I’ve been so focused on functionality, I’ve yet to totally deal with things emotionally since my surgery and its aftermath. As a result, it doesn’t take much to make me cry these days. I had no hope avoiding tears watching the story of blind pole-vaulter Charlotte Brown, and yet, all she does is give me hope: http://es.pn/SIlna4
Love this. Thank you!
3 months ago I shuffled into a hospital with bouncing vision, the aid of a cane, and a brain that was consistently forgetting things. With a shaky hand I signed my name off to the surgical risks of brain damage, paralysis and even death. Crazy enough I will do it once more. Despite all that, I now feel more fortunate than I ever was before. Because before being diagnosed with SCDS I took so many basic and simple things for granted. Today, with one surgery behind me, and another in my future, I am appreciating the narrow window of time that I am in.
There are few things in life that can make your attitude hit the “reset button” but after living some if my life in the way that an isolated, disabled person lives, I feel find that my outlook on life has certainly been reset. In the months…
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So, long before I was an SCDS suffer, I was diagnosed with Celiac Disease, which is essentially and intense allergy to gluten — most commonly found in wheat, and wheat-like grains.
One of the symptoms of undiagnosed Celiac is a severe loss in bone density to poor absorption of minerals. As a 35 year old male who was at the time a marathoner, I developed osteoporosis in my hips! I’m not convinced that Celiac may have been a culprit in thinning of my tegmen and directly related to my Superior Canal Dehiscence. If the bones in my hips thinned, why not those thin bones in my head?
I’m telling you all of this because very good friends of mine, and very talented Chicago filmmakers, are making an important documentary about Celiac Disease (as I hope to do for SCDS, maybe even with their help), and they need whatever support we can muster for them. Watch the trailer linked below and you’ll see me there, and let me know if I can get you any more information. Please spread the word!
When I first joined support groups on Facebook, I’d panic at every side effect or bad outcome I read about, when it came to Superior Canal Dehiscence surgery. A wise woman in one of those groups told me to remember that all of the folks with good outcomes had moved on with their lives, and didn’t have time to be checking the boards all f the time. That made sense to me, but only about two weeks ago.
I’ve been back at work for three weeks and feel like I’m tuning in much better than before, and getting stronger. I’m not to where I was this time last year before my symptoms began, but I’m getting through my days fairly well now, and my work days on campus are quite active and stimulating — physically and mentally. I must also say, that for reasons unrelated to SCDS, my last two weeks have been emotionally stressful, and my response to that stress is drastically improved from the worst days of my symptoms.
The best news is this. I had to teach my daughter to ride her bike, which necessitated running along side her as she rode for brief stretches. Then, trying to keep up with her as she went around the block. If you read My SCDS story, you’ll note that I was a runner before this all went down. In fact, a month before I became severely knocked out, I finished a 5K in about 27 minutes — my best time ever. Well, that jogging with my daughter, led me to think I could run again, and I’ve started back without too many problems. I run one minute and walk three, and can cover two miles that way in under thirty minutes. My fastest mile is 13:48. I have five minutes to shave off, but I’m thrilled to be running again.
I mostly stare at the ground, but try to challenge myself and raise my head to hold the horizon every several seconds, and the bounce seems to be improving. My legs are sore, naturally, but not just from the exercise. My lower back, neck, and outside leg muscles continue to be severely stressed by my new balance situation, so I’m at the Chiropractor and message therapist at least once a week.
The dizziness still comes, but only slightly, and it’s very manageable. I’m starting to believe it’s from my unrepaired side. Two milligrams of Valium each night before bed help with that. My balance is good. I’m no late-life gymnast, but I can walk a balance beam front to back, then do it backwards, then turn and repeat without touching the floor (most of the time).
Noisy, stimulating environments still wear me out, though. And my hearing has not improved in my repaired ear. I may never know why this happened, when so many people report better hearing post-op. Right now, I’m trying to get the most out of every day and enjoy this good period. Because with the other side unrepaired, and potentially unable to be repaired due to the possibility of complete deafness, I can’t be sure how long it will last.
Here’s a picture of me attempting a (very short) long jump for my two kids:
So it’s been a while. Two weeks, in fact. I needed to take a break, I think, from writing the blog.
I had two goals when I started this — 1) to give curious, concerned friends and family one place to go to get information on my situation, and 2) to document my story for others who may be suffering from Superior Canal Dehiscence Syndrome, and considering what to do about it.
It’s hard to not feel like I’m complaining all the time. There’s a fine line between “documenting” and hosting a pity party in situations like this, and I felt like I was trending toward bitching.
I’ve realized in the past two weeks that I’m in for a roller coaster ride. Just as I was getting used to the tinnitus and severe hearing loss in my right ear, and thinking “I’m not thrilled about it, but I can deal with this,” I started to relapse into the same old symptoms. Swimmy-headedness (the medical term, not to be confused with dizziness, is “giddiness”), brain fog, fatigue, and pretty severe muscle soreness on the stabilizing muscles of my left leg. Essentially, the piriformis, hamstring, IT-Band, calf and ankle. The reason for this, I’m told, is that my left side is doing lots of work to compensation for the balance problems on my surgically repaired side — especially when I do balance exercises, which is almost constantly. So I’m laying off that for a while and going to a chiropractor, while seeking extra PT for the muscle issues.
The cognitive issues come and go. It’s hard to pin down what causes them, but they only just began about ten days ago. Is it the weather? Sinus trouble? Is it the dehiscence in my left ear? Is it the healing/damage from the surgery? Does the craniosacral therapy help or hurt? I can’t tell. I don’t know. It sucks and it’s scary. My greatest fear was to go through this traumatic surgery, suffer some kind of significant side-effect, and then learn I’m not even better than I was before. Right now, that’s seems to be the situation as best I can tell, but I’m trying to fight through it and live as normally as possible in hopes that with time it will all improve. Folks tell me the recovery can take up to a year. Folks tell me to be patient. That’s a recurring theme.
I can walk up to 2.5 miles now in about 36 minutes, I’m heading back to work on Tuesday, and while I get really tired really fast, I’m hanging in there most days. Laying down for twenty minutes helps reset and calm things down, so there will be a pillow in my office going forward. I continue to see my fantastic vestibular therapist, who is now working with me to steady my vision while walking — so my field of view doesn’t bounce quite as much. It’s interesting work.
So, that’s where I am. A bit of good news creatively and professionally have lifted my spirits, as has the success of my Kentucky Wildcats in the NCAA tournament. I’m going to try to get back to writing here more, and also buckling into the SCDS documentary I’ve started.
Thanks for reading!
I’ve been here before. Renay’s story of getting diagnosed with SCDS.
I have four sessions left on my first post-op PT prescription (we’re asking for more), so we did a little testing today. I’m up several points on the rating scale from where I began one week after surgery. As of today, I can:
- Stand on one foot, both sides, for 60 seconds with eyes open
- Stand pointed (one foot directly in front of the other, heel to toe) for 60 seconds with eyes open and closed
- My gait has returned to normal, and I don’t wobble looking from left to right or from up to down as I stride
- I don’t need handrails on stairs
- I can walk over a mile
- BUT, I cannot stand either foot with eyes closed for more than a second or two. I tip over immediately.
All in all, not bad in the balance department.
Early mornings, just after waking up, I tend to get swimmy helping the kids get ready for school. Doing computer work for more than an hour gives me a thumping headache. My skull is suddenly very sore these past two days, too, which effects my sleep — as does the tinnitus. Blah, blah, blah.
The biggest issue is that I’m a perfectionist. Always have been. I know I’m going to have to find a way to get over this, but the hearing issue bugs me a lot psychologically. It’s not just the fact that I can’t hear out of that ear, and that what I do hear is annoying, but it’s the knowledge that something is wrong, broken, not right — that drives me crazy. It forces me to question everything. My decision to do the surgery. My choice of surgeon. The type of procedure. My recovery protocol. The smallest little thing like accidentally picking up my son after I cam home, or that time I burped and it hurt my head, or digging out the storm drains with a hoe. All of it. Did I do it? Could I have made a better call? Why me?
Self-pity ain’t cool. And it’s stupid to obsess over these things, I know, when much of my recovery is going well. Nothing can be done about it. But right now, for me, the obsessing is unavoidable. I’m hoping getting back to work in two weeks will push all of this back some and give me a little peace.
I actively seek out perspective now. Like this story, about a 12 year-old boy from New Zealand who is slowly going blind and wanted to see the Celtics play while he still could.
…at this very moment I was under anesthesia. Seems like both an eternity and no time at all.