I have seen a lot of information online about teenagers having rods put in their back, but there isn't much on adults and what we experience with this surgery. I am going out of my comfort zone on what I normally post. This is my story.
Twenty years. That's how long I have lived with chronic back pain. Progressive scoliosis with arthritis in my spine. That's the official diagnosis. I remember in school when I was about 11, they checked everyone for scoliosis and I was one of the lucky ones to bring home the letter from the nurses office. My problem was having a father that didn't take his kids to the doctor for anything less than an appendage falling off. And even then it was hit or miss.
So I lived with it. By the time I started experiencing real pain from it (around age 19) I had a child to take care of and I didn't have the time to take off that I needed to heal. Back then it was a year healing time in bed. I spoke to the first surgeon when I was 20. The hospital at Elmendorf Air Force Base, Alaska. She was a strange one. She kept going on about how she hoped I didn't think I'd get away with getting pain pills from her, then she'd go off on some other rant for a while. I left there crying and telling her she wasn't getting 10 feet from my spine.
So again, I lived with it. For the next 19 years it was hard not to let it control my life. But let's get real. All of the pills, and the TENZ units, and the painful shots in my spine, and the chiropractors, and the braces, and the pills, and the height shrinkage, (at 5'2" I couldn't afford to lose much!) and the jobs I lost because I couldn't physically do it, and the pills...and the doctors who looked down on me and said "well your spine has grown that way so you shouldn't be feeling any pain...that's just the way your back is." UUGGHH!!!
This is why I started refinishing furniture. It's something I can do as I can do it. I'm not able to sit, stand or walk for more than 30 minutes to an hour each at a time, and a regular job was getting harder and harder to do. I don't want to be "disabled." I want to be able to do something useful, so the furniture thing is something I can work on as I can tolerate.
And about those pills...
I was on Oxycontin and Percocet for about 5 years. Last year I decided that these pills were controlling my life more so than the pain. My life revolved around how many pills I had and being terrified I would run out before my next refill. I drank because of the depression they caused. To make things worse, because I had gastric bypass surgery in 1995, I only absorb about half of what I take in. So I needed more. I was a drug addicted hot mess. That's one hard realization to come to...admitting you're an addict. So I decided to take control and go off them. The side effects of going off medication that is opium based are horrible! I should have been under my doctor's care and supervision during this time, but I felt like I couldn't tell them anything. I couldn't trust them. I still feel that way. I felt weak talking to my husband about what was going on with me. (Which is ridiculous!)... I was alone.
Going off was 2 weeks of hell. I shook like I was freezing but I sweated profusely. Every bone in my body ached. Covers on...then throwing them off, the diarrhea, the turning into a complete bitch over nothing. I'm surprised I still have a husband, given how psychotic I became. But once it was over I felt like a new person. I was still in pain, but for the first time in a long time, I was feeling everything else as well. And that felt good.
I laugh at the pain scale. Every doctor has it. "On a scale from 1-10, how much pain are you in?" My 4 is somebody else's 8. My 9, and a normal person would be in the ER thinking they had broken their back. I was being managed. This year I decided I was tired of being managed. I wanted a cure. I spoke to my pain clinic doctor and she hooked me up with Dr. Rahm in Temple, Tx. He's supposed to be the best when it comes to spines, so I went for it.
This picture was taken a few years ago, but you can see how far down my left shoulder goes. I couldn't carry a purse on that side because it would just slide off. Not that that's traumatic, but just an annoyance.
And this is the x-ray, if you were looking at me from the back.
And then August 6, 2013 came. Two weeks before my 39th birthday was the day that would hopefully change my life. I got to the hospital at 6 A.M. and they took me immediately to the pre surgery unit.
LOL. They just told me they were going to hook up my IV's.
They put massaging sleeves on my legs to avoid blood clots, and Mark put some slipper socks on my cold feet.
They finally gave me valium because I was a little nervous.
After 7 hours, I was finally done. I woke up with my face being twice the normal size from it being in a hole in the table all that time. Um, I'm not posting pics of that. When I did wake up, the pain was so bad I just wanted to die. I've had some significant surgeries in my time, but the pain after was nothing like this. You know those horror movies where the bad guy hoists a person up on a hook through their back and rips the skin and muscle right off their body while they're still alive? Something like that. No joke. It's my understanding that the teenagers who have this surgery experience much less pain. I think it's because my spine has been in the same position 25 years longer than them and is harder to accept its new position being forced upon it.
This is the next day after I left the SICU.
I can't express enough how bad the pain is. I was on a dilaudid drip with pills every couple of hours. The dilaudid caused me to have double vision starting Wednesday, until they took me off it when I went home on Saturday. This is where I started to dislike Dr. Rahm. I won't go into all the details, but I'll say that if you are looking for any kind of empathy or good after care, do not choose him as your surgeon. I am now taking myself out of his care and going to another surgeon for all of my checkups.
Update: I decided to forgive the fact he just doesn't have a very good bed side manner and accept it, because he really is the best spine surgeon in Texas and the best hope I have at completing my back.
They had me up walking 2 days after surgery. It hurt and I couldn't see straight, but I did it!
I had this bruise from the IV for about 2 weeks.
This is my scar- 4 days post op. Dr. Rahm is really good at scars. As far as they go, this is perfect.
This is my hardware! This is a T3-T12 fusion. One good thing about waiting 20 years to have this done, is I waited out technology. They no longer use the Harrington Rod. Problems with breakage and the rod having to be removed after a few years were common. Today's rods are stronger and accommodate bone fusion better than their ancestor. This is looking straight down on my back while I'm on my stomach. This was done while I was still under...thank God.
You can see that he didn't go all the way down. This is because he would have had to attach the bottom rod to my pelvis, due to my missing vertebrae. That would have caused problems with my hip that will also have to be replaced soon. I swear! I'm 39 and falling apart! He's seen this bottom section straighten out and catch up to the top section in teenagers, but I'm the first adult he's trying this with. Since I'm not growing anymore, only time will tell.
This is an outline of how much needs to catch up, since it's a little hard to see in the previous pic.
And here I am 3 weeks post op. Notice the even shoulders? Huh, huh? Do ya?
I'm still under a lot of restrictions. No bending, lifting or twisting for 6 months. Do you know how incredibly hard that is? I can walk up to 20 minutes twice a day. My husband has to do quite a bit for me. I'm still in pain, but it's not near what it was a couple of weeks ago. And I can tell that it's mostly surgery pain. As in, I think my chronic pain days are behind me. Fingers crossed!
If this has worked the way I hope, this will truly be a life changing operation. Even knowing what I know now about the pain, I would do it again. I encourage anyone considering this surgery to do it, if you think it would benefit you. Bonus? I'm an inch taller and counting.
Here's the instant replay:
My sincere thanks to the nurses in the surgery ward at Scott and White Hospital in Temple. You really helped more than you know. And of course, my husband Mark. My protector and my rock. I love you!
As always - any questions, just holler! And if you are struggling with chronic pain or addiction to pills, and want someone to talk to, then just click on that little email icon at the top of the page and I'll be on the other end for you.