Monday, November 8, 2010

"Just to Get Started"

Well, here I am, fresh and new in the world of blogging!

As my blog description states, I am going to be keeping this blog in hopes that it will answer some questions for family and friends, as I prepare for scoliosis surgery.

I know that questions and concerns will come up, since the Lord has seen fit to bless me abundantly with people who truly care for me. I also know that many of these questions and concerns will overlap with each other. I have already experienced the frustration that can accompany explaining a stressful decision to multiple people over and over again.

This is not to say that I do not want to address any questions you may have in person, simply that I would like to limit those conversations to the most necessary. By providing some info here it will be easier to cover many things, since it is a written format which allows me to reference things quickly and easily, as well as link you to further info.

It's difficult to try and decide what topic to address first. I suppose it would make most sense to explain why I am going ahead with having the surgery now, when I have been saying through the years that I intend to put it off well into adulthood.

I will create a post in the future that covers my journey from diagnosis to today in greater detail. For the moment, let's recap the main points: I was diagnosed at 10, did the 'wait and see' method for a year or so, and after my curves progressed I spent the next 6 years in 2 different types of hard braces. I experienced a significant, though slow, increase in my curves during this time. I switched bracing methods around the start of my junior year of high school, (17 years old), and have since been considered stable.

'Stable' means that the degree measure of my curves has not increased significantly between x-rays. I have had x-rays taken approximately every 6 months for the past 10 years of my life. The past 2 to 3 sets of x-rays have shown almost no change in curvature.

So, the question: If I'm not getting worse, and I'm functioning (as many of you know, I have a very busy life) why subject myself to a surgery with potentially serious complications?

There are a few ways that surgeons determine who is a surgery candidate, and I will cover the 'nitty-gritty' details of that in a later post. Simply said, I was considered a viable surgery candidate, and had surgery recommended to me (and my parents) by the time I was 12 years old. Essentially, a person with a history of significant curve progression, whose curves have reached a total of 40 degrees, is told to have surgery. My combined curves (I have 2, which create an "S" bend in my spine) now exceed 120 degrees. Any spinal surgeon would tell me to have surgery.

Now, for what I think really matters to most people; my own reasons for going ahead with surgery. When they recommended surgery to me at 11, I wasn't truly involved in the decision to post-pone it, and seek alternative treatment. This is not a criticism of my parents' decision. In fact, I completely agree with the approach they took, and feel that I would likely have done the same if I were in their place. However, in the past year or so, I have felt that it is my time to decide what I believe is best for my own health, and life.

I started researching scoliosis surgery info this past spring. I have known for some years that surgery would always be in the future for me, since my curves are severe enough that gravity will eventually take over. My thought process was this: "At some point when I cannot maintain my core muscle strength, wear a brace, or otherwise maintain my curves at their current degree, surgery will be a last resort." I hoped this wouldn't be necessary until I reached my 60's.

When you randomly start researching scoliosis surgery on the internet, you find some disturbing and upsetting things. Particularly if you've been ill-informed and believe that you are supposed to be looking at "Herrington rod surgery" which is, in fact, out-dated. I'll just say that I got pretty freaked out and stopped looking for awhile.

This fall, my mom started seeing a new chiropractor, and told him about my case. He has a sister-in-law who had the surgery I am a candidate for when she was about my age. He told my mom that many surgeons and patients who have had the surgery highly recommend getting it done while you are still young and fit. My mom shared this tid-bit with me, which inspired me to start researching again.

This time around, the more I found, the more at peace I felt about surgery. There are 3 main reasons I am   choosing to go forward with finding a surgeon, and looking further into having surgery within this year.

The first reason: I am uncomfortable. When you have curves in your spine as severe as mine, your ribs rub together, causing what would be considered by many to be "painful" inflammation. Now, honestly, I do not know how much pain I experience. I have a high pain tolerance, I know that. Lately, I've been trying to focus in on how I'm feeling a few times a day, to measure my discomfort levels, and the frequency of these episodes. What I've determined is that they are not episodes, I am simply in some level of discomfort or pain all the time. Through the past 6 years or so, I have limited my activities, partly out of fear of injuries (example, no longer playing soccer) but mostly, from the knowledge that I would not be able to complete an activity, or keep up with friends, because I would be in too much pain. This mostly applies to things like going for hikes, or playing intramural sports. Essentially, my activity has been greatly limited by my scoliosis. 80% of patients who have the surgery report significantly decreased, or eliminated pain, and you can return to full contact activities around a year after surgery. So,  yes, I could play soccer! I could ski! I could just walk around and carry a backpack without pain.

The second reason: Having this procedure done while you are young is for the best, with regard to physical health. Though they do perform spinal fusions on older adults, the frequency of serious complications increases with the patients age. Basically, as a doctor once told my mother, "Babies bounce good!" Children and young adults recover more quickly from serious surgery, and get better overall results from surgery, than older adults do. I will be better off doing this while I am young, where my health is concerned.

The third reason: This is a 'convenient' time in life to have major surgery. 'Convenient' is a relative term, since I would prefer to never have to have this surgery. However, there is a lot to be said for the fact that the college years allow you the flexibility (through summer breaks or postponing a semester,) to fully recover from a surgery like this. The recovery process takes around 12 months, in total, the first three months of which are the most intense. During these 3 months my mobility and activity level will be quite limited. Luckily, summer is 3 months long! Other things I am taking into consideration are my relative freedom from responsibility during this time in my life. I am not yet tied down to a full-time job, career, or family. God has given me the desire to have a family, to be actively involved in my community, and possibly to pursue missions work in the future. It would be incredibly inconvenient and disruptive to my life to have this surgery in the future.

My greatest concern is that if I do not have this surgery before starting a family, I might have to have it while I have small children to care for. Though there aren't any official studies on this, I have found through many blogs, articles, and online discussion forums that a notable percentage of women experience a sudden and quick progression in their curves during or shortly after pregnancy. This has been attributed to hormones, stress, and just plain carrying extra weight (while not being able to wear a supportive brace.) Whatever the reason, this is a risk that I feel I should not take. My curves are severe enough that any significant increase in them would cause me to need to have surgery, asap. If I am blessed with a family, I do not want to put my husband in the situation of having to care for both a small child and a wife recovering from major surgery. The awesome thing is that women who have had spinal fusions can carry a pregnancy to full term, without any complications. (Praise Jesus!)

Essentially, having this surgery now is a way of preparing myself to be able to fully engage in and follow whatever plan God has for my life. I am excited to learn more about my options and to start meeting with surgeons. Though, of course, I am nervous and anxious as well. What I know for sure is that God has this all in His hands, and that He has provided me with a wonderful support system, which only goes to show that He will not give me more than I can handle!

Thanks to all of you who read through this completely. I do hope that you'll leave comments with questions that I can address here on the blog, and that you'll continue to follow along in the weeks and months to come :)

2 comments:

  1. Amelia ... You are a most unique young lady in every way. I am impressed with the way that you have taken your unruly bull, your back, by the horns and are running to deal with it. You are full of faith, courage and tenacity; and you and God will bring this problem into submission. I pray that He will surprise you with a recovery that is by far the easiest and fastest that the surgeon has ever seen ... if not a complete healing beforehand making surgery unnecessary. Either way His glory WILL be seen in you. Much love to you sweetie! Linda Lauritzen

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  2. Linda,
    Thank you so much for this and your other comment- I am absolutely writing that verse up on my mirror where I will see it at the start of every day!
    I am so blessed to have you as a friend and mentor- thank you for all of the prayers and support :)
    ~Amelia

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