How crazy is this “I want to have this peoblem” And we all do!!!! All the very best and looking forward to future posts.

  • kezzcass says:

    I know! This is insane. But I tell you, if this helps me I won’t stop until everyone has a go! Yes it has been too easy so far I keep pinching myself (I just want to get through the next three weeks as quick as poss). Thanks Laura – you’re always a pal! Kerri xx

  • dmplaura says:

    Goosebumps!!! My gosh girl, so much excitement! I’m thrilled for you! This has gone so quickly for you, I’m so happy!!!

    Keep up the great updates. Sounds like you have some very competent folks, and good luck with your surgery! You’re right about medications being worse than this surgery!

  • kezzcass says:

    Thanks Harmony. It is exciting. Keep well, Kerri x

  • kezzcass says:

    Thanks – I feel like it is all OUR story so how could I keep it to myself? I will certainly let you know how it goes. Kerri


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