Tag Archives: vestibular therapy

One Year Ago

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.

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Vestibular Therapy Update, and Post-Op Obsessions

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.

Writing, Rehab and Ego Subversion

When you’ve run and ridden in races across hundreds of miles, your brain doesn’t forget what you’re supposed to be able to do. It’s like this: once you’ve run a marathon, no matter how out of shape you are, a three mile run doesn’t sound like a big deal, even if you’re in no condition to do it at the moment. I love how the human mind does that. We adjust to scale and scope based on our experiences. Tasks don’t seem so hard when we know we’ve done harder things. And yet, that creates another problem. An Ego problem. And that’s where I struggle with rehab.

After my first full vestibular rehab session yesterday with Jennifer, I’m really sore, tight, and tired (though naturally, I repeated the whole workout this morning at 6:30 AM).  One-leg stands, walking on tip-toes and heels, cross-stepping: all that stuff is crucial to the recovery of my balance, and it makes me tired, and yet it is nothing like racing 100 miles on a bike over hill and dale in Kentucky. I’m clearly struggling with scope and scale.

So it’s medicine time.  I teach my writing students to swallow their egos in an effort to make the best product they possibly can at this moment in time. I think what holds for writing also holds for rehab. I have to learn to do the work I can do right now with an eye toward where I’m going, and think less about where I’ve been.

Dyna-Discs: the angels and devils of my rehab.

Dyna-Discs: the angels and devils of my rehab.

Vestibular Therapy

As I’ve noted a few times in previous posts, I’ve been undergoing vestibular therapy since August. For most of that time we had no real idea what was wrong with my vestibular system, but we were sure that it was pretty effed up. I was also experiencing muscle weakness,  a ton of stress, and chronic fatigue.

The balance retraining exercises helped me immensely. They were often frustrating and exhausting, which I personally found a bit demoralizing, as at various points in my life I have competed as an endurance athlete — running marathons and racing bicycles over long distances.  So, to be worn out by standing on one foot for thirty seconds kind of broke my heart and pissed me off. But, like with anything I stick with and practice a lot, I improved.

My therapist is a goddess. This is true. And the biggest impact she made on life — keeping me functional — involved craniosacral therapy and massage. Craniosacral therapy is essentially a very gentle massage of the skull using a soft touch on certain pressure points. It’s not in the slightest bit painful — in fact, I sometimes fall asleep because it is so relaxing. This therapy functions to relieve pressure in the skull, which for me was a HUGE problem in my undiagnosed SCDS. My vertigo improves, the pressure in my ear and skull decreases, and my stress level goes WAY down. And let’s face it, SCDS stresses the body in dozens of ways.

Eventually, my neck and upper back were so tight and contorted from the strain of trying to stay upright that she began a massage process after the craniosacral therapy, and within two visits my headaches and back pain had disappeared.

I went for therapy twice a week for about five months, and was able to work, drive, travel, and have some very good days despite the SCDS. And after a bad day with terrible symptoms, the therapy would set me straight again. Now I go as needed. I CANNOT recommend it highly enough. This is a maintenance process, not a cure. And, without great insurance, it could certainly be expensive. Fortunately for me, I only had to pay about $12 per visit — which is basically made up by the coffee and bourbon I can no longer drink.

If you happen to be in the Chicago area suffering from symptoms of Superior Canal Dehiscence Syndrome or any other vestibular problem, I urge you to give her a call.