All went well with the treatment. After so much study of treatments, it was almost anti-climatic. I had my three days of treatment and we flew home to Illinois. No problems. I did feel extra tired and needed extra naps. Other than the tiredness, I felt good.
I was excited to see future MRI’s. Would they show the tumor getting smaller and dying? I would have to wait. It’s hard waiting. Any little symptom and I worried the tumor was growing, or I might have swelling from the treatment. I prayed more often and my trust in God grew by leaps and bounds. Whether the tumor died or not, God would be with me.
After six months, I finally had a post-treatment MRI. YES!! The tumor is dying and has gotten smaller. The original size was 1.3 cm by 7 mm by 5mm. Six months following treatment the size measured 1.2 by 6 by 4. Now, this might not sound like a big difference, but it meant the world to me. There isn’t any extra space in our brains for tumors.
By the way, I have had my follow-up MRI’s in Illinois and Missouri. Different radiologists and neurologists can look at the exact same MRI and read it a bit differently. This used to confuse me. When the MRIs were big pieces of film, I learned how to read and measure them myself. That’s a whole lot harder to do with a disc. In fact, I can’t. I used to mail the films to California for their readings and was always amazed when they read them a millimeter or two different from each other. Now I don’t have to mail films. It all happens electronically.
My treatment was in 2005. Now, not quite thirteen years later, my latest reading is 8 mm by 4 mm by 5 mm. Yipee. When I asked if I need to continue getting the MRI’s, the answer was I can wait three years for the next one!! More good news.
Now for the bad news. Six months after receiving the radiation, my hearing took a nose dive. With prednisone, some hearing came back. I wanted to continue on the drug, but the doctor said no. Too many side effects with that drug long term. I didn’t care. I wanted the drug, but he said, “No. too many side effects.” If it were up to me, I wanted to stay on the drug. I couldn’t talk him into it.
Most often, someone diagnosed with an acoustic neuroma has had a hearing loss in one ear only – Single Sided Deafness – SSD. It can be a sudden loss but usually is slow. Because my tumor was mostly on the balance branch of the 8th cranial nerve, I had good hearing. My problem, as you might recall from an earlier post (#2) was balance, not hearing.
From: American Hearing Research Foundation. This website has lots of good hearing information.
Without the prednisone, my hearing continued to decrease. Today, I’m deaf in my right ear. Would I have had the treatment if I had known I’d lose my hearing? Yes. It’s a good feeling to know the tumor is dead. That knowledge is worth the loss of hearing – to me.
I would hate to have not had the treatment and lose my hearing. Then my question would have been Would I still have my hearing if I hadn’t had the treatment? That question would have been a tough one. I’m glad God directed me and nudged me to the treatment.
I once heard someone at a symposium say, “Hey, with an acoustic neuroma, you lose your hearing. With or without treatment. Doesn’t matter.” From everybody I have talked with, this is true.
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Readers, do you know someone with an acoustic neuroma who has good hearing on the acoustic side?
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Dear God,
You tell us to ask for what we want, so I will come right out and ask for my hearing to return. I thank you the treatment killed the tumor, but did it have to take the hearing?
Forgive me for trying to second guess your ways. I’m trying hard to trust you. I know you didn’t promise it would be easy to trust. But this is hard. I have two ears. One of them works and that should be good enough for me, but it’s tough having this SSD. With you beside me, I can handle it. Amen.
God is our refuge and strength, always ready to help in times of trouble. Psalm 46:1