Nothing like upcoming brain surgery to keep a person humble.
My, what an interesting place to find myself on this journey of life.
I think I have mentioned that I have a benign tumor on my right acoustic nerve. It’s called an acoustic neuroma. It’s pretty rare, as it happens in about 1 in 100,000 people in the US annually. Lucky me!
Because I am always worried about how my reactions will impact other people, I have been working very hard to stay calm since my diagnosis in April. It wasn’t hard, actually, because I don’t have a lot of symptoms, and it was easy to pretend it wasn’t there. Sure, I have lost about half of the hearing in my right ear, but that can be alleviated by sitting to the left of my friends. I am off-balance, but as a clumsy, chubby old lady, that hasn’t been so hard to deal with, either.
I have made my doctor’s appointments, gone to my CT and MRI scans, talked with audiologists, ENT specialists and PTs. Calm, on top of things, that’s been me.
“Oh, don’t worry,” I’ve said to my kids. “It isn’t cancer.”
But.
I am now two days away from meeting “my” neurosurgeon. And at odd moments in the day, I think, “Wait, I have a NEUROSURGEON??????” I have researched the upcoming procedure and have talked to my ENT. And I know that I have to go into a Boston hospital (only 1 1/2 hours away, but it feels like a foreign land). I will undergo roughly 8 hours of “microsurgery” through the bone behind my ear. When I wake up in the ICU, I will be dizzy, nauseous and in pain.
I’ll have to stay in there, far from home, for about 4-5 days. I may not be able to walk without assistance for a few weeks. I may not be able to drive for months. I will lose all of the hearing my right ear,, becoming totally deaf on that side.
I have been a singer with various local choirs for years. I love to sing. I am learning to play the violin and have made a lot of progress. I am a speech pathologist; I live by the auditory world. All of that feels threatened now.
None of this is life-threatening. I should be much calmer. I know two young, brave moms who are facing life-threatening cancer. I have a brother undergoing cancer treatments and a nephew undergoing years of treatment for leukemia.
But I am realizing something this week:
I do not know how to be that brave.
I’m afraid of being unconscious for a whole day. I’m afraid of being out of control. I’m afraid of the pain and the weakness. I am terribly afraid of who is going to come home from the hospital.
None of this feels like “me”.
I want to get up in some strange public place and shout out, “Wait!!!!! I can’t have brain surgery! I’m Nonni!”
Mostly, I am so terribly afraid that I won’t be strong or stable enough to take care of my sweet baby Max. I am so terribly afraid that after I have this surgery, I won’t be me. I won’t be myself.
All of this has me thinking about life. And about death. About what is really important.
I feel so mortal.
I am sad, too, that I’m going through my first medical crisis without my Mommy. Sure, I’m 66! I’m gray-haired. I’m a grandma! But as I try to be brave about the scariest thing I’ve ever faced, I I still wish that had my Mom to tell me it will all be OK.
If any of you have been through acoustic neuroma surgery, can you let me know how it went???
Empty Nest, Full Life 
Lifting you up in prayer our dear friend. Brave is over rated., better courageous than brave. No need to stop feeling afraid as long as it doesn’t stop you from taking care of yourself and facing the realities in front of you. You, Karen, are very courageous and are very, very loved.
LikeLike
Thank you, dear ones! Never felt so fragile in my life…..
LikeLike
Sending positive thoughts and vibes your way. I know that’s not much, but I am thinking of you. It will turn out well, and soon, you’ll be telling us how great everything is going again.
LikeLike
It means the world to know that my “blogger friends” are behind me! Thanks!
LikeLiked by 1 person
Know that many out here are thinking of you in the coming days. I know your family will be by your side and ready to help and care for you. You got this Karen and we are all pulling for you.
LikeLike
Thanks so much, Deb. I know it will be OK. On some levels it will be sort of interesting and novel. I just don’t deal real well with lack of control!
LikeLike
I can relate to so much of this: the loss of control, the fear of the unknown, the fear of not being “me.” The only thing I can say is that you have good, loving people in your life who are strong enough to hear your pain. You don’t have to pretend everything is fine when it’s not. And Mommies don’t leave, not really. You can always hear her voice and remember her love when you feel lost.
LikeLike
Thanks, Rachel! I know you’ve been through so much. It is a tough thing for me to realize that this aging body isn’t up to it’s old tricks and that things go on inside of us without our knowledge.
LikeLike
My Mom gets so mad at her body for not doing what she wants it to do; I’m much more used to that.
LikeLike
Oh Karen! I had no idea that you were facing this! I will hope and pray for you to do well with your surgery. Hopeful there is not too long a recovery and you will be back to yourself? Or an updated version? Wishing you well!!
LikeLike
Hi, Jean!!!! Thanks for reading this; I have been pretty calm/in denial for a couple of months but yesterday I had a little panic attack. I’m an overcontrolling Italian grandmother! What do you mean I will be out of circulation for a few months!? It’s pretty long and tough surgery and recovery so I’m nervous, but hopeful. I’m sure I’ll learn a lot about neurology….. Thank you, my friend!!!
LikeLike
Karen,
Know that I will be thinking of you and sending prayers for your speedy recovery!!! Take one day at a time and let everyone help you, you’ll become a better version of yourself 🥰 Please let us know, when you can, how you are doing😊 My love & Hugs to you my friend🤗
LikeLike
Thanks, my dear! It makes it easier, and less scary, knowing that folks are pulling for me. And I’m trying to think of it this way: I bet I’ll get some hilarious posts out of all of this! I’ll update as I go along!
LikeLiked by 1 person
Hugs to you Karen, saying a special prayer to my mom to watch over you 🙏🤗💕
Sent from my iPhone
>
LikeLike
Thanks, Linda! I love the idea of your Mom, and Nana and my Mom watching over me. I will keep all of them in my heart!
LikeLike
Being scared is so normal! Your friends and family will be there for you, and most importantly, you’ll still be you when this is over. I’m so sorry you have to go through this, and pray for a quick healing!
LikeLike
Thank you, Ann! I am not good at waiting for problems to be solved, or not being in control. I am very lucky, very well supported, surrounded by loving people. As long as I can accept myself after this, I know that they will, too.
LikeLike
Sending positive, healing vibes your way, I wish I had advice or knowledge to share, trust in yourself, and keep your thoughts positive! ♥
LikeLike
Thank you!!!! Working hard to keep looking on the positive side of things.
LikeLike
Oops, I just tried to post a long comment about my surgery and not sure if it posted!
LikeLike
Trying again…
I had a meningioma removed from my surgical spine a year and a half ago. I was in the hospital for seven nights. So I have some thoughts:
No reason for you to be nauseous. Tell the anesthesiologist you want all the anti-nausea drugs he has in his bag of tricks in your IV. With me, they started my anti-nausea meds before they knocked me out. Tell him you want anti-nausea meds in your IV after the surgery. When they stop the IV meds and switch you to pills, make sure you get anti-nausea pills with the others meds (probably Zofran). When you go home, make sure anti-nausea mead are among the prescriptions. I had no nausea. You just have to speak up!
As you recover, it is important to both be kind to yourself and to push yourself. They are not mutually exclusive. You have the goal of being able to take care of Max, which will be a wonderful motivator. Celebrate small daily victories. I was excited to banish my walker to the garage, to bathe without help, to get rid of my neck brace, to drive a couple of blocks to the grocery store, etc.
Trying to post…
LikeLike
Oh, my dear friend! We REALLY are joined at the hip, huh???? I got the same advice about nausea meds from another friend! there is a possibility that my issue is in fact a meningioma, but they don’t think so. If so, that would be better, because it would have less impact on my facial and cranial nerves. And your warning to both push myself and take care of myself is something I have read from other acoustic neuroma patients. I am hoping that it can be done during the summer, when my daughter can help. I don’t feel prickly when she helps out, the way I do with my poor long-suffering husband!
Thanks dear friend.
Are you all good now?
LikeLike
Yes, I am all good now. I have an MRI on the 12th to make sure the thing isn’t growing back. I had no symptoms, the meningioma was an incidental finding, so I was just shocked and thought this couldn’t possibly be happening to me.
I felt blessed to have my surgery at UCSF, which is outstanding for neurosurgery. You are similarly blessed to be in Boston with all its top hospitals.
You will sail through. Really!
LikeLike
Finishing my thoughts…
The person who comes home from the hospital will be you, just a temporarily weaker version, emphasis on temporarily. The pain will be controlled, both in the hospital and at home.
As for your hearing, check out The Beauty of Dusk by Frank Bruni. On pages 173-175, he talks about Clif Magness, a songwriter and record producer who lost all the hearing in his right ear. He gets all of his auditory info from his left. BUT in his brain, he hears sounds from both sides! Our brains are plastic and rewire themselves. His studio and musical skills are as good as ever.
I wanted my mother too (she died in 1998), and one night in the hospital, I felt her presence hovering above me. For good measure, I felt the Holy Mother was there too!
I am the biggest baby in the world. If I got through my surgery, you can too.
Love and blessings,
Janis
LikeLike
Janis, you cannot possibly be the biggest baby in the world. Cuz, just sayin’, that’s ME! I love knowing that you’ve been there, too (sorry!) It is just helpful to know others who can help me to get over myself!
LikeLike
I hate doctors and hospitals. I hate needles. Blood tests totally freak me out. I am the world’s worst patient. I knew from a very young age that I was going to make a terrible old person, and I am! Yet somehow I managed, which makes me certain you will too.
LikeLike
I had MVD surgery for a condition involving a blood vessel wrapped around several cranial nerves, one being the auditory nerve. Same symptoms, same surgical site but on the left side. Lost hearing in left ear and have balance problems. Be glad to share my experience if you want to email me about those two things, keeping in mind that our experiences may not be the same.
You’re in my thoughts and you’ll do fine. You’ll learn to cope.
Hang in there!
LikeLike
Oh, wow, I’d love to chat! Very encouraging to talk to people “on the other side” of this. I can’t find you email on your page, but I’m at momshieb@gmail.com
LikeLike