Tom, I hope the second opinion is either enlightening or reassuring!
I haven’t posted on this site before, but your posts have helped me tremendously over the past year and I am struck by some of the similarities in our post-embolization symptoms.
A bit about me: In Sept 2017 I developed pulsatile tinnitus and was diagnosed with a DAVF two months later. I elected to have endovascular surgery in Jan 2018 because in addition to the tinnitus, I had developed terrible, intractable headaches. The pulsatile tinnitus resolved after coil embolization, but the headaches did not. Although the pain has decreased substantially over the past 8 months–to the point where I am now hopeful that I can make a full recovery–I still have unrelenting head pain. So, I can certainly relate to your struggles with with the ongoing headaches that never remit, and the toll this can take. My heart goes out to you.
Like you, I also hear some very wild noises in my ears! First, I have a high pitch ringing that is present about half the time. Almost sounds like air being let out from a tire. Second, I can hear a static-y crackling sound when I cover my ear or rest it against a pillow. It sounds as if someone has poured milk on rice krispies cereal… in my ear. Third and finally, I also hear/feel a strong pulse when I rest my ear on a pillow. Not the screeching/swishing sound of my pulsatile tinnitus, just a strong heartbeat.
I have discussed the ear noise with two neurosurgeons, an ENT, and my Primary Care doc, but no one seems to know what to make of it. They’ve thrown out plenty of possibilities–side effect of radiation, changes in blood flow, irritation to my auditory nerve-- but who knows! My follow up angiogram at 6 months post op showed that the fistula is still completely occluded, so no one is too worried. My ENT did refer me for a hearing test next month, and I’ll be happy to share any illuminating findings.
I am fortunate not to have any issues with vision, concentration, balance, and can only imagine how much strength it must take to mange any of those symptoms in addition.
You said in your post that having a better understanding of your symptoms could help you, even if the symptoms do not improve. I feel the same way. One of the hardest parts of this whole experience has been the constant uncertainty. I hope that you are able to find some answers, and please let me know if there is any information I can share about my own journey that could be helpful to you. As I said before, your posts have helped me a great deal.