Tag Archives: Massachusetts Ear and Eye

A Visit to Dr. Daniel Lee

Hi everyone.

This week I flew to Boston to visit with Dr. Lee and discuss my situation. I was his last appointment of the day, but he spent a lot of time with me, and we had a very thorough conversation.

So….the audiogram and VEMP tests were negative on the left (unrepaired) side. We know from films that there are holes there, but Dr. Lee seriously doubts my symptoms are coming from the left given the results of these tests. My hearing is quite acute in the good ear. I do suffer from very mild autophony and hyperacussis, but they do not impede me much day to day.

Without a read on my new CTs yet, and not having fully reviewed my post-op notes, he suspects my remaining symptoms are coming from the repaired side. Why? Don’t know yet. Maybe the repair did not take. One other hypothesis is Hydrops. I had a bout of that many years ago when a doctor in L.A. suspected meniere’s disease. I corrected it with diuretics and a low sodium diet for several months, and then it just went away. Dr. Lee thinks this may work again, but we have no way of knowing. So I’m going to give that a shot beginning very soon. I’ve been taking a very low dose of valium, and he wants me weaned off that, to give my brain a chance to really adjust to the information — however screwed up — it’s receiving from my vestibular system.

With regard to the left side, it’s good news that I’m not showing symptoms there, but it kinda broke my little heart when he told me that it would have to be an extremely dire situation for him to operate on my unrepaired side, for fear of making me fully deaf. He said round window occlusion might be an option, but he would prefer to do nothing.  And he did confirm that in general, dehiscences do grow and progress over time. So…yay!

I’ll await his further opinions while back in Chicago, but in the mean time, I’m trying to stay positive, be grateful that I remain able to do most things I want to do, continue to stay as fit and productive as I can be, and research every possible option for holding this thing at bay.

I went for a walk to MIT and back the night before my appointment:

MIT at Sunset

MIT at Sunset

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It’s Who You Know

Not too long ago, I was fortunate to have the opportunity to do some rewriting work on a movie that was going into production. A certain public figure I had long admired performed a cameo in the film, and while I didn’t ever get to meet this person, I was able to write some of the dialogue he spoke, which I not so humbly bragged about to my friends and family.

Turns out, this person had superior canal dehiscence surgery shortly after the movie, and a quick email to the film’s producer landed me his contact information. He was eager to talk once I explained my situation. We chatted at length last week, and it was fantastic for me to speak with someone else about symptoms, diagnosis, surgery and recovery. While no doctor himself, our public figure felt surgery is probably the right choice for me, but recommended I seek the advice of his surgeon, Daniel Lee of the Massachusetts Eye and Ear Infirmary, who is regarded as one of the top docs in this field. My new friend emailed Dr. Lee after we hung up, and the good doctor wrote me back instantly.

Dr. Lee confirmed that my Chicago surgeon, Dr. Wiet, has an impeccable reputation, but given the scope of this surgery and its potential impact on my life, I felt it couldn’t hurt to have one more opinion, especially from a surgeon of Dr. Lee’s stature.  My images and medical records are on the way to him as we speak, for what will amount to a third opinion on my skull.

Hollywood has always been a “who you know” business, but it’s sometimes harder to find out exactly what you want to know. In this case, one movie helped me luck into both.