Superior Semicircular Canal Dehiscence Syndrome

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Superior Semicircular Canal Dehiscence Syndrome
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    Receiving a Superior Semicircular Canal Dehiscence Syndrome Diagnosis

    By my 20s I was sure something wasn’t right. I often felt nauseous and unbalanced, and over time it had a very dramatic effect on my confidence. As a researcher for a book publisher, I regularly worked in the British Library, which I loved. But I began to dread the walk from my desk to the central collection area. The sounds of trolleys moving books around or shelves being re-stacked seemed to cause a feeling of unsteadiness and anxiety. I put this down to some sort of panic attack. The same sensations gradually extended to other environments and fluctuated wildly, which added further confusion. The problems with balance, anxiety and a general feeling of something making me feel unwell were difficult to deal with as they couldn’t be attributed to anything specific. For years, the condition affected my behavior at work, as well as my social relationships. Then in 2003, when I was in my 40s, a sharp change of pressure during the descent at the end of a flight triggered the full range of symptoms. The inside of my head felt like a balloon I badly needed to burst. It took me four years to get a diagnosis (in part due to a lack of awareness among doctors), and over that period my symptoms were subtly changing. The headaches were becoming severe, the nausea persistent, my vision was often blurred, and it was extremely uncomfortable to raise my voice, sing, or even eat crunchy foods. All those sounds reverberated inside my head. I had great trouble hearing people in noisy surroundings, and yet I was also hypersensitive to certain sounds such as a banging door, my dog barking, or a spoon clattering on the floor. I had no idea that my years of unsteadiness were directly linked to these new problems, and that the long-standing creaking noises in my neck or the clicking sounds from my eyes might be significant. As time progressed, I also had quite severe tinnitus, with terrible whooshing and thumping noises in my ear. Everything had a knock-on effect on my brain, affecting my memory and concentration. During this time, I was referred to a consultant to be evaluated for patulous eustachian tube, an unusual condition where the tube connecting the inner ear to the nasopharynx doesn’t stay closed. By this point, I was having frequent freeze-on-the-spot attacks of vertigo, and I no longer felt safe driving. My life was already a complicated one, caring for my child with a disability, and I felt I could no longer cope. After a CT scan, I finally was diagnosed with superior semicircular canal dehiscence syndrome (SCDS), a balance disorder. It is a developmental anomaly, present in one to two percent of the population. Occurring during the first three years of life, it is thought to be caused by a lack of bone growth in the uppermost balance canal of the inner ear, which can cause a tiny hole to develop. In roughly 50 percent of cases, this occurs on both sides of the head. I was referred for surgery, which should have set me on the path to improvement. Unfortunately, the surgeon tried out a new method for the procedure. I came out in a worse state, with terrible vertigo and pain. After 18 exhausting months of trying to get things put right in the U.K., I went to see the world’s most experienced specialist, Dr. Gianoli in Covington, La. He established that the SCDS was in fact bilateral and also explained all the anxious years: “Panic attacks are the result of too much of a particular chemical (adrenalin and adrenalin-like chemicals) surging through your bloodstream. Abnormal vestibular stimulation is a common trigger for their release.” He performed revision surgery on my left side. This was an easy choice for me, as the condition had taken control of my life. But there were serious risks to consider, including hearing loss and nerve damage. These operations aren’t an overnight fix; the brain has a lot of adjusting to do. My right side was successfully repaired in 2012, but I still have whooshing noises from pulsatile tinnitus. The left side unfortunately remains problematic due to a rare nerve syndrome linked to the SCDS, and I continue to manage ever-present symptoms from that. For those seeking to establish the cause of their dizziness, I would say first and foremost know that you are not “crazy.” Put out of your mind what many doctors may have said to you. There is very basic wiring in the brain that links dizziness to panic, and researchers are getting closer to identifying the neural pathways involved. In the case of SCDS, the relationship between anxiety and imbalance revolves in a vicious circle. I’ve found the word “dizziness” doesn’t have a precise meaning in the health care world. Since it incorporates a myriad of symptoms, be sure to be very specific about what you are experiencing, whether it’s light-headedness, spinning, nausea, feelings of non-reality, unsteadiness, faintness or severe vertigo – any or all of them. Never give up. Be persistent. If necessary, keep changing doctors until you find one that gets to the root of the problem. In my experience, for more accurate diagnoses, a neuro-otologist is the best person to consult. An invisible condition of this kind can be hard for other people to understand, and it is vital that public awareness is raised. Not everybody who has the anatomical defect is symptomatic, but it is estimated that approximately 15 percent of patients with chronic dizziness could have SCDS, with many undiagnosed or misdiagnosed. If you need additional support, please visit SCDS Support. Remember, it is a complex condition, identified only in 1995. In other words, there is still much to learn about it. My memoir “A Hole in My Life” (to be published at the end of May 2016) addresses these issues. The medical information it contains within the narrative has been authenticated by two ear and balance specialists. Most people have never heard of SCDS and certainly have no idea how difficult it is to live with. The holes in the bone may be tiny, but their effects are far-reaching. Philippa and her son. Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional. Philippa’s book on her SCDS experience, “A Hole in My Life” can be found here. The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Katie Melody

    Suicidal Thoughts at the Emergency Room Were Ignored By Doctors

    As with any chronic or mental illness, you may find yourself in the dreaded emergency room more times than you may like. Recently this has been more than enough for me. On several occasions it was for my chronic illness. I had a setback and had to discontinue a medication that had been keeping my idiopathic intracranial hypertension (IIH) at bay and my life somewhat “normal.” Most of these visits were your regular blood work, looks OK, keep doing this, discharge, follow-up-type deals. But on my last visit something interesting happened. Along with my two chronic illnesses (IIH and superior semicircular canal dehiscence syndrome), I also suffer from bipolar disorder. I also happen to have some major depression and issues surrounding the fact that my IIH has caused me round-the-clock searing, burning pain behind my ears for three years straight with almost no relief. So this past week, I said to my husband, after speaking with my therapist on several occasions, that I had been having thoughts of death and I may need some extra help. I had no suicide plan, I had no notes, I had said no goodbyes. But with this thought of “the only way out of this never-ending pain is death,” it was finally starting to sound like a good idea. I decided it was time to go back to the ER. I was having intense pain in my head, visual symptoms and increasing thoughts of suicide. Once at triage I told the triage nurse about my diagnosis of IIH. I told him my neurologist’s strict orders that if I was having any visual issues that I was to come to the ER and he was to be called (my neurologist happens to be contracted with this hospital). I also then proceeded to tell him that I was having suicidal thoughts. He then asked if I had a plan, I told him no.  He asked if I would like some help with that… To which I replied, most certainly… as if it were a question. I was then sent back to the waiting room. Thirty minutes later I was called to a smaller room where I waited 20 minutes to see a doctor. I proceeded to tell the doctor the same information I told triage. I then told her I was having suicidal thoughts and would like some help for that as well. She seemed to acknowledge what I was saying, and said the nurse would be with me shortly to start some medications. I then saw a nurse to start an IV and some medications. I then told the nurse about my suicidal thoughts, and that I needed to speak with someone. I seemed to come across a blank stare. Before I knew it was I being discharged — no call to my neurologist, no call to a mental health worker, no call to the local mental health facility that contracts with all of the local hospitals in my city. Our hospitals keep mental health workers on staff and they need to be called in. I was able to call the hospital and file a complaint. They assured me that this was not protocol, and that it would be handled. I am not sure that this is the end of my complaint, and I am not sure that I won’t take my complaint further. What I do know is that I kept in contact with my therapist the entire time via text and my husband was with me the entire time. I was not left alone, I was able to stay safe, I was able to come home, remain safe and follow up with my therapist and start a treatment plan. I was able to come out of this knowing that this was not my fault. I am a sad, though — sad for myself, sad for others who reach out for help and are met with blank stares, or the eyes of those who think, This woman looks “sane,” or She surely can’t be suicidal, or She isn’t running naked down the halls, so she clearly is not a threat to herself or those around her, just by looking at what I am wearing, or that I have makeup on, or my hair has been washed. I asked three times for mental health help, and three times I was denied basic care. Something has to be done to fix this system when a simple emergency room cannot handle one of the largest emergencies happening in our country today. If you or someone you know needs help, see our suicide prevention resources. If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255. The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo by Thinkstock Images