Tag Archives: Dr. Daniel Lee

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

False Flats, and SCD Surgery Recovery Time

I once was a biker: the kind who wears spandex and clip-clopping shoes. Not the kind with deafening exhaust pipes, Grim Reaper tats, and Kaiser helmets. Back when I was riding and racing, I hated the hills. And I lived in Kentucky!  I’m big for a cyclist at 6’4″, and I raced at 169 pounds. Since then, I’m no longer all thighs and calves. I carry a different kind of spare tire now and my handlebars are on my back.

Due to my size, and my low-strength-to-weight ration, I was not a good climber compared to the wafer-thin 5’5″ guys who could squat a Volvo. I would almost always lose contact with the pack on the steepest climb of the race, which forced me to take risks and catch up on the descent.

This one time, though, I was hanging in there. I was at the back of the pack, but still on a wheel, and I could see the top of the hill. I was certain I would make it, so I hit the thrusters and moved to the front in an effort to take advantage of my natural plummeting skills. I was great at going downhill really fast. (Except for the time I crashed at 55 MPH, but that’s another story.)

So, I got to what I thought was the top of the hill as I pulled to the front of the pack, but lo-and-behold, it was a false flat. There was at least half a mile of hill left and I’d burned up my boosters. The little guys saw me falter, put the hammer down, and left me for dead.

I hit a false flat with regard to my Superior Canal Dehiscence surgery a few posts ago when I wrote about feeling peace and calm descending. It was there for a brief second, then sped away faster than a pack of PED-enhanced cheetahs when came the news that I’m bilateral (I have dehiscences on both sides), and that Dr. Lee in Boston recommended endoscopy, which I wasn’t sure my surgeon here would or could do.

I emailed Dr. Lee and Dr. Wiet with more questions, and being the caring professionals they are, they got back to me with their thoughts. Dr. Wiet does use an endoscope and will have it at the ready if necessary, but doesn’t think he will need it. He and Dr. Lee differ on the approach, but in the end, knowing it’s there if he needs it, and that I’ll have world-class hands in my head only 20 miles from home, helped me to decide I should stay in Chicago. Dr. Lee speaks very highly of Dr. Wiet, as does his former patient Elizabeth Nielson whose testimonials are on my video page. So, I’m staying in Chicago and I’ve finally felt good about it for two days in a row.

Dr. Lee also answered questions about recovery. He said that in the 250 SCD patients they’ve treated, they have often seen untreated symptoms grow worse over time. He said that patients who face the toughest recoveries are generally 1) Women 2) bilateral people with large holes over both ears, and 3) people who suffer from migraines. While I am bilateral, my holes aren’t huge, I’m a dude, and I don’t have headaches. I suppose in this one situation, I lucked out. It stands to reason that if symptoms do generally get worse over time, which means my holes could possibly get bigger, why wait and force a further compromised lifestyle and more difficult recovery down the road? Right? (You all just said “right!” Right?)

So, now it would seem I’ve made it over the top of the false flat. It’s gonna be a fight to catch the pack, but I’m gonna tuck in as tight as I can, and hope to bomb down the mountainside of surgery and recovery as quickly and carefully as I can.

10 days to go.

Solving for X: Getting a SCDS Diagnosis

As I have been made to understand it, there is a clear equation, or proof, required for diagnosing a Superior Canal Dehiscence.  The first step seems to be the hardest of them all:

You need 1 doctor who can put together the puzzle of your symptoms into a clearly assembled picture and send you for testing; or, you need to somehow put that puzzle together yourself and find the 1 doctor who understands this problem and will take a shot at investigating it. It’s still new, it’s very rare, but I don’t buy that the modern ENT worth his or her otoscope shouldn’t have heard about this disorder by now. Google lists hundreds of pages about SCDS. It was on The Doctors TV show, famous people have suffered from it and brought it into the news, and there are dozens of journal articles regarding the problem. And yet, it remains so “mysterious.”

If you manage to solve the first part of the equation and get a referral to a specialist, there are many tests that are performed on dizzy people. Dizziness is my primary symptom, and it is what leads to my other complaints of brain fog and fatigue. In some ways, people who have  stronger audiology-related SCDS symptoms should be a tad bit easier to diagnose. Autophony and Tullio are very rare, and strongly indicate a dehiscence to a doctor who is current on the research in his/her field. There are many causes of dizziness, however, and most docs are under the inclination that “it’ll just go away over time.” If you’ve somehow passed through the first stage and found a SCDS-suspicious ally, you will need to have at least 2 tests. First, a hearing test. Most SCDS sufferers have some degree of low-frequency hearing loss. But again, lots of people have that symptom for a variety of reasons, so, in and of itself hearing loss cannot be the smoking gun. That gun is usually the VEMP TEST (Vestibular Evoked Myogenic Potential). If you have a strong VEMP response (which is perfectly comfortable, but very strange to endure), you are allowed to continue your progress to the final proof and solve for X.

It’s all well and good to have lots of symptoms, low-frequency hearing loss, and a strong VEMP, but they have to see the dehiscence in order to fully diagnose the problem. So, step 3 is a high-resolution, thinly-sliced CT of the temporal bone. It was strongly suggested to me that I have the images taken at the location of my doctor’s choosing because that facility is quite familiar with SCDS, understands how to get the best images, and would forward those images to a radiologist with experience diagnosing the disorder. Proof is in the picture. I understand that sometimes they can’t see it. Unfortunately, as I’ve been told, if they can’t see it, they don’t like to operate, so getting a great image and experienced radiologist are crucial in this final step.

And yet, even with a clear image and a reading from a trustworthy radiologist who has seen SCDS before, there can be wild differences of opinion. My radiologist called my dehiscence “slight.” Dr. Hain, the specialist who diagnosed me, thought I should opt for a more conservative approach and let my condition ride for a while longer, while Dr. Wiet, my surgeon, feels a 3mm hole is quite significant, and that my situation is clearly one in need of repair sooner than later. So, I then sought a second and now third opinion just to be sure.

With clear proof and X solved, there comes some relief — mentally. You know you’re not crazy, you’re validated in that someone believed you, and now you have a solid answer. But what you do with that answer is ultimately up to you, whose opinion you trust, and the degree to which you are suffering. I see that big in front of me every day, and still debate what to do with it.

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.