Hey Team Robot, here's the "1 Week later" update.
Those who were following along on our FB group know that the surgery went VERY well. It took half the time of some peoples DBS surgeries, and it was all done in one procedure. She was in at 5:30am, had the halo screwed to her head by 6am, and they started about 6:30am. I was BLESSED to have our dear friend Shonda, Amy's mom Belinda, and Amy's Aunt Sharan with me. If they hadn't have been there, I would have fallen to pieces. I was especially glad to have Shonda there with me. She has known Amy for a LONG time, and has gone through this whole ordeal with us from the get-go. She knows Amy as well or better than I do, so needless to say she is as emotionally invested in Amy's well being as I am. We were sharing the same emotions from the same point of view. Meanwhile, Belinda and Sharan are on a whole different level since they've know Amy all her life. (Duh.) Having all three there made me feel at peace, but I REALLY knew it was going to be OK when Dr. Desalomes said "OK, so we'll see you guys about, say…1pm?" Hearing that confidence in his voice and the news it was only going to be about 6 hours or so was such a relief, considering we were prepared to hunker down all day. We had a nice place to sit in west part of the lobby, and I got calls from a nurse on the phone next to me about every 45 minutes or so. Each call was very positive, although the first four started with "Mr. Courson? Um, yeah, OK….." before she got on to the good news. Of course each time I heard that, my face would drop and Shonda, Belinda and Sharon would get freaked out. I put on a big cheesy (fake) smile every time I answered the phone from then on out, which lightened the mood. I remember thinking how amazing it is that we could laugh together while Amy was getting BRAIN SURGERY. I think it's just a testament to the love for each other and Amy that we had going in our little support group. We got the final call from a nurse at 12:20 saying they were installing the second stimulator in her chest and everything was A-OK. I stepped out to get a drink, and when I returned I found out that I had just missed Desalomes talking with everyone. I was pretty upset that I didn't get to hear the update firsthand from the neurosurgeon until I heard the update. He said that the stimulators were placed in the OPTIMUM position, and that it was one of the smoothest procedures he'd ever performed! (Mind you, he's done 600.) The best news was when they briefly turned the stimulators on to do motor skills tests to see if there could be any complications that her right hand "unclawed" and her right leg/foot straightened out…except her pinky toe. That's when I allowed myself to cry because it was over, and the thought of Amy being able to SEE her body turning normal just turned me into mush. (I'm welling up with tears right now as I write this!)
To wrap your head around the gravity of this news and that exact moment in time, let me just outline the struggle that preceded this moment. We met in May of 2005, and she began getting sick a few months later. We have gone from her having a numb patch on her leg, to twitching, then violently spasming. She has suffered absence seizures, being guinea pigged with all sorts of caustic drugs, and becoming skeletal from them. We have endured being told she may have Parkinson's, MS, Tourettes, and also a botched spinal tap that gave her an excruciating "spinal headache" in which she had to undergo THREE blood patch procedures in her spinal column. (Google "Spinal Headache" if you want the brutality of this incident plainly illustrated.) We have been told that it's all in her head, and that she is causing this. She was told that because she's a woman, she can't handle the stress of her job and that quitting at her prime would improve her condition. A one week sabbatical from work to "just rest" showed that she was just as bad at home, and a two week vacation in the hospital for observation, physical therapy and occupational therapy also proved that to be utter nonsense. We had the Baclofen pump installed in her spine and abdomen to help with her severe spasticity just so she could try and live a normal life and keep her awesome job. We have been fired by neurologists and told that her sense of humor in the face of being crippled was too morbid. We have been told on NUMEROUS occasions that DBS just wasn't an option for her. We have had to make the realization that Dystonia was winning, and that she could no longer work. We had to go talk to the president of her job and tearfully have her step away from a career that she LOVES and go one permanent disability at the tender age of 34. We have had to alter our lives in SO many ways to accommodate Dystonia. In the year that she has been on disability, she has been directed by our neurologist that she is limited to TWO HOURS A DAY of any physical activity. That's not two hours at a time, that's two hours TOTAL. Getting up to use the bathroom? There's 10 minutes chipped away at her physical activity window. Feeding our furry babies? Yep, there's another 15 minutes out of her day! So now she has essentially just spent 25% of her allowed daily activity, and the day is just beginning. For over a year, she has been confined to the recliner, blankets, and pain medications. Her quality of life was SHIT.
I could go on, but I think I've made my point. All of these things that have happened in our journey all came to me instantaneously as I heard the news that her body RESPONDED TO THE PROCEDURE. We have not had ANY hope in almost SIX YEARS, and all of the sudden I was allowed to actually picture Amy & I having the life we deserve. The life that we dreamed of having together when we met, the life we planned to have when we got married, and the life we had say goodbye to because of Dystonia was now actually POSSIBLE. It was the most beautiful thing I have ever heard in my life.
*(OK, I had to walk away from this post for a day and come back because it was too emotional for me. It was just so heavy to outline everything that Amy has suffered, and it was breaking my heart to re-live all those awful moments in our lives. Let me continue…)*
She stayed in the ICU for the rest of the day and night just to watch for any signs of infection, and got a personal room the next day. She got excellent care, as Presbyterian always offers. It was so excellent that when I went to visit her on Friday morning she was ready to be discharged! What a trip that we had our Amy home by noon just two days after such a radical procedure. She kept the bandages on her head until Sunday, and now she is rockin' the skull & staples full time. She is healing well, but she is very ready to get the staples out of her head. She has a total of 39 staples in her melon. There are nine on each side on the back of her head, and the rest in two semi-circles on the crown of her head. There's no more swelling, so the staples are looser and she feels them shifting and catching on the tiny little hairs on her head. You can imagine what a ghastly feeling that must be. Her two chest incisions were glued together and covered with a clear tape, so her chest scars will be quite minimal. They'll definitely show, but like her extensive tattoo work those scars are a proud mark of the journey she has been on. She is scheduled to have the staples taken out on the 21st, and we turn her on and start programming her on the 27th!
We still have my wonderful mother-in-law staying with us so I can keep working and not have to worry about her during the day. HOWEVER, she isn't exactly an invalid now. She is much more mobile than she was pre-DBS, even though her stimulators aren't even on yet. While she is suffering pain from the incisions/staples, she hasn't had a major "storm" and has been able to sit by her garden outside, go to the store with Mom, and the best part is she got to visit all her friends and coworkers yesterday afternoon, and only had tremors. It's been documented that just having the correct placement of the leads in the brain can yield positive results, and we can definitely see that is true. We have said for years that if she could get DBS and it stopped her pain, then it would be a victory. Well, she has been getting a small taste of the freedom that everyone takes for granted! It is an indescribable feeling being able to have hope, actually SEE her feeling better, and coming home to an Amy that is calm, happy, and not completely WRECKED. Plus she looks really hot with a fuzzy head, even with the gnarly staples in it.
So to wrap up this two-day task of writing this post, right now we are seeing blue skies. We have hope. We can now actually consider the possibility that she could get a lot better and reclaim her life, or even start a new one (with me in it, of course) if she chooses. Mind you, we are far from being out of the woods. We may have up to a year to 18 months before we find the right settings, and we may suffer some setbacks. We may find a setting that straightens her right side, but blurs her vision. We may then fix that setting to fix the side effect, and another side effect may turn up. Of course, we may just find that magical setting very soon and skip on down the road of the rest of our lives, who knows? The future is wide open, guys. We don't know what's going to happen, but at least we know that her quality of life could improve a hundredfold or at least by a sufficient amount. The point is that we have begun a brand new chapter in our lives, and I am ecstatic. Our lives are a fascinating book that we write every day, but I HATED the last few chapters. When I listen to the audiobook, I'm definitely skipping them to get to the good part of the story. J
Do me a favor, and appreciate the wonderful things and lovely people you have in life. I know it's easy to buzz through our lives and not pay attention and appreciate these little things, but I'm here to tell you that things that get taken for granted in our lives are the dreams of people that don't get to do those little things. I'm not saying that to be heavy-handed, I'm saying it because I want you all to see your life through Shakey Amy's eyes. I can tell you right now that no matter how crappy your day is, or how "unsatisfied" you might be with your situation, you have it GREAT. Like I said in a post on my personal newsfeed last week: "Love your lover, hug your mother, and get out and appreciate the beauty that surrounds you". I sincerely hope you don't have to learn this lesson too late.
Educate Others=Find a CURE