Could someone please tell me the difference between the two? I do not know what onyx is to begin with. I also would like to know what would be the reason to use one over the other. Thanks. Barb
Hi,
Onyx is a type of glue that is used in an embolization. The idea, the doctors tell me, is to immobolize the arteries they can with the glue, so they aren’t in danger of hemorraeging. I had two embolizations for an AVM located near my brain stem. I was down for about three days for each one, but fifty percent of the problem area was filed with onyx. There are a lot of people on this network who have had embolizations so I hope you will be hearing from others soon.
Sorry, I don’t know what an alcohol embo is.
Good luck whatever treatment you choose. And definitely use this network: there are a lot of generous people here with a lot of knowledge.
Mike
Check with Shalon about the alcohol embos. I know that she is receiving them.
Love, Connie
Hey Barb!
Ok, so here is what I know about the two embolic agents.
As said before, Onyx is glue. And a good one. I know that Dave the Face, Steve, and Roland have all had onyx used for facial AVM’s. I know there are brainers that have used it as well, I just can’t think of who off the top of my head. the glue hardens to a spongey like consistency and occludes the vessel. It is used with aneurysms alot (from what I can figure out) since the aneurysm is a little side shoot and not the actual pathway. Occluding it, and blocking does a great job. But glue will not “kill the beast” and will not prevent angiogenesis or canilization from happening if it was going to. I don’t think this is as much a problem for brainers as for us extremity folks where the boundaries and edges of the AVM are less obvious and the malformation tries to proliferate through all available tissue.
So the alcohol (just got back from my 18th alcohol embo) is caustic and actually destroys the endothelial cells that line the vessels. This is the big difference. So when it goes in and scars the tissue, the vessel can’t specifically recoup, can’t go through angiogenesis, can’t canalize, and it is more “curative” where the intent of the onyx is more palliative.
So depending on the long term plan, one may be better than the other. And just because alcohol is more caustic, it may be the reason to choose it or NOT to choose it. There is definitely risk in using the alcohol. It can cause damage. For me, that is a risk I’m willing to take, plus I’m seeing “THE” guy for alcohol embos. Nobody else does it as often or as well as he does. And that isn’t just me talking him up, it’s the truth. Lot’s of docs have “poo-pooed” the use of alcohol because of the risk. And so they haven’t used it enough to become good at it. Practice makes perfect! But following that same line of logic with the risk piece, if the embo’s are just a prelude to an eventual crainiotomy or something, then who care if it is more curative than palliative. Right? It would seem more logical to use the onyx which most docs may feel safer with, cause it only HAS to be palliative until they cut the thing out!!!
I hope this helps. If nothing else maybe leads you in the right direction or helps you compose a list of questions to ask your doctor about your options and why he may feel better with one embolic agent than the other.
Of course, let me know if you have any other questions. I’ll try my best to help or point!
Shalon
Hey Barb, I have the glue. I have an AVM in the left temporal lobe of my brain. I also did not know it was called ONYX …LOL>. I just called it crazy glue! I have had 3 embo’s and a stereotactic radiation. I have had two seizures. The first one is what diagnosed me with my AVM, and my second one was triggered due to not being on anti convulsants. Guess my neuro thought I was clear and good to go and took me off my meds. I have been back on them for two years now and no seizures. I am due for an angiogram NOW, trying to get that scheduled in NYC. Hope this helps you! There is alot to learn!
Hey Barb. No he isn’t in California, but just a quick flight to Denver. It’s about 2.5 hours for me to get there and I stay Wed through Friday/Saturday. I actually feel very lucky to be so close even though it is a bit of a hardship. There are always other people in for treatment the same day, and I’ve seen/met people who traveled in from Mexico, Canada, Portugal, Greece, Iran, etc. From ALL over the world to come see Dr. Yakes. Makes me measily little trip from California seem like no big deal!
Thanks for the compliment on my website. I have some updating to do for it, but I think the important peices are there and as I have time I do try to fill in little things I learn along the way. And this support group keeps me learning everyday!!!
Shalon
Barb vareka said:
Hi, I get it now. Thank you. There is soooo much to learn. Is the doctor in California or are you going out of state for treatments? (nice web site by the way!!) Barb
Shalon said:Hey Barb!
Ok, so here is what I know about the two embolic agents.
As said before, Onyx is glue. And a good one. I know that Dave the Face, Steve, and Roland have all had onyx used for facial AVM’s. I know there are brainers that have used it as well, I just can’t think of who off the top of my head. the glue hardens to a spongey like consistency and occludes the vessel. It is used with aneurysms alot (from what I can figure out) since the aneurysm is a little side shoot and not the actual pathway. Occluding it, and blocking does a great job. But glue will not “kill the beast” and will not prevent angiogenesis or canilization from happening if it was going to. I don’t think this is as much a problem for brainers as for us extremity folks where the boundaries and edges of the AVM are less obvious and the malformation tries to proliferate through all available tissue.
So the alcohol (just got back from my 18th alcohol embo) is caustic and actually destroys the endothelial cells that line the vessels. This is the big difference. So when it goes in and scars the tissue, the vessel can’t specifically recoup, can’t go through angiogenesis, can’t canalize, and it is more “curative” where the intent of the onyx is more palliative.
So depending on the long term plan, one may be better than the other. And just because alcohol is more caustic, it may be the reason to choose it or NOT to choose it. There is definitely risk in using the alcohol. It can cause damage. For me, that is a risk I’m willing to take, plus I’m seeing “THE” guy for alcohol embos. Nobody else does it as often or as well as he does. And that isn’t just me talking him up, it’s the truth. Lot’s of docs have “poo-pooed” the use of alcohol because of the risk. And so they haven’t used it enough to become good at it. Practice makes perfect! But following that same line of logic with the risk piece, if the embo’s are just a prelude to an eventual crainiotomy or something, then who care if it is more curative than palliative. Right? It would seem more logical to use the onyx which most docs may feel safer with, cause it only HAS to be palliative until they cut the thing out!!!
I hope this helps. If nothing else maybe leads you in the right direction or helps you compose a list of questions to ask your doctor about your options and why he may feel better with one embolic agent than the other.
Of course, let me know if you have any other questions. I’ll try my best to help or point!
Shalon
Do you know if Onyx is a permanent fix, or temporary?
Do you know if onyx is a permanent fix or temporary?
barb,
i had 3 lots of onyx embos prior to my surgery…to make it somewhat safer and reduce the blood flow in the avm…it is extreamley effective and from what i have researched the prefered embo material when embolisining brain avms
My daughter, Dylan (2), has had two embos with Onyx. So far everything has gone well with onyx, although, I didn’t know that there was such a thing as an alcohol treatment! It is nice to be able to stay educated because of this site. Also, Shalon, I didn’t realize you were having treatments in Denver. I just knew you were going to a doctor who knew what he was doing and I assumed it was California. Not that we wouldn’t jump to go to Cali if our daughter needed it, but Denver isn’t that far of a drive for us. I will be asking my daughter’s doc if he’s heard of yours and what he thinks about alcohol embos. It’s nice to always hear about other options. Sometimes I wonder if the doctors know about other options too!
Shalon said:
Hey Barb. No he isn’t in California, but just a quick flight to Denver. It’s about 2.5 hours for me to get there and I stay Wed through Friday/Saturday. I actually feel very lucky to be so close even though it is a bit of a hardship. There are always other people in for treatment the same day, and I’ve seen/met people who traveled in from Mexico, Canada, Portugal, Greece, Iran, etc. From ALL over the world to come see Dr. Yakes. Makes me measily little trip from California seem like no big deal!
Thanks for the compliment on my website. I have some updating to do for it, but I think the important peices are there and as I have time I do try to fill in little things I learn along the way. And this support group keeps me learning everyday!!!
Shalon
Barb vareka said:Hi, I get it now. Thank you. There is soooo much to learn. Is the doctor in California or are you going out of state for treatments? (nice web site by the way!!) Barb
Shalon said:Hey Barb!
Ok, so here is what I know about the two embolic agents.
As said before, Onyx is glue. And a good one. I know that Dave the Face, Steve, and Roland have all had onyx used for facial AVM’s. I know there are brainers that have used it as well, I just can’t think of who off the top of my head. the glue hardens to a spongey like consistency and occludes the vessel. It is used with aneurysms alot (from what I can figure out) since the aneurysm is a little side shoot and not the actual pathway. Occluding it, and blocking does a great job. But glue will not “kill the beast” and will not prevent angiogenesis or canilization from happening if it was going to. I don’t think this is as much a problem for brainers as for us extremity folks where the boundaries and edges of the AVM are less obvious and the malformation tries to proliferate through all available tissue.
So the alcohol (just got back from my 18th alcohol embo) is caustic and actually destroys the endothelial cells that line the vessels. This is the big difference. So when it goes in and scars the tissue, the vessel can’t specifically recoup, can’t go through angiogenesis, can’t canalize, and it is more “curative” where the intent of the onyx is more palliative.
So depending on the long term plan, one may be better than the other. And just because alcohol is more caustic, it may be the reason to choose it or NOT to choose it. There is definitely risk in using the alcohol. It can cause damage. For me, that is a risk I’m willing to take, plus I’m seeing “THE” guy for alcohol embos. Nobody else does it as often or as well as he does. And that isn’t just me talking him up, it’s the truth. Lot’s of docs have “poo-pooed” the use of alcohol because of the risk. And so they haven’t used it enough to become good at it. Practice makes perfect! But following that same line of logic with the risk piece, if the embo’s are just a prelude to an eventual crainiotomy or something, then who care if it is more curative than palliative. Right? It would seem more logical to use the onyx which most docs may feel safer with, cause it only HAS to be palliative until they cut the thing out!!!
I hope this helps. If nothing else maybe leads you in the right direction or helps you compose a list of questions to ask your doctor about your options and why he may feel better with one embolic agent than the other.
Of course, let me know if you have any other questions. I’ll try my best to help or point!
Shalon
Michelle Okijiola said:
Do you know if Onyx is a permanent fix, or temporary?
embolisation can obliterate an avm…although it usually takes several embos…but is dependant on the size and blood flow of the avm and arteries invoved…very rearly used as a treatment alone
Onyx just came online in the middle of the last decade so it’s not possible to say whether it’s permanent. The FDA approved it for use with craniotomy or radiation afterward, so that’s something to consider if yours is operable. I think otherwise its a wait-and-see situation. (This is from my research and doctors at Johns Hopkins.)