I would like to take a moment before I dive in just to explain that getting an Occipital (or in my case Supraorbital and Occipital) nerve stimulator implanted does not mean that you are having brain surgery. The wires and leads are all placed superficially under the skin outside of the skull. There is no skull cutting or brain poking involved in the process.
I wasn't really sure what to expect after surgery. I knew with my previous encounter that all I could truly count on was being in pain and not being able to walk in a straight line. Thankfully, for my permanent placement surgery, I was entirely asleep. The surgery itself only took a total time of about 2 hours. However, with having to shave hair, get my body into position and tape everything into place, I was in preparation for 4 hours. My mom and I arrived at the hospital at 8 in the morning and we did not leave until 8 at night.
The pain after my trial surgery was honestly not that bad. I was heavily sedated and in and out of sleep from heavy narcotics. The real struggle I faced was being scared. I was mostly awake during the trial placement, meaning that I could feel when the surgeon cut into my forehead and started shoving wires underneath my skin. I was awake enough to answer questions to help with the placement. That was the painful part. Post surgery, all that really happened was that I came out of shock.
My body had just undergone and grueling surgery, one that I was conscious for no less. I was given no warning that so much pain would be a part of the process. So when I woke up in the recovery room and saw my mom, the first thing I did was start screaming. I wish I could say I handled it all well. I wish I could say that I had known worse pain. But I can't. So immediately after waking up, I was screaming and crying and shouting about how scared and unprepared I was. I remember shaking and sending away the nurse every time she tried to give me narcotics, wanting to shake the haze the drugs put me in.
Eventually the nurse disregarded my wishes and gave the medication anyway. I'm grateful for it now, but in that moment I was scared that if I fell asleep I would wake up with someone digging around in my brain.
My second surgery was different. I was asleep for the duration of the surgery. I woke up as I was rolling back to the recovery room and greeted the man who was going to be my programmer. He seemed stunned that I was awake. He proceeded to show me how to use my new remote control to operate the strengths and areas of my newly wired body. As the man talked I slowly started to feel like someone was driving an ice pick into my head. I quietly asked for pain medication and continued listening.
But after about five to ten more minutes, the ice pick was back and I had to stop my nurse again. This process happened several more times, and each time the ice pick was hotter and stronger and sharper. I blew through all of my allotted pain medication in less than an hour of being awake and still had to deal with agony. The discharge floor, where I could have received more medication was currently all booked up and so I was stuck in the recovery room with a severe pain and rising nausea.
So for those of you who have never had surgery, I'd like to tell you a few things your doctors won't:
1. They will likely use a tracheal tube to help you breath during surgery. Because of the way these tubes are inserted and removed, when you wake up and try to talk you will feel a dryness and a pain in your throat similar to a viral infection.
2. There is only so much medication that is allowed for every patient. If you run through it quickly, alert your nurse as soon as you can so that they can work on getting you to the next station.
3. Nausea will creep up on you like the plague, so be careful with your post surgery food and always drink the offered ginger ale.
4. Tell people who will try to move you around where you had your surgery. I know this seems silly, but outside of your surgical team, no one knows what happened to you. Your recovery team needs you to tell them what you cannot move, where you should not be touched and how much assistance you need from them.
5. You will not feel like yourself for the next 3-5 days. Especially if you were under heavy anesthesia. You will be extremely tired, groggy and hazy. Your speech may be normal or it may be slurred. You may experience vertigo and dizziness upon sitting up or standing. Take it easy. Your body is not used to all of the drugs and injuries it sustained.
6. It is okay to sleep all day. See above.
7. ASK FOR HELP. This was the hardest part of surgery for me, but you will have to realize what I eventually did. Your body cannot recovery if you keep using it the way you did when it was whole. Your body may be sewn together, but that does not mean you can resume your regular activities. Focus on rest and recovery, not strenuous activity. Even if it means asking for help for the littlest of things.
8. Do not feel like you are lesser than anyone else because you have to take medication around the clock and you cannot do anything. Everyone recovers at different rates. Follow your surgical team's instructions and call ASAP if anything is wrong. I developed a severe rash due to an allergic reaction. Thankfully my mom had the sense to call my nurse right after it developed and we were given instructions to care for it. Do not self diagnose after surgery. Your team has probably seen and heard it all and can quickly differentiate a threatening development from a harmless one.
9. Your triggers may still cause a flare in pain. Talk with your surgeon and specialist about what to expect after surgery. Do no go in expecting a cure. But call your doctors immediately if after surgery your symptoms have gotten worse and not better.
10. Finally, don't give up. Post surgery can feel like the worst time in people's lives. You may feel depressed or angry or just sad. These feelings are normal but if you feel like they are getting in the way of your recovery contact your surgical team immediately.
I wish you all the best in whatever comes your way. You can get through. I believe in you.