Lu(cele)

The following is an example of several letters that I wrote to a number of well-known ENTs (in the US and Canada), seeking more information about my pharyngocele diagnosis. This one is dated June 30, 2014.

Dear Eva,

I was referred to your office by Dr. Larry Norton – who, as soon as he heard that I have a pharyngocele, recommended Dr. Krauss.  I’m attaching Dr. Schindler’s (OHSU) note as well as including a link to the laryngoscope video from 6/4/14 and CT scan from 5/14:   http://youtu.be/BZhnT-Gy0Bk

Here’s my own summation:

I have a double external pharyngocele that I started noticing more than 20 years ago as a very cocky trumpet player in high school.  I’m told that there is something about this condition that is congenital but it’s hard to overlook the trumpet. I called it a ‘hernia.’ It looked like what I assumed a hernia looked like. Just on my throat.

In 1998, during my first semester as a graduate trumpet student at The Juilliard School, the herniation started to  become quite painful when I played – I used a necktie, tied at the top of my throat, to try and equalize the pressure. It wasn’t super effective.

I ultimately had surgery on my left side.  I don’t have any record of this surgery but it was done in NYC.  I was awake. They had me go into valsalva while my throat was cut open and they saw my windpipe balloon right through the muscle wall. They grabbed it, bunched up the slack, sutured it – and then tacked my muscles together and sewed me up. It may have been called a ‘laryngocele’ at that time – I simply can’t recall.

And the surgery seemed to work.  I still had pain but it was markedly less and I was able to maintain a career of trumpet playing – and notably, in a certain kind of musical scene noted for it’s athleticism and extremism (contemporary classical music and experimental improvisation).

But this past year has been too much.  The pain is nauseating and awful while I play and it gets worse after I play.  Afterwards, I experience constant pain and discomfort that lasts days and sometimes weeks; it often feels like a flu-like stomach ache in my throat.  Recently, after a few big concerts [over two weeks: recording session for a piece by David Lang; principal trumpet, Bach’s B minor Mass; concerto appearance with orchestra (Neruda); and a concerto appearance with wind ensemble (Ewazen’s “Shadowcatcher”)], I came off stage with overwhelming nausea.  And the pain, especially on my left side, was much more pointed and difficult to deal with.  I haven’t played since those concerts (3 months ago) and I am still experiencing pain from those shows. It’s very discouraging.

Other notable trumpet players that I have spoken to with a similar condition, report no pain.  Apparently, my celes are right on top of my superior laryngeal and vagus nerves.  This helps to explain my pain. As I understand it, my symptoms point pretty clearly to nerve damage and the prognosis is. And it also explains why this is a difficult condition to treat.  The surgery proposed by Dr. Schindler of OHSU would be experimental I’m told – one side at a time, three months off of playing after each procedure, harvesting fascia from my skull for supportive material, and then, if it works, I’d repeat the surgeries every 7-10 years for as long as I continue to play.

So, yeah, I think that’s a hard ‘no.’  I feel like the risks involved – swallowing and salivating as I’m told – clearly outweigh the possibility of a hopeful outcome.  When the doctor first talked to me about it, he said: “if I’m thinking about your general health, there is a very easy solution here: quit playing the trumpet.”

While this is anything but easy, I am also fortunate to have a career as Associate Professor of Music at the University of Oregon and my colleagues have already expressed support for me. I’m working on being open to quitting.  I have two young children to raise, and the thought of raising them with a feeding tube is enough to encourage me to just stop playing.

But even if I do quit, I realize that there are future risks I should be concerned about.  The risk of getting food and liquid stuck in these celes – leading to infection – is substantial, but this is an issue that could be mitigated with a less invasive, less experimental procedure I’m told.  I also have other compounding issues – jaw pain, swallowing discomfort and hoarseness that I’m told are all related.

Dr. Schindler’s note is attached. [For this post, I am merely attaching page 4 which gets into the details of the laryngoscopy and CT scan as well as his assessment].  For now, I am trying to rest  – perhaps I will make a decision as early as Sept .  Two days ago, I tried to play a little – and today, I have acute pain.  I guess it’s a sign.

I realize this is unconventional to do over email, but I’d like as many opinions as I can get.  I want to do everything I can do – my work has a lot to do with this instrument and I also just find myself, artistically, dumbfounded.

I appreciate your advice.