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.)

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.)

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.)

I thought this condition was rare!

I went to the D.C.-area ANA support group meeting today. Our speaker was a doctor from a hospital in Virginia who runs a CyberKnife machine. He told us about the history of radiosurgery, from the early days of single-session Gamma Knife to the current way of using fractionated therapy with the CyberKnife. There were around 25-30 people in attendance at the meeting, many of whom had surgery throughout the years. Some people had radiation as well. A few people were watch & waiters, and a few others were like me who planned to do something in the near future but were still deciding the what and who.

One of the main things I got out the meeting was that radiation seemed like a viable alternative to surgery, and that if I had radiation first, I might be able to "buy some time" before I needed to have riskier surgery. The surgeons I had spoken with so far didn't offer radiation as a choice to me nor offer a thorough explanation of why. The other thing I learned was that the House Ear Clinic in LA is really on top of things in the AN world and that it would be worth contacting them for more info.

(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.)

Thank you, Internet!

I found out about the Acoustic Neuroma Association and requested an information packet from them. Looks like there is a D.C. support group meeting later this month. I also started reading the ANA discussion forums and am finding it very helpful to hear from people who have been through this. I'm learning a lot but I'm too nervous to actually post yet.

http://www.anausa.org/

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