A friend forwarded this article on a man who had a devastating brain injury and has recovered tremendously due to cognitive rehabilitation therapy, something I’m doing right now, too. I think it would be particularly useful to Superior Canal Dehiscence patients with brain fog and disorientation symptoms.
Recently someone asked via this blog if I’ve heard of anyone suffering from SCDS beginning at birth or early childhood. This story was just posted on the Facebook SCDS Support Group page. I’m not sure it’s accurate, as this story suggests, to call it a “genetic disorder,” though.
So my posts are becoming less frequent, which you and I should both take as a sign of improvement. We went to the beach a week ago, and after a two-mile walk, reflecting on storm-driven seven-foot waves, I had a revelation.
Last July, we went to the beach as well, only my symptoms were just beginning. I could barely make my way across the boardwalk. The give of the sand and sway of the waves made me incredibly dizzy. I could never stay for long before going home and back to bed.
On this last trip, however, I spent all the time at the beach I wanted, descending long, twisty stairs to get there. I walked, then swam out to a sandbar several hundred yards from shore, and stood there for close to twenty minutes — rocked by waves, watching clouds speed over head, observing the shore line. I’d say that’s improvement. I did get tired, and needed to rest for a while every day, but the dizziness wasn’t too bad.
I’m writing well — or at least concentrating well — too, which is exciting. Cognitive Rehabilitation Therapy hasn’t improved me just yet, but it has helped me to recognize clear weaknesses that I can make better. Some of it, I’m told, is just being in my 40s and not working those parts of my brain for a long time. But some of it is also due to the SCDS and the resulting trauma. I might get specific on some of this stuff once my doc tells me I’m back to or above average.
Just as an aside — tylenol makes me dizzy. Alleve doesn’t. That was a welcome discovery as my head still hurts quite often, and the acetaminophen made things worse.
Running is still a bit too taxing on my vestibular system, which bums me out. It’s the bounce. I no longer have functioning vertical gyroscopes in my head, which makes the whole world bounce when I run. Maybe that can be trained away like it was for walking, but it is going to take much longer.
On the plus side, though, I have successfully resumed yoga! Six sessions in two weeks. Last night I was holding balance poses that other people were struggling to maintain. Granted, it’s a newbie class and I’m not exactly a newbie, having practiced steadily for three years in LA, but I found it encouraging.
I’m trying to teach myself to do something I’ve never been good at — live in the moment. I’ve always been focused on the future, and too often on the past, and have struggled with the present. While my present is going well, I’m trying to live fully within it. But, I’m finding that can be as much of a struggle as learning to physically balance again. It’s hard to override years of self-reinforced programming — teaching an old dog new tricks — but I’m trying.
Finally, I have made a new appointment with Dr. Hain in Chicago to have testing done on my left side to see where it is right now. I plan to then fly to Boston and have Dr. Lee exam my new scans. I want to know all of the options going forward, and monitor the size of the holes on the left. While I’m in Boston, whenever that happens, I hope to interview Dr. Lee as the first speaker in a short documentary I’m planning to produce on Superior Canal Dehiscence Syndrome.
That’s it. Thanks for reading. I always enjoy hearing from folks, so please feel free to comment.
Today is my birthday! (Please excuse the exclamation point.) A year ago today it was muggy and rainy as it is now, and I went for six mile run which I barely finished. I had worked my way up to eight again after years off from distance running. That was the day I began to realize something was wrong, but as you can read in My SCD Story, I had no idea what I was about to face. A year and one craniotomy later, I’m still facing it — but at least it has a name now, and I have a few new tools for fighting it.
For the past sixteen days I was in Germany. I travelled with my warrior wife and two small children to a time-zone seven hours away. I got my first ear infection in my repaired ear on day one of the trip, but armed with emergency steroids and antibiotics, it was sent packing fast. I had several good days to start, then relapsed into symptoms that felt a lot like the beginning of everything a year ago. It’s the left ear acting up, reminding me of those holes still in my head.
Despite the downturn, though, and the hearing loss and tinnitus, I have a lot to be grateful for only five months removed from surgery.
The fact that I made that trip — two 18 hour travel days, hustling through airports, walking through big cities and across open country side — is pretty incredible to me.
I’m able to write on most days without serious brain fog, though cranking out a letter of recommendation yesterday with the jet lag was pretty rough. I have lots of projects cooking again which give me energy and hope. I find, for whatever reason, that pain relievers and swelling-reducers lessen the pressure that builds in my skull over time, as does sleep, so I’m hoping to find a healthy balance there. Can’t live on tylenol, I guess. I’m also beginning Cognitive Rehabilitation Therapy today, hoping to sharpen up and take the fight to memory loss and brain fog. Taking consistent breaks from the computer screen every 20 minutes helps, and forces me to waste less time. Avoiding stress, or coping with it well, helps, too.
I worked in my garden for two hours yesterday, which was necessary given that it had been neglected for over two weeks. I can walk a couple of miles at a time. Occasionally I can jog if I keep my eyes on the ground and not on the bouncing horizon. My legs get tired really fast, and bending up and down makes me dizzy, but avoiding those kinds of situations won’t make it better, and does not teach the brain to adapt, so I plough through it.
With consistent stretching, I think I’m learning to manage SCDS’ power to twist my body into painful knots. My neck, shoulders and left hip/leg are still problem areas, but I’m working on it with PT, VRT and Yoga. I stretch a lot, and spend a lot of time and money working for equilibrium these days, but I’m lucky to have these options and opportunities.
I’ve learned that sodium, caffeine, alcohol, and sugar make me feel worse. Add that to my gluten free diet from Celiac Disease, and the fun food options quickly become limited — but also more healthy in the long run.
My loving sister-in-law is an incredible audiologist, and she is going to be able to get me a great deal on cros hearing aids if I want them. I’m still trying to decide if I need them yet. I feel the loss at work more than at home, so I probably should. The neuromonics tinnitus therapy is still a bit out of our price range, and while it’s bothersome, I’m coping with that fairly well most days.
So, as I gain a year today, I’m hopeful but not content, inspired but not naive, and better but not well. I may never be all of what I was, but I can try to be the best at what I am now.
I saw Dr. Wiet yesterday for my four-month review. Mostly though, I saw his audiologist. It’s official. My right ear hearing loss is permanent and profound. What I do hear is unuseful and distorted. The tinnitus is likely to stay, too, and has been deemed at the upper end of the moderate range. We talked about neuromonic therapy and cros-aid hearing aids, but at an uninsurable $8,000 price tag for both combined, that ain’t happening any time soon.
He told me to get on with my life. But I still have a lot of “good ear” bilateral SCD symptoms that make my days unpredictable and my weeks uneven. Loud rooms are difficult. Whispers almost impossible. The limbic system of the brain is in a constant stress cycle due to the tinnitus, as the brain creates the sound itself to make up for the loss, but then perceives that sound as a threat, activating the fight or flight stress instincts and causing constant edginess and mental fatigue. I think I’m dealing with all of that pretty well. It’s the hearing that bothers me the most. And worrying about my left ear going bad, too.
I need a new plan. Insurance does at least cover the cognitive rehab, since we’ve met max out-of-pocket, so I’m hopeful about that.
A blog post by my friend and Editor, Jeanne V Bowerman, that I find to be apropos for those of us dealing with fear.