Did anyone else realise that Onyx is not been approved or tested for long term treatment only for use prior to surgery I was quite surprised as so many offer this as a possible cure if 100 percent successful I wonder how long it would last not sure how long this has been out for and whether re treatment is possible in years to come should the vessell open up again
Yes, Daven, and much of the hype about Onyx comes from... the manufacturer. See this article that Greg K posted in an earlier discussion: http://www.ajnr.org/content/30/1/107.full
The Onyx debate is just part of a larger argument about how cautious do we need to be when treatments are new. Someone has to be the pioneer, or we never can find out how effective Onyx is in the long term.
FA approval for Onyx's use in cerebral AVMs came in 2005 -- http://www.docguide.com/fda-approves-onyx-liquid-embolic-system-treatment-brain-vascular-disorder
I hope this helps!
Thanks wonder who is the longest person on here that has had it done I would assume if it lasted say 10 years they could just redo it anyway I would of thought if needed what I have read so far seems promising I have a DAVF which thrombosed without treatment which is very rare and been lucky but should it open up again onyx is next best solution for DAVF but never said it wouldn’t last if successful more said be a permanent cure but I hope my Davf remains closed off naturally obviously best outcome have not read anywhere else that this has happened to before.
If you run a search on "Onyx" here, I'll bet you can find someone who had Onyx back in the early days. Thrombosing without treatment is great -- I hope that's the end of the story for you. Best wishes!
Many thanks shame not more common not found anyone else yet that had same result only found out whilst I was under GA to have the onyx done I woke up and they said have great news it spontaneously thrombosed itself when doing angiogram and glue not needed they say only slim chance it would reopen still having headaches though and depressed with fear I suppose I should be really happy but still so worried but know I been very lucky thank god everyday all takes time I guess to get over the trauma
Here's another case: http://www.avmsurvivors.org/profile/hch
Look at the Feb 22 comment.
Here are a couple more: http://www.avmsurvivors.org/profile/CaitlinKretschmar and
http://www.avmsurvivors.org/profile/DBJ
I can well believe it takes time to get over the trauma. Is there a plan for monitoring? If you knew you would have a scan in a year, then perhaps you could shelve the worries and tell yourself, I'll just wait for the scan...
Many thanks
In my experience Onyx is not 100% succesful.
I had an embolisation performed on my avm in about the year 2000 using Onyx, and it wasn't actually succesful, as I had an anaphylactic allergic reaction and they had to abort the procedure.
They said that the allergic reaction could have been fatal, but the best place to have such a reaction is when you're on a table surrounded by a medical team with all the resources (respirators, steroids and pyriton) close at hand....
Anyway, they said that the solvent in Onyx is basically the same stuff as dry-cleaning fluid and they think that was the cause of the allergic reaction.
However, the glue component is apparently related to superglue, and so subsequent embolisations that were done on me used 'glu-bran' that sets in a few seconds but was described to me as 'sterile super glue'.
Hi Daven! I hadn't realized this and I was treated with Onyx via my emobilization back in Feb of 2011 when finding out about my AVM after surviving a cerebral hemmorhage. After spending almost a month in the hospital, I then had CyberKnife treatment (stereotactic radiation) for the residual to completely zap my AVM and was rendered AVM-FREE in May of this year. I will be definately doing more research on this now as this now is concerning me a bit.
Thank you for the heads up on this!
Michele
Hi sure you be fine you had gamma knife too but yeah interesting to know though guess onyx not been around long enough to tell
Take care
Hello Daven
I did not know this information, I had an embolism in Jan 2012 for a complex fistula where they used both medical glue and onyx. I did hear some popping and noises for a few months but the last two months I have not heard anything. I had mine at Stanford with Dr.Marks who told us it was an art form to decide what to use. I had a really bad experience and they wanted to go back in two months later but my head pain was horrible. So I told them I wanted to wait a year so I could go back to work since my husband had to quit his job to take care of me ( I had a rare stroke first and then the fistula came six months later)
Anyway I just had an MRA and MRI which should no more brain damage and my blood flow was okay so he said no angiogram...very happy.
I hope you are feeling better. It was a long road for me and I have a pain neuro who is doing botox shots to my head to help with the pain.
Good Luck
Angela