acoustic neuroma, balance, jamis AN, vestibular schwannoma

post surgery, what to expect

Post-Surgery

Its been a while since I posted anything, now 5 weeks post surgery. I have had some great days, always followed by tough days. Most importantly, I am no longer awake the majority of the night, so my writing hours are gone. Today’s post will cover the post surgery experience.

Again, my blog objectives is to share my experience for anyone who may also have #vestibularschwannoma or #acousticneuroma. I believe that much of my success was due to stories that others have shared. (The most important learning, never ever search for “brain surgery scar JPG”, nothing good comes from that search).

The Honeymoon, weeks 1 and 2 post surgery

The first few weeks after surgery were not as difficult as I expected, setting a poor precedence for the rest of recovery. First two weeks, I was walking 4+ miles/day, dealing with some headaches, lots of white noise and general tiredness. I thought that if the progress remained steady, I would be running 5 miles / day by the end of my leave. That did not happen.

My amazing work tribe took care of meals for two weeks (seriously amazing), and my parents waited on me hand and foot. They also could tell I was getting tired because my left eye would get swollen. I never felt anything on the left eye (the surgery was the right side) but a few minutes late my right eye, face or head would bother me.

I was pretty productive during this time, keeping busy with ‘tasks’ that did not require much thought. Sorting all pens/pencils, organizing photos (this is NOT complete), organizing things in general.

Doctor appointments went well, they said I am in the top 1-2% in terms of recovery, and our next check-ins are in March when I have healed, at which time I will have a MRI and sort out next steps for areas like hearing and white noise. (This should have been my warning).

(insight into the recovery, I have to stop typing now because my eye gets very irritated if I type too long).

The Reality Sandwich, weeks 3-5 post surgery

Progress slowed, some things went away and other things popped up.

The doctor said that somedays you will feel great, and the next few days you will not want to get out of bed. This is true, it happened. Following is a run down of the experience. This is different for EVERYONE.

Area Month Pre-Surgery First 2 weeks post surgery Weeks 3-5 post surgery
Fatigue High fatigue, either a nap or 8:00 pm bed time unless late conference calls. Hey, I had brain surgery. Tired all the time, lots of nap, general exhaustion due to the medication and sleeplessness at night. So very tired. made me very nervous for returning to work and frustrated. Could walk 2 miles one day but could not exercise at all for the next 3 days.
Headaches Head felt like it was a balloon blowing up, a few times per day. Eventually took a steroid that addressed it. Headache still there, when I stopped the steroid the headaches came back. Extended the steroid a week and headaches became manageable with OTC meds. Worst headache of my life during the hurricanes in NC. BUT it only happened once. Now, easily manageable with OTC meds.
Right eye issues (surgery side) N/A Feels like it has grit in it when I get tired. Tells me to rest. Same as 2 weeks with increased frequency.
Left eye issues (non surgery side) N/A Doesn’t hurt or irritate, but swells and others tell me to lie down and rest.  Use OTC eye drops a lot. Same as 2 weeks.
Earaches (surgery side) None Earaches when tired. Same as 2 weeks.
Earaches (non surgery side) N/A Earaches when tired. None
Balance in normal circumstances I thought I was old! Stood in the back during yoga because I will fall. I spent time over the months leading to surgery doing a lot of yoga and it was better than it had been in years. Dizzy if my head moves at all. Unable to do any yoga without holding on. Able to walk well with concentration however. Balance gets worse when tired. I look really drunk when I walk Able to do short yoga balances, but risky. I look tipsy when tired.
Balance when moving head quickly, with eyes closed, etc Not an issue Dizzy, cannot keep any balance if my eyes are closed. If rested, doing better. Improvements when doing Physical Therapy.
Taste N/A Pineapple tastes weird. When I am tired, things start to taste off. I also have a tinglefeeling on my toungue, like I did pre-surgery. I think its tied to my facial nerves getting irritated.

Its not a very exciting write up, but covers the 5 weeks post surgery.

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