I was wondering if your have the mesh flow diverter (pipeline). I am suppose to have coils and PED but I am also nervous of Plavix and aspirin. Not too sure if the mesh you mentioned is PED - if it is it also needs aspirin forever. Also, I do know the glue is used on AVM.
Campanile said:
Thank you Moltroub for this information. I have read these articles and find them wanting. My interest in Onyx or any aneurysm glue is if it really is a viable alternative to coiling. Are there fewer side effects? Is it less safe or safer? What are the re-operation rates compared to coiling? Does using Onyx eliminate the need for a stent? What medications, if any, are required long term with Onyx? What is the longevity of Onyx? While I know every case is different there should be basic information out there, but it seems impossible to get.
I really don't want to be on aspirin for the rest of my life due to a stent, considering that when I recently took NSAIDs I think I destroyed my stomach lining allowing h pylori to proliferate. I still have not gone for a follow up endoscopy or colonoscopy, because I cannot take any more bad news right now. Equally concerning is plaque forming or catching on the stent.
I also don't want to be one of the 1/3 that needs to have a repeat operation due to coil compaction.
If I did not mind the idea of metal in my brain I would be interested in the new web mesh device, especially if it eliminated the lifetime aspirin issue.
Yeah, I donât love metal in my brain but there it is anywayâŚthanks, aneurysm clips! Not to mention the bolts and screws used to close after surgery. But it all saved my life so I push the bad thoughts aside. Maybe you can call Dr. Ogilvyâs office for more info about glue. Heâs a professor of neuro at Harvard Med School; Director of Brain Aneurysm Institute; director of neurosurgery at Beth Israel Medical Center. Someone there should know and be willing to discuss. www.bidmc.org
Iâm so sorry to hear about everything youâve been through! Who was the doctor/which hospital used the glue for you? Donât give up! Keep getting monitored and repaired and maybe they will stop popping up or docs will figure out whatâs causing it. Best wishes.
Therese J. Mykytyn said:
I had Onyx used on what we thought was the last annie that was located at the bottom of my brain. I have not had any problems. They attempted the to coil the annie and I had a stroke on the table. They scheduled a new appt. 2 weeks later and all is good. A special doctor was brought in for the procedure. Now I am ready to give up it seems I breed them (7) in the last 10 years. Two new ones in the last 3 years.
My surgeon just did a Onyx procedure (he was telling me about it at my recent appointment). It was the first one done at the hospital where I was treated. It is only appropriate for some types, not all. I am coiled twice. Interesting and I plan to look into it more.
I asked my surgeon if I was a candidate for the new WEB device that is in clinical trials at select hospitals around the country. Jefferson Hospital in Philly is supposed to be part of the trial. It sounded like a solution to the problem with coils compacting. He said I was not. However, I think that most of the options out there involve some type of metal or another. I am having the newer stent, the Pipeline Flex, inserted in less than 2 weeks and I'm not crazy about the aspirin therapy either. I'm hoping that eventually I will be able to get down to 1 baby aspirin a day and that I will get the go ahead to go back on some of the supplements that I had been taking that are considered natural blood thinners--Omega fish oil, etc.
Campanile said:
Thank you Moltroub for this information. I have read these articles and find them wanting. My interest in Onyx or any aneurysm glue is if it really is a viable alternative to coiling. Are there fewer side effects? Is it less safe or safer? What are the re-operation rates compared to coiling? Does using Onyx eliminate the need for a stent? What medications, if any, are required long term with Onyx? What is the longevity of Onyx? While I know every case is different there should be basic information out there, but it seems impossible to get.
I really don't want to be on aspirin for the rest of my life due to a stent, considering that when I recently took NSAIDs I think I destroyed my stomach lining allowing h pylori to proliferate. I still have not gone for a follow up endoscopy or colonoscopy, because I cannot take any more bad news right now. Equally concerning is plaque forming or catching on the stent.
I also don't want to be one of the 1/3 that needs to have a repeat operation due to coil compaction.
If I did not mind the idea of metal in my brain I would be interested in the new web mesh device, especially if it eliminated the lifetime aspirin issue.
Dr.Oglivy is the the doctor I saw, who explained that he would use coils to occlude the aneurysm. He mentioned a stent, in a follow up letter, with Plavix and aspirin for six months.
When I researched I found out that stents can collect plaque and most people need to take aspirin for the rest of their lives. Since my maternal grandmother died from atherosclerosis at my current age of 65 I may be predisposed to have/collect arterial plaque. Right now I have no symptoms of the disease, but you have to be far gone before it presents, kind of like a plumbing problem, you donât know you have it until the back up happens.
If I do decide to go forward to coil my ACOM Annie 8mm by 4mm, I would like to optimize my chances of success. Like it might be a good idea to clean out my arteries before and keep them clean afterward.
Thinning the blood IMO is just part of the process.
I already have âheadâ issues, I am so worried that coiling and stenting will cause more. Fortunately, the new dentist I saw suggested I get a disposal night guard for my teeth from Plackers which has eliminated morning headaches.
Jennifer said:
Yeah, I don't love metal in my brain but there it is anyway...thanks, aneurysm clips! Not to mention the bolts and screws used to close after surgery. But it all saved my life so I push the bad thoughts aside. Maybe you can call Dr. Ogilvy's office for more info about glue. He's a professor of neuro at Harvard Med School; Director of Brain Aneurysm Institute; director of neurosurgery at Beth Israel Medical Center. Someone there should know and be willing to discuss. www.bidmc.org
I see. You have some complicating factors. Please let me know if you would like another opinion from my amazing doctor at NYU, who does both surgical methods (clipping) as well as interventional (coils, PEDs, stents, etc.). He is truly amazing and people come from continents away to see him. Iâd be happy to get you his contact info. Best wishes, Jen
Campanile said:
Dr.Oglivy is the the doctor I saw, who explained that he would use coils to occlude the aneurysm. He mentioned a stent, in a follow up letter, with Plavix and aspirin for six months.
When I researched I found out that stents can collect plaque and most people need to take aspirin for the rest of their lives. Since my maternal grandmother died from atherosclerosis at my current age of 65 I may be predisposed to have/collect arterial plaque. Right now I have no symptoms of the disease, but you have to be far gone before it presents, kind of like a plumbing problem, you don't know you have it until the back up happens.
If I do decide to go forward to coil my ACOM Annie 8mm by 4mm, I would like to optimize my chances of success. Like it might be a good idea to clean out my arteries before and keep them clean afterward.
Thinning the blood IMO is just part of the process.
I already have "head" issues, I am so worried that coiling and stenting will cause more. Fortunately, the new dentist I saw suggested I get a disposal night guard for my teeth from Plackers which has eliminated morning headaches.
Jennifer said:
Yeah, I don't love metal in my brain but there it is anyway...thanks, aneurysm clips! Not to mention the bolts and screws used to close after surgery. But it all saved my life so I push the bad thoughts aside. Maybe you can call Dr. Ogilvy's office for more info about glue. He's a professor of neuro at Harvard Med School; Director of Brain Aneurysm Institute; director of neurosurgery at Beth Israel Medical Center. Someone there should know and be willing to discuss. www.bidmc.org
I am so glad your doctors were able to use the glue successfully. It sounds like glue might be used as a back up plan.
I wonder why you are getting more aneurysms and if there is some supplement you could take to prevent them.
Therese J. Mykytyn said:
I had Onyx used on what we thought was the last annie that was located at the bottom of my brain. I have not had any problems. They attempted the to coil the annie and I had a stroke on the table. They scheduled a new appt. 2 weeks later and all is good. A special doctor was brought in for the procedure. Now I am ready to give up it seems I breed them (7) in the last 10 years. Two new ones in the last 3 years.