I think I am doing very well now (all things being relative) 16 days after having my Translab surgery. Prior to surgery I had asked a few questions about what to expect, but looking back I don't think I asked or knew the right questions. Everyone's experience is and will be different, but I wanted to share some things I wish I had known before my surgery.
1. Prepare your Spouse, family, friend to be your advocate - My wife and Sister were with me almost the entire time I was in the hospital recovering, and it was wonderful to have someone there who could help with all the little things (water, more blankets, Sprite to soothe stomach, adjust bed) that seemed tiring especially early on. What I wish they had done was be more proactive for me to ask questions on my behalf. While I really had wonderful doctors, nurses, etc, I unfortunately had a bad initial experience with one ICU nurse that made my already racing mind (likely heightened by the drugs and situation) concerned about my care. Be nice and polite with the care givers, but don't make the brain surgery post-op guy drive the healthcare conversation. Especially when inconsistencies exist or items need to be clarified.
2. Go Suppository Early - For me the Post-Op pain from my incision and sutures was not horribly bad. I used pain medicine, but was never in any severe pain associated with the surgical work done. What did bother me 10x as much was how bad the rest of me felt. All of the surgical drugs, post surgical drugs, fluids and later solid foods, and a post nasal drip kept me bloated, crampy, gassy, up constantly urinating and as a result losing sleep that I desperately wanted to get. I wanted to focus my energy on resting and healing from my surgical procedure but felt like more energy was spent on coping with the other residual issues. I did not feel any relief until I was able to have a bowel movement and start moving all of the backed up drugs etc out of my system. The doctors said I could go home 4 days after my surgery, and I felt okay from a sutures/surgery standpoint to do so, but I stayed until a 5th day only because everything else felt so bad until I got the rest of me okay. I wish I had done a suppository day 2. Note: This was the first suppository I have ever had. I left the hospital on a Friday and my last pain pill was the following Saturday Afternoon as the negative effects of the pain pills outweighed the positive (see above). I would use ice packs or freezer packs and cover from my neck around my ear/sutures to my cheek. This worked for me.
3. Establish Visitation and Phone Call Boundaries - For me the uncertainty with this surgery was the worst. Not knowing pre-surgery what mountain, hill or path would be faced post-op was the hardest part. I had fairly good hearing in my surgical side that I knew was going away as part of the surgery, and while not excited about this, knowing it and the inner ear issue ahead of time made it something I could accept and plan for. Not only did I not have the energy level to want see people initially, but I wanted to know what issues I had to deal with and have some time to understand and mentally wrap my mind around this before having friends, extended family, work etc get involved. I had friends, coworkers etc say they wanted to visit and while post-surgery my wife did tell everyone we wanted no hospital visits and a 2 week moratorium on calls, I wish I had established and explained this prior. I did call certain family and friends in the first two weeks as I felt better so they could hear my voice and feel better about me being the "same Matthew," but that was on my terms.
4. Prepare People for Low Energy Levels- I had asked here presurgery what I would do in the hospital? For me there was no need for anything to fill time as I was either involved with a medical professional, eating, using the bathroom or sleeping/resting. My eyes/vision was not stabilized enough to read anything if I wanted to, but most activity of any kind took precious energy/resources. I would eat and then I was tired. I would go the bathroom and then I was tired. This improved and now at home I am greatly improved over this, but while in the hospital I needed most of my energy for short bursts of activity and then rest. Mentally I was very lucid but everything took energy and I was selfishly wanting to use as much as possible to focus on healing. Looking at someone, engaging them, making them feel good about how I am doing was a drain. I did not want to have to be "on" and engaging. It was very tiring and took up precious resources. I would have explained that to my parents and family so they would understand I am doing well, but don't want a conversation "visit." Not early on.
5. Nausea or motion sickness - I have a hearty stomach and served on a ship in the Navy (good sea legs), so I have been fairly fortunate that this was not a huge issue for me. However, I know it can be for many people and looking back I can imagine how this could easily affect people and it would make recovery more challenging. Your vision is unstable, you may have double vision, and optically your brain has to learn to get the eyes in sych with only one inner ear input and putting it all together to lay, sit, stand and walk. I don't have any advice on dealing with any nauseau or motion sickness except to take the drugs they offer. I took this two times "just to be on the safe side" and am glad I did. Others might have more helpful insight, but this is unfortunately something that can be an issue.
6. You need to exercise but you are not training for a competition - This was very good advice that my Neurosurgeon gave me in the hospital. You need to do the eye, PT, OT exercises. You can't just not try. However, as I am younger than most AN patients and starting in fairly good health/condition he also wanted to make sure I did not view the early exercises as working out. The goal is to get everything going and work on coordination and slowly build stamina, but NOT to get a good burn or a good work out to the point of exhaustion. Push yourself, but don't try to tire or exhaust yourself. Baby steps.
There is probably more and hopefully others can add to this or add their different experiences. But these are some things I would tell my pre-surgery self if that was possible.
