On May 21st I had a procedure done called Endolymphatic sac decompression (ELSD). On my right ear. This procedure is done to help prevent the debilitating vertigo attacks I get with my Menieres Disease attacks.
Now, I look pretty happy in these pictures. And while surgery did go well, that’s mostly the drugs. I took the strong pain meds for a few days, but they upset my stomach and anxiety so I switched to Tylenol.
It has been two weeks now since surgery and I can tell you a few things that surprised me.
First, I definitely wasn’t listening when they were saying it was “major surgery” and definitely underestimated the surgery itself and the recovery.
Second, recovery has been far (far, far, far) more mentally challenging than physically challenging. I’ve had countless panic attacks, phone calls or emails to the doctors or on call staff to answer questions, and many frustrated moments of “why can’t this just be better now”.
Lastly, I have many post-surgery symptoms that are “normal” but were unexpected since I didn’t know what to ask before hand and was too afraid to google it. My earlobe is still mostly numb and they aren’t sure when it will regain feeling. I guess it depends on when the neural pathways that were damaged during surgery are healed. I have some lingering fullness in my ear (like it’s full of cotton), which is because they had to squirt a foam in the other parts of my inner ear to keep them from being damaged during the surgery. So I have to wait for that to dissolve/drain. My ear lobe is still pretty swollen as sticks out from my head, right after surgery I was calling myself Sloth (goonies). My head itself is also tender in places. So those symptoms all ended up being calls to the ENT on call (two Saturday nights in a row) to make sure they were normal… followed by some lorazepam and m&ms to calm me down.
I’ve also had two vertigo attacks already post-surgery. One lasted 12 hours and one lasted 17 hours. The surgery takes 6 months to fully become effective. So this isn’t abnormal, just unfortunate timing when I’m already recovering.
The second attack (17 hours) seems to have left me with a secondary issue of constant wooziness which the doctors believe is a kind of dizziness called Persistent postural-perceptual dizziness (PPPD). Which basically means when I move my head or eyes too fast I feel a little woozy. So now I’ll likely need to do Physical Therapy to help snap my brain back into shape for that while I’m also waiting for my ear to continue fully healing.
There have been days I have really struggled on this journey. The desire to feel healthy and “normal” again is strong. But I’m working with a therapist that helps me keep my expectations in check and has me addressing my anxiety with curiosity rather than anger and frustration. I’m trying to see my anxiety as a flag that something is off and investigate that instead of feeling ashamed and angry that I can’t just “get it together” in the middle of a full blown anxiety attack (after major surgery… my expectations of myself are a bit high it turns out). It’s been a while since I’ve had to suffer through anxiety so much and it has really reminded me that I need to be much more honest with myself and others during high stress times like this about my anxiety, it’s severity and ability to cope (hint: I have no ability to cope right now).
All that said – it’s two weeks out. Today, so far, I’m in a very peaceful mood. Back to work (from home) and keeping my mind busy. Looking forward to continually making progress. Even baby steps. I’ve been walking the dog around the house for my own kind of therapy/PT and it’s been great.
I’m so thankful to everyone who has supported me physically and emotionally. It’s been a traumatic two weeks (but really almost 3 years since my initial Menieres diagnosis), but two weeks ago I could not wait to be two weeks out. :) And here I am.
So, I’m very hopeful the surgery works and my vertigo attacks get less and less and eventually go away. And I hope with PT that soon enough I’ll be feeling less dizzy on the daily. I’m hoping to look back on this in two more weeks and be content with whatever progress has been made.