Hi Steve,
Thank you for this thread. Warning!, I have a tendency of being long winded. However, I will try to stay focused. Please let me know if this is over the top.
Chris I thought your post was awesome, I just hope mine is not too raw or off point.
As of this post my wife is 26 days post-op.
The weeks leading up to the surgery were tearing me apart. I couldn't believe that my wife's life was about to change forever, and I couldn't fix it. It was, IS, horrible. I became emotional very easily. The Saturday night before her surgery we were at the laundry mat, like every other week. But this week was different. Would this extremely simple task that only took an hour, where we just sat and talked, and watched the laundry tumble, become too much? Depending on the outcome of the surgery, would people be watching her when they picked up on any of her symptoms and upsetting her, would all the people walking around or just the tumbling of the laundry make her dizzy, what about the noise of the machines and the voices, would that drive her nuts? Such a simple thing, right?
For weeks Scarlett had been scouring the Internet for information. Finally she came across the ANA web site. Yes there is a lot of information on the site itself, but it wasn't until she got on this forum, that our outlook and perspective took an extreme turn for the better. The information that was just words on paper, suddenly had a voice. The possible outcomes or scenarios now had emotion. And the gaps that were in the information gathered, were beginning to be filled in. You can gather all the information you want to, but there is no substitute for real life experience. The individuals on this forum helped us put the information that we gathered together, filled in the holes, and would openly and honestly tell you what it felt like to lose your hearing, to have different noises in your head, to have a combination of vision and balance problems known as "Wonky Head"?, and of course facial paralysis. You can't get this from a newsletter, or a textbook. One of the biggest issues everyone tried to drive home was that each AN journey is unique, no two are the same, each experience, and outcome is difference. So, take what you learn, prepare yourself the best that you can, and understand the rest is in someone else's hands.
Knowledge is power, but there is nothing anyone can do about that helpless feeling you will experience. This will be an emotional rollercoaster, you can't control. But, you will get though it.
The week leading up to the surgery, while still very emotional, now had focus. We understood what we needed to do to prepare ourselves for "The New Normal"?. We got the house spring cleaning wrapped up, lined up family and friends to come stay with Scarlett, so I would be able to go out to do the banking, shopping, post office, laundry, and so on. Scarlett had also prepared foods in advance, so I wouldn't have to cook. She's unbelievable!
The day of the surgery was quite an experience. I hope this isn"t over the top.
I got to the MGH "Gray Family Surgical Waiting Area"? at 6:45 a.m. There is a nurse that goes back and fourth to the operating room and gives you an update every 2 hours, plus or minus a half hour. There are also 2 volunteers that are there to answer questions, and they have computers that have general information regarding the surgery. After 3:00 p.m. there was only the 2 volunteers, and all they could tell me with regard to the surgery is when it was done. My sister-in-law was with me, and she taught me how to play cribbage. I figured there was a lot to that game, and the concentration would keep my mind occupied. I was right. Later a close friend arrived and joined in the wait. We didn't remember hearing that the updates would stop after 3:00 p.m. and around 5:15 p.m. or so I started to panic, it's been over 8 hours since the surgery began and Dr. Barker is not done yet. I was thinking there has to be trouble, the nurse said during one of her updates that the tumor was sticky. I was becoming unglued, oh my god, this isn't good! Finally, at 6:44 p.m. one of the volunteers got a call, came over to me and said "Dr. Barker's on the phone". She took me to a private waiting room, and closed the door as she left. The impact of the immediate isolation was a shock. Just me, a phone, and the empty seats where other family members could have been setting. My heart was pounding, I was shaking all over, and the fear was unbelievable. I picked up the phone and Dr. Barker said, we're all done, and she's doing fine. The tumor was benign and we got it all. We had to cut the hearing nerve, because it was just too involved. However we had good response from the facial nerve, so that should be okay, we'll know more as she recovers. I repeated back to him what I heard, and he said, it was correct. By this time I was falling apart and all I could get out was, "your great"?. He chuckled and said thank you, that's my job, or something close to that. I thanked him again and hung up the phone. I could hardly hold it together, I was so happy, the tumor was benign, they got it all, and they had good facial response. I left the private room and walked towards my sister-in-law and our friend. I couldn't speak, so I just gave her a thumbs up until I could tell them what he said. I knew Scarlett was already basically deaf in the AN ear, and that the balance issues were part of the "New Normal"?. So really I didn't even think of those, they were already a reality. It was explained to us from the start that the operation was about preserving the facial functions, and that the rest would be a bonus. Now I had to wait to hear when we could go up to the ICU waiting area. The fear was easing somewhat and I stopped shaking as I kept reminding myself that they had good facial nerve response. Finally at 8:10 p.m. we were told we could go up stairs, to the ICU waiting area, where we waited until 8:30 p.m. As we walked down the hall toward her ICU room the fear grew and I thought I would explode. Walking over to Scarlett, she looked peacefully asleep. Then someone said something, and her eyes opened slowly, and a small smile emerged, accompanied by a blink, and I lost it again, as I almost am now the emotions seem to be sticking with me, my sister-in-law and I hugged and cried, as she chanted she's okay, she's gonna be okay. I turned and said hi to Scarlett, gave her a kiss, and told her she looked perfect. I told her Dr. Barker said the tumor was benign, and that they got it all. I gave her another kiss and told her I loved her, and told her again her face was perfect. Our close friend is a Neuroscience ICU Nurse in a near by hospital, and she gave Scarlett a quick once over her self and told us she's doing fine. After 15 - 20 minutes we left so she could rest.
I wanted to take you along with me so you will realize that emotions are going to be strong, and will break the strongest of the strong. By keeping yourself occupied, sitting where you can't see the clock unless you want to (which is the big table on the left as you walk in to the "Gray Family Surgical Waiting Area"? at MGH), taking a walk throughout the wait to get a coffee, a muffin, a soda, or just going to the bathroom will help the time go by. We were fortunate to have a nice guy and his stepdaughter at the table and we chatted and told stories. Anything you can do to keep your mind off the time, and the surgery will help. And when you get the call that the surgery is done, don't take off like a rocket by yourself like I did, bring the one's that came with you. I just took off, not trying to be selfish, just not thinking. The absolute most important thing for you to do is not worry about how long the surgery takes. These people are the best, and masters at what they do. Taking longer doesn't mean trouble, as I was feeling, I means their skills are being put to the test, and believe me they are up to it. All caregivers can do is be patient, and keep your mind busy. No one can guarantee a great out come. There is a higher power in charge of that.
The day after surgery Scarlett was still groggy from the surgery. She couldn't eat and was still connected to the IV and things. On the second day after surgery it was like someone flipped a switch. She was eating some, mostly ice cream, fruit, and drinking plenty of liquids. She was disconnected from everything, and walking to the bathroom without any type of assistance. The hospital staff also had her walking down the hall, as well as up and down some stairs. She was released the third day after surgery. I was concerned that the 1 ½ hour ride home might be hard on her, but she was fine. I watched her head as she sat backward into the car, how she walked, stayed behind her on the stairs once we got home, and basically watched every move she made so she wouldn't hurt herself. I did everything but go the bathroom for her. This is your place as the caregiver, I'm sure you won't mind one little bit, just as I didn't. As she wanted to do things for herself, I stayed close and let her alone. It took Scarlett several days before she could type on the computer without getting dizzy. She is improving every day. Today she actually made her maiden voyage driving 3 miles up the street to the grocery store while I finished up on this post. She said that looking up and down the shelves made her pretty dizzy, but overall the experience was okay.
As a caregiver, I keep an eye on everything she does to see how she is handling what she is trying to do. But, as with every little chic, they will eventually want to leave the nest, and you will reluctantly have to let them fly. As Scarlett and I say "that's the plan"?.
You too will do fine as a caregiver. Inform yourself, don't be afraid to ask for help be it from the people on this forum, your family or friends. You'll be amazed at the support you will receive. Dig deep for the strength you will need for the journey ahead. Remember that it is up to you to keep your AN loved one out of harms way, eating regularly, taking their medications on time, getting their rest, and helping them regain their independence as soon as possible, for their sake not yours. Get up with them when they get up regardless of the time, you're the watchdog. One of the biggest things you can do is take care of your self too. You will be no good to your patient if they are worried about you all the time.
My hope is that my experience helps someone else's journey as a caregiver.
If I can help you some how, please post or PM me, and I will do my best.
Rich
