Today marks my first ANniversary for my translab surgery with Doctors Friedman and Schwartz at UCSD. I’ve documented my experiences in the months after the surgery, but it has been quite some time since I last posted an update. Generally, silence is a good thing, but I also got so much value out of this forum prior to my surgery that I want to share my experience since as it has generally been very positive. Far too often we can scare ourselves here reading about all the terrible things that can happen, so a positive story is good for perspective.
First, I continue to be so impressed with Dr. Friedman’s responsiveness and the support of his team. After a year, he still responds quite quickly to our text messages with questions and concerns (often caused by a local ENT who isn’t well versed in the condition and who I used to see for some follow up). In the year since my surgery, my life has returned to my new normal. My balance (which was the most important thing for my given my active outdoor lifestyle) is back to 95% of my pre-AN state for which I am so grateful. I have resumed all activities except mountain biking (I hope to get back there soon), and my fitness levels have returned to their pre-AN peak as well. I no longer have hearing in my right ear which is something more in the category of annoyance than anything else. In one on one interactions, I’m fine and I have learned to position people I am speaking to on my good ear side. Group settings, loud venues, and places with a high level of background noise are surprisingly difficult to navigate. On the plus side, I’m getting better at reading lips. I do find myself saying “what did you say or huh?” A bit too often, but I’ll take that “side effect” over nearly all others that could have resulted. Because I had lost nearly all of my hearing prior to the surgery, it wasn’t as dramatic a change for me post surgery.
All facial nerve issues (and they were quite minor post surgery) have long since faded as the “bruising” of the facial nerve healed. Sleeping on the AN side continues to be a work in progress as I am getting up to 30-40% of my night being spent on that side. My non-AN side was developing some muscular pain from sleeping on it the majority of the time so that caught me by surprise. I still have some weird and uncomfortable (not painful) sensations/feelings at the surgery site if my scalp/skin is pulled/slides across the plates. This most often occurs while positioning my head while sleeping or drying off my hair after a shower.
In terms of pain and discomfort, there are still times when I will wake up with a sense of discomfort in the area of the surgery site and an achiness in the neck muscles below. I haven’t been able to narrow down the cause, but I suspect that it might be weather related as changing weather systems are affecting me. If I stretch and take some CBD oil, it generally goes away in a few hours.
I had my follow up MRI 2 months ago (big thanks to Dr. Friedman’s office for helping me get that through the insurance company), and it revealed no re-growth so that was cause for celebration. Re-growth continues to be the fear that creates anxiety for me. I take twice daily CBD oil supplements in the hope that it will retard re-growth based on the limited data out on that topic.
All in all, I consider myself incredibly lucky to have found this forum shortly after my diagnosis. This forum also led me to the Dream Team at UCSD with whom I felt completely confident then and now. I know I dodged so many of the troublesome side effects that we all read about here, and I’m so grateful. I can live with SSD and some achiness from time to time. Fingers crossed and hoping for the best.
