Acoustic Neuroma brain tumors and Fatigue

1977 - I thought I was tired then. . .

1977 – I thought I was tired then. . .

I would have written this post sooner, but I was too tired.

Merriam defines fatigue as “the state of being very tired: extreme weariness.”  If you ask an acoustic neuroma survivor about fatigue there is a good chance that they will share a new appreciation for the word. We’ve all been exhausted in life, but there is something about a craniotomy that takes strength that is hard to regain. Yet it also brings out a strength we didn’t know we had.

Fatigue is a very familiar word for anyone who has had treatment for a brain tumor. We need naps. It’s hard to explain the feeling of such fatigue coming over you in the middle of the day that you HAVE to take a nap. Sometimes it is emphasized by a dry eye that will not be satisfied with artificial tears. Closing it is the only way to regain comfort for the remainder of the day. Sometimes it is a dizziness from overtaxing our vestibular (balance) system. Other times it is a matter of just being sick of that darn ringing in our ears and needing to escape it for a short time while unconscious. What used to be a ten minute cat nap is now an hour or two.

Fatigue is a recognized symptom of an AN, but not always discussed. There is an assumption that fatigue is caused by the surgery and recovery process but will go away when “healed.”  However, it is frequently a long term or permanent state. It is intensified by drugs that often are required for lingering issues after treatment – pain and depression as examples. It is also caused by the extra work that the brain has to do to compensate for balance or hearing.

There are synonyms for fatigue. Burnout is one that is usually associated with burning the candle at both ends. Burnout for a brain tumor survivor may be from continually treading water and trying to regain one’s old self. It may be from trying to return to work or life having to adjust to new challenges.

Frazzle is another synonym, implying out of control or mentally scattered. That is also accurate for AN survivors as we attempt to sort out sounds if left single sided deaf. Where did a sound come from?  Or what is the person in front of us saying when there is background music or noise. We can feel frazzled and feeling unbalanced from excessive movement.

Prostration is a word that I totally get now. Being powerless over the way that your body has removed control over when a good day will come or when you find yourself flat out on the ground either face down (prostrate) or face up with arms flailed to as if we are making a snow angel. Exhale. . . .

Antonyms exist for fatigue also. We do have days when we feel refreshed, and we appreciate them. We look at the puffy clouds against fall colors and inhale with a love for life and the people in our lives. We feel revitalized when we realize how little we now care about things that may have been enormous in our prior lives. We feel rested when we have a good night’s sleep without being awakened by a headache.

We have learned to live minute to minute. We have learned to take one step at a time. We have learned to live with fatigue and know when we have precious moments of rest and peace.

A common statement that I hear is “I don’t know how you do it.”  Well, like with anything, one step at a time. One obstacle at a time that is overcome or adapted to. Although we have fatigue we also have a strong desire to squeeze every moment out of life.

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35 thoughts on “Acoustic Neuroma brain tumors and Fatigue

  1. JULIA

    I can absolutely relate. Although I just keep going it is just not the same as before surgery. (2 yrs) My friends call me the energizer bunny, I’ve taken a licking but I just keep ticking.

  2. Danny

    As a former AN patient I also was very tired after work, after a party, after eating dinner in a loud restaurant.
    But now since a few months I got a BAHA to help me hear better. Which it does, but also I’m much more energetic. I wouldn’t go as far to say, that the level of energy is like it was before the operation, but still it’s a great improvement.
    I advise any one with single-sided hearing loss, to at least try a BAHA on a test headband or a Cross device, to see if it helps any. It helps me a lot.

    With kind regards, Danny

  3. Acoustic Neuroma Association

    I just love your writing and this is the second time that I’ve read one of your blog posts and felt the need to share on our ANA Facebook page. You have a great way of putting the thoughts and feelings of a lot of AN patients together in a very inspirational yet realistic way. I think this is a post that will hit home with many and I love the way it ends on a positive note. As I’m sure you know, attitude and outlook have a huge affect on healing and your perspective is refreshing. The last blog post of yours that I shared became one of our most seen posts ever! With your permission, I’d love to share this one too.

  4. Rebecca Davenport

    I still struggle with fatigue, eight month post surgery to the point where I’m flat face dow. Way past a nap, physically and mentally. Further, it takes me longer to recharge my energy level. I compleetly can relate to the articles content.

    1. Will Mendes

      I’m just depressed. I want to be me….the guy that could work 12-16 hour days, go to band practice and play on weekends. Can’t make commitments because I’m always tired and it’s been over three years. This is not life.

      1. sallystap Post author

        Will, Accepting the changes that we face through medical events – or other life events – just requires us to take it a day at a time. It is not easy. Hang in there! Make sure you have someone to talk to about what you’re going through.

  5. Kit Wiley

    Before my surgery in Sep 08 I got to the stage I could barely put in 10 minutes effort into my day before I was worn out. I didn’t know I had a brain tumour until I woke up in hospital and my surgeon informed me. Turn out it was the size of a tennis ball.

    Post op I was more alert and awake for longer, in fact for he first 10 days I could sleep, my brain simply wouldn’t let me. Energy wise that took up until the spring of 2014 before I got anywhere near being able to mow a large lawn and not get worn out half way through and have to push myself to get it finished. We have two rather large lawns, I would do one one day and the other one the next.

    Hearing post op was a challenge, particularly in a restaurant setting. I’d struggle to hear my wife of the noise of others chatting. My hearing has improved to where I can focus on who’s talking to me without much effort now. My balance still gets wobbly now and again but on the whole it’s pretty good.

    This blog post resonated with me and my memories of the first 12 months post op. Thank you for writing it Sally 🙂

    1. Kit Wiley

      ooops, #1 That should say ‘in fact for the first 10 days I couldn’t sleep.’

      ooops #2 ‘I’d struggle to hear my wife over the noise of others chatting.’

  6. Daran Day

    I had no idea! I’m 6 years post-op now, and while it has gotten better, I’ve been dealing with an unexplainable fatigue (until now). No matter the amount of sleep, exercise, and/or caffeine, I still felt tired by early afternoon. I share your experience and pain no matter the difference in severity. After reading several posts here, that “alone” feeling from the fatigue and hearing issues is gone. I returned to the gym a little over a year ago, but my strength, endurance, and stamina are far from what they were pre-op. On a good note, my wife and I recently switched mattresses (again!) and I seem to be sleeping better and having more energy, and my workouts have improved. One question….have you (or anyone reading this) experienced a lack of/decline in focus? Please feel free to email me. Id love to talk with other AN patients about their experiences!

    1. Lynn

      Daran, your story could be my story exactly. I am 20 yrs post op. Yes, I have a decline in focus, I used to be able to study for hours or get lost in a book. After surgery I could not focus on a task for ten minutes before I had to get up and do something else. Some days are better than others, just like Sally said.

      1. Michele

        Lynn and Daran,
        I was wondering if age 51 was the reason, or if my AN surgery was to blame for the fact that I would start to do something, then do something completely different and forget to do the original task. The worst example is going into the kitchen to get something to eat, then seeing dishes in the sink, I would do the dishes and leave the kitchen having forgotten to eat at all. Who forgets to eat!?!?! I am going for a Neurophsych eval. next week. I hope to find some answers on this issue; not to mention why I am still quite dizzy and off balance 5 months post op. Might I add, both of my Neurosurgeons (at follow up appts.) say they can’t understand why I am still dizzy. I would love to show them these posts and ask them if they think we are all crazy!

  7. Antonietta

    It’s amazing who you can translate in words what happens to you. And for me it’s the same, I never though about that before, I was thinking about the years that fly away and you are older and older and you need to sleep more, about my kid that doesn’t allow me to have quite nights… I forgot the tumor. Because I try to forget about it when I can. Kisses.

  8. Suzy Wells

    So well written! It’s been almost 20 years since my diagnosis of a 5 cm acoustic neuroma, but I still feel that I tire easily. I am in excellent health, work full time and have 3 kids (2 still at home) but need my rest more than my peers and my husband. Thank you for reminding me to give myself a break and not feel guilty about that much needed nap!

  9. Janice

    My sister who happens to be an individual with NF2 and shared your article is my hero. She is an amazing gal and so are you. Keep sharing

  10. jennifer

    Thank you for writing this. I’m coming up on 5 years Post op and still feel this. Many don’t understand and it is nice to have some validation and know I’m not crazy 🙂

  11. Mary Slawter

    What a wonderful blog! It makes me feel that I am not alone in this world and reassuring to know people understand my daily struggle with healing. The Doctor’s listen but I feel they just don’t fully understand and if they could just spend one day in my body since the surgery they would!

  12. David Stouse

    It’s comforting to hear (no pun intended) that those things I have experienced are mostly all contained here in one post!

  13. Kelly Jean

    As said before, thank you for this blog. I am 11 years post-op (37 yo when operated on, large tumor, hydrocephalus) and still struggle with fatigue. I feel physically ill if I don’t sleep 8-9 hours and often need a nap. And I waste energy feeling ashamed about it. Will investigate getting the BAHA if it helps.

  14. Dino M-UK

    Your story could be mine.
    My AN was removed in Sept 2015 and I am fatigued most of the time and my balance still has a long way to go before I feel confident.
    I also struggle with short term memory loss, Tinitis and of course deafness which I am trying to get used to.
    The strange thing is I look fine so everyone thinks I am completely back to normal.
    This in itself has become an issue as family and friends think I should be doing more than I am, although I am back to work and sometimes feel I won’t get through the day due to the terrible tiredness (if only I could sleep at night)
    Only being 4-5 months post surgery I am sure things will improve but cannot underestimate the importance of good after care.

  15. David Blatt

    I had my AN treated by gamma knife four years ago which stopped it’s growth. It is golf ball size. However, even though I didn’t have it surgically removed, I am still have the same issues with fatigue, balance, and dizziness. With the dizziness comes nausea. Fortunately being retired the afternoon nap which is a must most days is no problem. It seems that I have most of the post op symptoms as those who have their ANs cut out. I also deal with short term memory loss, focus issues and facial spasms. Also because the tumor caused hydrocepahlus had a shunt (pump) surgically inserted in my skull to drain excess fluid. Should I be surprised to have almost duplicate post op symptoms with a gamma knife procedure as a surgically removed AN?

    I also am my spouses caregiver who has other medical issues. She gets it. However I feel that the rest of my family doesn’t get it. They look a me and see a normal person. Like why can’t drive or fly to the east coast to visit close relatives (I live in Ohio)? I try to explain but I feel that they don’t get and I feel guilt that I don’t visit.

  16. David

    I am 3 months post op. I’m 38 and in excellent shape and im still very actyive. My AN was an incidental find and did not have any symptoms. I lost hearing in my right ear after surgery and did get delayed paralysis, 10 days after surgery(my face is back to normal now). My biggest complaint is my dizyness. It feels like it’s never going to go away. It’s like waking up hungover every day and doesn’t go away. Has anybody else experienced this? They say it. Can take upwards of a year to feel back to normal, but it has seemed to plateaued for me. Feeling fustrated.

    1. sallystap Post author

      the AN experience is so incredibly unique. Many have varying degrees of dizziness. I had alot of problems right after surgery but it did improve. I heard recently that someone had great improvement after acupuncture. (I have not had luck with acupuncture other than relaxation) but for some it really works. Thanks for your post!!

  17. Nancy S

    I am one year post-op and can really relate to all of your statements. I don’t enjoy having to limit my weekend activities just so I am able to get out of bed on Monday to go to work. I have times that I have a busy day at work that I want to just go home and go to bed – I can barely function. My husband and family have a hard time understanding why I am so tired. My right side deafness does not help either as it takes so much energy just to concentrate and hear what is being said around me. I dread going out where I have to be in bigger crowds and find myself just wanting to stay home. Life is not as enjoyable as it was 3 years ago, before my concussion and then diagnosis a year later followed by surgery. Dizziness and vertigo remain issues that I deal with daily. But I continue to take it one day at a time, resting as much as I can, and will try to get used to my “new normal”. Hang in there everyone – we can do this!

  18. Maura o connor

    Hi .i am 4 weeks post op from my surgery for is great to hear that others have gone through the same thing ..recovering well i think ..still deaf on right side and ringing in my ear thats my constant companion ..scar still numb and sore which is to be expected balence has greatly improved since before my op so delighted with that ..tiredness yes but im still having naps at all funny times through out the day ..but over all i feel okay compared to before the operation ..hope this helps others going through the same thing ..

    1. Michele M. Kirby

      Maura, Congratulations on your recovery. It seems you are doing better than some of us. I am currently 15 months post op and continue to have a dizzy / drunken feeling when I get fatigued which doesn’t take much (walking, talking, concentrating for more than 15-20 minutes straight), as well as daily headaches, single sided deafness, facial twitching and pain are the most prominent of my continued symptoms.
      I hope you will continue to improve.

        1. Michele

          Hi Sally,
          Has anyone written about a spontaneous brain fluid leak? 4 days after my surgery, I began having a runny nose which ended up being a Cranial Fluid leak. I returned to ICU for 7 more days and had a spinal lumbar puncture to release the pressure and stop the leak.
          9 months post op, I still have a leaky nose on the same side as it was when I was in the hospital. Rather than leaking constantly as it did in the hospital, the fluid seems only to run when I have been exerting myself and / or leaning forward facing downward. I have had an MRI and CT-Scan, and my doctors say there is no sign of a leak. Unfortunately it does not leak constant enough to collect a significant sample to take to the doctor.
          I have read about other people having such a spontaneous leak, but as with my doctors not understanding my continued dizziness and headaches (15 months post op), they do not think I am having a cranial leak either.
          Does anyone know of a test that can be done to find such a leak?

      1. Maura o connor

        Hi michele .thank you .so far so good ..i no wot u mean by a drunken.dizzy feeling .i find the same thing happening to me especially if i have visitors or need to focus on something for a short time ..the tiredness is also hard to get used too ..even tho its early days for me at the moment ,i believe it can go on for a long time must be very frustrating for you after 15 months to still have those feelings surgoen did say that it could take up to 18 months for things to settledown ..hope u feel better soon and life returns to normal again ..

    2. sallystap Post author

      Hi Maura, Yes, this is quite a journey. It’s also so incredibly individual and unique. I’m happy to hear that you are finding comfort that you aren’t alone. It’s also great that you are seeing progress. Acknowledging the improvements helps us push for more. Thank you for your note!

      1. Maura o connor

        Hi sally ..thank you is indeed a journey ..a scary one at that ..but im delighted to find that theres a book that i can get ..looking forward to reading it ..maura ..


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