Hi Becky,
I am eleven weeks post-op. Like your husband my hearing loss doesn't bother me much nor the balance issues. I am recovering well. I had that squishiness as well, it does go away slowly but he will notice that his scalp around the incision will feel thick, tight and numb. I had the retrosigmoid approach and my scalp feels thick,tight and numb from my ear to the incision but not past ( how strange) also my right ear (AN side), still sticks out more, I guess things are still swollen. I wonder for how long. Also the incision healed very well and quickly, only to start bleeding a little and stabbing over two months after the surgery.
Like him, I too had my facial nerve intact and monitored during surgery and responded very well to stimulation only to become paralyzed. This is also my biggest challenge. I did see an ophthalmologist about my inability to close my eye two weeks post op and at the time my eye had no protection it wouldn't eve roll up (Bells phenomenon) so a gold weight and a few stitches at the outer corner of my eye was highly recommended. But then my eye started to roll up and started to blink a little along with the other eye and if I looked down the lid would. Follow but I still can't make it close. But I decided to wait a little longer before putting in the gold weight. See if things improve on their own. I too don't want to do another procedure. I hate having to deal with facial paralysis and I check every day for improvement. I video my face once a week to check fore subtle changes, and there are. I never thought I'd be looking eagerly for wrinkles on my forehead, and be so happy when I see an ever so tiny dimple being formed. And if I raise my none AN eyebrow the corner my AN eyebrow at the inner corner slightly raises as well. Oh joy
. Well my mouth still hasn't changed, eating and drinking is a challenge, even exhausting, but at least it I can swallow without having to drink water with every bite because it doesn't hurt to swallow anymore. We have to rejoice in tiny improvements that will bring us to who we were before this ordeal.
tell you husband to be patient and stay positive ( I keep telling myself too) nerves are very slow at healing. I read in you other post that your husband was so discouraged that he wished he hadn't done the surgery. I too felt this way, especially early on. My husband asked me a day or two after the surgery if I would do it again, and my answer was a definite NO. It was too much to bear and at times I wondered if it was worth losing the tumour being stuck with facial paralysis. But things did improve ( minus my face) and although I get discouraged at times my answer is a resounding YES I would do it again. I have a wonderful husband two beautiful girls although one is an adults and other a teenager they still need me. My tumour grew from 2.6 to 4.3 cm in two and a half months so if it had not been removed things would have gotten really nasty real quick. After eleven and a half hour surgery The surgeons couldn't remove the whole thing without severing the nerve, so they left some behind. I will have to do radiation but the neurosurgeon wants to wait at least six months in order for the facial nerve to heal because radiation can permanently damage the weak nerve.
Try to keep him motivated. We can't let this tumour dictate our lives, I refuse to give in, will try to live my life as if it never existed. What doesn't kill us makes us stronger.
Mary
