I'm in the driver's seat

Dr. S, the neurosurgeon from the House Clinic, called me at work today. Here are his thoughts:

• Since I am 26, it must be treated; no watch and wait. He would be reluctant to do radiation on a young person, but it could be done. His recommendation would be surgery.
• He felt that the shape of the tumor looks unfavorable for saving the hearing.
• In terms of his recommended approach, he felt that the tumor was slightly too large to attempt middle fossa, as it would increase the risk to the facial nerve. He wouldn't do retrosigmoid either because it would be difficult to get it all out of the IAC. He thought that translab would be the best way to get it all, but that I might want to wait until we established that it was actually growing.
• He thought that I should get an MRI every three months until we see growth compared to the first MRI.
• His suggestions for reasonable "next steps" were: 1) wait for growth, then do translab, 2) do translab now, and 3) do retrosigmoid now.

I liked how Dr. S didn't just repeat verbatim what Dr. F had told me earlier and that he was able to offer additional things to think about. I liked that he offered options; I felt like I was more in control of what was happening to me instead of feeling like I was being steered into doing just what the doctors thought.

I was considering going out to the House Clinic in Los Angeles at this point, but I wanted to hear what Dr. J said locally before I made any commitments one way or the other.

(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.)

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.)

Seeking the best

I decided to go ahead and send a CD of my MRI to the House Ear Clinic in Los Angeles. They offer a free consultation, so I didn't think it would hurt to get another opinion about what's going on in my head.

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