I told you in March about my brain tumor, called an acoustic neuroma, or correctly but cumbersome, a vestibular schwannoma. In May they were able to remove the entire tumor without affecting my facial nerve and saved most of what vwas left of my hearing. I have been extremely lucky and for that reason I have also been mostly quiet about my recovery.
The five days I spent in the hospital are a blur to me now. Many patients experience extreme vertigo after having a vestibular schawannoma removed, because it is located on the nerves that affect hearing and balance. I was on a pretty decent cocktail of anti dizziness and anti nausea medications that kept me happy, but I’m going to deliver my PSA now. If you’re going to be in the hospital and possibly unable to speak up or defend yourself, be sure you have an advocate present at all times. I was asleep a lot and in pain so I did not want a lot of company. That was a mistake. I spent a very uncomfortable night in the Intensive Care Unit with a nurse that thought I should sleep less and take less medicine so I could get up and move around quicker. I can only assume she didn’t understand the nature of my surgery. I was in pain, drugged up, and trusting. I spent the evening sick and miserable and my only vindication is knowing that she had to clean up after me all night. That, and when my surgeon found out I got to listen to the head nurse explain to her that she was wrong. Call me petty, that felt good. Enlist advocates. Do not go alone.
I’m in several online support groups for patients all over the world with the same type of tumor. Before surgery I heard many horror stories; I also heard many success stories. I knew all the possibilities. I knew that even the most successful surgeries are still brain surgeries and have lasting effects. AN patients often refer to “the new normal” and I remember thinking that sounded like a desperate attempt to sound positive. I understand now that it’s not an attempt at anything other than explaining how you feel. It’s different for everyone. My normal isn’t anyone else’s normal anymore. I could be better, but I am very aware that I could be worse.
Yesterday, a member of my support group posted,
“I wish there was a blog that I can share on Facebook describing what daily life is like for those with AN. I want my family and friends to understand why I am chronically ill. They don’t understand why I can’t travel, stay up late, the chronic ear pain, etc. “
I realized that I had started out with the mission to raise brain tumor awareness, and then in the midst of my own battle, when I had the most to say, I shut my mouth. In my defense, it took me awhile to be able to sit upright at my computer.
My recovery isn’t like anyone else’s. It’s different for everyone. One of the most difficult conversations to have with this diagnosis is the “my brother in law’s cousin had brain surgery and he’s fine” talk. We are all really super happy for your distant relatives and acquaintances, but you simply cannot compare brain surgeries. This is not to say that one is better or worse than another, but that they are different. Not every surgery to remove a schwannoma is the same, let alone every brain surgery. My surgeons used the retrosigmoid approach, but there are other types, as well as gamma knife or simply monitoring the tumor to see if it grows. Surgery to remove an acoustic neuroma is one of the least invasive brain surgeries you can have, according to one of my surgeons, which makes it sound less frightening, but what I learned from my support groups and research was that it also has one of the most hellish recovery periods, and that some people never fully recover. Every journey is different, but I will invite other AN survivors (and those still dealing with their tumors) to leave comments about their daily life. I’ll leave you with a link in case you feel compelled to learn more or donate.
My New Normal
I can walk straight already. I can drive, but only for a very limited time and I’m not sure I should drive anywhere I don’t know my way around, only because I get frustrated when I get confused. My memory seems fine. I think. I can still hold my own in a political debate on Facebook. The boys never had that heart breaking moment I feared back in March; they’ve been able to climb around on me just fine even though I can’t pick them up. I can take my kids to the movie or a park as long as I’m careful. I can do almost everything I did before, except bend over, lift pretty much anything, or tolerate the heat. If I spend too much time outside I get sick, and considering that is my favorite place to be, this is a horrible side effect for me, possibly the worst. I can’t clean my house without bending over. Try it! Sometimes I sit on the floor to sort toys and I am very thankful for my ability to pick things up with my toes. Even cooking heats the kitchen up to an uncomfortable temperature, and just standing in the kitchen is exhausting sometimes. I wake up tired. I have kids to feed and messes to clean before my first daycare clients arrive, but all I want is to take my medication for inflammation and lay back down and wait for it to work. Just getting dressed is a struggle because our house is always so warm, which makes me nauseous. Once the meds kick in I get a small burst of energy that carries me through the first part of the day. Sometimes I feel so good, hiking the easy trails, reading stories, doing crafts, that I think I could go all day. I cannot. I’ve tried. The kids need a nap and I need conditioned air and rest. I still have tinnitus. It’s slightly worse since surgery, but most of the time it is white noise. It is one more thing that wears me down. The constant noise, straining to hear, inflammation of the neck and shoulder muscles, a swelling feeling in my incision area, all start to make me tired by the time I am off work. There is a condition called neuro fatigue or neuro exhaustion that accurately describes how I feel. If you have a friend or family member with any type of brain injury please click those links and try to understand their day.
My hearing was damaged before the surgery and, other than a hearing aid, there is no way to repair it or bring it back. I’m grateful they were able to preserve most of what was left of my hearing, but that doesn’t mean it isn’t a struggle. Some days I wake up with a fulness on the AN side and much louder tinnitus. I’m trying to teach my children to look at me when they speak. I hate when they ask me for something and I feel lost. I’m supposed to have the answers, but I need to be able to hear the question. They are kind and calm, though. I wish it would not be considered impolite to snap at adults not to mumble, because they have no problem sighing at me when I can’t hear. I know it’s frustrating to repeat yourself, but please be patient with people who ask you to clarify what you said.
Some days, busy days, the pain is worse and I’d like to take more medication, but The Barkeep (my boyfriend, for new readers) is not home and I have small children here, so I try to wait until they are in bed, because I never know how it will affect me. I spend a lot of time watching the clock for when I can take medication, or better yet, get some sleep. Putting little, wild people to bed when you are exhausted is trying. Thankfully I have a secret weapon, Goldy, my daughter that is living at here while going to college. (Beauty didn’t run away with the circus, she stays at her dads a lot, works some and spends even more time with friends. She was in school right after my surgery so was not here to help as much, but she is a great help when she is home.)
I also have a wonderful support network of family and friends that brought us dinner and watched the kids during the worst, early part of my recovery. I know that I am lucky. I know that my recovery has been easy compared to many. I also know that it’s not over. I have a long way to go. My doctor is confident my pain will get better in time, but much of what I am dealing with is here to stay, and I need to learn to cope with it. That’s what “the new normal” means. You adjust. It does not mean you pretend everything is positive, in fact it is the opposite. I can and should share with you that some things about my recovery suck, but I’m not defeated. This is how I feel. This is who I am. This is normal.
I’d love for other AN patients to tell us about their new normal in the comments.
Please check out this link for more information: https://www.anausa.org/