Nice to meet you

I finally posted for the first time today on the ANA discussion forum. I wanted to introduce myself and ask for advice about talking to doctors.

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

Still amazed at the follow-through

Dr. F gave me another call today to let me know that he had consulted with Dr. S. He asked me which way I was leaning - translab, where I would definitely lose the hearing, or middle fossa, which would allow for a chance of saving the hearing. I said middle fossa, which seemed to surprise Dr. F, who then stressed the fact that I would most likely lose my hearing either way and that translab was their recommendation. He also reiterated that "radiation therapy is not for [me]."

He went on to more fully explain the BAHA (bone-anchored hearing aid) device, and how that it does a good job allowing people to "hear" on both sides. The BAHA consists of a titanium implant that is screwed into the bone behind the ear and a processor that snaps onto the part of the implant that sticks out of the skin. The processor picks up the sounds from that side of the head and transfers the vibrations to the skull where they are "heard" by the other ear. Dr. F said that 25% of the patients with single-sided deafness (SSD) at House get a BAHA and that 90% of those people are happy with the device.

Dr. F told me to expect a call from Dr. S and said that he would have his surgical coordinator give me a call as well to discuss scheduling surgery and insurance coverage. He also gave me his cell phone number and said to call him if I had any other questions.

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

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.)

Exceptional customer service

Dr. F, a neuro-otolaryngologist (ENT) from the House Ear Clinic, called me today. We had a pretty long conversation, around an hour or so. These are some notes from that discussion.

• Surgery is the best option for a 26-year-old; he would definitely not watch-and-wait or have radiation.
• My hearing nerve is crushed and unresponsive.
• In his opinion, the tumor is slightly too big to preserve hearing.
• The goals of surgery, in order of importance, are 1) save the life, 2) remove all of the tumor, 3) preserve the facial nerve, and 4) save the hearing.
• The retrosigmoid approach is very complicated and would not be a good option for my situation because it would be difficult to remove all of the tumor in the internal auditory canal (IAC).
• He would recommend either translab or the middle fossa approach but thinks translab would be best because the tumor is slightly too big for middle fossa, plus the hearing nerve probably isn't worth trying to save and there would be an increased risk to the facial nerve.

Dr. F said he would have Dr. S, a neurosurgeon, give me a call to discuss my case, and that he would give me another call in a couple days after he consulted with Dr. S as well.

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

It vanished

Somehow, my FedEx to the House Ear Clinic disappeared. I put it in the drop box and forgot about it. I realized that I hadn't heard from House, so I went to track the package, but there was no information available. I called FedEx, and they sent a driver to check the box for my envelope. It wasn't there. I stopped by the box later that day and checked for myself. No luck. So I prepared another CD and letter to send out the next day.

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