I am new here, so just wanted to introduce myself and share about my AVM journey so far. My AVM was first discovered by ENT. I was having trouble with tinnitus, ringing in my left ear, and pulsatile tinnitus, dizziness, and some loss of hearing. The AVM showed up on MIR and was referred to neurologist for further evaluation and was then referred to the neurointerventional radiologist on the team. I had the embolization of Lt Anterior condylar AVM using Onyx -18 March 2025. They said it was a successful embolization with total occlusion of the Lt Anterior Condylar dural malformation using 1.4ml of Onyx 18. I was a “happy camper” when I left the hospital. The pulsatile tinnitus was gone and no more dizziness. A few weeks after I had a hearing test and hearing had improved. There were some wearied things showing up that I did not have before the intervention, like salty taste in my mouth, burning feeling on my tongue, a feeling of something stuck in my throat and problems with my voice. Doctors kept telling me it was irritated nerves and just give it time. Went back to my ENT, she scoped my throat down to the voice box and found nothing wrong but did refer me for speech therapy because I was having problem with my voice. She said she was going to agree with the neurointerventional radiologist for now. June 2025 had MRI done that showed no gross residual malformation identified. The symptoms still existed but were improving. September 2025 had my six month follow-up angiogram. This angiogram showed a sizable recurrence seen based on small arterial branches from the Left ascending pharyngeal and Lt occipital arteries. The main venous drainage is to the Lt IJV. Venous reflux is also seen to the ipsilateral posterior cavernous sinus and through midline communications. I have little to no ideal what all that means, just reading it from the notes in my file.
At my last office visit, when Dr. discussed the angiogram results, he said he was calling it a recurrence, but actually he did not achieve total occlusion with the first embolization and wants to try again. I am unsure about doing it again. We will discuss it again after my MRI next month. The pulsatile tinnitus is back but it is not as bad as before the embolization. It is a year out now and I am still having trouble with these new symptoms that appeared after the embolization.
Has anyone else had to do a second embolization to get total occlusion and did it work?
I haven’t got time to write much this morning but my quick shot for you is that I believe it is often typical that an embolization takes one or two goes. My interventional radiologist told me that he might get my DAVF in one sitting but that it might take two. In the event, he was satisfied that he had fixed me in one go.
Even though he told me that, I worried about whether I was fixed fully for a long time post op and it took me 1½-2 years post op to agree with him!
I did feel that my embolization was easier to get through as an operation than I had anticipated, so I was not overly perturbed that I might need a second sitting: I just wanted to be fixed. As it turns out, my scans at 1 year post op showed nothing amiss and I eventually accepted that I was ok. I’m now very nearly 9 years post op and life has returned to normal.
It does sound like you’ve got some side effects from surgery that are undesirable. Whether they will prove to be temporary I can’t guess: a year is a long time for recovery but in neurosurgery terms, recovery seems often to be multiple-year, no less so that it took me about two years to decide I was all done.
I wanted to give a quick welcome to you. I am quite different, had a bleed, and ultimately went with gamma knife in advice and risk. I won’t go onto my story much more, but am approaching 10 years since I found out I had an AVM, and what an AVM was! I will use a line I have used many times before with our group, the right decision is sometimes not know until sometime later, the secret is to be at peace with the decision at the time. Coming to peace with the decision is difficult.
I had complete trust in my neurosurgeon, and he was so down to earth, explained the risks and the chances of success. I trusted the information he provided, the research I did and his recommendation and was at total peace with my decision. If I did not trust, I would have sought another opinion.
I would say that once you have your MRI, and all scans are done, and if you have trust in your team, the decision will be less difficult to be at peace with. I’m not sure this helps at all! Take Care, John
Thanks for the responses. Just glad that I have found this group that understands what this is like. Reading the stories and trials and triumphs of others is very helpful and encouraging.
Hi there. Just to say welcome to the site and sorry to hear what you’re going through. You’ll find us an understanding bunch here. But unfortunately with this health condition every case is entirely different. I’m not a health professional and my own AVM is inoperable. But I’ve learnt from others here that some AVMs can be tricky blighters and effectively regrow themselves by recruiting new feeders. Maybe this has happened to you.
Thanks lulu1. Sorry your AVM is inoperable. Hoping the best for you. I think I just need to be a little more patient with my issues. I think it was Richard who said it was about 2 years before he began to feel normal. It has only been one year since my intervention. So I am looking ahead praying for better days. After my MRI and next consultation with doctor, I will see what the next step is, and go from there, trusting God to lead doctors and myself to the solution for the best outcome. Thanks again for welcoming me to the group.