This blog was originally written April 2014.
I recently visited my surgeon in New Orleans for a follow up appointment after my surgery. It was a bit different than I expected. Although I’m healed on one side, I’m bilateral SCDS so my right side is acting up. The more I get back to my busy normal routine, the more I notice it. I’m now well into feeling like I’m on a boat on a daily basis, getting frequent headaches, and occasionally stumbling in the evening time when my brain is no longer able to handle the coordination between my eyes and broken vestibular function.
Being that I just had surgery and it seemed to work, I thought I would be scheduling my next surgery for the dehiscence lurking deep the other ear. Alas, since my symptoms are still relatively mild, and my doctor likes to reserve surgeries for those who have no other options, we will be taking the “medical management” approach to try to alleviate my symptoms. This includes taking a diuretic, restricting any activity that would cause an increase of spinal-cerebral fluid pressure in my head, and cutting sugar, sodium, and caffeine. Let me reiterate that last part in case you skimmed it: he instructed this Seattle-based woman to give up caffeine. (Ba ha ha ha!!!)
A person can go through a myriad of emotions with this disease and after that appointment my immediate feeling was despondence. After a week or so of moping around like a child that didn’t get the big expensive toy she wanted, I’ve toughened up and decided to move on with my life — my dizzy, rocking, stumbling life– with the best attitude I can muster.
And I’ve decided to try something that is a bit nuts. I dug my running shoes out of the closet and began running again. For those of you that don’t experience SCDS first hand, this is what running is like: your vision bounces like a bad amateur video. I’m not talking slightly shaking, I’m taking something to rival the filming of The Blair Witch Project. It’s impossible for me to watch this for more than a second or two, so I look down at my feet as I run. After the run, my autophony causes my heartbeat to pound in my ears with my vision shaking in rhythm with it from side to side. So are all the visual disturbances and disequilibrium worth the running? For me, a previous marathon runner and lover of exercise… yes. But my newfound good-bad running habit is once again a reminder that for those of us living with SCDS even the little things come with a cost – and we each have to decide how much to “pay” for the things we used to love.
And the other observation: If SCDS ever reaches mainstream attention and people raise money for its research, there will NEVER be a fundraising run.
We will all just walk.