Tuesday, May 28, 2013

Apparently, I'm a complicated case...(Cholesteatoma story, continued)

"The sun is simple. A sword is simple. A storm is simple. Behind everything simple is a huge tail of complicated." 
--Terry Pratchett

As some of you will remember, after I had my brain and ear surgery in December, the plan was to have a follow-up surgery in June to rebuild the bones in my ear. I've been mostly trying not to think about it, while also looking forward to some kind of light at the end of the tunnel.

A few weeks ago I had a head CT, and last week I had a follow-up MRI because the CT was inconclusive. When I talked to the nurse, she mentioned words like "encephalocele," and I asked if this meant that they were concerned that I had brain leakage again. She said that yes, it appeared that this was what they were worried about. She could tell I was anxious...so she got me in for an MRI as soon as she could (Wednesday).

The MRI took over an hour and was not fun because I had to have contrast dye, and it took the technician four jabs to get the needle in correctly. One of the jabs was on the top of my left hand and resulted in a large bruise. Finally, he had success on the inside of my left wrist. That night I went to see Kieran in his last performance of "Hillbilly Heaven," and suddenly I began to feel really sick, like I had a terrible case of the flu.

When I came home, I went right to bed. I had stomach pains, felt extreme fatigue and achiness, and was cold all over, but especially my hands. No fever though. The next two days I stayed home in bed and gradually began feeling better. I called the surgeon's office on Thursday, but they referred me to the radiologist at the imaging clinic. He said he had NEVER had a patient report this before, and he seemed to think I might have the flu. My ear surgeon said something similar today. However, I have no doubt that the contrast dye caused this awful reaction.

Since the MRI on Wednesday, I've been doing my best not to think about the results. We had a fun weekend full of friendship, family, and celebration, and I was mostly not worrying. My biggest fear has been that I would have to go through brain surgery all over again...and this is how crazy I am...I was more worried about all the stress and drama from dealing with two surgeons and the neurosurgeon's office than I was about actually having more brain surgery! (Which would not have been fun either!!)

This morning we went to see the ear surgeon to get the results. The good news is that he doesn't think I have what a coworker calls "leaky brain" any longer. The radiologist thought that he saw two millimeters of my brain poking out (I'm sure there's a more technical term), but the surgeon didn't think so...or it if was, "that's not that much" he said! Hmm...  I guess there's a lot of "junk" in my ear (his word). He and the neurosurgeon didn't agree on the way to patch my skull--so some of that junk was probably muscle. Apparently the junk is helping--again, hard to explain how exactly. Honestly, I didn't follow a lot of what he said because he speaks in very technical terms.

But one thing was clear: he said I am one of the most complicated cases he's ever seen, after having done around 2,000 surgeries. My anatomy is different--I guess my skull floor is lower than most, and the bone is thin as well.

It appears the cholesteatoma has not grown back (this is truly good news, as it grew back really aggressively last year between my surgeries in August and December). When I shared my concern about needing brain surgery again, he said he wished that his nurse wouldn't try to read radiology reports (prompting me to wonder why he hadn't called me himself--but I didn't say this aloud). Next time I will ask to have him call me.

So I have what I hope will be my final surgery scheduled for July 12, a modified radical mastoidectomy and tympanoplasty, "An operation to eradicate disease of the middle ear cavity and mastoid process, in which the mastoid and epitympanic spaces are converted into an easily accessible common cavity by removing the posterior and superior external canal walls." 

The primary goal will be to have it be my final ear surgery, followed by secondary goals of cleaning out any leftover cholesteatoma and rebuilding my ear bones. If the cholesteatoma returns after that, he'll be able to just suck it out my ear. (Yes, that is what he said.) The risks are the same as for the other surgeries--dizziness and balance issues, facial paralysis, and hearing loss (or "dead ear," as he calls it).

Mike was excited that I'm such a complicated case. I know doctors find cases like mine to be exciting challenges, too. I'm less excited. I think in this case I'd rather be normal!

But a close friend had this to say: "I'm with Mike. We always knew you were above average and incredibly interesting! Now the surgeons know it too." That made me feel better!


  1. oh boy, you sure have a lot on your plate babe (HUGS) will be praying for you

  2. Thanks--will take all the prayers I can get!!

  3. wow. sounds all complicated! i hope everything turns out well and no complications afterwards. definitely sound delicate too seeing as how you could possibly lose hearing and such. praying for the best results for ya!

  4. I'm with Mike, too! Sending you awesomeness vibes to add to your already overflowing awesomeness. We can all learn lots from your approach and good attitude.

  5. wow that all sounds complicated and very hard to deal with, kudos for to you for dealing with this all and being able to share and talk about it. amazing.