…I s the only one I can type with — my own personal gesture to SCDS! I can read and type on the iPad with no difficulty. I got up and walked to a chair for a while to sit up. It was fairly exhausting, but made me feel better. I slept four hours and am needing less pain pumps as time goes on.
In addition to generous colleagues covering my classes and committees, friends and family caring for my kids and bringing us food, and all manner of offers to provide help (including the procurement of a helicopter should the need arise), I got a pep-talk today from my Dad, the Coach — so I’m all set.
This is but a small note of enormous thanks to you all. I’m humbled, and deeply, deeply grateful for your care and concern. See you on the other side.
Here are some things I know:
- Many millions of people suffer from and in conditions far worse than I’ll ever know
- I’m lucky my SCDS hasn’t completely debilitated me
- I’m lucky I received my diagnosis relatively quickly compared to most
- I’m lucky to have fantastic resources and live in a great big city full of amazing docs
- I’m lucky to have wonderful friends & family, and an incredibly strong, loving, powerful wife
You’ll hear from Tina soon as she’ll be posting for me before, during and after surgery. This ordeal has been an incredible burden on her. I have been forgetful. I have been absent: both mentally and physically. I have been weakened. I have been unproductive. I have been emotional, confused, and frustrated. I have been difficult. I have been off balance — literally and figuratively. My wife has born the brunt of this. She’s seen everything that the people who tell me “you always seemed fine” never saw. She’s been a take-no-shit, give-it-to-us straight, relentless demander of answers. Most importantly, knowing I’m scared and conflicted, she’s been a brave warrior to my face, even thought sometimes I catch her with tears in her eyes that she is quick to wipe away.
It’s tough to constantly remain positive, helpful, patient and supportive. It’s a terrible burden to want desperately to help someone you love, but feel utterly powerless to do so. The thing is, she was never powerless. She’s been nothing but power as my second backbone, my balance-booster, and my “take a deep breath” commando. I love her, I wouldn’t be where I am without her, and having her in my life is the one way in which I am the luckiest of all.
For a guy, I’m definitely a hair snob (This pre-cut photo does not indicate as much. I had just shoveled 92 feet of snow off my driveway. Leave me alone.). Clippers haven’t touched my tiny little head in 13 years, but I figured if some pre-op nurse is going to shave an ugly stripe in my skull, or even a whole side of hair off, I’d rather have the lovely Amanda, a true professional shorten the entire batch. No hair-washing for 10 days post-op? Yeah. Let’s whack it.
ABC’s medical drama GREY’S ANATOMY once did an episode featuring a story about Superior Canal Dehiscence Syndrome, wherein a patient is thought to have schizophrenia due to the sounds she hears in her head, but truly suffers from SCDS. It’s episode 622, called Shiny Happy People (presumably named after one of my least-favorite R.E.M. songs).
I received a tweet today from a fellow Superior Canal Dehiscence Syndrome sufferer, @ElzElz, which included this link to an amazing journal article on how vestibular disorders affect cognitive function. I nearly wept. The article details the whole picture, and when I sent it to my wife, she wrote — “Crazy! It totally describes you and your symptoms.”
I’ve had a good day. Clearly, I’m blogging twice! I also drove 36 miles to Chicago, had a meeting, taught a three-hour class, took a call from brilliant producers and a director who gave me great notes on a script, and I will now drive back home in the snow. It hasn’t always been this good, and believe me, my head hurts and I’m tired. Not to mention, I forgot the names of students, actors, movie titles, and even mixed up a plot line or two in class (but my lecture kicked ass, if I do say so myself.) In my meeting, I felt like maybe I asked for clarification on several points I would normally have processed the first time. Those are small things. Workable things. And hopefully, fixable things. I’m grateful to be as functional as I am, but I’m thrilled that someone is researching the links between vestibular problems and cognitive function, as these are the long-terms symptoms I fear the most.
Perhaps plugging up this hole in my head will help keep the ideas and memories inside where they belong.
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 X in front of me every day, and still debate what to do with it.