Tag Archives: craniosacral therapy

Since I’ve Been Gone

Hey everyone.

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!

Craniosacral Therapy

Updating a previous post about my vestibular therapy experience as it pertains to symptoms of superior canal dehiscence syndrome, what I called “manual manipulation” is actually “craniosacral therapy.” A few folks have asked me about it since I professed how much help it was to me in remaining functional before my diagnosis, but I had the name of the therapy all wrong and wanted to note the correction. I’ve added my PT to my links, under “My SCDS People.”

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.