Acoustic Neuroma – Depression and Timelines

 

Depression and Acoustic Neuromas are definitely linked – in my non-professional, experiential opinion. The same sentiment has been expressed by many others throughout the acoustic neuroma world. I don’t know if it’s because our brains have been invaded or because our lives are too often turned upside down. Regardless of the reason, I can state that depression for our world, and the world of anyone recovering from a major medical crisis, is real.

When I was in the hospital, my family and I learned that “hospital time” is often very different from “clock time.”  Frequently, the time given for appointments, procedures, and hospital releases are truly more of an estimate or recommendation than an actual time that is met.

In defense of the medical profession, there are valid reasons for delays. Critical cases pop up. Our bodies heal slower than we (and the professionals) predicted. And when a doctor spends some extra time answering my questions, I always appreciate it and think about that when delayed – perhaps someone really needed an answer and I’m happy to think my doctor took the time to answer rather than abruptly leave the room in order to be punctual.

Therefore, it shouldn’t be a surprise to us that we each have our own “acoustic neuroma recovery” timeline. Each tumor grows at a different rate – though all within a somewhat common range. Each tumor causes different symptoms – all within a family of symptoms. And each recovery from treatment takes a unique path – somewhat within the guidelines (not strict rules) of the acoustic neuroma rules of nature.

Depression is one of those paths that each person takes – ranging from mildly set-back to debilitating and clinical. We are depressed that we got a brain tumor – but grateful to be alive. We are depressed to lose our old selves and each take our own time to return to ourselves – or more commonly come to terms and acceptance of a new self. One with different limitations wrapped into an old self who remembers.

Depression is not just a feeling, but a chemical imbalance in the brain that we need to really work at to change. Again, each person has their own path – some use therapy or pharmaceuticals. Others use natural holistic approaches. It is not often that we can just think our way out of depression. It’s like getting out of a well pit without a ladder – kind of hard to impossible on our own. One misconception about depression is that we want to stay there. We really don’t.

What is helpful from those around us is acceptance and grounding. Acceptance that we are going through a rough process that nobody can shortcut for us. Acceptance that we are still the same inside but fighting a new dragon. Grounding that we aren’t being judged for having our own path. Grounding that those who surround us are walking beside us.

It took time for the brain tumor to grow. It took time for our bodies to heal and adapt. It will definitely take time for our emotions and brain chemistry to adjust. Most importantly, it sometimes takes a long time to adjust our sense of value to the world and to redefine our individual comfort zones.

16 thoughts on “Acoustic Neuroma – Depression and Timelines

      1. NICK DINELLE

        Carole,

        One of the most important components of recovery following treatment of an acoustic neuroma is rest and plenty of it. Unlike muscles and bone, nerves heal best when we are at rest. What you may be experiencing is exhaustion. For the first few months following surgery I slept between 12 and 16 hours a day and I was still tired. The exhaustion would come and go and lasted a good three years. In many areas in Canada there are ANAC (Acoustic Neuroma Association of Canada) support groups that can help; sometimes it helps a lot just to talk about your issues and frustrations related to your recovery and lifestyle changes. I have a cd with all kinds of valuable information on acoustic neuromas and would be happy to send you a copy free. If you are interested I can be reached at ndinelle@rogers.com.

        Best regards,

        Nick

        Reply
    1. Hera

      I’m 8 years post OP. Dear in Right ear, tinitus, suffering chronic nerve pains every day, having lots of migraines. These are just the obvious things I suffer from 8 years after my operation. I was only 44. There is a lot to say write etc about what a shit card in life we have been dealt, but it is not getting us anywhere. What has helped me is to accept that I have been dealt these cards, I have to get on with life and fight every day to be able to do more. It’s not always great but I will keep smiling and accept that before and after AN are 2 different periods in my life. The second one has restrictions but I still enjoy life to the fullest

      Reply
        1. sallystap Post author

          There are many options that are so individual that “one size” does not fit all. There is a DNA test now called GeneSight that your doctor can order. It’s a simple cheek swab that tells you which medications are best for you specifically. It is pretty cool with a report showing green yellow red for each psychotropic category of drug. Insurance sometimes covers it. Depression definitely has its hills and valleys that I’m learning to recognize. Thank you so much for your question!

          Reply
  1. Ginger Simpson

    I’m a nurse my brother just diagnosed 6 months ago. MR I done. His dr, “the specialist” in our area says he will just have to cope with his symptoms, tumor to small to operate. He is having debilitating dizziness, nausea and severe vomiting. He is taking a leave from work. He is a car salesman. They put him on a low sodium diet, Lasix 40mg twice a day with k+. Phenergan gel 12.5 MG every 6°. He had colon cancer about 8 yrs ago. My concern is do we just sit and wait or do we seek out a specialist such as the mayor clinic. He is practically bedridden from dizziness. Would appreciate talking with someone who has gone down this path.

    Reply
    1. NICK DINELLE

      Ginger,
      The best time to treat an acoustic neuroma is when it is small as they can use either cyber or gamma knife. You should check out the Skull Base Institute website; they have developed new treatments far less intrusive than the current surgical procedures.
      Go to http://www.skullbaseinstitute.com.
      Step one should be to get a referral to a specialist who has experience with acoustic neuromas. Contact the American Acoustic Neuroma (https://www.anausa.org/) if you;re in the US or the Acoustic Neuroma Association of Canada (anac.ca) if you’re in Canada and they can point you in the right direction.
      Best regards,
      Nick

      or

      Reply
    2. Martha

      I’m a nurse, and I was diagnosed in December. I had the same symptoms that your brother has, and my tumor is small too, 2.4mm. I was in bed flat, without a pillow for 5 days. What I’ve noticed is that any other problem can cause dizziness, is worst for us. Like any little nose congestion, sore throat, needs to be treated with antibiotics for 20 days. It helped me a lot. That was the first step, that my doctor addressed, it allowed my to get out bed. The endocrinologist also found that I have Hashimoto and she started me on Synthroid, the original. Also was another huge help. Another thing that I found that triggers dizziness is any little amount of food with processed sugar, hight carbs; caffeine drinks increase migraines and mucus production. Resting and sleeping enough hours is important. Encourage him to look for things that make him more or less dizzy. I also notice that when my neck muscles are tense, it can cause a lot of discomfort. This week I was able to go back to driving after doctors evaluation. I feel great.

      Reply
  2. Lisa

    I Was diagnosed in December. I had my tumor removed February 8. The paralysis was not something I was prepared for. The doctor say it will get better but I just don’t see it

    Reply
    1. sallystap Post author

      Hi Lisa,

      Facial paralysis is shocking and a surprise to many – including me. I just couldn’t allow myself to even think about it before surgery. It does improve over time. The healing rate is slow, so it will be several months before there is change, but if there is any nerve intact it will. Did the doctors say? If you look back through some of my posts, I have several about facial paralysis. I hope it helps you. Hang in there. Day at a time.

      One issue – I wear contact lenses. For several months, I was not able to keep a lens in my eye. Eventually, though, it healed and I now have no problem with it. Eye health is very important – so make sure you get good lubricant for your dry eye.

      Sally

      Reply
    2. AD

      I believe it takes months to get back. I had lost ability to swallow, was laughing and smiling only through half face, blinking only one eye while the other lagged severely. Keep massaging your face gently whenever you find time. Be patient with yourself. Don’t think of recovering in 10-20-30 days. Put up a long time line like 3 months before a minute change may be noted. by an year you will never get to know when u started improving. Most important is to not hate yourself. Keep company of family and friends. Do what keeps you occupied and engaged. Rest as much as possible like a baby (as these surgeries are equivalent to being re-born). Eat healthy, stay fresh.

      Reply

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