This Is MS Multiple Sclerosis Knowledge & Support Community

The AAN folks are neuros. We may not like what they have to say. Here's an early example: http://www.medpagetoday.com/MeetingCoverage/AAN/19505

Downunder wrote:Elaine, did you hear for a fact that they are trying to close Prof T down?

Below is what I was told via email today, when I questioned if Prof T would be scheduling treatment if deemed necessary. I have an appointment early to mid may for an initial consult.

I have just spoken with Professor Thomson and he has informed me that he is allowed to meet with the patient's that have already been booked in for a consult but the hospital would like him to stop performing the procedure until after he comes back from his overseas leave so that they can review the cases that he has already done.

They also provided me contact details for the surgeons in Sydney and Adelaide.

hhhmmmmm,

was having an informal chat with a friend tonight. While we were chatting about the "liberating" experiences I've had lately, she reminded me that she is regularly on the radio waves discussing science issues, and found the progress of science surrounding MS to be fascinating. Can't believe I forgot this! I've made small contributions to the program before...this program just slipped my brain-fogged MS mind.

Anyway, we agreed that a story on the vascular nature of MS would be great fodder for a future show. So anyway, I'll let everyone know if this comes about. If it does, it'll be part of the "Einstein A Go-Go" program on RRR, one Sunday 11am-noon (102.7 FM).

hwebb

well I had my veniogram this morning and the right jugular & azagyros veins were good but the left was slightly narrowed and the valve was not good , so he ballooned them. I will have to wait and see what inprovements are to come in the coming weeks. Prof Thomson and tead were fantastic and its as cold as Antartica in Melbourne, there day temp is colder than our night temp at home, damn snot is running down the fce. I will write more when we arrive home tomorrow night, love you guys.... VAL

Folks,
If anyone has not yet seen the presentation here's the quick link:

http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6

The link can be found on the website http://www.nationalmssociety.org/resear ... index.aspx

Click on Recording of the Web forum "CCSVI and what it could mean to people living with MS" — held April 14 with Dr. Paolo Zamboni, Dr. Robert Zivadinov, Dr. Andrew Common and Dr. Aaron Miller.

Highly recommend it - allow 1 hour 39 min to watch completely.

avantitech wrote:Folks,
If anyone has not yet seen the presentation here's the quick link:

http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6

The link can be found on the website http://www.nationalmssociety.org/resear ... index.aspx

Click on Recording of the Web forum "CCSVI and what it could mean to people living with MS" — held April 14 with Dr. Paolo Zamboni, Dr. Robert Zivadinov, Dr. Andrew Common and Dr. Aaron Miller.

Highly recommend it - allow 1 hour 39 min to watch completely.

Thanks ciccio, unfortunately it won't work for me:

"The media file for this presentation could not be found"

Salvatore, the first link works for me on 2 different PC's.
Follow the description in the second part of the posting i.e.:

The link can be found on the website http://www.nationalmssociety.org/resear ... index.aspx

then Click on Recording of the Web forum "CCSVI and what it could mean to people living with MS" — held April 14 with Dr. Paolo Zamboni, Dr. Robert Zivadinov, Dr. Andrew Common and Dr. Aaron Miller.

If it still doesn't work then it may be a browser issue on your PC.

hi dado,

responded to your pm last night but it's still in my outbox - grrrr.. pls check yr messages?

cheers, nico

howdy all,

had my follow-up, post-procedure visit with Prof T today. He is so enthused about continuing to help us, jumped on the daily notes l'd kept for the last 5 weeks and was utterly chuffed at improvements l'd noted.

when l asked if it was true that the hospital had asked him to stop performing angioplasties om MS patients, he appeared totally unfazed, commented that he was rather more senior in the hospital hierarchy than the neuros trying to slow proceedings and said that, based on the results of my second doppler, that he was happy to repeat the angioplasty every 6 months if need be until my right jug remained open. BLESS HIS LITTLE COTTON SOCKS!

the absolute best thing we can do now is provide prof T with the ammunition he needs to present to the hospital upon his return from o/s mid-May. by ammunition, l mean a documented diary/list of improvements you've noticed. only in that way can he present an undeniable and iron-clad case. for those of us with CCSVI and MS, it's the least we can do.

congrats to all who've had the procedure and let's all of us do our little bit to keep pushing for those who haven't YET.

cheers, nico

Thanks all of you for your encouragement. I replied to everyone. Hopefully you recieved these. Opera has mentioned stenosis in cerebral veins. Would this be able to be detected by MRV of the head?

nico wrote:the absolute best thing we can do now is provide prof T with the ammunition he needs to present to the hospital upon his return from o/s mid-May. by ammunition, l mean a documented diary/list of improvements you've noticed. only in that way can he present an undeniable and iron-clad case. for those of us with CCSVI and MS, it's the least we can do.

congrats to all who've had the procedure and let's all of us do our little bit to keep pushing for those who haven't YET.

cheers, nico

Nico - that is brilliant to hear! Just so wonderful! Yes I have been keeping a diary and I see him for my follow up 18th May. My follow up doppler showed my right had renarrowed (one third what it should be) but the left (which was worse) is draining beautifully so overall drainage is still good. I expect the right will need another balloon so was so happy to hear he will do it again!! Yay team! Will do another video next week but just to say I am going from strength to strength as the weeks go by

Kerri

Sorry, the quote thing didn't work!

Kerri said......

Will do another video next week but just to say I am going from strength to strength as the weeks go by

Smokey said!

Really looking forward to the next video. Go Kerri!

Hi everyone. nico i am so glad you asked prof T that ? because he is a blessing to us all. I have been keeping a daily diary myself, my improvements may seem small to some people but are wonderful to me. this is kinda embarrasing but I have had bowel problems for a long time I always have to have something to go,,, well not today , yeah. I slept until 8;00 A.M this morning my brain fog seems to be going away a couple other small improvements and it has only been 3 days since the procedure.
All the Best
Val

That's great news nico, i was wondering if Proff T would be able to re balloon if need be.
I know you mentioned he comes back from os mid May but do you know when he leaves?
Another question do i just wait four weeks then re book appointment with Julie and the Proff?
cheers Elaine

Very happy to hear that those who have already had the procedure are experiencing improvements. Good luck to everybody.

Dado
Pl check your PM