I feel so blessed to have survived my bout with Meningitis! It is now a year and 10 months after my initial diagnosis, and though there are many side effects that have lasted, I am trying to learn to move on with my life.
I have had three surgeries on my ears. Two on my left ear, and one (including a craniotomy) on the right. My last surgery on the right was seven months ago. This was much more extensive than the left, as they had to remove part of my skull and "lift" my brain out of my ear canal. After this surgery, there was much more pain and fatigue than the other ones. Also, during my overnight stay following the surgery, my blood pressure rose very high, and I was really worried about that. It calmed on it's own, and is fine now.
My main side effects are significant hearing loss, some joint pain, and forgetfulness. The joint pain, well, it hurts. After my friend passed away from low immunity due to anti-inflammation medications which weakened her immune system beyond repair, I do not wish to be on steroids. I am currently trying to get some relief from an ortho doctor, but fighting with the insurance to cover necessary tests. I know part is due to my age, and we all have aches and pains, so I am just trying to deal with it. Stairs are out at this point, and I find myself checking to see if wherever I am going will have stairs to climb. I think a cane would help my knee pain, but there are just some things I can't bring myself to do just yet. After all, aren't those for old people? It won't likely improve, but maybe can be treated to the point of being tolerable.
My hearing aids have been adjusted to compensate for the hearing loss, and it helps, but being in a crowded place results in a roar that makes it difficult to distinguish someone's words from the rest of the noise. I still have trouble hearing the words people speak. Did they say cake or gate? Gift or lift? Tammy or Frannie? That drives me crazy, and sometimes I am totally embarrassed at the number of times I must ask someone to repeat something. Talking on the phone is especially challenging. If there is a bad connection, or someone has a soft voice, I sometimes have to hand the phone to someone else to interpret. I find myself guessing what someone is saying, which sometimes is a bad idea. So, I will have to deal with it.
I am scheduled to have one final surgery in a week. This will be to "stretch" my eustachain tubes. All the prior surgeries were for practical reasons, to rebuild my bones, repair a spinal fluid leak, and lift my brain out of the ear canal. These were done to ensure I did not contract meningitis again. From that standpoint, it has been a success. But the hearing that the doctor hoped would improve has not. This last surgery is to maybe help the hearing issue. I am hopeful this will do some good, as it is the last chance for improvement. It will be out-patient, though I will be put completely out for this surgery, it won't take very long for the actual procedure. I am not sure how long afterwards before I will know if it was successful, as there will be a healing time and some swelling that will have to subside.
I hear my voice above all sounds when I talk. When I eat and chew, all I can hear is chewing. Pretty much the way it would sound if you plugged your fingers into your ear canal all the time. And, with the hearing loss, my brain, if I understand correctly, is trying to make up for the loss by generating noise. This is referred to as tinnitus. In my right ear, I hear a high-pitched whirring noise all the time. In my left ear, I hear a low, rumbly sound similar to being at the races all the time. With the hearing aids in, it amplifies outside sounds enough that it is bearable. But at night, when I take the hearing aids out, the constant noise is so loud, it drives me nuts sometimes.
The thing I miss the most is singing. Because my voice drowns out the external sounds, it is very difficult for me to hear music and try to sing on key. I haven't done it in a long time because it will probably be bad, and that would be devastating to me. Pride, I know, but I just can't help it. So, I hope above hopes that at least my hearing will be restored enough to allow me to sing in church again.
My forgetfulness is something that only I and my family notice. Mostly short-term things. Did you just tell me we were eating lunch together tomorrow or Wednesday? I know some of this is due to old age and generally being a little forgetful, but I notice going to a room and not knowing why I am there once I go there. I find myself asking my husband or kids something, only to have them say, "We already told you that twice." When you're a control freak, this is quite disconcerting!
So, I covet prayers that this will be a successful surgery and restore a little of my hearing, and that I will recover without a hitch. I will post an update soon as to how it goes!
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