CCSVI

Nean · Post by **Nean** » Sat May 08, 2010 4:29 am

Hi everyone,
It is 1 month and 8 days since my procedure. I have not experienced any physical improvement so far. My thinking process and short term memory may have improved slightly. It's difficult to tell.
I had the second doppler a week ago but results haven't arrived in the post yet - will keep you posted.
Nean

sneakypuss_01 · Post by **sneakypuss_01** » Sat May 08, 2010 7:20 pm

Hi Gang!

I sent my MRV results to St Vincent's and this is the response I got:

'Thanks for the information. After looking at the results we cannot proceed without an ultrasound study of your jugular veins.
The MRI results are inconclusive and therefore not sufficient evidence.
After the Ultrasound is done and the report sent, we can further assess.'

Can anyone recommend a location in Sydney that does accurate Doppler ultrasounds for CCSVI?

Thanks in advance
Sneaky P

elprado · Post by **elprado** » Sun May 09, 2010 4:43 pm

sneakypuss_01 wrote:Hi Gang!

I sent my MRV results to St Vincent's and this is the response I got:

'Thanks for the information. After looking at the results we cannot proceed without an ultrasound study of your jugular veins.
The MRI results are inconclusive and therefore not sufficient evidence.
After the Ultrasound is done and the report sent, we can further assess.'

Can anyone recommend a location in Sydney that does accurate Doppler ultrasounds for CCSVI?

Thanks in advance
Sneaky P

Check your PM

Downunder · Post by **Downunder** » Mon May 10, 2010 9:47 pm

Just sending my best wishes to a friend who is having his procedure in Sydney tomorrow.

Best of luck, see you on the other side!!
Jennifer

hwebb · Post by **hwebb** » Mon May 10, 2010 10:01 pm

it's great to know there's still some "Aussie Action" going on. Good luck my dear Sydneysider

snails · Post by **snails** » Mon May 10, 2010 11:33 pm

I am pretty new to forums...I had a CCSVI doppler today at Melbourne radiology...both jugulars 50%+ narrowed....now what???

friday_fc · Post by **friday_fc** » Mon May 10, 2010 11:51 pm

So, all the people in Sydney who've had the actual angiogram/angioplasty ballooning - where are their stories/experiences during with Dr B and after ? I've been anxious to read something - unless another thread has opened up and i'm not aware of it?

Cheers

kats · Post by **kats** » Tue May 11, 2010 2:06 am

Hi All,

It has been 41 days since my sons procedure with prof T.
Not much to say in terms of improvements as he has not noticed anything major. Perhaps slight bladder improvement.
Having a doppler test done with Julie next week. Will keep you guys posted of the results.
Perhaps it takes some time for some to see some improvements. We are still hoping that there will be some in the near future.
Happy for all that have had some improvements.
Good Luck to all having their procedures.

Kats

Salvatore24 · Post by **Salvatore24** » Tue May 11, 2010 6:46 am

avantitech & smokey, check your pm's or clear them out.

Opera · Post by **Opera** » Tue May 11, 2010 1:03 pm

Hi Kats

Please check your PM

avantitech · Post by **avantitech** » Wed May 12, 2010 8:02 pm

G'day Folks,

Just an update from my appointment yesterday with PT.

1. I realise that it may appear slow going but this is the way medical research works. We are now looking at July before the results of the 30 patient study will be completed, collated and presented for evaluation to hospital & study stakeholders in order to gain approval and proceed with a further larger and better funded study.

2. The results overall appear positive with many questions left to be answered and therefore warrant further investigation. To quote WS Churchill "this is the end of the beginning" in this part of the world and the proverbial battle will go on until the logical conclusion of quantifying and delivering health benefit outcomes is reached. Hopefully parallel studies interstate and overseas will allow us PwMS to move forward.

3. I am very much aware of the variability in our small patient group's outcomes post procedure and of course would like the research to find explanations and better treatment options. I would like to explore what QOL can be achieved with further increase in my IJV blood outflow rates. Working within the original study as part of the follow up process I'm booked for a second venoplasty in 4 weeks and intend to post updates when appropriate.

4. PT has confirmed there is a need to raise funds to enable ultrasound and MR diagnostics to be conducted in-house specifically to improve ccsvi screening outcomes. I am actively exploring ways to do this in the next 2 months and I know I've got my work cut out but any advice is appreciated. All fundraising receipts must go directly to the hospital.

Cheers,
..Adolfo

P.S. I've got people's messages and will be in touch soon.

hwebb · Post by **hwebb** » Wed May 12, 2010 8:26 pm

Hey adolfo,
I wanna help with the fundraising. There are lots of ideas already explored by our cousins in North America ..such as fundraising lunches, merchandise (tshirts where the profits go to the cause), and straight out donations. We can do this

Wonder how much we need to raise?

kezzcass · Post by **kezzcass** » Wed May 12, 2010 9:46 pm

avantitech wrote:
4. PT has confirmed there is a need to raise funds to enable ultrasound and MR diagnostics to be conducted in-house specifically to improve ccsvi screening outcomes. I am actively exploring ways to do this in the next 2 months and I know I've got my work cut out but any advice is appreciated. All fundraising receipts must go directly to the hospital.

Firstly on Fundraising. This is excellent finally somewhere meaningful we can direct funds. Can we please do a collaborative effort in this regard? There is some already working on a T-shirt to raise awareness of CCSVI for the MS Walks (via Facebook) and also discussing fund raising. It would be good not to have two groups working but rather keep the info flowing so we are not doing double the work. As more info comes to hand about T-shirts will let you know if any of you are interested.

On that note, anyone interested in getting together at the MS Walk in Melbourne pls PM me. We are putting together hopefully some pamphlets to distribute with info about CCSVI and where to get tested etc. The more on board the merrier

On a personal note, saw Prof T today and high fives all around. He said there is no need for me to have another ballooning at this stage as I am not showing a regression in any of my improvements. He said should that occur it would then be time to give it another go and see what happens. Having said that I am going to have an MRV to get a pretty picture of how it all looks in there anyway (probably in a couple of months).

I am encouraged after chatting with the Prof today and hearing his case for continuing to perform the procedure (which is not new nor dangerous as we all know). He is a voice of common sense and reason and no doubt he is convinced there is a link between MS and venous abnormalities.

I am still keeping well and active with nothing really further to report. The only problem I still have is slight foot tingles/numbness. My strength and stamina continue to improve.

Kerri

hwebb · Post by **hwebb** » Wed May 12, 2010 9:50 pm

this is great news Kerri, and great advice on coordinating fundraising efforts. I really should check the ccsvi facebook australia page more often (am an occasional visitor, though regularly check in to TIMS)!

marigoldrobyn · Post by **marigoldrobyn** » Fri May 14, 2010 3:05 am

my son had liberation treatment with prof T on Tuesday and still has slightly sore and swollen neck on both sides although only left jugular vein was ballooned with cutting balloon .Team at hospital were great shall update improvments in a week or so as nothing very obvious as yet

This Is MS Multiple Sclerosis Knowledge & Support Community

CCSVI - Aussie Action!

post procedure

best wishes from Melbourne

had doppler today

Update

offer of manpower

Re: Update

good on you :)

aussie action