Thursday, December 16, 2010

First appointment review!

Allrighty, my finals are over, woo-hoo! I now have more free time then I can shake a stick at! The perfect time to post an update on how Tuesday's appointment went :)

Interestingly enough, one of the moments from the morning that stuck in my head the most was on the drive up, when we came around a bend in the freeway and Seattle first came into sight. It kind of made my stomach do this weird flip-floppy thing.

I guess it's the same sort of excited and nervous butterflies that people talk about getting around a high school crush. Except for me, I most closely associate that feeling with going into something new with regard to my scoliosis treatments. I've encountered it in the past, on my way to appointments, but it had been a long time since I felt it.

Mostly, it was interesting for me to feel that, and to be able to actively evaluate why I was feeling it. Seems to me that it was mostly the thought of that city being my home for a week, when I finally do have surgery, and how bizarre that was, that was weirding me out. Seeing the whole city from a distance like that, taking it all in, made this whole experience that much more real to me.

Okay. So, the appointment went well. Dr. Hanscom is nice, and wore a really cool rainbow striped tie! I thought it was cool, my dad wasn't such a huge fan. Mostly, we answered questions for the nurse, first, and then for Hanscom. We had the chance to ask some questions, but most of them were premature at this stage.

Dr. Hanscom places a large emphasis on pain management and overall healthy living, outside of surgery, and that definitely showed up in his recommendations for me. He had seen some of my x-rays in advance, and was able to say that yes, he would suggest surgery for me. However, the surgery he was talking about was very minor in comparison to what I was expecting. His goal would not be to minimize my curves to the smallest possible degree, but rather to seek the amount of curve correction that would allow me to be stable, and to live pain free.

Now, overall, that sounds great to me! The only reason I can think of to go with an extremely aggressive approach to surgery would be for cosmetic purposes. Essentially, if I wanted to undergo extra pain, recovery time, and risk, the curves could possibly be reduced to much less than Dr. Hanscom was suggesting, and my rib hump and other visible signs of my scoliosis could be greatly reduced.  BUT I am not doing this surgery to look better, and the added recovery doesn't sound like it would be worth it, even if that were my goal.

We are going back to Swedish for an appointment on January 6th. I will have x-rays done that day, followed by a meeting with Dr. Hanscom to go over the x-rays, and discuss more specific details of his recommendations for my treatment. I have decided to wait until after that appointment to make any decisions on whether or not to seek a second opinion from another surgeon.

There were two anxiety provoking aspects of this appointment, for me. The first was trying to go over my history of treatment (which has spanned roughly ten years, 3 major treatment programs, and multiple doctors) in a very short span of time. For whatever reason, revisiting all of those experiences so quickly got me slightly emotional. The second thing that stressed me a bit was the rest of Dr. Hanscom's treatment protocol.

As a doctor who studies and treats chronic pain, Hanscom is always looking to see what can be done for a patient outside of surgery. For this reason, he wants me to get into a schedule of physical therapy, specific exercise, supplements, etc. starting as soon as possible. This will get my body into optimal shape for surgery, and give me a good head start on recovery from the spinal fusion. What tweaked me out was hearing him say things like, "3 to 5 hours of weight training a week." Let me be clear here, people. I STRONGLY dislike the gym. I just do not have good associations with it, and I know that will have to change.

Essentially, I will have to go from being a person who has pretty well avoided doing anything specific by way of exercise over the past two years, (aside from occasional yoga classes, swimming sessions, and wearing my brace,) to being a gym rat, in just a few weeks time. I do not relish this change in lifestyle, but I know it will be for the best. I also know that I have a number of friends and acquaintances here at school who frequent the gym, who I can and will be asking to be my work-out partners and to help hold me accountable in all this.

I was feeling especially overwhelmed heading into Tuesday evening. The rest of Tuesday, after the appointment, consisted of heading back to school, taking a religion final, doing hw, a nice movie break with my housemate Hailey, then going to my grandparent's to celebrate my brother's birthday with family. A fun day, but a very full day, and I really didn't get much of a chance to process the information and emotions from the morning appointment.

Luckily, Tuesday nights are my campus ministry group's worship night, and that evening was our last gathering before Christmas break. It was awesome to get to gather with good friends, worship the Lord, and do some praying, as well as receive some much needed prayer and support.
While there, I was reading Phillipians, and verses 3:12-14 really stood out to me. Specifically, verse 12, which reads:

"2 Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me."

What caught my eye, but more like my heart, was the phrase, "that for which Christ Jesus took hold of me." This verse is a beautiful reminder for me of what a lot of friends and family have been repeating to me, lately; that I need not worry, because God has big plans for my future, and He will be with me every step of this journey. To see this verse reminded me that YES, the Lord has made me and called me for a purpose. He will pull me through this, because He isn't through with me yet.

In addition, the portion about "pressing on to take hold of" that plan of God, is an inspiration to me as I get ready to make this lifestyle shift. If ever I am tempted to start falling back into my old way of thinking, if I ever I go back to putting caring for myself on the bottom of my to-do list- because it's only something that affects me- I will go back and re-read this verse.

I will read it because it reminds me that each task put before me, no matter how insignificant it may seem, is a way in which the Lord is forming me into who He would have me be, and preparing me for the plan He has for my life. It reminds me that I am called by God to take care of this body that He has given me, that it is a temple for Him. More important than anything, it reminds me that it is not a selfish thing, or a waste of time to care for myself.

The best I can do is to remember that every hour I spend in the gym, or at P.T., is a way in which I can glorify my Creator, by respecting that He has a calling for me, and preparing myself today for the time in which that calling is made clear to me.

With these truths in mind, I feel peaceful moving forward. Aside from just waiting for the January appointment, Dr. Hanscom has assigned me homework. He is sending me a book about chronic pain management to read. He wrote this book, so it will be great to read it, and really understand where he is coming from when I go back in for my next appointment.

I guess that's all for now! Alas, I always end up so wordy. But you know, if it wasn't wordy, it just wouldn't be me :)

Friday, December 10, 2010

First appointment soon...

Just wanted to put the word out that I will be having my first appointment with a surgeon this coming Tuesday, the 14th.

After much research, I determined that the Swedish Orthopedic Institute in Seattle would be the best place to start looking for surgeons. They have 3 spinal specialists that we looked into. After reading through their websites, watching some interview videos of them, and getting a recommendation from a family friend for one specific doctor, I determined that Dr. David Hanscom would be the first surgeon I would like to meet with.

A friend of my grandparent's recently had a procedure done by Dr. Hanscom, and spoke quite highly of his friendly manner, professionalism, and commitment to take the time to really get to know his patients, while providing very clear information. He sounds like a good communicator, which is important to me! Obviously, my foremost concern is finding a surgeon who knows what he's doing in the operating room... but if I'm not comfortable interacting with someone outside of the O.R. then I don't want that person as my doctor.

There are links to Dr. Hanscom's info below. The first is a link to Swedish Medical Center's biography for him, and the second is to a website about his pain management program. Pain management is obviously an area that he is very passionate about and one in which he has invested a great deal of work. It's interesting to see his compassion for his patients show through his writing on that site.

http://www.swedish.org/Physicians/David-Hanscom

AND

http://www.doccproject.com

So far as Tuesday's appointment goes, I don't really know what to expect. I had to fill out a ridiculous amount of paperwork in preparation for it. Most likely, we will be going over my past history, and having some x-rays taken which he will then be able to evaluate before giving us an official opinion.

Essentially, I don't expect to have him tell me exactly what approach he would take in surgery, how many vertebrae would be fused etc. at Tuesday's appointment. I think there will be a follow-up appointment scheduled for all of that.

My mom and I will be compiling my past scoliosis treatment records this weekend, and I'm really curious to see it all come together. Also, we will be hand carrying a copy of my latest x-rays to the appointment.

My orthotist emailed a copy of these to me, as you can see below. My curves were approximately 68 degrees thoracic (upper back) and 64 degrees lumbar (lower back) when these were taken. What I find most interesting is how you can clearly see my ribs smashed together on my front left side (right side of the image.) Sometimes, if I'm really lucky, I can feel them rub against each other!

This shot was taken in brace - you can kind of see the bands and straps.


This shot was taken out of brace.


While I'm at it, I'll share one of my favorite self-depricating jokes from middle school, made complete with visual aids right above:
"I always like to say that my weird back is just God's way of making up for the other curves that He didn't give me."
HAHAHAAHAhhaaaaa. That's a knee-slapper! It would have been genuinely funny, too, if it weren't so true :P But the rest of me caught up a bit, so all's well that ends well :)

Aside from gathering my records, my mom and I will be working on a list of questions to bring with us, just so we can keep track of things and be sure that we've covered all our bases.

Right now, I'm feeling pretty good about the appointment. Honestly, I haven't had time to think about it, too much. Definitely not enough time to be anxious. At least, not until I go to bed at night.

Being in dead week, heading into finals week, keeps me busy enough during the daytime that I just can't dwell on much outside of school. However, I'm sure this weekend will provide enough downtime to find me stressing out a bit. Having this appointment fall in finals week wouldn't have been my first choice, I can say that much.

At the moment, I'm really looking forward to the appointment. Yes, all of this is nerve wracking, but it feels really great to be getting the process started. Knowing that I will soon have someone who is an expert sitting in front of me, ready to answer some of the questions that I have been carrying around for anywhere from a few weeks, to many years, is exciting!

All of your prayers are so appreciated, and if I can please ask for you to pray specifically for peace of mind for my parents, and for me to be able to focus on finals, this week - that would be extra amazing!

I'll post again before the week is out :)

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 :)