So I am new to this forum and was just diagnosed this month (May 2020) with a 1.4 cm by 1.2 cm acoustic neuroma. Unfortunately my AN was missed nine months earlier because the MRI was done without contrast, therefore, it was never reported by the radiologist and I am now being told that an accurate measurement of the AN on that MRI cannot be made. Therefore, the growth of the AN cannot be determined and the most recent MRI will be used for the basis of monitoring future growth.
I had my first neurosurgery appointment and was told that the best approach at this time is to wait and watch. My symptoms include some right side hearing loss, tinnitus, some drifting gait issues, fullness and pain in my ear and some fumbling with my balance. The surgeon asked many questions about my hearing and I answered as accurately as possible. Based on my answers and without having any hearing tests for him to view, he disclosed that my hearing loss was advanced. Unfortunately, I did not bring my last hearing test from nine months ago, the same time the previous MRI. His office never requested that I bring those prior results. Plan on getting my hearing tested again because I did not like the surgeons interpretation of how advanced my hearing loss was because he implied that no matter what (surgery or wait and watch) my hearing could not be preserved. This because he felt the hearing loss was already advanced. So, would his decision to wait and watch be different if my hearing was better and there was a chance he could preserve was was left? Again, it is not advanced. I can talk on the phone with the phone on that ear. While the persons voice is softer, I can still hear. The last hearing test said mild high pitch frequency hearing loss in both ears.
My problem is that many of the symptoms I described he disassociated with the AN. Said headaches were not related. Also, my tinnitus which is coming from both sides, but more prevalent on left is most likely not related to AN, but from a fall to the head that resulted in some left hearing loss. How can that be if it is coming from both sides, yes louder on left than right? When I asked if I should be concerned about future facial nerve issues if we wait and watch, he said there would be no worry about facial nerve being affected, even though I have read differently.
He is supposed to be the best surgeon for AN in my state and top in his field is the U.S.. So, i wonder why my symptoms were being a bit dismissed and I left feeling more stressed and confused than before I met with him. I am the type of person that likes to have things fixed and I am not a person that does well hanging in limbo. I had all my questions typed up, but because his position immediately was wait and watch, there was never any discussion about radiation or surgery.
Wants to repeat MRI in 3 months and again 3 months after that to track growth. That if AN is continuing to grow and symptoms worsen, then other treatment options would be discussed. But is it everyone’s opinion that waiting until symptoms worsen is the best approach? I believe in this surgeons capabilities and he was a kind person. His work speaks volumes. I just felt that I left with more questions than when I came and I am thoroughly confused. Reached out to another surgeon out of state and will be seeking a second opinion to put my mind to rest. I feel it is important to do the surgery in my home state because all my other specialists are here and they would be coordinating with the surgeon if surgery were needed. I need to find a way to move forward with my life knowing that the decision to wait and watch is the right one for now. I don’t want to regret this choice, find that it has grown and I have lost more hearing when there was a potential window of opportunity to preserve what I still have left and prevent further problems. Any input would be great!