My surgical consult
I set my alarm for 7am, but we didn't get out on the road until 10:30. We planned to leave at 9, but I woke up screaming in pain, so I didn't push myself. The map from the doctor's office kinda sucked, so we missed the Kilpatrick Turnpike and got lost. We ended up near the Capital building - nowhere near the hospital - but finally made it to there in time. I had a total meltdown by the time we arrived. After four hours in the car in excruciating pain, I lost my temper and cussed out my mom and Drew. I couldn't stop crying, I was just very frustrated and anxious about the whole thing. Once I got into the exam room and gave my medical records, x-rays, CT scan (on CD), and medical history forms to the nurse, I started to calm down. I met Dr. OKC. He was awesome! He was young, up-front, honest, professional, and answered all my questions (my mom's and my boyfriend's, too). Here's what I learned:
No, I was NOT finished growing when my first surgery was performed, which is what we've suspected for a long time. My surgeon (let's call him Dr. Delaware) always said he wouldn't do the surgery unless I was done growing. (I tried to tell him I didn't think I was, but none of the doctors ever listened to me back then. I was just a kid, right? What would I know about my own body?) Dr. OKC said I had reach skeletal maturity, so I guess I don't have to sue Dr. Delaware.
Not only does your spine curve to the side with scoliosis, it rotates, too. I got to see this when Dr. OKC looked at my CT scan on his MacBook. He has a program that let him view my CT in 3D. I had a geekgasm and thought it was the coolest thing ever. I brought that CD home, I'm going to do some screenshots later.
My top three priorities are to be pain-free or close to it, to be symmetrical, and to keep my current level of flexibility or as much as I can. I'm sick of people staring when I walk. I'm sick of looking like Quasimodo's lopsided cousin. I had a long list of questions I had prepared regarding this next surgery. I never got to ask most of them. Feel free to skip them if you want:
Will you cut into my hip again?
How long will I be in the hospital?
How long will I be in a cast?
How long will I be in a brace?
How much physical therapy will I have to go through again?
How long will I be out of work?
What am I going to look like post-op?
Will my rib hump decrease? I don't understand how.
Do I have enough skin to cover my torso if my spine is straightened?
Will you level my hips?
If so, won't that create a bigger discrepancy between the length of my legs?
How much will this cost?
How much will my insurance cover?
Are you an in-network physician?
How has the surgical technique improved and changed since my previous surgery?
How big will my new scar be?
I asked Dr. OKC him a few of my "pipe dream" questions, like "Can't you just break my ribs and reshape them into the way they should be and pin them back together?" He said yes, he actually could do that. He could also remove the rod, or break apart the fusion completely and make me roughly the way I was pre-op. None of those things would help me, though. At first, he told me my best option would be another fusion - from where the rod ends all the way to my pelvis. But as he looked over my x-rays and my CT scan, he realized that wouldn't be an option, either. My quality of life would really deteriorate. I asked if I can get artificial discs in my lower back instead of a total fusion. I've been reading up on them - Charite and Kineflex are the two types that are FDA approved. He said no, those are not made for people with scoliosis, because of the rotation of my spine. He said my discs are not as deteriorated as I thought. In the end, he decided not to operate on me at all. He said my case is very complex, and he is referring me to an "expert" in the field. (I felt like saying, "Well, pardon me if I don't seem thrilled, this is the third time I've been told that.") That expert is in St. Louis, an eight-hour drive from home. I had already cried before Dr. OKC came into the exam room, so I didn't let myself cry when he told me that. I don't know if I have ever felt so disappointed and, really, deflated in my whole life.
He told me to use my TENS unit. He gave me prescriptions for Lortab and Flexeril. He said I should try facet joint injections, so I'm going to research those a bit. He said they are injections into the joints around the spine to reduce joint pain. He said I could get a dorsal column stimulator, but it's something else that he doesn't think would help enough. Plus, once he described it, my gut reaction was "HELL to the NO!" It's basically an internal TENS unit that I can control from the outside. O.O
So then he sent me for some more x-rays so that they could put them on CD and I could take them with me when I meet Dr. STL. (I hope Dr. STL doesn't tell me they're out of date when I meet him. I found some info about him online, he MUST be good, I read that he has a four month waiting list. And that was posted in 2005.) I'm going to do some screenshots of those, too. While I was back in Radiology, Dr. OKC came out and talked to my mom and my boyfriend. He said that he's going to do a conference call with some doctors he knows in Chicago, and they'll try to make a plan so that I don't have to go to St. Louis. If I have to go to either city, I will have to fly. I'm not doing any more long car trips for a while.
By the time we left the hospital, it was almost 7pm, so we decided to eat dinner and spend the night. Before I forget, I should mention for those of you who haven't had the pleasure of seeing the state firsthand, Oklahoma sucks. There's more tolls than on the East coast, the highways are bumpy, the road signs are incomprehensible or nonexistent, and Oklahoma City itself is very confusing. The turnpike has a one way street on either side, so once we left the hospital, we had to cross the turnpike to get to the side with the restaurants. We stopped at the first one we saw: Red Lobster. Thank God. All three of us ordered alcoholic drinks, LOL! We ordered a lot of food, stuffed ourselves, packed up the leftovers, and checked into the first motel down the street. We had a nice continental breakfast this morning (Frosted Flakes!!) and drove back.
If I've forgotten anything, I'll update this later. I've been writing this for 7 1/2 hours. I seem to have no attention span when I'm hurting.
No, I was NOT finished growing when my first surgery was performed, which is what we've suspected for a long time. My surgeon (let's call him Dr. Delaware) always said he wouldn't do the surgery unless I was done growing. (I tried to tell him I didn't think I was, but none of the doctors ever listened to me back then. I was just a kid, right? What would I know about my own body?) Dr. OKC said I had reach skeletal maturity, so I guess I don't have to sue Dr. Delaware.
Not only does your spine curve to the side with scoliosis, it rotates, too. I got to see this when Dr. OKC looked at my CT scan on his MacBook. He has a program that let him view my CT in 3D. I had a geekgasm and thought it was the coolest thing ever. I brought that CD home, I'm going to do some screenshots later.
My top three priorities are to be pain-free or close to it, to be symmetrical, and to keep my current level of flexibility or as much as I can. I'm sick of people staring when I walk. I'm sick of looking like Quasimodo's lopsided cousin. I had a long list of questions I had prepared regarding this next surgery. I never got to ask most of them. Feel free to skip them if you want:
Will you cut into my hip again?
How long will I be in the hospital?
How long will I be in a cast?
How long will I be in a brace?
How much physical therapy will I have to go through again?
How long will I be out of work?
What am I going to look like post-op?
Will my rib hump decrease? I don't understand how.
Do I have enough skin to cover my torso if my spine is straightened?
Will you level my hips?
If so, won't that create a bigger discrepancy between the length of my legs?
How much will this cost?
How much will my insurance cover?
Are you an in-network physician?
How has the surgical technique improved and changed since my previous surgery?
How big will my new scar be?
I asked Dr. OKC him a few of my "pipe dream" questions, like "Can't you just break my ribs and reshape them into the way they should be and pin them back together?" He said yes, he actually could do that. He could also remove the rod, or break apart the fusion completely and make me roughly the way I was pre-op. None of those things would help me, though. At first, he told me my best option would be another fusion - from where the rod ends all the way to my pelvis. But as he looked over my x-rays and my CT scan, he realized that wouldn't be an option, either. My quality of life would really deteriorate. I asked if I can get artificial discs in my lower back instead of a total fusion. I've been reading up on them - Charite and Kineflex are the two types that are FDA approved. He said no, those are not made for people with scoliosis, because of the rotation of my spine. He said my discs are not as deteriorated as I thought. In the end, he decided not to operate on me at all. He said my case is very complex, and he is referring me to an "expert" in the field. (I felt like saying, "Well, pardon me if I don't seem thrilled, this is the third time I've been told that.") That expert is in St. Louis, an eight-hour drive from home. I had already cried before Dr. OKC came into the exam room, so I didn't let myself cry when he told me that. I don't know if I have ever felt so disappointed and, really, deflated in my whole life.
He told me to use my TENS unit. He gave me prescriptions for Lortab and Flexeril. He said I should try facet joint injections, so I'm going to research those a bit. He said they are injections into the joints around the spine to reduce joint pain. He said I could get a dorsal column stimulator, but it's something else that he doesn't think would help enough. Plus, once he described it, my gut reaction was "HELL to the NO!" It's basically an internal TENS unit that I can control from the outside. O.O
So then he sent me for some more x-rays so that they could put them on CD and I could take them with me when I meet Dr. STL. (I hope Dr. STL doesn't tell me they're out of date when I meet him. I found some info about him online, he MUST be good, I read that he has a four month waiting list. And that was posted in 2005.) I'm going to do some screenshots of those, too. While I was back in Radiology, Dr. OKC came out and talked to my mom and my boyfriend. He said that he's going to do a conference call with some doctors he knows in Chicago, and they'll try to make a plan so that I don't have to go to St. Louis. If I have to go to either city, I will have to fly. I'm not doing any more long car trips for a while.
By the time we left the hospital, it was almost 7pm, so we decided to eat dinner and spend the night. Before I forget, I should mention for those of you who haven't had the pleasure of seeing the state firsthand, Oklahoma sucks. There's more tolls than on the East coast, the highways are bumpy, the road signs are incomprehensible or nonexistent, and Oklahoma City itself is very confusing. The turnpike has a one way street on either side, so once we left the hospital, we had to cross the turnpike to get to the side with the restaurants. We stopped at the first one we saw: Red Lobster. Thank God. All three of us ordered alcoholic drinks, LOL! We ordered a lot of food, stuffed ourselves, packed up the leftovers, and checked into the first motel down the street. We had a nice continental breakfast this morning (Frosted Flakes!!) and drove back.
If I've forgotten anything, I'll update this later. I've been writing this for 7 1/2 hours. I seem to have no attention span when I'm hurting.
