Search found 93 matches

by smokey
Thu Sep 30, 2010 6:27 pm
Forum: Avonex
Topic: Liberation Treatment
Replies: 3
Views: 2372

Hi Smokey, thanks for the reply. How many years have you been on Avonex? Where did you have your venogram and angioplasty and what has the outcome been. I appreciate any information you are able to give. Thanks again. Hi, I've been injecting Avonex for a year now. The venogram/angioplasty on my lef...
by smokey
Wed Sep 29, 2010 2:50 pm
Forum: Avonex
Topic: Liberation Treatment
Replies: 3
Views: 2372

Re: Liberation Treatment

KrisBCrunch wrote:Hi, is there anyone out there who has had the Liberation Treatment and was taking Avonex. If so, did you stop the Avonex or are you still taking it? Thank you.
Hi KrisBCrunch....I had a venogram and angioplasty in May - continued to use Avonex....Smokey
by smokey
Sat Sep 18, 2010 4:27 pm
Forum: Avonex
Topic: Avonex Cost
Replies: 28
Views: 27210

Hi...in Australia Avonex is $1000AUD per month and I pay $30 for a month's supply. The govt Pharmaceuticals Benefits Scheme pays the rest. Whoops, sorry didnt see that there was already a post about Australian Avonex costs.
by smokey
Thu Sep 09, 2010 3:01 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Post if CCSVI treatment did NOT work for you
Replies: 339
Views: 153944

I had the first angioplasty in May. Lots of improvements - vision, fatigue, and balance. 2 weeks later my vision deteriorated. Fatigue returned. I had a 2nd venogram recently, but my left jugular has a thrombus, and part of the jugular appeared to have 'disappeared'. Just a stump of the ILJ behind m...
by smokey
Wed Sep 08, 2010 6:05 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: left or right jugular constriction?
Replies: 14
Views: 3444

Left. Totally. Right and Azygos fine.
by smokey
Wed Sep 08, 2010 12:30 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Eventually radical surgical treatments for CCSVI?
Replies: 3
Views: 1724

Eventually radical surgical treatments for CCSVI?

I wonder if there might be some more radical treatments than angiolasty...perhaps for some in the future....surgery?

This YouTube was posted a while ago.


by smokey
Tue Sep 07, 2010 10:12 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Jugular sizes
Replies: 7
Views: 2307

Vein grafts/replacement?

Remember this one?

This is a radical solution, but......



Smokey.
by smokey
Sun Sep 05, 2010 8:18 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Why I can't offer specific advice....
Replies: 11
Views: 2204

It's so easy to believe that this will be straightforward, because it sounds straightforward - and when it's not, it's a shock. Confronting. I firmly believe we now have further pieces of the puzzle. My new screensaver - following my IR's advice will be "Hang in There". Getting back into research mo...
by smokey
Sun Sep 05, 2010 3:35 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: How do you know when you have Re-stenosed - i think i have
Replies: 20
Views: 3809

Yep. There are going to be a myriad of different presentations. I agree with Brainteaser, the solutions are going to be equally diverse. Maybe some are not even technically possible as yet. But we are heading in the right direction, and fast, just not as fast as I/we would like.
by smokey
Fri Sep 03, 2010 9:55 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Successful angio - restenosis - repeat angio - problem+++
Replies: 8
Views: 2348

BTW - Yes it was the same doc both times. No, don't think he's given up, but might wait a while for treatments to develop. Yep, thrombus is a blood clot.
by smokey
Fri Sep 03, 2010 9:46 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Successful angio - restenosis - repeat angio - problem+++
Replies: 8
Views: 2348

Hi, thanks for the responses. My right jugular and azygos are fine. All flowing well. The IR was pretty upset about what had happened and tried every which way to access the left jugular, or what he thought was the left jugular. He thinks he might have ballooned a collateral last time, not the jugul...
by smokey
Fri Sep 03, 2010 3:57 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Successful angio - restenosis - repeat angio - problem+++
Replies: 8
Views: 2348

Successful angio - restenosis - repeat angio - problem+++

Hi, I had an venogram and angio in May with 2 stenoses in the left jugular (right and azygos are fine) identified, ballooning and lots of improvements. Restenosis a couple of weeks later. This was followed by a repeat venogram and angio but no ballooning. The original vein, which had been thought to...
by smokey
Fri Aug 27, 2010 3:39 pm
Forum: Avonex
Topic: starting avonex
Replies: 7
Views: 2900

Good news Kiwee.....glad it's working out.
by smokey
Mon Aug 23, 2010 11:46 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CureOrBust gets a venogram & angioplasty
Replies: 14
Views: 2420

Great news. Takes a while to feel the full effects. I havent had pins and needles for a few weeks now......take care and keep us updated.