acoustic neuroma, balance, jamis AN, vestibular schwannoma

The Surgery

My parents came out to North Carolina from Seattle to stay with me, my brother came from St Croix for the day/night of the surgery. And, of course, my husband slept in the freezing ICU after the surgery.

Day of, my family and I met with the Neurosurgeon, Dr Ewend and ENT Surgeon, Dr O’Connell both with UNC Chapel Hill, and a small army of their brilliant team members. Told everyone my name, birthdate and why I was there 100 times.

(At first I used the slang, removal of an acoustic neuroma, but I got fancy and said “removal of a vestibular schwannoma” and the approval in the eyes of the medical staff made that my favorite phrase. I also made sure that they would take breaks and have snacks. Need them at their best!)

The surgery duration depends how sticky the schwannoma is and how I respond during the surgery. If its longer, that means that my brain is not swelling much and they are able to remove more tumor. Translated means – don’t panic if this takes a long time. We also discussed prioritizing the facial nerve over hearing.

The next thing I knew, I woke up in ICU. That first night was tough. The surgery was 10.5 hours, and I laid on my left side for those hours. The pain in ICU was my hips from lying on the side for so long, followed by my neck. But I forced myself to make small adjustments through the night, moving and activity is important it got better. Plus drugs.

(I had a tibular fracture a few years ago, receiving a bone graft & plate. Long story, but it was trying to do a Janet Jackson dance move on a chair, that apparently I don’t know how to do. The pain / discomfort from this surgery was CAKE compared to the that procedure. Easy peasy.)

The GOOD: Physical Therapist did take me for a walk down the hall and – if I say so myself – I did great! I walked fine, good posture, a bit shaky of course.

The BAD: I am a fainter, I keeping getting told I have “vasovagal syncope”. My resting pulse is low 50s, and when I respond to some trigger (usually medical) my blood pressure drops and I faint.  After the walk down the hallway, as I was heading back into the bed I fainted and came to with 10 people surrounding me.  This is not new, but it really concerned them. We had a great consult with a doctor and went over family history, they all agreed this is just me.

(I asked “what is the pulse rate I should be concerned with?” My husband said “zero”, the doctor said to him “I want you on my team”) 

The WACKY: I had initial eye issues, where I saw ‘stacked double-vision”. If I looked down the hospital hall, everyone looked like they had 4 arms and 4 eyes. Joe showed me a picture of my scar and I thought for a day or two that I had TWO scars, but it was just my vision. It is better now and I only have one scar.

The experience of my family: They sat in the waiting room for TEN and a HALF hours during surgery. They got nervous (as did friends & family waiting for update). Dr Ewend let them know that is was a good thing. They could work on my as long as my brain was not swelling, which meant more removal of tumor. All in all, 97-98% of the tumor was removed (CT was done the next day to verify).  VERY successful.

(It took 1.5 hours to drill a hole in my skull, which they then covered with mesh after. All the guys who use power tools found that interesting.)

I moved to a room that night, initially with some dread. As I was wheeled into the room, the other patient was in a lot of discomfort. After listening for a while, I learned she had broken her neck a few months ago, it wasn’t healing so she had surgery to fuse some of the bones. She was in so much pain. I shuffles over and held her hand for a while, it reminded me of when I had my knee done and how tough it would be to be alone and in pain. Made me think about how we each have different tribes of people supporting us, and even as a stranger you can make a difference.

The next day, another Physical Therapy test (up and down stairs). Two hours later they discharged me. And I went home.

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