Hi, everyone. My husband was diagnosed 9 years ago with a 2 mm AN that has progressed over time to a 6mm by 5 mm by 14 mm tumor with a small extension beyond the IAC in to the CP. My H has absolutely no symptoms, and has excellent hearing. We have only decided to do surgery now because the tumor is pressing against the brain stem, and because it remains small-ish now. We are not interested in radiosurgery, although it seems to be a wonderful option for others.
After much research over the 9 years while we were watch-and-wait, we decided to go with Friedman/Giannotta at USC Keck. We have followed Dr. Friedman's career, and were very impressed by both his qualifications and the team he put together at Keck. After making the decision to move forward, we spoke with Dr. Friedman, who was very confident about his ability to successfully remove the entire tumor, with the best chance of preserving hearing that anyone could provide, and without damaging the facial nerve. We were very surprised that Drs. Friedman and Giannotta advised the retrosigmoid approach, but Dr. Friedman was clear that his protocol dictated retrosigmoid for tumors of my husband's size and placement, and that he would not risk the facial tumor for my husband's case, in which the tumor has escaped the canal. Dr. F explained that to work on the portion of the tumor outside the canal, the retrosigmoid approach would give him the best visualization, and thus the best chance of not damaging the facial nerve. Dr. Friedman indicated that he and Dr. G would be "in and out in three hours," which was particularly intriguing to us, as my husband has some cardiac issues that make surgery time one factor to consider, although he's still an excellent surgical candidate. We were pretty pumped up after speaking with Dr. F, who was just the kind of confident that you want in someone mucking about in your brain, and recently scheduled the surgery for 11/3. In the time since then, we have been well-coordinated with the patient coordinator, who has been wonderful. We have flights, we have hotels, we have babysitters, we are good to go.
But then, after a meeting at the local chapter of the Acoustic Neuroma Society, though, we became particularly concerned about the risk of headaches after the retrosigmoid approach. We knew that it was a risk, but speaking to folks who experienced them was moving. We called Keck, and although Dr. Gionnotta is out of town, Dr. G's physician assistant spoke with us, and assured us that headaches were not a symptom that Dr. G's patients experience, but there wasn't much to go on, other than her word on that. That feels like a huge risk to take. On the other hand, we are confident that Dr. F and Dr. G are among the very best surgical teams in the US, and there is no reason to expect any complications.
Because we are concerned, we followed up with House Ear Clinic, and spoke with Dr. Brackmann and Dr. Schwartz. Both recommended the middle fossa approach. Dr. Schwartz explained that in my husband's case, the facial nerve was "in front of the tumor, not on top of the tumor," and that made the risk of damaging the facial nerve less of a concern. Dr. Schwartz was confident that the middle fossa approach was the best one, and that it would also provide the best opportunity to remove the entire tumor, without damaging the facial nerve, and with the best chance of preserving hearing. Dr. Schwartz indicated that he thought five hours sounded like a reasonable amount of time for my husband's surgery, but noted that he did not have a cardiac unit with the depth of experience that Keck would have. That was a mild concern, but not overwhelming. I particularly liked Dr. Schwartz, because he got in the weeds a little bit in discussing my husband's images and individual tumor placement, but that's probably not a reason to choose a surgeon. He was also honest with us that Dr. Brackmann is very senior, but very capable. I appreciated his addressing that issue with us.
We asked each doctor why the other was recommending a different surgical approach, and neither had any idea. The doctors were absolutely respectful of each other, but each remained convinced that their approach was the appropriate one. Dr. Friedman said, "of course House wants to do middle fossa -- they always recommend middle fossa." Dr. Schwartz was surprised that Dr. Friedman would recommend retrosigmoid, and noted that he would have performed middle fossa on this sized/placed tumor when he was at House a short time ago. Each doctor noted that we had a difficult decision to make, which was both comforting, and totally unhelpful.
We are absolutely stumped and looking for any ideas or thoughts the AN community might have on how to re-evaluate our decision. We were all set to go, and now we are second guessing ourselves, and could use any insight anyone might offer. We are going to have to make a decision within a week, it seems. Thanks in advance for any comments!
