Hello again

I met with Dr. J at Georgetown again. I explained to him what the House docs told me and said that I was thinking about doing translab instead of retrosigmoid. He seemed disappointed but said that if that was what I wanted, he could do it. Then I asked him a couple of questions about things I read related to what you can and cannot do after surgery. At the end of the appointment, he gave me the name of his surgical coordinator and told me to schedule as soon as possible since he was booking up pretty far in advance.

(In the interest of full disclosure, this post was actually written on 1/30/09.)

Another interesting appointment

I saw Dr. G, the radiation oncologist, today. He explained the three options to me again (watch & wait, surgery, radiation) and briefly described the CyberKnife fractionated treatment. Basically, the goal of CK is to split up the total amount of radiation into several sessions so that the tumor gets the combined strength of radiation but the surrounding tissues get a much smaller accumulated dose. The rate of hearing preservation with CyberKnife is higher than with Gamma Knife for this reason.

GK is usually a single session of radiation directed at the tumor, and to ensure the patient doesn't move, a metal head frame is screwed into the patient's skull. CK uses a fitted mask to maintain an approximate continuity between sessions, but the machine also has an on-board CT scanner that scans the location of the patient's head during the procedure so the robotic arm can adjust if a slight recalculation needs to be made.

I didn't really feel that I learned any more about the CK option than I already knew from reading the discussion forum posts. The main thing I took away from this meeting was what Dr. G said toward the end of the appointment, which was that his recommendation for me, based on my age and the lack of long-term studies on the effects of radiation, would be to have surgery. He said that he wouldn't NOT do radiation treatment if that's what I wanted, but that it wouldn't be his preferred choice.

The thing that AN patients run into a lot of the time is a lack of unbiased sources for information. Surgeons generally want to cut, and radio-oncologists want to zap. I was surprised to hear that Dr. G, being a radiation oncologist, thought I should have microsurgery. That was when I decided for good that I needed to be focusing on surgical options.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

That wasn't what I expected to hear

I went to see Dr. K today. He was disappointed at the results of my ABR test and said that it was unresponsive, indicating that my hearing may not be able to be preserved. What I didn't understand was, if that was the case, why could I still hear fine out of that ear? He looked over my spinal MRI films and said that there were no incidences of additional tumors, so I probably don't have NF2. In order to completely rule it out though, I would need to have genetic testing done, but since I have no family history of it, he felt it would be unnecessary to do that.

After we went over those things, I asked about the CyberKnife, which seemed to catch him off-guard. He started looking very uncomfortable and suggested that I see the radiation oncologist to ask about that specifically. He gave me the name of the doctor, and then basically the appointment was done. I felt like I had done something wrong, but I was just trying to get all of the facts.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

Getting the run-around

I had been trying to set up another appointment with Dr. K, but his receptionists kept telling me that he's on vacation. I left a message and then followed up later when they said he would be back in the office, but they told me that he's still not back. The problem was that he had no appointment openings until later in October, but I didn't want to wait that long to see him again. The staff had to check with him before they could set up a double-booking. Eventually I emailed Dr. J to see if he could help things along, which ended up working. I'll be seeing Dr. K again on Sept. 29, which is awhile from now, but I guess I have no choice. Meanwhile, I'll keep doing more research.

(In the interest of full disclosure, this post was actually written on 1/29/09.)

Hey...it's not brain surgery

People are always comparing the difficulty of things to brain surgery. You ask someone how to do something and they reply with "it's not brain surgery." Well, today was my first encounter with an actual brain surgeon, and he didn't seem to think that his job was as hard as everyone makes it out to be.

Dr. J was young, somewhat surprisingly young. He seemed very competent though as he explained the retrosigmoid procedure to us. The surgeons drill a hole in the skull behind the ear, retract the brain, and excise the tumor. This procedure leaves a chance for hearing preservation, unlike the other main AN-removal technique known as translabyrinthine. In the translab procedure, the surgeons drill through the inner ear canal, destroying the hearing mechanisms, to get to the location of the tumor.

As Dr. J was talking and demonstrating the location on a skull, I took notice of his hands. They were kind of dry but also very steady. That seemed like a good sign to me. He also seemed very confident, but I never got a specific number of how many of these he had performed. Dr. K had said that they do essentially one per week, but I wasn't sure if that was just the two of them or if that figure included other skull base tumor doctors at the hospital.

Phil and I left that appointment feeling pretty good about the doctors we had met at Georgetown.

(In the interest of full disclosure, this post was actually written on 1/28/09.)

The onslaught of info begins

Phil and I arrive at Georgetown Hospital to meet the ENT, Dr. K, there. We wait in the waiting room for a long time and are then finally called back. Dr. K explains the options (watch & wait, radiation, surgery) and recommends surgery due to my young age. Most acoustic neuroma patients are in their 40s or 50s. He says that there is a chance that I could have Neurofibromatosis-2 (NF2), a genetic disorder that causes these benign tumors on both sides of the head and along the spine, because I am on the young side to present with just a single acoustic neuroma. He recommends that I get an MRI of my full spine to check for any incidence of tumors. He also wants me to get an auditory brainstem response (ABR) test, as that will help them determine the level to which my auditory nerve has been affected by the tumor. Finally, Dr. K gives me the name of the neurosurgeon with whom he works on AN cases, and I'm to set up a meeting with him to discuss the actual surgical procedure in greater detail.

(In the interest of full disclosure, this post was actually written on 1/28/09.)