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.)

Three hours in a machine!

I found out that a full spinal MRI takes about three hours, and they do it in parts over two days so you don't go crazy. It wasn't that bad, but the brain MRI is quicker and more enjoyable. Also, you can't use your insulin pump when you're in the MRI screening room (metal objects...huge magnets...not a good combination), so being disconnected from insulin for over an hour didn't do great things to my blood sugar.

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

ABR is easier than MRI

The ABR test is a cinch. All you have to do is sit very still in a recliner while the techs put some electrodes on your forehead. You're not allowed to fall asleep, but other than that, it requires no real effort.

The audiologist said that "the test results were consistent with my diagnosis." I wasn't really sure what to make of that.

(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.)

Reading between the lines

Phil (my husband) and I went to pick up the films and letter at Dr. W's office first. I went up to the receptionist's window and said my name and that I was there to pick up my MRI. The receptionist handed me an oversized envelope and said "good luck" in a hushed voice. I could feel her and the other woman behind the counter look at me the whole time as I made my way to the door. It was quite an eerie feeling. I asked Phil, "There must really be something wrong with me - did you see how they looked at me? Like I was going to die or something!" Phil, in his usual calm and collected manner, replied, "No, they're just not used to dealing with things besides earaches and allergy shots."

We got down to the building lobby, and I opened the letter from Dr. W to the Georgetown doctor and read it. I'm a "pleasant 26-year-old" presenting with unilateral tinnitus and hearing loss...MRI shows what could be a 1.5 cm acoustic neuroma...etc.

My hands are shaking a bit as we hail a cab to take us to Georgetown Hospital.

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

A surprise phone call at work

The day after the MRI, Dr. W called me at work. He launched into an explanation about cranial nerves and how a wart-like thing can grow from them. As he was explaining all of this, I thought to myself, "I need to listen to this carefully. If he's telling me all this stuff, it must be what I have." Dr. W said that during his residency in Canada, he saw a lot of people treated for this condition with radiotherapy, but that here in the U.S., most people have surgery to remove it. He also said that I would need to see a different ENT who specializes in this "thing," and asked me if I would rather go to Georgetown or Johns Hopkins. I told him Georgetown since I live in D.C. He said that he would call the other doctor's office to work on getting me an appointment.

Meanwhile, I was trying to figure out exactly what was wrong with me. He never called it an "acoustic neuroma," and based on his explanation, I thought it would be something easy to remove by going in through the outer ear. Only after I Googled "wart on nerves in ear" did I find out what I was in for. I went outside to call my parents, and my mom answered. She was as startled as I was but told me to not freak out too much until I met with the other doctor.

Dr. W called me back a couple of hours later to tell me that he got me an appointment with the doctor at Georgetown Hospital for two days later. That was slightly alarming because it was so immediate. Was this thing really a lot worse than I understood? I was supposed to stop by his office before I went to Georgetown to pick up the MRI films and a letter from him to my new doctor.

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

MRIs are a nice way to relax

I went in for my MRI (with contrast) today. Wasn't quite sure what to expect, but everything was fine. It was rather relaxing listening to the clicks, hums, and other rhythmic sounds the machine makes.

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