Tracking My Hearing Loss
Lindsay Mayer was recently diagnosed with Idiopathic Sudden Sensorineural Hearing Loss. The condition affects affects approximately 5 to 20 people in every 100,000; this means I’m 1 in 20,000. In this video, she shares how it started, what she went through, and how tracking her data helped her through this difficult and challenging time. She also discusses what she has learned from tracking her hearing loss.
Hi everyone my name’s Lindsay and as a child my parents told me I was special. Six weeks ago I was diagnosed with idiopathic sudden sensorineural hearing loss. A condition that affects approximately 5 to 20 people in every 100,000; this means I’m 1 in 20,000.
It started on September 11 2011 when I was hiking with a group of friends in Mirin. I heard a pop in my left ear which was followed by some unpleasant pressure and a ringingness that persisted for the last six weeks’.
Thinking this was a simple sinus problem I went home and I started taking Claritin-D I hoped the pseudo ephedrine a decongestant would help clear my sinuses.
The next day there was no change in my status and I called my doctor who wrote me a prescription for Varamyst which is a corticoids steroid nasal spray. Now not convinced that a nasal spray was going to be helpful to my ear and continuing to be worried I tweeted the next day. On Sunday I lost hearing in my left ear. When I placed the landline phone next to my ear I can’t even hear the dial tone.
My curious and worried Googling suggested that I had a sudden hearing loss, a condition that was described by Medscape as being an otologic emergency. I knew that I needed to get help so I turned to Google, who helped me find the nearest ENT or Ear Nose and Throat physician in Memorial Park where I worked. This led me to Doctor Paul Yeun at Memorial Medical Clinic which is associated with Stanford Hospitals and Clinics.
Now by day I work in Silicon Valley venture capital firm called Cannam partners in the, and I’ve recently been dabbling in the Health 2.0 movement. So I knew there was probably an app that could help me quantify how sever my hearing loss was.
I found a free app called Sound Check, and it was no surprise to me that the results showed that my right ear was normal and I had sever hearing loss in my left ear.
Sudden sensorineural hearing loss is defined from a textbook definition as something that occurs in something less than three days, in three continuous frequencies at a decibel greater than 30.
Now I knew in my case that the onset had been in the first 48 hours so I satisfied the first criteria. And with the help of my iPhone hearing test I saw that my hearing loss in my left ear was at three continuous frequencies. So the remaining question was, was my hearing loss greater than 30 decibels.
At this point you may be scratching your head and asking yourself what causes sudden hearing loss. As it turns out approximately of 80 to 90% of cases are idiopathic or unknown. For those that can be traced through specific ideology the cause is often an infectious disease, a circulatory or a neurological problem. Other causes are through Ototoxic drugs.
How is this diagnosed? Well first of all a hearing test, but secondary a blood test to rule out infectious diseases and MRI to rule out circulatory and neuro problems.
First line treatment for sudden sensory neuro hearing loss is oral prednisone or Intratympanic or steroid injections.
The same day that I saw Doctor Juen I had my first hearing test. This is a fast result, and this complicated mess shows that my middle ear function was okay, but from the very lowest to the very highest frequencies I had profound sensory neuro hearing loss with no speech recognition, meaning I could hear nothing in my left ear. No optoacoustic emissions and poor hair cell function.
What surprised me the most of the audiogram was that the $375 test, which took 45 minutes, produced the same results as the free iPhone test that took me three minutes while I was lying in bed.
I had an normal MRI and I celebrated with my friends and family on Facebook by posting the images to Facebook in an album called My Beautiful Brain; note images taken inside my cranium.
The next day started taking high doses of prednisone therapy. I was worried about things like weight gain, elevated blood pressure, elevated blood glucose, difficulty sleeping and mood change. Every morning with breakfast I took three 20mg tablets.
One of the things that helped keep me going through this difficult and challenging time was tracking some of my data. Here are a couple of screenshots taken from my iPhone test on September 13. I call this baseline data and because this was taken two days of the onset of my first symptoms. Now watch carefully about what happens to these blue bars and these blue dots just four days after my first dose.
This was encouraging to me and it didn’t come as any surprise when after 16 days my hearing was practically back to normal with the exception of some frequencies in the middle range.
So what did this data provide? Well for me this data was hope. As a type A personality this gave me a sense of ownership and control over my own treatment. It also heled me to better visualize my progress. It was sharable information that I put on my blog and shard with family and friends.
It also helped me increase my prescription compliance, because as I found as I was improving with steroids, I wanted to to keep taking the steroids because they were working; there was a positive feedback loop that was created. And because that I knew that the results were predictive it also helped me predict the results of my weekly audiograms that I was doing with an audiologist.
As you can see my ergonomics teacher would be proud, but I saw that after the first week I started to experience diminishing marginal returns. That is, the improvements after week two we happening and still happening in smaller and smaller increments. So this data provided the decision support for my decision to start tapering off the high dose therapy on October 3. And it also provided the basis for starting the second therapy which is the Intratympanic Dextromethasone.
Now I was aware that second line therapy only had a 50% chance of being successful, and on October 13 I had my first injection. Cross my fingers and waited.
This showed that on one day before the first injection and 10 days after, there was no statistically significant change unfortunately. I had my second injection today, and as I think about the last six weeks I think of all of the doctor appointments, the audiograms, the trips to the pharmacy, the blood work, the MRI, and I started to think about the time and the associated cost of doing all of this doctoring. And my rough economic estimate is that the last six weeks have cost me over $12,000. Now fortunately I have great insurance, but even if you add on the 50 hours that I’ve spent doing all of this, the total skyrockets to over $15,000.
This contrast interestingly enough, with a self-tracking approach where I could have been monitoring my own progress with an iPhone, taking prednisone which cost cents on the dollar, and even if you factor in the loss productivity of picking up my prescription, $120, which is less than 1/1000 of a percent of conventional medicine.
So what have I learned? Well in my case data equals hope, data equals decision support, and lastly, self-tracking could be a potential way to cut future health care costs from the system.