Laurie Rainey

Good luck and warm wishes for progress and recovery for all those out there struggling with a vestibular disorder.

Diagnosis: Superior Canal Dehiscence Syndrome (SCDS)

When I hear people  casually say that life can change in a minute I shudder at how true that really is. In June of 2010 I was enjoying a balmy weekend in wine country with my beloved husband, indulging in good food, wine, and appreciating the romance of our lives. The next morning on my way to the bathroom I was overtaken by a sudden, violent, and terrifying vertigo attack. Never having had one before I was thoroughly confused and ended up falling, hitting my head, and landing in the ER.  As my husband escorted  me into the hospital I was crying and trying to tell him that I knew in my heart something life altering and dreadful had happened. I was right.

Within five months I was diagnosed as having a rare condition called bilateral semi circular canal dehiscence. Simply put, I had no bones covering my semicircular canal and my poor brain and vestibular system were under attack. I could barely walk, my head felt like a 500 pound cat was sitting on top of it, when I stood up it felt like I was being punched in the head over and over again, I  couldn’t track in conversations, got stuck on words, and I was unable to navigate in the dark or walk down aisles at stores.  After a series of doctor visits and tests, a CT scan confirmed the diagnosis and I was scheduled for surgery  for December 2010.  I could no longer work after the first few weeks of school. I am an elementary school counselor and my attempts at walking into my school were like walking into the epicenter of an earthquake. Everything moved. I had to hold onto the walls and I looked  terrified. I’m sure I looked drunk which is not a good way to look in any elementary school. I lasted six long weeks that school year and collapsed. I  flew to LA  before my diagnosis and actually did collapse at LAX . The LAPD were quite suspicious when I kept telling them I was experiencing a “vehicular homicide” instead of a vestibular disorder. They thought I had just killed someone. The brain fog was bad that day. That was not a pleasant day for my husband  either who got the call from the LAPD stating they had his wife with them!

I had a craniotomy in December and was still trying to sneak out from my husband’s watchful eye in the hospital right up until the last minute. I was as slow as a slug so I can’t imagine where I thought I could get to anyway but I wanted to escape. I went to the bathroom about ten times before they finally put me out. The surgery went well but I woke up to new and equally terrible symptoms: migraines and tinnitus.  I still struggle with those and am currently looking at additional surgical interventions as I’m becoming increasingly symptomatic in my right ear. I no longer am able to work and have been forced to make dramatic life changes because of this condition.

I went from being an avid outdoors person, worked out daily, worked hard, played hard to being a scared weakling. I credit a wonderful physical therapist and neurologist in LA for helping me last August in gaining some strength and confidence back. I’m able to walk again, shop alone, drive, go out with friends, garden…just not in the same way as before.

I have learned many things as well these past 18 months.  Some I can share:  it’s OK to slow down, to not feel obligated to confess my condition to everyone I meet, to share openly when I‘m comfortable, to let people help, to defend, and if necessary distance myself from the few people who seem to want to reduce this condition to a mental health issue, to not let this condition define who I am.

I  also have to say that I have found a truly supportive network in a most unusual place: my neighborhood dog park. Yes it smells, my clothes are ruined, and it seems many dog owners think their pets are gifted, but nothing has been as surprisingly pleasant as an unbalanced jaunt to the dog park where everyone truly knows your name. A significant number of people who spend the day at a dog park usually have some medical malady and are ready to share. I got a lot of practice in talking about my diagnosis there and that helped get it out of my system. 

So my life goes on and I value each day, even  though the awful ones are harder to be thankful for. I think of my darling son who has suffered here with me, worried sick and trying to be brave. A good son. My faithful funny husband guides me through this. He lives in LA and I live in Salt Lake City. The distance has always been a challenge but more so now. I will move soon to be with him. Without his calm, intellect, and love I cannot imagine what would have happened. Through all this we are thankfully still in love, laughing, and committed to each other.  It’s helpful  to be deeply in love with your spouse through sickness and in health. I’m still looking for a way to minimize the sickness part so we can spend more time in wine country sooner than later.

Good luck and warm wishes for progress and recovery for all those out there struggling with a vestibular disorder.