As others here have said, very often the AN cases where things go wrong get most of the attention (which is natural; when things go RIGHT, we give it little thought afterward). Having been through it, I know how scary it can be for folks who have just been diagnosed. They need to hear the success stories, and be assured that THIS is normal – not the horror stories! So, here is my account. It’s much like others’ accounts, I suppose. But, there’s strength in numbers … so here goes. I tried to keep this short … but as you can see, I failed. Settle in for a long read!
I’m a single 44-year old male. I started noticing a loss of hearing in late fall of 2015. I had been doing a lot of wood-chopping lately – without hearing protection, of course! So when I woke up one day and couldn’t hear much, I figured that was the cause. I went to the doc, but of course they couldn’t do much other than to suggest I give it some time and see if it recovers.
Over time, it did ... somewhat. Left ear yes, right ear not so much. In that time, I developed other symptoms as well: slowly spreading partial numbness in the right side of my face and gums, and sometimes I could actually feel something jiggling inside my head when I walked.
Went back to the doc. I got a CAT scan, and they determined I had ethmoid sinusitis, a somewhat rare infection in the ethmoid sinus activity. They prescribed antibiotics, and that seemed to mitigate my symptoms, although again they never entirely went away. In retrospect, this darned infection plus the wood-chopping delayed my AN diagnosis.
Hearing in right ear continued to worsen, and I went back to the doc again. He put me on a 1-month course of a steroid and diuretic, to see if perhaps there was some fluid buildup in there that might be blocking things.
It had no effect. By this point, right ear hearing was pretty much gone. So finally, this past December 14th, he sent me for an MRI. And boom – there it was – a tumor in my head. They used the gadolinium contrast, which was NOT done in my previous CAT scan; if they had, they would have seen it clear as day. However that’s hindsight talking, and there’s no reason to think they should have ordered contrast. (However, if you have symptoms like these, you should insist on it if you have the choice!)
The doctor said I had a 2.2 x 2.3 x 2.6 cm tumor, with clearly defined edges (meaning it was benign, thank God). The good news was that it was operable. The bad news was that my hearing was never going to come back. That was tough to take. I’d always assumed that eventually the docs would fix me up, so it was disheartening to find out otherwise.
I live in Houston, so the place to send me for treatment was a no-brainer: M.D. Anderson Cancer Center right there in town. I was referred to Dr. Franco Demonte. He and Dr. Paul Gidley work as a team doing AN surgeries and are extremely experienced, doing one of these every couple weeks or so. I visited a few times over the next couple of months.
These AN tumors continue to grow, if slowly, so leaving it in place was not an option. Given the size (medium bordering on large), radiation wasn’t a choice either, as there would been too much radiation bleedover into surrounding brain tissue. So, surgery it was. Due to location, we opted for the retrosigmoid approach.
Due to scheduling issues I wasn’t able to have the surgery until Mar 21st. The waiting KILLED me, but the day finally came. I reported to the hospital at oh-dark-thirty, and surgery commenced about 7:00. I was under for some 9 hours. My biggest worry at the time was: when I wake up, how will I feel? Dizzy? Nauseous? Disoriented? Foggy? In pain? Temporary facial paralysis?
I woke up, and none of those things came to pass. I felt about as good as one can, for having just had his head cut open! (Then again, they did have me pumped full of drugs.) As expected, to get the tumor out it was necessary to sever the hearing and balance nerves on the right side, permanently.
The doc had said there would be a few hours of short-term memory loss, as a result of the anesthesia. My sister was there, and she can vouch for having to tell me things over and over! Haha. That got amusing after a while! I did have a few bouts of throwing up in the first 24 hours, but fortunately they caused no complications with my incision. I had substantial numbness on the right hand side of my face and tongue (much more than before the surgery); however all the MUSCLES worked ok, which was the most important thing. And the doc assured me the numbness would recede slowly, over the next several weeks or possibly months (ugh). They said dizziness was expected, and sure enough that was an issue whenever I moved.
The only thing that didn’t go as planned was that they were not able to remove the entire tumor. Mine was more “sticky” than most, and it was stuck pretty hard to my facial nerve. Dr Demonte had to leave about 2% of it in place to avoid damage to that. But the good news was, he removed every bit possible in spite of the stickiness, and caused no other side effects.
The day after my surgery, they had me walk (with assistance of course) for the first time. That was hard. But each time I walked, it got a little easier and I walked further. I did not experience any cerebrospinal fluid leak, from the incision or anywhere else. Once I was able to dress myself and walk, based on my progress, they released me after 5 days.
My family took care of me for the next week at home, then they were able to leave me alone. I couldn’t drive yet, but folks from church brought me food so I didn’t need to go anywhere. It was VERY helpful! I developed some severe headaches at home, and the docs said that during the surgery it was probable that some blood leaked into my CSF. But the headaches cleared up on their own a few days later. The numbness in my face was indeed receding, but I had something of a relapse and it came back in full force. But the doc said this too was not unusual, and I just needed to wait it out. It seems to be getting better once again.
After 6 weeks, I had enough steadiness and endurance to return to work. It’s now been almost 7. My head still feels clogged, I’m still partially numb and a bit dizzy. I suspect the dizziness (in addition to hearing loss) will just be part of the “new normal” and I gotta get used to it. But I’m alive, I still have one good ear, my job is unaffected, and I’m healthy otherwise. There’s much to be thankful for!
