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At the time it was found (in late April / early May 2005), my tumor was the size of an apricot, adhered to the spinal lining, grown into the acoustic nerve, and beginning to tear the facial nerve. (All I knew until the tumor was discovered was that I was always very subtly off balance, had lost much of my hearing in my left ear, and was feeling very gentle spiders walking along the area near my upper left lip. I understand only after the second surgery that the spiders-walking feeling was the facial nerve being pressed. I got the tumor headaches about two weeks after discovering the tumor.)
In June I was in surgery to reduce the size of the tumor so that we could do Cyberknife radiation treatment on it. I was in a lot of pain. I think I was in the hospital for at least four nights, at my grandmothers house for a night as a staging way to get me back home. At home I was bedridden for at least a couple more days — I could walk down the hall, barely, using the wall to keep me upright. Over the next three weeks I walk a little bit further each day. Getting to the end of the drive with my husband was HUGE, then I went back to bed. I went back to work on week 5, but only half time for the first two or three weeks. I’d get to a point around 11am where an easy jig-saw-like task that would typically take me 15 minutes became impossible to figure out.
In November I was back in surgery because even though they pulled out 80% of the tumor the first time, it still wasn’t small enough for Cyberknife. When I woke from that surgery, the left side of my face was completely unresponsive and I couldn’t hear at all out of my left ear. I was in much less pain by the time I got home — barely used any of the pain pills. Some of the experience I described in my email to (name kept anonymous). I’m happy to give you more info if it helps as when I sent her was related specifically to the paralysis and the physical therapy. Note, though, my doctor told me not to tape my eye shut as it could scratch the cornea.
In January (2006) I did the Cyberknife treatments. (Off topic — have I ever shown you the mask made for me for the Cyberknife? Freaky-cool. Like Geiger molded my face.) I was still recovering; I had some very interesting logical lapses during January. I probably went back to work (the second time) in February. I probably went to the doctors in March or April (so 4 to 5 months after surgery).
We think the Cyberknife treatments finished off whatever hearing I had left. If it means the tumor won’t grow again (which was the aim of the radiation), it’s a good trade.
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*Note from Neil, here is a 2nd part that was written, which she also gave permission to share
Neil and I talk sometimes, in general terms, about the schwannoma page he runs. He mentioned that you were looking for information about what to do post-op, related to facial paralysis. Here’s a little background on me: I underwent surgery for an acoustic neuroma about 10 years ago. Actually, two surgeries, to reduce the size of the tumor. After the second surgery the left side of my face was completely paralyzed. (Don’t blame the doctors. It was a miracle I didn’t have problems earlier.) The doctors and hospital staff were very uninformed about it — the best they had was “most of the time things return to normal in about 3 months.” Four months later I was in to see the nurse practitioner for an unrelated visit. She gave me the name of the physical therapist who worked on facial paralysis (whom she knew about because her son mentioned his therapist did facial work…) So I have no reference for how to find people who deal in facial paralysis but I can tell you some of what he and I did together to improve the movement and symmetry in my face. _______________________________________________________________________
*Note from Neil, here is a 2nd part that was written, which she also gave permission to share
We started with a nerve conduction test (I don’t promise that’s what it was actually called, though) which indicated which areas were least / most damaged and therefore most / least likely recoverable. He video taped me talking so we could view facial movement more objectively and selectively.
In our visits he showed me exercises to do which targeted specific muscle movements to work on at home. When I first began, I had no movement in the left side of my mouth outside of what moving my jaw produced. I had to focus on one movement. I think we began with the corner of my mouth. He demonstrated the movement. (Watch someone smile gently, lips closed, with just one side of their mouth.) My job was to relax every muscle in my face then move just the corner of my mouth up. I had to practice this in the mirror every day. I don’t remember if we did just the corner of the mouth then two weeks later did the upper lip movement, then… or if he showed me how to isolate each and I practiced it all every night. But I do remember it was very frustrating, and very difficult to convince myself to go back to it day after day. I also remember when — two weeks later? three? — the corner of my mouth started to move.
At nights I slept attached to a device that sent periodic pulses of electricity to the muscles as a way to stimulate the nerves. The sensation was a bit like being tapped lightly. I can’t remember what the device was called - or really how long I had it. My husband and I recall the timing for this differently. He thinks “not long”, but I’m fairly sure I had this device for close to a year.
The therapist also had me work with a small biofeedback machine for a couple of months. I stuck a pad to a target area on my face and attached the pad to the machine, then focused on muscle movement. We began biofeedback after some of my mouth muscle began moving, and used it as a continuation of that work. So, if I attached it a little above the left side of my mouth, I then relaxed all the muscles in my face and focused on raising the top part of my lip in such a way it registered on the machine.
When I had more muscle movement, he had me practice certain phrases and tongue twisters in the mirror with the focus on keeping the mouth symmetrical when pronouncing letters such as p and r.
The last piece that I recall came several months later, when I’d regained muscle movement and symmetry. We did more muscle isolation exercises specific to counteracting the synkinesis he saw. (Synkinesis, if that’s unfamiliar, is when the nerves get a bit mis-wired and moving one area causes a completely unrelated area to move. For a couple weeks, for me, raising my right (unaffected) eyebrow also caused the left corner of my mouth to move a small amount.)
I don’t remember how long I worked with the therapist, but I’m sure it was over a year. It may have been as long as two. My face is still partially paralyzed, but it is a huge improvement over what I had just after surgery. My eye still doesn’t blink quickly, but that was one of the areas the first test showed unlikely to recover. However, while I cannot grin, I can smile. I can pronounce words properly (just after surgery I couldn’t pronounce my phone number. About the time I began with the therapist I could but needed to speak it slowly.) My face is still asymmetrical, but is not nearly as pronounced as it was before. And I have a suspicion that I’d have much more muscle movement if only I’d been a bit better at convincing myself to do those muscle isolation exercises.
I hope there is some piece here that helps you find the answers to your questions. Facial paralysis I found deeply saddening at first, then just an annoyance.
My best to you as you heal.
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Our thanks to the person who allowed us to share some of this correspondence. We hope it is of assistance to those of you recovering from acoustic neuroma! - Neil
