Onyx procedure experience

I am undergoing the Onyx surgery in a few days and would love to hear from those who’ve experienced this procedure. What did you “wake up” to? How did you feel in the days, weeks after?
I’m terrified of course so any feedback is helpful!
Thank you

Hello I had both medical glue and onyx and I had a really bad headache that lasted about two months but I think it was due to that I had a massive stroke a few months before they found my DAVF and it was complex and my angiogram and embolism took 8 hrs
I did hear some popping for about 5 days after but the whooshing stopped right away
Good luck and let us know how it goes
Have you had the angiogram?
Angela

I had Onyx 4 days ago. 5 hours under anesthesia to treat 3 extensive scalp and face AVFs. I was under anesthesia from the moment they wheeled me in to do the Angiogram until they were totally done and catheters were removed. I woke up loopy but ok, pain meds @ hospital helped with post-op swelling and pain. (I was pre-medicated with benydril and methylprednisolone because of adverse reaction to Iodine contrast during a CT-A I had weeks earlier) The side of my face and head where the AVF's were at was swollen yet mostly numb when I woke up. Looked swollen, second day was most swollen but not too painful (I took a single dose of tylenol and tramadol after - more for the back pain due to laying still for so many hours!). I went home after one night stay at hospital. 3 days post-op I looked and felt 90% back to normal except for still feeling groggy from anestheia (or from the 59 minutes of fluoroscopy radiation). Today is day 4 and I still do feel a little itty bit of pain/fullness around my ear where the fistulas were and tired, but I am definitely better before (no more bruit and fullness is greatly reduced).

On the vein across my temple, I can feel the Onyx with my finger in the vein, it feels like a ball or a pimple under the skin (I have to REALLY search for it to see it). That particular spot is a bit painful to the touch so I'm avoiding it. The areas on my scalp where the Onyx is at feels just barely slightly raised, and hard to the touch (like theres flat stones in the arteries) but you can't see it. They look pretty normal as of now, just slightly darkened arteries. I'm not even going to bother trying to cover up the face arteries with foundation or makeup. It's not that bad, and frankly I don't care if it's noticeable! I have bigger fish to fry!

The Onyx gives off a smell the first 1-2 days. It's odd, possibly offensive to those who are sensitive, but it didn't bother me or my family. It's a very specific smell, like chemical/rubbing alcohol/plastic smell. Surgeon said the smell comes out through the lungs. He also said from the fluoroscopy radiation (the imaging) that the areas that were treated will appear sunburned (temporarily) and the hair will fall out (temporarily) in a few weeks. I am new to Onyx and hoping to hear from others about it.

Hello Emmy
Sounds like you are doing great! I too have a bad reaction to Iodine.
I did not smell the Onyx but my first angio/embolism was really painful and I was in bed for 2 months. Mine was really complex and I was under for 7 hrs and had a stroke-
My hair did fall out mostly where my occipital lobes are - I took turmeric and it really helped it grow back I have always had thick hair- I just had another angio in May and my fistula sealed itself somehow. So no need for more onyx but still had the Iodine and radiation. Had some hair loss but not as bad as the first time.
Just drink lots of water and dont push yourself if you are tired rest etc. Some people on here have had allergic reactions to medical glue but I have not heard of anyone having a bad reaction to onyx.

So glad you are doing well! About the sunburn part I dont know cause mine is behind my ear but it did feel sore and like someone was pulling my hair constantly

Keep us updated on how you are doing!
Hugs
Angela

I had my emobolization with Onyx twice. The first time, two weeks after they found my AVM and then a day before my crainotomy. There is nothing to worry about - you are under general anesthesia and then you wake up after the procedure just groggy, tired but alert because of all the pain meds. I had some imbalance and weakness on my right side the first time (didn’t know where my arm or foot was in space) but it went back to normal after 2 days. I was back to work the following week.
My second embolization was the day before my crainotomy but I remember waking up like I was just in a deep sleep and again, just a little hyper due to the pain meds but was able to fall asleep right away for my surgery the next day. Good luck!

Hi pstof, I had 2 craniotomies so cannot really comment on this, but thought it would be nice to help you as I did a search for Onyx and you can browse the results by clicking on the link below :

http://www.avmsurvivors.org/main/search/search?q=Onyx

Thanks Martin.

I had onyx in March. I was “under” for the procedure and woke up in recovery to a severe headache and tenderness on the left side. My AVF was just left and above center at the back of my head above the cerebellum. It was a dural AVF. I had headaches for about 2 weeks afterwards that were controlled by pain meds I had to sleep at a 45 degree angle for 2 weeks after in case there might be any drainage. This was to prevent any possibility of stroke.



I spent one night in ICU and one night in a regular room If your doctor recommends a followup I would totally do it. Or, ask about one. After my followup the dr saw that my AVF was coming back at about 20% The onyx was still there and holding So, I had a craniotomy in July to totally remove it.



Good luck! I totally trusted my surgeons so was not worried. I was lucky to have the best of the best at Emory.

Hey Bon!

Was this Emory in Atlanta? I had my surgery there in December and haven't seen surgeon or any other doc since Jan.(2015). I am online now looking for a neurologist just for a checkup and to talk about some of the things I have experienced since surgery. Neurosurgeon said he didn't need to see me again but I want a neurologist just to check in.

Yes! Dr Frank Tong did the Onyx procedure and a followup 7 weeks later. Since it was starting to come back, he sent me to Dr Barrow for the craniotomy.

I would want to go back to the surgeon, especially with your experiencing something since the.

My neurologist is Dr Keith Sanders at Atlanta Neurology (atlantaneurology.net). I really liked him and he was very thorough and was the one who referred me to Dr Barrow. There are other neurologists in that practice too