CCSVI - Aussie Action!

CureOrBust · Post by **CureOrBust** » Fri Jan 15, 2010 3:53 am

Well, that was kinda "on topic". You know, space cakes and all that...

CureOrBust · Post by **CureOrBust** » Fri Jan 15, 2010 4:17 pm

hwebb wrote:yes - looks like my comment was censored out of the HeraldSun. Darn.

Looking at the dates/times on the posts, it may simply be that the replies are behind.

Brainteaser · Post by **Brainteaser** » Fri Jan 15, 2010 5:25 pm

hwebb · Post by **hwebb** » Fri Jan 15, 2010 8:23 pm

my philosophy is that I'm getting as much info about my veins as I can ...and will then decide whether to pursue a surgical option. Just having confirmation through Doppler that it's my left internal jugular causing the problem has given me enough info to modify my sleep position (now dead straight...definitely no bent neck...especially no bending left..use a travel pillow to prevent my head flopping around...and using inclined bed therapy). The result has been that I'm not waking up with numb arms through the night any more. Not a bad result for applying a little lifestyle change using the info I've gathered so far about my veins.

MS Australia urges Aussies to not get ccsvi analytics done yet....but these are non-invasive techniques would will provide info to improve the quality of life for PwMS.

Knowledge is power!

CureOrBust · Post by **CureOrBust** » Sat Jan 16, 2010 4:16 am

hwebb wrote:MS Australia urges Aussies to not get ccsvi analytics done yet....but these are non-invasive techniques would will provide info to improve the quality of life for PwMS.

I surprisingly received a similar comment from someone from MS Australia's research arm. They appear to assume that once you find out that there is a problem, you will automatically be flying out of the country to get it treated (remembering there is currently only a small published study showing benefit by treatment). He did not seem to understand, that yes a diagnosis would place me in a position where that choice would need to be made, however, I would like that choice to be available / known to me. Thats the choice I am making now.

hwebb · Post by **hwebb** » Sat Jan 16, 2010 2:34 pm

the scary thing is that MS Australia has that advice on their website (I complained to them as some of there advice is factually incorrect, and downright dangerous).

I guess at least MS Australia are acknowledging the existence of ccsvi on their website now.

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

Reckon they realised they were starting to look rather foolish as so many lay-people knew about ccsvi.

With mention of ccsvi on the MS Australa website, at least people will start to google it, read all about it, and make there own decisions.

hwebb

sneakypuss_01 · Post by **sneakypuss_01** » Sun Jan 17, 2010 7:52 pm

Greetings from NSW

I just had a Doppler ultrasound done at Hunter Imaging and it came back negative....is there a possibility it could be wrong?

I am seeing my neurosurgeon for an unrelated matter in February, and I was wondering if I should be asking him for an MRI/MRV? Or a referral to a vascular surgeon?

Thanks
SP

elaine · Post by **elaine** » Sun Jan 17, 2010 7:58 pm

speakypuss this is what has me worried, i have my Doppler booked for tommorow and have been stressed to the max wondering if they are going to find anything or not.
elaine

leetz · Post by **leetz** » Sun Jan 17, 2010 8:26 pm

please listen to me...if they say NO...GET 2ND OPINION!!!!that happened to me and sure enough when the right specialist saw my MRV...he immediately found stenosis...veins people...not neuro's...

sneakypuss_01 · Post by **sneakypuss_01** » Sun Jan 17, 2010 10:35 pm

leetz wrote:please listen to me...if they say NO...GET 2ND OPINION!!!!that happened to me and sure enough when the right specialist saw my MRV...he immediately found stenosis...veins people...not neuro's...

Hi Leetz

Thanks for the input. I will definitely ask my neurosurgeon (who did back surgery on me) if he knows any good vascular surgeons up to the challenge in Newcastle or even Sydney if I have too. I don't see him until Feb 3rd, but I will be sure to keep you posted.

Regards
SP

hwebb · Post by **hwebb** » Mon Jan 18, 2010 8:52 pm

OK ...took my own advice and emailed all the health-care providers I've been dealing with about the ccsvi grant money which is up for grabs

MS society in the USA is handing out ccsvi grant money to INTERNATIONAL researchers !!! That includes Aussies

"UPDATE: Next Steps In Pursuing CCSVI (Venous Insufficiency) Research in MS – Letters of Intent Received from International Request for Research Applications -- Full Grant Applications Will Be Submitted by February 9"

Further details:
http://www.nationalmssociety.org/news/n ... x?nid=2206

Let your neurologists, radiologists, vascular surgeons...and other interested scientists know!

hwebb

Am delighted to say that the very switched on sonographer Dr Julie Gregg (from Melbourne) is applying for some of this grant money (whoo-hoo).

I wish Julie luck with her ongoing research.

She has left her personal email address with me, and has said she's happy for MS-ers to have it. Not sure if it's appropriate to actually paste it on this forum, but if you need it ....just PM me. Else, she can be contacted at Melbourne Radiology Clinic.

hwebb

elaine · Post by **elaine** » Mon Jan 18, 2010 11:35 pm

hwebb
good on you, i saw Dr Julie Gregg today she is lovely, she said that they are waiting on the softwear for their MRV, but i was on such a high that i didn't even ask how long she thought that would be.
elaine

kats · Post by **kats** » Tue Jan 19, 2010 4:22 am

well done guys! keep us posted with any news re test results and when the other test can be done by Julie.

elaine · Post by **elaine** » Tue Jan 19, 2010 5:25 pm

i got my results today but not sure what it all means, hopefuly someone here can help.
Stenosis:no
Aneuysm:no
Reflux:no
conclusion
1. Low area of the left internal jugular vein demonstrated on supine and erect position with low flow in the supine position.
2. Low vertebral dooplers in the supine and errect position, most prominent on the left side when compared to the right.
3. Mild thickening valve on the left internal jugular vein.
4. No signigicant reflux.
what i don't get, if stenosis is no and reflux is no do i have ccsvi?

avantitech · Post by **avantitech** » Tue Jan 19, 2010 9:19 pm

Elaine, please don't worry about this inconclusive report.

The limitation of this scan was that it only examined your accessible neck area whereas a very common location for stenoses & reflux is higher up above your jaw line e.g. high jugular.

In order to detect blood flow issues above the neck a different probe & technique is needed i.e. Trans-Cranial.

I've enquired about this before and was told that there were only a couple of transcranial probes available in Melb. and in their opinion not reliable....we need to locate a radiology outfit that either has or is willing to invest in a TC probe...if not in Melb. what about Sydney?

Elaine is your MS clinically definite and are symptoms suggesting more relapsing remitting or a progressive form?

This Is MS Multiple Sclerosis Knowledge & Support Community

CCSVI - Aussie Action!

Re: I've been censored!

knowledge is power

Re: knowledge is power

at least MS Australia acknowledges ccsvi

please

Re: please

good to see some ambition