Saturday, June 23, 2012

Better Than I Used To Be

"I ain't as good as I'm gonna get, but I'm better than I used to be." Kevin took us and our cousins to to the Brothers of the Sun Concert on June 2 and I cried a little when Tim sang that and balled like a baby when he played, "Live Like You Were Dying." It just hit closer to home than it ever has. Very glad it had gotten dark.  Inspirational.

Charlie & Mollica and Kevin & I

Kev & I at Brothers of the Sun Concert. First REAL outing after surgery. Cast and all (removed for photo), you know you love Tim and Kenny if you're casting it up to the third level only 4 months post-operative. It killed me and put me out of commission for about 4 days but I LOVED it!
I have reached 5 months post operative from my multilevel thoracolumbar fusion with instrumentation and osteotomies. A lot has happened in the last 3 weeks. My life has changed in ways I never could have fathomed. I have always been upfront about the fact that I never asked or more truthfully allowed my spine surgeon to explain in full detail what he was going to do during my procedure. I do not handle graphic images (or thoughts) of wounds or surgical images, especially when I am the patient. Grey's Anatomy is fake, and yes I wince during the bloody scenes. So obviously picturing what was going to happen to me under anesthesia with my eyes taped shut, completely naked while being hacked up in front of a room full of people slicing, dicing, and digging strange instruments into my back would send me running for the hills. I would have turned it over and over in my mind until I talked myself out of it or found another excuse to postpone...AGAIN. Instead I simply ripped off that band-aid and jumped in head first.

During physical therapy last week, at Moreno Spine & Scoliosis, I requested copies of all my medical records. After reading them I now understand why medical terminology exists and most doctors generally sound as if they are speaking a different language. If instead of saying, "multilevel thoracolumbar fusion with instrumentation and osteotomies" they said cutting your back from between your shoulder blades almost to your bottom and shredding open all your muscles, tearing the ligaments from your bone, chiseling away at the bone and then cutting and reshaping them to fit into a straighter position followed up by drilling holes into your bones and then placing screws and wires and finally giant metal rods to hold all that in place and covering it with some bone marrow they "harvested" is the word they actually use from your spine, a dead person, and a little artificially created in a lab, people would take off screaming.

I made the LARGE mistake of youtubing some videos of spinal surgery and googled "facetectomy" last night. This is not recommended, personally, for people about to undergo surgery. Actually I don't think anyone should watch it, it's literally the most graphic thing I've ever seen. It's simply unnecessary torture that makes you nervous for no reason. And if you're like me start hyperventilating and making noises I could never imitate. It literally looks like something from a sci-fi film, worse because you know it's real. Knowing that happened to me is SO strange.

I won't lie, I am still in pain all day every day. I can feel the metal in my back, it's indescribable. I do feel better than I did in the beginning, even from a couple months ago as well. Sitting up is just not working for me. I was fused from my T4 to my L4.That's a lot of your spine for people unfamiliar with Scoli language. He saved the last disc in my Lumbar spine, your lower back. Now all the instrumentation and extra weight is pushing on that bulging and slightly degenerative disc AND pressing on some nerve roots and causing occasional numbness and loss of feeling in my left leg along with almost constant sharp burning pain. This is an improvement from the first couple months though. I've been in pain so long now it's almost hard to gauge it.

Was it all worth it? It had to be. My curvature was progressive, degenerative, and causing me a lot of pain and not far down the road more serious health complications had been ignored for 13 years. I will heal. I will not be disabled forever. That simply isn't an option. I was not made to be unproductive. I also am entirely too strong willed and stubborn to allow this to beat me. I'm not going to say I don't break down, get weak and emotionally drained and cry for two hours when I can't sleep in EVER because I am always in pain and never comfortable and can't go to my cousin's engagement party, etc. This is NOT easy. This is by far the single most difficult thing I will ever go through. Unless I require brain surgery and let's get real no one can be that unlucky, not even me. Everything in my life after this is going to be a cake walk. I have completely transformed inside and out. My entire perspective on life has changed forever.

I can walk a little longer, I am free of that terrible cast 75% of the time, I force myself to sit in the living room a couple hours a day, but at 9 pm I am spent. Even reclining at a 45 degree angle in my comfortable king size bed with the Rays neck pillow Kevin got me is killing me. It's ice time.

I have to vent, but I also have to say to anyone with a severe progressive spinal curvature and pain considering surgery the younger the better. I am glad it's done. I am already 5 months out of the woods. Surgery techniques and recovery 10-15 years ago to now has completely changed. ALWAYS get a second and third opinion and research the heck out of your surgeon. Board certified, no malpractice or settlements and if you don't feel comfortable with them and their "bedside manner" keep looking. I did, and it made all the difference.

Parting thought for this evening, ‘Pain nourishes courage. You can’t be brave if you’ve only had wonderful things happen to you.” ~ Mary Tyler Moore

Always With Karma,

Amanda


Tuesday, June 5, 2012

Scoliosis Journey & Pics - Week 15

Almost 5 months post-op. Finally getting to the point I am counting in months lol! I am only posting these pictures for people who are really considering surgery, know someone else who is/has, and my family and friends who genuinely want to know what it looks like. They said everyone loses 10-15 pounds after surgery. I had luckily managed to avoid weight loss up until the beginning of May and thought it wouldn't happen to me. I fell in our living room on our wood floors and it set me back a lot. It could have been worse. I am very lucky I didn't need another surgery or adjustment.

The pain is still pretty intense. It never stops. There is literally not a moment in the day that I am not in pain. I am SO uncomfortable regardless of how I sit, lay, recline, etc. I am feeling a significant improvement and I am getting stronger, it's just a slow process. I know that this was the right decision. Even though there are some moments when I wish I could just make it go away and go back to the way it was, I know that's unrealistic. I couldn't have continued to live in constant pain knowing it was only getting worse and that I was postponing the inevitable. I am approaching a half a year post operative and a lot has changed from the day I came home until now. Yes, I have torn many muscles. I have had three rounds of painful trigger point injections into my torn muscles. Physical therapy is exhausting and feels like something babies do in Gymboree, but I can almost brush my teeth without using my hand to hold myself up over the sink.   

Being a couple inches taller makes me look even thinner. You can see the instrumentation when you look at my back, but that will go away as I gain more weight and my muscles grow back. The pictures below this are from week 15 after surgery.

All things considered, I am very lucky. Listen to your surgeon and physical therapists advice, don't over-do it and vacuum, clean your bathroom, drive your kids to and from school, etc and exhaust and strain yourself because it only slows your healing process. Ice packs are your best friend. My boyfriend has been the most amazing nurse and friend I could have ever dreamed of. Neither of us realized how much I would be reliant upon him, and he has been my saving grace. With a good surgeon, a positive attitude, and the support of family, friends, and preferably someone with fusion experience it will make the process much easier.

The scar looks very good. The bumps are the instrumentation and bone because I lost 10 pounds in the last four weeks. That is very normal after spinal surgery, especially since I was pretty thin before.

The way I was standing makes my right shoulder blade and the side of my torso stick out a little but it is much straighter than this picture makes it look.

I was compensating a little due to pain. My shoulders are very even now.

Stego Spine