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.

http://www.msra.org.au/news-media/news.php

I will be sending my reports and details of the proposed treatment to my Neuro (as I know he does not recommend I have this at present). However, I feel as he is not a vascular specialist he is not the best person to decide this. It is my body so I have the right to choose what to do. Having said that I realise he needs to be aware so he can monitor changes and treatments going forward.

Special thanks to Dr Jim who took the risk to write me a referral and tell me right from the start "Kerri it is time for you to be courageous." I am very grateful for his support. Also the support of my family, friends and all of you in Youtubeland.

Kerri x

Category:

People & Blogs

Tags:

• MS
• Multiple
• Sclerosis
• jugular
• veins
• stenosis
• narrowing
• balloon

[isuru7777]

COULD YOU PLEASE TELL ME WHO WAS THE INTERVENTIONAL RADIOLOGIST WHO DID THE VENOPLASTY?

i AM A DOCTOR WHO WAS DX WITH MS 3 MONTHS AGO.

AT THE MOMMENT I DON`T HAVE TIME TO WRITE MY STORY.

I THINK YOU ARE A REALLY GOOD PERSON SHARING ALL YOUR EXPERIANCES. PLEASE LET ME KNOW IF I CAN ANY HELP TO YOU

[kezzcass]

@isuru7777 I have sent you a private message :)

[carmel2750]

Hi kerrie, I was a bit like you, but i am sad to say i gave up, you have inspired me to start again. i would like to know why you have opted to do it here in Australia instead of overseas wher they seam to have more experience in this procedure.... apart from the cost. why here? every one i have read about has travelled overseas.....

i hope i am not past the point of no return... i am in Sydney.

[kezzcass]

@carmel2750 Hi Carmel, I am glad you are going to start again. The Interventional Radiologist that I see has done many vein angioplasties on MS patients and he is extremely experienced. I am very confident with him. I don't know any Aussies who have travelled overseas for the procedure to be honest. If you check out the Facebook Group (CCSVI-Australia) you will see lots of conversation about different places people have been tested and treated. Good luck. K

[kkkkkkatherine]

Kerri, thanks so much for being ' the Face of MS / CCSVI' ....sharing your astute, articulations regarding this process...Best Blessings to you!

I understand you are going to be on BlogTalkRadio Fri Apr.16 1pm EST

Will definitely try to listen!!!

[kezzcass]

@kkkkkkatherine Thanks Katherine - looking forward to chatting with Omar! Hey if you can send me any questions you have please do!!! Just in case we run out of things to say hahaha. Kerri x

[robert80taylor]

Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube v=jFQr2eqm3Cg. Log on to ccsviclinic. ca for more information.