I’ve been feeling a little remiss in not having posted a full follow-up to my Facebook post about my MF (middle fossa craniotomy) surgery last month. I feel the need to offer a bit of a progress report, having just passed 5-weeks post-surgery, considering all the thoughtful concern everyone expressed, and to maybe shed some light on the experience for others who may be dealing with Superior Semicircular Canal Dehiscence.

My recovery has been steady and, according to my Doctor, predictable. Hearing is gradually returning to my left ear as the fluid and blood (from what they tell me) dries up. There continues to be dizziness with fast side to side movements, such as turning over in bed, or getting out of bed or standing up too quickly or raising my head when reaching up to put something in a high cabinet for instance.
Since I woke up from the procedure, there has been a constant buzz/whoosh in the operated ear which occasionally turns into a ringing. When I relax it seems to abate – thankfully! I am praying this is a post-op phenomenon and not a permanent new symptom.

I have only recently (last couple weeks) begun test-driving fully using my voice and singing full-out, but it seems that the autophony, my most troublesome and steadily worsening symptom, is mostly resolved. To be truthful, I have been hesitant to really test it; I know that seems sort of crazy given how maddening this has been over the last few years. I have been nervous that a loud volume might disrupt the healing, or pop the plug! (Some people do experience onset of original symptoms after a loud noise.) I guess it is also because I am afraid of of finding out that the surgery, after all, did not work.
However, I have been slowly trying it out more and more: vocal warmups with students, singing and goofing around with the girls, and even recording a vocal track for a client I am arranging/producing a song for. Fingers-crossed, it seems pretty good. Of course, though, its hard to tell, what with the left ear still being somewhat “clogged” and full-feeling, which can also cause that sensation of hearing one’s self too loudly…So whether this symptom will be fully resolved or not remains to be seen, but I remain hopeful!

Same with the dizziness – I do experience it in general, as is normal post-op as I mentioned; but it does not appear to be triggered by the singing/vocalizing. Again, I have been treading lightly. Fingers still crossed… Someone posted a question in the SCDS Facebook group today about how long these sensations (ear clogged, ringing, dizziness) last for others who’ve had the surgery, and the responses were anywhere from 8 weeks to 6 months (and beyond).

Other post-op phenomena: still hard to open jaw wide enough to eat a sandwich, and there is still a bit of pain when I attempt it. The skull on that side still feels a tad numb, but that is slowly going away. The scar of the incision itself is healing steadily and beautifully – none of the reported oozing or itchiness at any point post-op. And I wish I had taken pics of the stitches and of the scar after their removal. Seemed like the work of a quilter or a master tailor! Really, really neat. And the scar runs perfectly below my hairline, completely and totally concealed. Very little hair had to be shaved. The most significant and noticeable effect is the bit of bangs Phil accidentally cut short when removing my bandage for me…

I am eager to finally return to yoga, hopefully by the end of this week but most likely with significant modification to avoid too sudden posture changes (to avoid that dizziness I mentioned with head position changes). I also need to stop indulging in all the goodies and sweets people are treating us to, and to add in some more exercise. Although the prospect of walking in this weather is not appealing (today is snowy-freezing rain…)

I have so much more compassion than ever before for those with chronic illnesses or conditions. There are so many little ways in which one is affected, that others can’t see or guess at, and it can cause a feeling of disconnection or for some, I imagine, despair. I am truly lucky in that so many with this diagnosis have far worse manifestations than I have experienced. Some report constant dizziness and falling. Some say they can no longer comfortably sit and read a book. Some experience near constant nausea. I am also extremely lucky that I had access to the amazing medical care I received at Mass Eye and Ear. I am really glad I took advantage of it, despite my initial hesitancy and anxiety about the surgery.

One other complicating factor: my Doctor confirmed that there is also a smaller dehiscence on my right side, so after the surgical repair of my left side, I could end up experiencing symptoms on my right side that had been masked by the worse side/ear. He also reported that during surgery the temporal bone on my left side exhibited the “swiss cheese effect,” being so full of holes as to present possible future symptoms. The surgical team used a bit of my skull bone to patch the holes along that area as best they could.

Thanks again for following along on this journey which started way back when (are you still reading? Wow!) and for all the well-wishes along the way. For those of you also diagnosed with SCD, feel free to leave a comment or question here or feel free to message me through
my Facebook page. Here’s hoping I will get back to some other pursuits – maybe some new songs? – very soon. See you in the New Year! Looking forward to performing a set (with my daughter Emilia!) at the the Me & Thee Coffeehouse in Marblehead in January. Maybe see you there?