Needless to say this past week has been more full of drama than my past three years in high school! In my last post I mentioned how all went smoothly at my doctor's appointment at Mayo Clinic in Rochester. Unfortunately, it didn't go as well I thought it had. My parents (mainly my father) were very skeptical and basically scared shitless.
The main thing my surgeon discussed was the possibility of doing the surgery anterior (making the incision on the side) approach versus posterior approach (making the incision on the back). When they do anterior scoliosis surgery, it involves breaking one to two ribs, deflating a lung, and putting in a chest tube. With both surgeries they also put in a rod(s) and screws to hold the rod(s) in place. Only one rod can be put in when they do anterior, whereas with posterior two rods are used. Posterior surgery they strip the muscles off the spine, which isn't done during anterior, leaving the back muscles much weaker afterward in posterior surgeries. My surgeon explained how not many having scoliosis surgery can have anterior approach because it requires the major curve to be primarily in the lumbar region of the spine. That means that it isn't done very often. My surgeon guesstimated that she does 95% posterior and only 5% anterior, which is also a very scary thought. Just by looking at what I've said, anterior approach seems like a very drastic, and more complicated surgery than posterior. In ways, yes, it is. There are positives to it though. Though she did mention that although the first week after anterior surgery is much worse than posterior, after that recovery becomes much quicker with anterior surgeries than posterior.
Although I am a candidate for anterior scoliosis surgery, whether I can actually have that approach of surgery all depends on the results of my bend tests. A bend test is when they make you bend as far to each side as possible and they take an x-ray to see how flexible your spine is. If your spine isn't very flexible, you aren't a good candidate for anterior scoliosis surgery. Just knowing my body, I know that my lower back isn't very flexible at all! I've done yoga, and always realized that my lower back always felt stiff. Even tying my shoes can be difficult at time and puts a big strain on my lower back. As a family, we decided that posterior scoliosis surgery would be the best option for me.
The day after my appointment at Mayo, I had to work in the morning. On the way to work my mom told me her and my dad had discussed my situation the night before and decided (without consulting me) that I would be going to see a different doctor in Iowa City. I was crushed. I love my doctor in Rochester and fully trust her! Besides that, I was more than disappointed that my parents didn't include me in their discussion or decision to see another doctor. I stayed angry and bitter for a day or two before getting a good family friend to come over and talk with my mother and I about my parent's poor handling of the situation.
My mom admitted that she was scared and just really doesn't want to see me have such major surgery at a young age, but she came to the conclusion that this is reality and it has to be done. My dad was the main one making the decisions and he had only met this doctor once, besides that he already pre-judged this doctor and said he didn't like her well before even meeting her. My main concern was that, summer is the best time for me to have major surgery and they agreed on that. That being said, next summer I am going to New Orleans and it is the summer before I head off for college. It is my personal preference that I have surgery this summer, while I'm still home and in high school while recovering (since the recovery will last months). Waiting for an appointment in Iowa City would take months, and I know I didn't want to put myself through the stress of waiting to be told the same news.
In the end, my parents let me make the decision whether to go see another doctor in Iowa City or have surgery in Rochester. I chose to have surgery this summer in Rochester by my surgeon, Dr. Amy MacIntosh. This started a whole new adventure: calling Mayo Clinic to ask further questions before setting up my surgery date.
This brought on new stress and anxiety that I've never experienced in my life. I thought finals at the high school were stressful, but man were those a cakewalk compared to this!! We would call, and Jodi (the woman who runs the orthopedic surgeon appointment phone line) would either be unavailable or the line wouldn't be open. We waited two days by the phone for her to call back. Literally, every time the phone would ring we would jump up and run to the phone to see if the caller ID would say 'Mayo Clinic'. The first time she called back, we weren't home. My mother stayed home those two days but had to leave for a short period of time to pick me up from work and drop off my brother at baseball. By the time we got home to call back, the lines were closed leaving me in tears of frustration and my mother in utter disappointment.
Eventually (Friday the 3rd) we got a call back from an assistant of Dr. MacIntosh's to answer our questions and we got a call back from Jodi to set up the surgery. I wanted to have surgery in June, and the only date open was the 30th. This date didn't work because our insurance takes at least 6 weeks to process the information and get all the codes and whatever so that it's covered to some extent. Our family cannot afford to not have the surgery covered (it is a very expensive surgery and I will not mention the outrageous numbers, google can tell you how ridiculous it is).
I also couldn't get a date the beginning of July because my surgeon is on vacation then. So the soonest date we could get was the 19th of July and that is my surgery date! Not as soon as I had hoped but better than nothing. I can't even describe the wonderful feeling of relief now that it's scheduled and that anxiety is gone! Now I can focus on having a kick ass summer before I have surgery! I have to go in the day before for an MRI (to figure out if my back pain is due to something other than scoliosis, especially since scoliosis doesn't usually cause much pain and I've been dealing with a lot of that!), and to have more x-rays, meetings with the anesthesiologist, and photographs of my back, etc. I am more than ready for this and anxious to get this ball rolling!
Thanks to all of you who have been here for me during this especially stressful time! I have no idea what I would have done without you! Blessings!
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