It has happened to me three times prior to this most recent incident—three times that I vividly remember. I imagine there have been other incidents over the years. The first time that I was told it was ‘all in my head’ it was actually in my ovaries—more specifically, an ovarian cyst that had ruptured. The next time, when I was experiencing unbearable pain and thought it might be another cyst, I was told I must be suffering from stress and anxiety attacks that were raising my blood pressure, because the doctor could find no other cause; I was actually passing kidney stones. The third time, when I was so weak I could hardly move, I was told it must be “one of those female things—like chronic fatigue.” While chronic fatigue is indeed a very real “thing,” what I had was a horrific viral infection.
This time, well, this time was even murkier. Prior to last November, I posted regularly on my I Am Subject blog. Yet I haven’t had the energy to post since then. And if you read my last post, written immediately following the election, you know that as a passionate advocate for girls and women, and simply as a human being, I was devastated by the result. As I wrote in that post, I was left without hope. The grief that coursed through my body was overwhelming. For a short time, I stopped eating. I couldn’t sleep. My heart ached. I suffered intense anxiety each time I watched or read the news. The day after the inauguration, I happened to be flying home from Florida, making a connection through DC. I had caught a horrific cold while on vacation, likely due to the fact that my immune system had become so compromised. On the flight out of DC, the plane was filled with hung over inauguration attendees. I was in agony from both my illness and their ongoing bigoted commentary. I remember wishing my head would just explode and get it over with.
Be careful what you wish for.
As the plane began to descend for landing, I felt excruciating pain in my left ear. “Well,” I thought, “maybe my wish had come true.” It took me six more months to discover that, in a way, it had.
I never seemed to shake the January cold completely, and in April, I developed what appeared to be a bad ear infection. My primary care doctor prescribed antibiotics. When the ear didn’t improve, she ordered a stronger antibiotic. In all, three rounds of antibiotics didn’t seem to touch whatever was going on in my ear. The ear continued to feel full, and my hearing was diminished. I was experiencing that feeling you get on a plane right before your ears ‘pop’—but mine never cleared.
At that point, I was told my eardrum had retracted. I was instructed to use Flonase and Sudafed, and was given a referral to an ear, nose and throat doctor. When I called the specialist at the beginning of June, I was told I could get an appointment in October. In the meantime, my symptoms became frightening. My voice began echoing in my head. When I brushed my teeth or chewed food it felt like a jackhammer; sound was increasingly magnified in my head while I had trouble hearing sounds around me. I began to lose my balance. My vision felt ‘off,’ and then my entire left side became weak and tingly.
The first time I ended up at the ER, I was convinced I was having a stroke. After waiting for twelve hours in ER purgatory, I had an MRI, which showed fluid in my mastoid air cells (I didn’t even know I had mastoid air cells, never mind what they were or where they were located). No one seemed concerned. The doctors believed too much Sudafed had caused my symptoms: “Stop the Sudafed, take Ibuprofen, and you will feel better,” I was told.
Instead, my health continued to decline. I had now lost a significant amount of weight because chewing had become a nightmare. I was struggling to think clearly. My primary care doctor grew concerned enough to test me for Lyme, mold allergens, and temporal arteritis. All of those tests came back negative. My visit to the ER did get me moved up on the specialist list, and in early July, I visited the ear, nose and throat doctor. He decided to put a tube in my ear to drain the fluid. While he assured me that this was no big deal, when he went to ‘vacuum’ the fluid out of my middle ear, I experienced such extreme vertigo that I nearly passed out. He was unconcerned, told me I was fine to drive home, and said that I should no longer suffer symptoms.
Instead, my symptoms worsened. I had the tube inserted on a Friday. On Tuesday, the pressure in my ear had increased, and I woke up with blurred vision in my left eye that took over an hour to resolve. The ENT doctor put me on high dose corticosteroids and anti-inflammatories, and then referred me to the dentist for possible TMJ and to the eye doctor for vision testing. I did not have TMJ, macular degeneration, glaucoma, or cataracts. My optic nerve was healthy. Yet just eight days after the tube was inserted, I wound up at a different ER, once again believing I was having a stroke.
After reviewing my MRI results and listening to my list of symptoms, the ER doctor decided to do a CT scan. He determined that I did not have mastoiditis. He informed me that stress could impact the body in unimaginable ways, and perhaps I wasn’t handling my life stressors well. He also wanted to be sure it wasn’t Multiple Sclerosis. He called the larger ER (the one I had previously spent twelve hours at), spoke to the doctor there, and then assured me that if I went there they would get me right in for the MRI. Instead, I was thrown back into ER purgatory, and after another seven hours with no test, I checked myself out at 12:30 am.
I did have the MRI done the following week. The results indicated that I did not have MS, but it was likely that I did have mastoiditis. The doctor on call who reviewed the report put me on Amoxicillin, the very first antibiotic I had been prescribed months earlier.
By chance, the very next day I was scheduled to travel to Colorado to visit my son. The on call doctor told me it would be safe to fly since I had the tube in my ear. When my son picked me up in Denver, I had him drive me straight to my ENT doctor there (whom I had seen for years prior to my recent move to Vermont). He ordered a CT scan of the temporal bone with contrast, which is the test to confirm mastoiditis—a condition that should never occur unless a middle ear infection goes untreated.
The scan was completed on a Friday. The doctor on call who reviewed the results left me a voicemail telling me I did not have mastoiditis, so I had no need to worry. Not satisfied with that assessment, I drove to the imaging office and asked for a copy of my report. I went out to my car before reading it. It confirmed that I did not have mastoiditis. However, it raised another, even more frightening potential diagnosis that the on call doctor simply ignored: “Significant thinning of the superior semicircular canal bony covering which could be seen with semicircular canal dehiscence. Correlate for associated symptoms.”
I sat in my car and Googled superior semicircular canal dehiscence. Then I put my head down on the steering wheel and sobbed—out of both fear and relief.
I spent the weekend learning more about SSCD than most people will probably ever know. A doctor at Johns Hopkins only discovered the condition in 1995, and there are very few specialists who have the skills to repair it. Essentially, a third ‘window’ or hole has opened up in my inner ear. We all have two holes in our inner ear. When you add a third, it wreaks havoc on your brain and your body, particularly affecting hearing and balance. By the time I had my follow up appointment with the ENT doctor in Colorado on Tuesday, I was prepared. I was sure he would recommend the best course of action, and coordinate my care. Instead, he walked into the room and nonchalantly dismissed my concerns: “I wish radiologists wouldn’t scare patients like that. You don’t have SSCD. No one gets SSCD.” I asked him if he had reviewed the CT images. He said he had not. I went over my symptoms with him. He told me those were simply due to the tube in my ear. I would be fine.
He dismissed me.
And I got angry.
In the last blog post I wrote right after the election, I stated that I wished I had felt hopeless and then angry, because anger was much more constructive. I could have done something with my anger. It is difficult to do anything when you are left without hope. This time, I didn’t feel hopeless. I was just angrier than I have ever been, and so I got to work. I obtained copies of all of my images and reports and sent them to the four hospitals in the country that have the best reputation for SSCD repair: Johns Hopkins, Massachusetts Eye and Ear at Harvard, The Mayo Clinic, and UCLA. The first three hospitals were slow to respond, and could not get me an appointment for months. The neurosurgeon at UCLA, Dr. Isaac Yang, immediately set up a phone consult, during which he informed me that yes, I do indeed have SSCD on the left side, and the hole is likely quite large. He also informed me that the chances are high that I have it on the right side, too. At the very least, I also have thinning bone on that side.
After listening to me and answering all of my questions, he connected me with his care coordinator, who scheduled an in person consult later this month, as well as a surgery date. I have already received all of my pre-surgery information, and have booked my flights and lodging with the care coordinator’s assistance. I have watched all of Dr. Yang and Dr. Gopen’s videos describing the minimally invasive craniotomy they perform as a team to repair SSCD. I have viewed UCLA’s pre-surgery video and post-surgery instructions. Dr. Yang and I now follow each other on Twitter and Instagram.
I know this post is lengthier than a blog post should be, but I needed to provide all of this background in order to make my point. Yes, this is a rare condition (one in half a million), and doctors who don’t know what it is can miss it. But even when the diagnosis was there in black and white, I wasn’t heard. While all patients can experience doctors who do not listen, it is important to note that doctors dismiss women’s symptoms at an alarming rate. Click here to view a video that details the frightening outcomes that often occur when women’s symptoms are ignored.
There are numerous lessons to be learned here. First, doctors should be open to thinking and researching outside of the box. They can do a Google search of symptoms just as easily as I can in order to find what they might be missing. Second, as a patient, please don’t give up. Listen to your intuition. If you can, do your own research. Click here to read an article that is a promising example of how patients with a rare condition made their own diagnosis because others had shared their stories and experiences. It is one of the primary reasons I am sharing my own story. Above all, advocate for yourself, because you are worth it.
I plan to continue posting about my own experience of living with and treating a rare medical condition, and I hope you will follow along on what has become, for me, a fascinating journey.
Have you ever been dismissed by a physician? If so, I hope you will consider sharing your experience in the comments section below.
This Post Has 8 Comments
I am reading this and I am in tears. First, tears of compassion for what you have been through. Secondly, tears of anger for the disrespect you and so many of us experience regularly…in medical offices…in businesses…in relationships….in SOCIETY..::in countless places where all we want is to be HEARD.
I’m so sorry you are experiencing this. And I applaud you for taking the reins, for advocating for yourself, and for demonstrating what it means to be powerful.
Thank you, Stephanie. Yes, we all deserve to be heard, yet so often we are denied that simple level of respect. Especially when we are ill or vulnerable in any way, it can be so difficult to find the strength to self-advocate. But we must–and if possible, we need to advocate for one another. Thank you for your support.
I was constantly getting sick in high school, no energy. For two years, the doctor said I had chronic fatigue syndrome “or something”. They kept telling me it must just be depression. I eventually demanded a Lyme disease test, and lo and behold, I had a raging case.
One of my closest friends, the woman who stood next to me at my wedding, had Pulmonary Hypertension that went undiagnosed because the symptoms can be caused by so many other things. Despite being a formerly healthy, active woman who became weak and had no energy, despite being a highly educated woman who can advocate for herself, it took a year for them to diagnose and treat it. It’s a fatal condition (she went to my wedding and I went to her funeral), and that’s a year that she probably would’ve lived differently if she’d known time was ticking.
Like you, she only finally got help because she researched, read loads of peer-reviewed journal articles, and diagnosed herself and travelled to the best doctor for that condition. We shouldn’t have to work so hard to be heard.
I apologize that it took me so long to approve your reply. I had surgery and have since been recovering, so I was not checking the email on my site. I am so sorry that you had to go undiagnosed for so long, and heartbroken to hear what happened to your friend. Yes, if I had not advocated for myself, followed my gut instinct and reached out to surgeons on my own, I never would have received treatment. While I am still not sure that the surgery was successful, at least I had that option. And you are right–I shouldn’t have had to fight for it. No one should. Thank you for taking the time to read and reply to my post.
I am having many of the SSCD symptoms you described and stumbled on your post while Googling for ideas on what could be going on. I am curious, a year out now, what your thoughts and results are from the surgery.
Hi Chuck. Unfortunately, surgery did not provide the relief I was hoping for, and I ended up with additional symptoms. My best advice is to do as much research as you can, and if you opt for surgery, go with who you feel will provide the best possible chance for a positive outcome. I am wishing you the best!
Hey Dianne, Thank you for putting this out there and for your outspoken attitude toward systems that don’t always function the best for everyone. My wife has had a unusually similar experience (I can’t believe there are so many variables in common) as you describe here. We have actually followed a similar path and have a online consult set up with Dr. Gopen this week (we live in NC). I sure would appreciate being able to hear about how the process has gone for you and also if there is anything you can tell us that you wished someone would have shared with you. When my wife found your blog post she was overcome with emotions and encouraged a great deal, thank you for that…
Hi Blair. Thank you for reaching out. I am going to reply to you in more depth via email.