CCSVI - Aussie Action!

[hwebb]

Some cool internet resources on Syndey vein specialist

Sydney Skin and Vein clinic:
http://ssvc.test.kayweb.com.au/contact_us

Australian doctor who signed the Consensus Document, which outlines diagnosis and treatment of venous abnormalities (particularly CCSVI):
http://ssvc.test.kayweb.com.au/new_kurosh_parsi

The service they provide for MS patients:
http://ssvc.test.kayweb.com.au/new_neck_venous_studies

[kats]

Hi Everyone,

Today my son has had another venogram.
The veins had remained opened and there was no narrowing found.
Blood flowing was good. No ballooning was required.
It is confusing= as the last doppler test showed stenosis in both jugular veins.
MRV also showed slight narrowing as well.
So the best test to see if there is stenosis/narrowed veins seems to be the gold standard the venogram.

It is weird that there is no stenosis yet there has been no real improvements seen as yet. Does anyone know how long does it take to see some real improvements? could it be months of waiting for some?

Why do some people get almost instant results and others like my son very little?
Is there a chance that he could still see improvements down the track ?
This is our only hope now to wait and see.

Any thoughts on this is very much appreciated.

Kats

[tzootsi]

This whole issue is so new, it's hard to come up with a clear conclusion. I think there is a good chance he will eventually see some improvement, or at least remain stable. Also, from what I've been reading lately, there is a good possibility that OTHER veins could also be involved for some. I believe Zamboni and Sclafani are looking into this now.

[CureOrBust]

Why do some people get almost instant results and others like my son very little?

See Dr Sclafarni's post. He has seen all outcomes, including your sons. Basically its too early for people to totally understand and predict any outcome.
http://www.thisisms.com/ftopicp-117979.html#117979

The veins had remained opened and there was no narrowing found.
Blood flowing was good. No ballooning was required.

This other post by Dr Sclafarni from what he learnt off of Paulo Zamboni's team, may provide some possible hint of an improvement in treatment. Its a good post, and definitely worth a read.
http://www.thisisms.com/ftopicp-117550.html#117550

So now i will do all my catheterization from the left femoral approach, even though I dont like to.

Do you know if it was the left or right for your son?

[CureOrBust]

Some cool internet resources on Syndey vein specialist

I recently tried to get a booking here. They are busy until november when I called. I found out that they only perform scans once every few months, when a Dr is down in Sydney, from Newscastle. I found its a shorter wait if you go directly to the Dr at his Newcastle based practice, if you can make the trip.

[hwebb]

Hey kats...I say keep watching this space. The IR's are further developing their skills as they see more patients. My favourite doctor recently arranged a high resolution MRV for me in his hospital. I already had an MRV, and Doppler...and had done one "gold standard" venogram (had dramatic results after my left jug was ballooned high up.... which quickly restenosed).

However, after my latest MRV I was diagnosed with another stenosis. It is obvious in appearance...if you know where to look. It is in my right jugular low down toward my collarbone. It is not so clear to see when you are viewing me flat (as the x-ray beams view me during a venogram):

http://farm5.static.flickr.com/4057/471 ... 6a64_b.jpg

However, look at me from a side view and a problem is apparent:

http://farm5.static.flickr.com/4056/471 ... 73e428.jpg


BTW - you made a great donation to the Melbourne Fun Run team. Must have been lots of work collecting all that cash at work

Helen

[nico]

hi katz,

the following may well be of interest to other MSers. How is yr son's adrenal gland function? l ask 'cos the adrenal gland's operation is fundamental to the operation of the CNS. l can't tolerate drugs of any sort cos my adrenal gland is cactus. Restring blood flow via CCSVI treatment and taking bio-identical DHEA is slowly helping me, and l've been SPMS for several years now. pm if you're interested in pursuing this!

cheers, nico

[nico]

that should be 'restoring'...sorry!

[Val1964]

Hi everyone,
well I am back in Melb. on the 13th july for another venogram.
val

[Downunder]

Seems like a few of us are having/have had a repeat procedure.

For myself, it was 4 weeks ago, and although I'm not as good as after my first procedure ie my hand isn't as good, I feel as though I'm on a much more even keel than before. I don't feel as if I have bad days right now. My strength is returning, so a little more energy and I'm not so tired these days. Again little steps, but being PPMS this is great news for me!!

There's more and more info out there each day, so hopefully the IR's will understand more about how to help us.

Good luck to everyone having a repeat procedure, we know we are in safe hands.
Jennifer

[CureOrBust]

I got a Phone call from the research assistant on the Teriflunomide study, I was pretty shocked to hear that she had never heard of CCSVI

[hwebb]

email her one of the pamphlet's available on the Facebook CCSV Australia website

[bree]

Thanks to everyone for posting updates, much appreciated.

Andrea

[hwebb]

If you have been reading about May-Thurner syndrome...and are concerned that this can only be picked up during a left-entry venogram..

http://www.facebook.com/pages/CCSVI-in- ... 0796282297

..I discussed this recently with my favourite IR. The advice: this can be detected using a right-entry venogram.

[CureOrBust]

If you have been reading about May-Thurner syndrome...and are concerned that this can only be picked up during a left-entry venogram..

http://www.facebook.com/pages/CCSVI-in- ... 0796282297

..I discussed this recently with my favourite IR. The advice: this can be detected using a right-entry venogram.

I could not see the post you spoke of?

I had a read of Dr Sclafani's original post:

I asked paolo what that was all about and he told me that they were looking for narrowing of the left iliac vein (a congenital narrowing called May thurner syndrome) and then were looking for hypoplasia of the lumbar veins. They also looked for narrowing of the vein of the left kidney. The light went off! That was why they entered from the left side.

So from my take, it's more than checking for May Thurner.