CCSVI - Aussie Action!

Downunder · Post by **Downunder** » Mon May 03, 2010 4:54 pm

How is everyone post-procedure? Nean, Elaine, Val?

Unfortunately, I am slowly heading backwards. My hand is not opening out fully and my headaches are back to their old pattern. Hey ho!! Hopefully Prof T will do a second procedure and I'll regain everything again!!

Keep well everyone.
Jennifer

muse · Post by **muse** » Mon May 03, 2010 5:35 pm

Hi@, sorry for being off topic but you are the only MSers I “know” in down under. At the moment I’m preparing to lay a complaint at the Human Rights Commission of NZ to fight for our rights and against further discriminations of disabled human beings like you and me. http://www.un.org/disabilities/default.asp?id=285
For that reason I need some more facts & figures. Please, can anyone tell me how costly the CRAB +T drugs are in Australia & New Zealand?
Thanks a lot!
Arne
http://www.csvi-ms.net/en
muse@csvi-ms.net

kezzcass · Post by **kezzcass** » Tue May 04, 2010 2:46 am

Hi friends,

Here is link to MS Australia's latest statement on CCSVI. It is probably what we expected to hear.

http://www.mssociety.org.au/documents/CCSVIandMS.pdf

Kerri

kezzcass · Post by **kezzcass** » Tue May 04, 2010 2:54 am

muse wrote:For that reason I need some more facts & figures. Please, can anyone tell me how costly the CRAB +T drugs are in Australia & New Zealand?

I am on Tysabri - about A$35,000 pa. I was on Betaferon previously which I believe was around A$15,000 pa.

sneakypuss_01 · Post by **sneakypuss_01** » Tue May 04, 2010 3:35 am

kezzcass wrote:Hi everyone,

Please see my latest video update 7 weeks post procedure (link below). I saw my Neuro yesterday and he told me he has never seen me so well.

I see the Prof in three weeks for a follow up, after my doppler ultrasound I am aware that I have some renarrowing in the right. Overall my bloodflow appeared good and I haven't gone backwards in my improvements. I am still extremely happy I have had the procedure.

Hope everyone is doing well

Hey Kezz!

I was just wondering, did you contiune with any CRAB drugs or Tysabri during this procedure?

CureOrBust · Post by **CureOrBust** » Tue May 04, 2010 3:45 am

I got my results from Castlereagh Imaging at Edgecliff today. The scans were performed almost 8 weeks ago, so its been a bit of a wait...

There were no obvious issues found. The Azygous Vein was not checked, again. It would appear that imaging the Azygous is a bit of an issue. The only "suspicious" thing they found was that for the jugulars, the "right side is a dominant drainage". And that "The venous confluence shows some filling defects due to arachnoid granulation. The right transverse sinus is the dominant sinus and the left is a little thinned."

Hopefully when I see the doc, he will see enough reason to investigate further with a venogram.

CureOrBust · Post by **CureOrBust** » Tue May 04, 2010 3:47 am

Does anyone know if the Dr in Sydney has an Ultrasound radiographer he can send people to?

kezzcass · Post by **kezzcass** » Tue May 04, 2010 2:35 pm

sneakypuss_01 wrote: Hey Kezz!

I was just wondering, did you contiune with any CRAB drugs or Tysabri during this procedure?

I am still on Tysabri with much trepidation! I am taking Dr Zamboni's advice at the moment to stay on. Having said that I do not intend on being a long term user of it. I did do a video on this last week:

This should answer your question

Kerri

avantitech · Post by **avantitech** » Tue May 04, 2010 5:41 pm

G'day Folks,

I've just a terrific time in the lead up to and during the wedding of my daughter, and can report only positives for post procedure outcomes compared to pre-op.

Better than preop but less than Post Op + 15 days:
1. Urgency and Bladder control
2. Short term Memory, Thinking speed and conversation
3. Balance & coordination
4. Muscle spasm, fasciculations & tingling in right leg & foot
5. Voice depth & strength, swallowing

Retained at same level as Post Op + 15 days or better:
1. Relief from fatigue, almost non existent.
2. Walking straighter, and
3. Improvement in right foot drop
4. Physical Activity & Muscle Strength in arms and particularly right leg.
5. Heat tolerance as in hot showers and in warm air conditioned rooms.

My post op follow up appointment with PT is 12th May and I will discuss a second venoplasty procedure to further improve blood flow through IJV's.

Thank you to all my fellow aussie venoplasters, members and contributors who have made such a difference to each other's lives. No doubt many of use will continue this advocacy struggle until ccsvi diagnosis and treatment become standard medical practice.

Regards,
..Adolfo

elprado · Post by **elprado** » Tue May 04, 2010 7:36 pm

CureOrBust wrote:Does anyone know if the Dr in Sydney has an Ultrasound radiographer he can send people to?

Check your PM

Opera · Post by **Opera** » Wed May 05, 2010 3:40 am

Adolfo

It is good to hear from you and of your positive results.

All the best

avantitech · Post by **avantitech** » Wed May 05, 2010 11:45 pm

Thanks George
...how are you going?
Is the situation in Sydney improving?

Folks I've added point 5 to my previous post re: I'd forgotten voice and memory

Kerri..check your PM

Cheers

kezzcass · Post by **kezzcass** » Thu May 06, 2010 2:26 am

avantitech wrote:Kerri..check your PM

Cheers

Hi Adolfo,

Thanks, got your PM. I am trying to send you a reply but it won't send - is your inbox full? Kerri

Val1964 · Post by **Val1964** » Fri May 07, 2010 6:16 pm

Hi Everyone,
I thought I would let everyone know all my symptoms have returned. My Gp swears my feeling good for 18 days after the procedure was just the way M.S acts. Noway I felt better than I have in years. Blesebo don't think so
I hope everyone else is doing good.
Best wishes
Val

Opera · Post by **Opera** » Fri May 07, 2010 7:45 pm

Val

Check your PM

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