It has been suggested that I may be a candidate for this…I would like to hear about anyone’s experiences with embolization with onyx, please.
connie,
i had 3 embos with onyx… done a week prior to surgery i cant tell you much about it though because i was in a drug induced coma the whole time…because of the size of my avm they had to keep me in a coma after embos right up till surgery to keep my blood pressure under control to avoid a bleed…so sorry i cant really tell you much about my experience because i dont remember any of it…my family did say it stunk …when they would come and visit me in icu they said the smell was just toxic…i know it does reduce the risk of hemorrage during surgery…i thought after surgery all the onyx would be removed but it is still visable in ct and mri scans
I’ve had 3 embolizations done with the onyx glue and didn’t seem to have any problems. Mine were all done within a rather short span of time, but none of them had any bad side effects that could be placed with the glue. I mean, I got sick from stuff the anesthesiologist used to put me out, but nothing from the actual glue, and it never came undone (although i did have an irrational fear it would).
Yes I have under gone three Embolization procedures with Onyx. My AVM is located in the ocipital Lobe and is approx 5cm insize. Currently I have no side effectices from the procedures
Hi Connie. Lizzie had her embolizations with onyx. As far as brain surgeries go, they were pretty easy, both during the surgeries and to recover from. She had 5 embolizations before her craniotomy. They suggested scheduling the surgeries 2 or more weeks apart, but since we live in Austin, and she was having her surgeries at Stanford, in Palo Alto, CA, we couldn’t see staying out there for THAT long. (As it was, we stayed there for 3 full months while she had the 5 embos, 1 craniotomy and 3 cyber-knife surgeries.) So most of her embos were 1 week apart…a bit tough on the system, and it meant being on steroids almost constantly since they put her on a 9 day taper each surgery. The good news is that the AVM has been obliterated, so the onyx did its job.
I had 5 embolizations with onyx, and I pretty much have no complaints. With the Onyx, that is… however, during one of the Onyx embos, either some Onyx they had injected trailed off and hit mr inner ear, or while they were taking the cath out of my Femoral Artery, the cath accidentally hit it. Either way, I’m now completely, 100% deaf in my right ear. Small price to pay for being alive!
Hi Connie
I don’t know if you had this yet, but all my embos were with onyx. The only side affect was the smell. I couldnt smell it, but everyone else can, and its strong. A smell they say the cant describe. It dosent last long though. Good Luck
My baby Mina did in July at Children’s Hospital, Los Angeles. The Dr. said it was the most amount they had used ever. During the procedure they needed to call the manufacturer to check on the safety factor of using that amount. And the smell after was really strong, many people said was like creamed corn. I think the smell was keeping the baby from sleeping for days but I was thankful for the smell knowing that the procedure had been completed. I can’t even express the way I feel in the proper words but I am very thankful to the Drs. involved and grateful modern medicine is were it is at for my girl.
Thank you all for your advice. I am so happy that the onyx embos worked so well for you! I have been told that I am not a good candidate for the procedure, unfortunately.
Hi Connie, I have had 3 Embolizations now, with Onyx glue, the 1st was a 6 hour procedure, and no side effects from the glue, how ever, the readiation from rhe Xray roadmap caused my hair to fall out on the avm side, a week later, but this did grow back after a month. My hair did not faill out after the 2nd and 3rd embos as they were done in 3 hours, Onyx glue, is a safer option, than actual coiling, as if you have metal coils inserted you can never have an MRI scan done, also the longer they keep you under the scan during the procedure, the more radiation you are exposed to,
Regards Dipen
I have had both and couldn’t tell you if one is better then the other . I havn’t research it. But I can tell you that you can have a MRI after the coils I’ve had 3 after my first coils there made out of a none ferris metal. That means that they will not stick to a magnet. As far as radiation exposer Drs told me that I would have cataract because of it. But I have been exposed to so much that I had to see Radiation Oncologist under state law I almost glow ! 
My 6 year old daughter had an embolization with onyx in June 09. They said the treatment was 90% effective. Afterwards she had temporary facial paralysis and continues to have speech problems. The embolized AVM was treated with gamma knife in Nov 09.
I believe in my daughter’s case that my husband and I made a mistake in agreeing to the embolization procedure and with our other daughter we declined the treatment. For someone else it may be the right choice, I think it depends on each individual case. I do think the onyx is better than traditional glue based on my research.
Hi Christine,
I'm being scheduled for onyx and I wonder why you think it was the wrong choice for your daughter (I see that she has some significant side effects); is that why?
Thanks,
gaahla
Hi Gaahla. I had embolisation with Onyx glue but you can’t compare your case to mine because your brain hasn’t endured the some amount of trauma. I found out about my AVM when I had a brain bleed and a stroke. They didn’t discover my AVM until 2 days later when it showed up on an angiogram (never showed up on MRI). They went in the next day and performed an embolisation. As I understand it an angiogram has low risks but the embolisation carries additional risks. After they did they embolisation, the left side of my face was paralyzed, my left hand was curled up like a claw, and my left eye would roll. I had a very bad brain bleed so I think that was the last straw for my brain. I only spent one week in the hospital and one week in the rehab hospital. When I left the hospital I had full use of my left hand and my eye was normal. I did outpatient speech therapy for months because I had to learn to talk again. My facial paralysis went away with acupuncture but I think it would have gone away without it. I don’t regret having Onyx glue and it was considered a successsful surgery. I had a follow-up angiogram and I was deemed AVf free. It’s been a year and one month since my AVF bleed. I have never had a seizure but seizures are not common with dural AVFs. I hope this is helpful to you.
Wendy,
Wow. That's quite a lot to go through! Thank you for sharing. Sounds like you ultimately are glad for the glue. The risks are much higher for the embolization; you're right. But I'm glad you've recovered so much. It's helpful for me to know that things like that can happen but that they may not be permanent.
Best,
gaahla
Hi Gaahla. I didnt have any choice in the matter because my husband made the decision based on Dr. Recommendations because I was in no condition to make any decisions. I think the Drs chose embolisation because it was the least invasive procedure. I think the procedure was the correct one for me and I am happy I did it. I am on no RX medicines except blood pressure pills.
I believe (and hope) you won’t have any problems because you haven’t had a bleed or a stroke. Your brain hasn’t been subjected to trauma so you are ahead (bad choice of words) of the game. I wish you all the best and I will pray for you when you have the procedure. Keep us posted.