An Otolaryngologist, Radiation Therapist and Neurosurgeon walk into a bar...

So now that I knew I had an acoustic neuroma, my next step was to see a specialist in this field, an Otolaryngologist.  They are ENT's that have specialized in the surgical aspect of treating diseases of the ear, nose and throat.  I think.

My first stop was to meet with Dr. B at Stanford Medical Center.  I went alone and in all I would say the meeting went well.  I felt comfortable with him.  He seemed very knowledgeable and very patient in explaining the nuances of acoustic neuroma, the factors that play into a decision of what to do about it and the various surgical approaches to treating acoustic neuroma.  He referred me to his colleague, Dr. G, that works with the CyberKnife program at Stanford and could give me more information about radiation treatment.

I was so completely overwhelmed with information and the fact that there was no clear path of when or how to treat Arnold that I think my brain once again shut down.  I had no idea what to do next.  

Dr. B had indicated that I would not be recovering my hearing.  This was the first time I had been definitively presented with this outcome.  At this point I could not accept or understand that the hearing I had lost in my right ear was gone forever.  

Dr. B also said that my age was a huge factor.  I am rather young to be diagnosed with one of these.  In my lifetime I will have to do something active about it.  

At this point Greg stepped in and insisted from now on he would be going to the doctor appointments with me.  I think what coherent information I was able to relay to him really hit him how serious this diagnosis is.  Where as I was reeling in the unacceptable truths of what was happening to me, he was realizing I would need all the support I could get from him and someone with a more objective view to help me wade through this process.

So, we scheduled a meeting with Dr. G to discuss radiation treatment.  She reviewed my scans and basically said I would be a good candidate for radiation treatment.  When we left Greg said he felt like he had just sat through a sales pitch.  We had no direction on what to do, just two different doctors at Stanford offering to treat it in their own expertise.

More uncertain than ever, I decided to just not do anything for awhile.  The holidays were upon us, I wanted to enjoy them.

Sometime around the new year, my oldest brother, Kent, called me up for some reason or another.  While we had seen each other quite a bit over the holidays, we had not actually sat and talked about Arnold and what progress I had made.  So over this phone call I told him about my doctors visits and how those went.  

Now, you must know, my brother works for UCSF Medical Center in Technology Assessment.  We also recently had a very bad experience with Stanford Hospital.  So while we were talking he started digging around on the internet, quoting me UCSF's rankings on various lists "Best of" lists.  UCSF is very well ranked where Stanford was not even on the list.  

He was adamant that I should be going to a health care team that would be working together to advise me on a course of action, not just selling me their services.   He said he would ask around and find out who I should talk to at UCSF.  

I am forever thankful for that phone call.  He lit a fire under me and pushed me to expect and demand more from my doctors.  It was the push I needed to move my treatment forward.

In the mean time, my sister-in-law, who is very well connected, had been reaching out to her network of professionals on my behalf.  She said at UCSF, the team of Dr. L and Dr. M were who her colleagues recommended I go and see.  Kent also soon got back to me and seconded that same team is who I should contact and meet.

So the process now was that I could not just call up Dr. M and Dr. L's office and ask for an appointment.  I had to ask my original ENT doctor, Dr. S, to refer me to them. He did push back a little and wanted to refer me to the "other" team at UCSF but I insisted these were the doctors I wanted to see and he sent the referral.  

Holy smokes are these guys in high demand.  The first person to contact me was someone from Dr. L's office.  I scheduled my appointment with him for March.  It was January at the time.  Good thing these things are slow growing!

Dr. M's office contacted me next and he was easier to schedule.  I met with him in February.  There were many striking similarities between that visit and my visit with Dr. B.  The assistant came in first to chat with us and get my scans.  She lefts for awhile, then retured with Dr. M.  They did a few tests on me to see if there were other symptoms besides hearing loss.  They confirmed it looks like an acoustic neuroma and here are your options.  We did not even have to ask him what he recommended we do.  He up front offered, at this stage of they recommend to watch and wait.  Get a scan in May and if it grows or my hearing gets worse we think about doing something.

That was the answer we were looking for.  A doctor to definitively say, "this is what we recommend you do."  Not a doctor that says, "well, you could do this or this or this...it's up to you."

So, even before meeting with Dr. L, we knew we would be watching and waiting and getting a fresh series of scans and tests in May.  What a relief to have a plan of action, if only for the next three months.