Extended Recovery
A guide to sloooowly getting your life back.
Drugs, drugs, and more drugs! Upon leaving the hospital I was put on 100 milligrams of oxycodone (you may know this better as Percocet), 80 milligrams of hydrocodone (aka Lortab or Vicodin), 30 milligrams of Flexeril (a muscle relaxer), and two stool softener pills a day. At one point I was also taking laxatives, but these made me vomit. And vomitting with a freshly filetted back is a bad, bad plan. A garden variety of vitamins, suppositories, and enemas were thrown in to keep things interesting. It was really difficult to keep track of what time everything was supposed to be taken, and I therefore made an excel chart, which was very helpful. The problem is that you need to wean yourself off of this stuff as soon as possible, and once you get a schedule that you can remember, it will change. On my schedule I kept a time that my medication was supposed to be taken, as well as a column to write in the actual time I took it. I also had a column for description. Here I kept track of what I ate (I did this because I could eat so little for the first few weeks), what I drank (I was always forgetting to drink) and bowel movements. Yeah, I know, way gross, but constipation was a huge issue and I was so out of my mind on pills and pain from both my back and constipation that I had to keep track somehow.
A word on prescription pain pills. They are addictive. You know this. Everyone knows this. Fact of the matter is that you are going to be on a ton of these drugs for a while, and you will become addicted. You'll be tapering down as you go, and my fingers are crossed for you to taper more quickly than I did. It took almost three months for me to get off of them completely, and the first two months were totally disruptive as they made my head cloudy. Plus, kicking this addiction is Round 2 of what will have already been hell. There are a few things I want to say about this:
  1. For my first month of weaning off of my pills I didn't have a lot problems. It was only when I started having less of them to spread out over the day, and when I tried to kick the oxycodone that things really went poorly. For me it was as though my body had come down with a horrible case of the flu. When I began to feel so awful, I assumed that it meant that my back was healing very slowly and that my body was so exhausted from healing itself without the aid of my painkillers that it was making everything ache. From here on out I didn't cut down my pills as fast as my doctor had recommended because I thought that my body was somehow healing at a slower rate. It never even crossed my mind that I was dealing with withdrawal symptoms until a friend started asking me questions.
    Nina: So, Darci, I don't understand - your entire body hurts, not just your back?
    Me: Yeah, it's really weird. It's not even so much my back at all. My body just aches terribly. It's like mono or something. You don't think I have mono do you? Because that would totally be So unfair. And you know, there's also this whole shaky thing that's been happening. My whole body just trembles when I haven't taken a pill for a while...
    Nina: (pats Darci's head) Honey, you don't have mono, you're a junky!
    Friends, welcome to pain pill addiction. Your back is fine, but your body is going through withdrawals, and the sooner you can get all of the meds out of your body, the better.
  2. That said, you've got to do this in whatever way you can, as rapidly as you can. For me, this has been one of the worst parts of the whole damn process. It is one thing to endure a few weeks of absolute hell. It is quite another for the hell to prolong itself over months. You lose heart, you get depressed, you try to sleep but your body aches too much to get there. My method, and it's been miserable, is to wean myself off of my pills over the weekends. I can't work efficiently when I decrease my drugs, and so it's either suffer through the weekend or not be able to work at all. Once I was down to about four pills a day I then removed one every weekend, which was manageable, but only just. Before this, when I was on a lot more medication, I halved my doses on the weekends. The result of this was crying jags, shakes, loss of appetite, intense depression, and an inability to leave my house. My boyfriend deserves a medal.
  3. The solution, the only solution that has proved at all valuable for me, is DISTRACTION. Books are great, but my tried and true form is comedic movies and television series on DVD. The best thing you can do when all you want is to take another pill, but it's two hours until you can, is to pop a movie on.
  4. You have Got to stay positive. Two months after your surgery you are going to want to be out there, seeing your friends, going to dinners, having drinks, catching a movie, shopping. Give yourself a break. Stop making plans. Realize you still need to heal. And no amount of impatience is going to help you. The best thing to do is to become a maybe person. Ready, let's practice.

    Friend: Hey [ insert your name ], it's Jen's birthday Wooo! We're all going out after work to grab a drink. Come out with us! It's been forever since we've hung out.
    You: Sounds great, let me see how I feel by the end of the day. Raincheck if I can't make it. Thanks for the invite!
    See how easy that was? It will save you untold hours of frustrations, promise cross my heart.
  5. If you can work from home, do so. Set it up before you leave for surgery. I spent most Mondays working from home for my first 6 weeks back because I was still a mess from my detox weekends. For my first several weeks back, I would work from home in the morning and then go in from lunch on. Or work from 11 to about 4, come home and lie down a bit, and then do another round later that night. The days after physical therapy are usually the most exhausting, so try and plan accordingly.
Moving right along to weight loss... I lost 13 pounds while I was recovering (more I suppose, considering the hardware weighs a few pounds). This is no doubt due to an absolute lack of appetite and an adverse reaction to all of the medicine I was consuming on an empty stomach. At my lowest I was down to 102 pounds, which is pretty anorexic looking on a 5'6" frame. My formula finally wound up being Canada Dry ginger ale and oyster crackers (I heart oyster crackers), with the occasional cup of hot Jello (I do not heart Jello) and small bowl of Cream of Wheat. Throwing up after back surgery is painful, and I did a fair amount of it at the beginning. For a while I was forced to take anti-nausea suppositories, and man was it worth it. My stomach was also bloated for at least the first three weeks, and it totally aggravated me to watch the rest of me melting away to what I am sure will be the thinnest I will ever be as an adult, but my stomach sticking so far out.
What really wound up being the cure for me was Physical Therapy. Dr. Moskowitz was part of the Kansas Joint and Spine Institute and next door to his office was Kansas Joint and Spine Physical Therapy. It was hell dragging myself there because the facility was a 30 minute car drive away. What made it 100% worth it was the staff (every last one of them was sweet, helpful and knowledgeable) and the Hydroworx pool. The pool was small, heated to about 98 degrees, and had an underwater treadmill. Being weightless after my surgery was as close to heaven on earth as I've experienced. Being in that pool was to have all of my pain sucked away for the 20 minutes I would be stretching and walking. During this time a physical therapist would usually hop in with me and do a massage with an extremely strong jet stream of water. I'm told this also helps with scar tissue, which can end up actually being another problem with healing. It was always awful dragging myself out of that pool, but it was so worth it. I went three times a week and the days I had therapy were always my best days.
As a follow up to this, I went to Central Park Physical Therapy in New York City and worked with a great therapist named Robert Cheng. This phase of physical therapy was hard work and frustrating. Everything in New York is frustrating when you don't feel well and have to navigate busy streets and packed subways. Still, the facility was nice as was the staff, and I would recommended it to anyone in the city. But first, find yourself a warm pool. I am telling you, it's heaven.
There are a few other practical things that should be addressed before I sign off and wish you good luck:
Dressing: There's this grabber stick thing that you can buy - I bought it thinking it might be helpful, and never used it. There is also something similar to aid with the putting on of socks that I didn't get. I'm very flexible and within days of getting home I was able to dress myself without any problems. That said, I was staying with my parents, and my mother was able to help me for those first few days. Had I been on my own I would have liked having those two mechanical aids. Slip on shoes, draw string pants, and shirts with wide collars will be great for your first few weeks.
Bathing: You can shower once your surgeon gives you the go ahead. Until then it's nice to have a detachable shower head that you can use to wash your lower body off with. Washing your hair during this time is a pain in the ass. My mother and I developed a system where I would get down on all fours, hands in the shower, knees outside. I could lean my head down only slightly, but she could use the detachable sprayer to shampoo and rinse my hair. Time was of the essence here as I couldn't tolerate this stance for more than a few minutes. We used spray on conditioner to keep the time under control. Whatever you do, be sure to keep your surgical site clean and dry with your dressing changed as directed until you have been told you can shower. I had intended to use my father's electric razor on my legs, but when I finally cared enough to bother shaving I could do it by sitting on the side of the bath. Nair isn't a bad idea either.
Using the bathroom: I've talked plenty about constipation, but what I haven't mentioned is the raised toilet seat. Nothing more likely to make you feel like a 90-yr-old than a raised toilet seat, I always say! Still, it's hard to sit down at first, and the raised seat is much easier to use. I consider this a must have.
Eating and drinking: I ate very little for my first several weeks after surgery. My tastebuds were all sorts of confused and when I finally got interested in normal meals again I had the luxury of living in a place where my mother didn't mind cooking. I realize most people aren't going to be this lucky. To them I say, stock up on frozen prepared meals and get some take out menus. If you live somewhere that delivers groceries it's going to help out a lot. And get bendable straws. One other thing to consider is that smaller is better. It's hard to lift much at first and you don't want to be carrying around big jugs of water. The first week I was back from the hospital I was still an absolute mess, and my parent's friends worked out a dinner menu where one of them cooked something every night. Screw flowers! Someone else making dinner may be the nicest thing that you can ask your friends to do if they are looking to lend a hand. Don't forget, it's not just for you. Even if you can't eat, your caretaker is going to appreciate something.
I took six weeks off work, and my first two weeks back I worked half days to ease my way into things. My third and fourth weeks I worked around 30 hours. Finally after that I went back to full time. I should have taken another initial week off, or at the very least worked a few more 30 hour weeks. Thing is, when you're at work, people start forgetting that you can't work like you usually do. I didn't work efficiently for about three full months after the surgery. If you have the luxury of working part time for a while, do it.
I found Scoliosis Surgery, The Definitive Patient's Reference by David Wolpert a helpful book to read. This armed me with a lot of questions to discuss with my potential surgeons. It was also a good resource for my family and boyfriend so they had an idea of what was happening.
Other than this I'll say that it is really easy to get down during all of this. You are dealing with a lot of pain, and it's hard work to keep it under control. You're going to mess up your medicine schedule from time to time and pay the price for it. Any number of bizarre side problems will occur. I had an awful rash that covered a lot of my body that went away about two weeks out of surgery, but it itched terribly. Again, constipation was truly terrible, and my stomach was swollen and uncomfortable for several weeks. I was numb in certain spots, and would itch furiously in other places. Sometimes, inexplicably, I itched in the same place where I was numb. Some days I woke up feeling good, and two hours later I'd be throwing up and doing my best to assume the fetal position while lying on my back. This doesn't stop for a while, and as a result you are going to get worn out. It is one thing to feel as though you've been residing in hell for a few weeks. You can do it. You can do almost anything for a few weeks. What is not fair is that by two months out of surgery you are going to look like you feel just fine. And you will. For four hours at a time, or maybe even six. You'll avoid your friends when you feel rotten and you'll be tired of moaning about things and be exercising stoicism by this point. Your friends and co-workers are going to forget that there's anything wrong with you, and some of them aren't going to understand why you don't want to hang out with them, why you can't help them with the project that they are behind deadline on, why you can't finish your own project in the usual time it takes you. This has been one of the worst parts. I am TIRED of feeling like crap, and I am tired of not living life to its full extent. I want to go out dancing! Or at the very least I want to work a 40 hour week without feeling haggard by the end of it. What I have to keep telling myself is this: You are getting better. You are getting better. You are so much better than you were just last week. And next month you'll be SO much better! What I'm saying here is that this whole process is enough to drive the happiest, perkiest, glass is half full every cloud has a silver lining kind of person into a downward spiral of depression and you have just GOT to keep things in perspective, and go easy on yourself.
I've already mentioned that movies and television DVD sets were helpful. If you're not a Netflicks user, sign up and load your queue before you head out with light weight fair. I also stocked up on silly chick lit beach reads. Save that Nietzsche book for another time when your body is feeling better, and if you happen to have a project you've been meaning to get to (write a screenplay, learn French, juggle fire) don't be hard on yourself if you can't do it.
Another valuable piece of advice I was given by Jenny. Jenny's ramping up to go through her fifth scoliosis surgery in the next few weeks, and if there is an expert on getting through this she has got to be it. She told me to pay attention to the weeks, not the days. To think about where I had been one week prior, not just one day. She was right. I may have gone backwards on some days, but I was always significantly better than where I had been the week before.
Oh, and ladies, please don't get too upset, but your heels, your beautiful, expensive heels that make you feel tall and thin and beautiful, well, you're going to need to put those away for a little while. There's no solid timeline for this, but I am a girl who once wore heels exclusively, and it's 4 months out and I still can't handle it. HOWEVER, zappos.com has next day delivery, free shipping, and free returns. Thankfully flats are in style. And with any luck, you'll be so much taller after your surgery you can ditch the heels anyway.
If you do have to get surgery my heart goes out to you. It's not going to be easy, but the more you can plan for it the better it's going to work out.
For additional questions hit me up at darci@darcimanley.com. Good luck!
Looking for more information?
Scoliosis Surgery: The Definitive Patient's Reference provided helpful reading for me and my family.
My Flickr Photo Gallery. X-rays, before and after shots, and even physical therapy.

Other helpful scoliosis sites:
The Mayo Clinic provides a thorough scoliosis overview.
If you are near the Wichita, KS area, Dr. Alan Moskowitz can be found at the Kansas Joint and Spine Institute.
Or, if in New York City, Dr. Daveed Frazier can be found on the Upper West side.