I will be undergoing Onyx embolization tomorrow to block off two blood vessels in my AVM, which is located in my left masseter muscle. I am unclear how long recovery takes after Onyx embolization. For those who went through treatment for AVMs in their face, what was your first week like? Were you able to chew solid foods? What type of pain did you experience?
It took me almost two weeks to get back to normal after I underwent a cerebral angiogram, and I’m fully aware another catheter in the groin plus an embolization procedure is going to be much more painful, so I’m trying to prepare for the inevitable pain in next few weeks (or months?) after this procedure.
I’m 34, female, relatively healthy, and will be getting treatment in the US.
Thanks in advance
My son has treatments on his facial avm and each recovery was so different, ranging from being back to normal the next day to swelling taking 2 months to resolve. He’s been embolized with alcohol and bleomycin but not onyx.
Wishing you a successful treatment tomorrow with a super fast recovery!
Who is doing your treatment in the US?
Welcome Sky. I am a brain AVMer and had gamma knife so not much help experience wise! I just want to wish you the best tomorrow and as you will see, and have seen, our members have a ton of experience to pass along. I hope we can help. Take Care, John.
Thank you, Connie. I will undergo treatment with Dr. Feng at Kaiser Permanente in Los Angeles.
I’m afraid I’m a brain AVM person as well but I had a combined angiogram and PHIL embolization in the back of my head 5 years ago. For my treatment, I was in hospital for a few days (I think 3 nights but could have been 4) and I had two weeks off work as sick leave. When it came to the final week, I had a further week off as holiday just to feel as normal as I could before starting back.
I hope you have a good day today. I’m confident the hospital nurses will look after you beautifully and nobody expects you to be anything other than in need of looking after. Just let them lead you through the day and you’ll be fine.
My wife was in hospital recently and while visiting her, I shared with the ladies in her ward that the way I approach hospital is like I’m in some sort of all inclusive poolside holiday: there’s nothing to do but lie down, it’s always hot in hospital and you get waited on by the nurses very nicely. The food is unremarkable but the looking-after is great! I have to say that the ladies in the ward laughed at my approach but I think they were just as nervous as you as they waited for their procedures.
Have a good day! In fact, have a good few days!
I don’t have a facial AVM but a very large AVM in my left buttock, hip, pelvis. When I get embolizations, yes they are extremely painful and it take me about 2-3 weeks to recover but the most extreme pain only takes about a week to a week and a half to calm down to more milder pain.
Good morning Sky, I hope everything went well with your treatment. Sending speedy healing vibes your way!
Sky, I hope your treatment has been successful and recovery is going better than expected. You’ve been in my thoughts.
I am 1 week post onyx embolization surgery, and although this embolization stopped the eye bleeds, I now have an excruciating burning in my let nostril and sinus cavity. At times the whole left side of my face feels like it’s on fire. My neurologist fears it could be nerve damage from the onyx he used on the AVM during the embolization procedure. He has prescribed Gabapentin, a nasal numbing spray, and some pain medication, which I pick up today.
I’m at my wits end with this! This has taken over my entire life. I feel as though I’m just
spinning and getting NO where. How do y’all cope? I’d like to get another doctor’s opinion on what can be done concerning my AVM. Any suggestions would be Greatly appreciated.
I can’t be much help experience wise as I’m a brain guy, but can pass along a couple things that might be helpful, or not. Firstly, great news on the bleeding being stopped. There are a lot of pain control options out there, the downside being it sometimes takes a bit to figure out what works for each of us. Hopefully the Dr. got it first try, if not I would stay at the Dr. to adjust. We have some pain specialists clinics here in Canada where there are specialists who do only that. That might be an option to try , if the current isn’t meeting the requirements. I sure hope it does and then subsides as your body adjusts. Take Care, John
Gosh @Dunree68 you’re having the toughest time!
I’m no doctor but from reading round here a fair bit, I’d say that the burning sensation isn’t something that’s “usual”, so I’m with the neuro that it may well be nerve damage as a side effect of the operation.
We do have a separate community of facial pain patients and while the source of your facial pain is pretty unique, it may be that the drugs, approaches etc that patients in that community use may help, so feel free to browse there or sign up there as well as here.
Very best wishes,
@Dunree68 I don’t blame you for being at your wits end.
Dr Michael Lawton at Barrow in Phoenix is the top dr in the USA for AVMs and they do remote consults.
He used to be by me at UCSF in San Francisco and I got to his craniotomy work before he left for Arizona.
If I need further embolism or a craniotomy I will be traveling to Phoenix cause my guy retired from Stanford.
I do see the head of pain at Stanford for an unrelated stroke ( 5 blood clots)
Ropivacaine and lidocaine combo shot worked for about a month until i became allergic ( I am just sensitive to medication)
They tried Gabapentin, there is a long term relief version, Lyrica , and another nerve drug. None worked for me.
This was all pre opioid crisis so they handed them out and none worked either on me.
But Ketamine infusions did give me 3 months of complete pain relief.
If done correctly which Stanford doesn’t do it can reset your pain so you get permanent pain relief.
Here is a ketamine facility Directory
Embolizations due some very odd things sometimes especially with onyx and coils. I’ve read several stories were coils moved to a totally different areas and exited the body. I wonder if the onyx is behaving similar.
Little Rock AR, has a vascular anomaly research team. Dr Suen was one of the best but he may be retired now. He was training someone to replace him. Knowing Dr Suen, he is probably still working with avms. He was determined to find better treatments and a cure for AVMs.