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!

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3 thoughts on “Since I’ve Been Gone

  1. Pat Brown

    Hi, I appreciate reading your observations regarding the dehiscent superior semicircular canal surgery. I had the same surgery March 24 at the Mayo Clinic in Jacksonville, Florida. Unfortunately I should have read your blog first. I have had many complications from the surgery including permanent TOTAL hearing loss in the surgical ear. An extreme bout with BBPV (their words) and VERY loud tinnutis in the same ear. I did not have tinnutis on that side previously. I also have a very severe case of a feeling of fullness and echoing on that side and my overall balance is much much worse. According to Mayo my side effects are some of the worse they have seen. They will be starting my PT in 2 weeks and I just finished my steroids. A high dose over 2 weeks in hopes some of the side effects would be alleviated. It doesn’t appear to have helped yet, but like you I keep being told it takes time. I would love to hear how you are doing as time has progressed. Reading your blog made me feel like I am not alone out here. I am much worse off overall and spend my days questioning my decision to have the surgery. Thanks for letting me vent!

    Reply
    1. Brad Post author

      Pat, man, I’m sorry to hear this. I spend my days wondering whether a different surgeon would have helped, whether immediate steroids and antivirals would have helped (as some surgeons use), but I’m almost ten weeks out. I’ll do a blog post to update everyone. Yours is not the first request for news! I wish you the best and hope you keep in touch.

      Reply
  2. Jean Hibben

    Thank you for this. Yours is the first reference I have seen that connects the piriformis muscle to the scds… And it makes perfect sense. I was just diagnosed with scds but have had huge piriformis problems for years. I don’t have balance issues and now I can see a possibility that my body has been doing its own compensation, leaving me out of the cognitive activity on how to maintain balance. But your comments about knowing when to rest, calculating your battery power early in the day helps. I’m a musician and am fearing the loss of hearing. I’m still at the beginning of diagnosis and probably am not a candidate for surgery. After reading your info, I think I am ok with that. The Facebook page for scds had been a lifesaver.

    Reply

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