Surgery Number Three
On January 12, 2022, I walked into the surgery floor to start the trial process of getting a stimulator placed for my bowel and bladder. I have shared my struggles with the complications of this surgery and how I adjusted to life with NMO now that I'm bionic. (I will admit that saying I’m bionic or robotic makes me feel cool!)
After the first two hard weeks of going through a trial for the stimulator, they told me I was a good candidate. I was scheduled to have the final surgery on January 24th. My doctors were the best, and I was at the best place possible to have this procedure done - the hospital where this device and surgical technique had just been introduced.
Adjusting to life after surgery
After receiving the final surgery, I was now set to go on with my life, worry-free without bowel and bladder pain! Right? Unfortunately, I don’t think it would be Avery’s life if something didn’t happen in between. Don’t get me wrong. This surgery changed my life. But it's still a bit of a struggle getting used to having a battery in my back.
There are some pros to having the stimulator. I can finally live my life without holding myself hostage in the bathroom for most of the day. This would happen before I got the surgery because I was either having nausea, vomiting, or experiencing troubles or pain with my bowels and bladder.
The consequences of losing weight
Around the time of my first surgery, I was a bit heavier. This was mainly because of the medication that I was on. After my surgery, I was healing up fairly nicely and adapting. I'd stick the stimulator charger on myself every two weeks and try my best not to lay too hard on the side of my body with the battery.
After my surgery and being taken off a certain medication, I lost weight rapidly. It didn’t matter what I ate, or how many calories I had. I was bed-bound for about 2 1/2 months. I also needed pain medications, but the opioid and painkiller addiction problems that we face in the world made it nearly impossible to get medications that would help. So, I was sent on the way with IM Toradol.
If you're unfamiliar, IM Toradol is an intramuscular injection of a very high dose of acetaminophen. Thankfully, because I also have a very rare, chronic migraine condition, I have given myself these injections for years - so many that I can do it all by myself. But stabbing myself consistently after surgery wasn’t the most fun. So, most of the time, I just went without any pain medicine at all.
My stimulator moved out of place!
Being in so much pain and couldn’t move, I didn’t get around too much. I couldn't work out as much as I was before, and I didn't maintain the same weight I was at the time of the surgery. Since I lost so much weight, the stimulator battery in my spine ended up moving. The stimulator needs to be pocketed in tissue but still deep enough to connect to the spinal cord, and my muscle keeps it in position.
Thankfully, my stimulator still worked well, but I noticed around month six post-surgery that I started to have some more complications. This time, it wasn’t anything to put me in the hospital or emergency room - just a lot of discomfort. And due to my chronic illness and syncope fainting, the possibility of me passing out and falling right on the battery probably isn’t ideal.
A shocking realization
Because the battery has repositioned, I will sometimes get shocks over my body, or even if it’s on the low setting, it feels like it's too high, and I have to turn it off for about an hour.
It was also tough to charge since the battery kept moving. The charger was getting more and more difficult to connect. So, lucky for me (or maybe not so lucky - who knows), I got a non-rechargeable battery that has to be replaced every ten years instead of just sitting around the house for a couple of hours while you charge and can’t move, or it’ll disconnect.
The surgery to repair the damages
After speaking with my doctors, we agreed that I needed a revision surgery, which happened before Thanksgiving in November 2022. I tried mentally preparing for this, but I don’t think you can fully prepare for surgery when you already know the outcome has a high probability of pain.
I hope this is the last surgery I'll have for a while before I have my big shoulder replacement. I am so thankful for the new technology and medicine, even though this stimulator has given me a lot of trouble. I’m so very grateful to have it.
Were you misdiagnosed, prior to being diagnosed with NMOSD?