I: AN OVERVIEW
Leg+Frame is the account of how I finally stopped avoiding the Taylor Spatial Frame and got my leg straightened while supervising track, reading really long Stephen King books and occupying the couch. More importantly, Leg+Frame is supposed to be able to serve as a relatively thorough documentation of the process of having a Taylor Spatial Frame, from placement to removal. The goal, fist and foremost, is to be able to provide some idea of what somebody entering a frame can expect.
II: USER'S GUIDE
The blog is designed to be read from the earliest entry to the final entry. There are 65 entries in total. Because the blog was being written for an active audience, there is some continuity from post to post. You could skip about if you want. At some later date, I'll tag all the posts to make all that easier.
Scattered throughout, there are eight backstory posts which are designed to provide some context for the main narrative of the blog as well as to give some idea of just where I'm coming from. Those are designed to be read one after the other. Unfortunately, that's kind of hard because I wasn't that good about writing backstory entries when I said I would (or planned to). I'll tag all of those to make that a bit easier. Still, in the grand scheme of things, just starting with the earliest entry is probably the way to go.
III: IF YOU DON'T HAVE MUCH TIME
I realize that reading 65 entries to figure out some basic facts about life with a Taylor Spatial Frame is rather a lot to ask. That's is the purpose behind this entry, to provide a sort of SparkNotes account of what life is like with a frame.
General warning: Not all frames are created equal. Depending on your doctor's preferences, your experience could vary wildly from mine. Additional factors which change things up include the amount of correction which needs to be made, whether or not the frame was a pre-planned event, whether or not any lengthening of bone needs to take place, etc.
Frame placement: The procedure to place my frame took about three hours, though that three hour figure includes time to remove some unrelated bone growths. I don't know what the average time to place a frame is, but two to three hours sounds fairly reasonable. Also, expect a hospital stay of two to four days. Really, though, you should ask your doctor. I think this can vary from case to case.
Pain after placement: Keep up with your pain medicine. I had a night where I got behind on pain medicine (this was in the hospital) and sleep was pretty rough. I can't remember what the pain felt like, unfortunately. Also, for anybody wondering, I was on a combination of epidural/morphine for the first few days. That was incredibly effective.
Strut adjustments: Follow instructions. Except for the final set, none of my adjustments were painful. The final set of adjustments was a two-in-one (two days' worth of adjusting, one adjustment) and there was some discomfort for the rest of the day, though nothing in the morning.
Walking: My progression towards walking was slow but steady. I started in the wheelchair, moved to the walker, moved to walking. It was very much as I felt comfortable (yep, you'll have to gauge that for yourself). Once I got walking normally, which took perhaps six to eight weeks, I was at more or less full mobility.
Going for walks: Once you're able to, going for walks can be really fun (that was something I didn't do enough of). Still, be careful—there was one time where I went on a walk and the next morning I found out that the frame had started bleeding while I was walking.
Furniture: Frames resting on cushions tend to make dents in cushions. The frame as a whole is a remarkably effective weapon against wood and other surfaces. If you have valuable furniture, you should probably be careful.
Doorways: Again, be careful. I bashed the frame against the doorway a number of times. Hitting the frame against objects such as doorways (or tables or people's legs or etc.) didn't hurt me at all—I could sense it, but no pain. For the object being hit, the experience was less pleasant.
Stairs: Doable. In the beginning, while the frame is non-weight-bearing, hopping up the stairs while holding onto the railing is effective. Ascending the stairs in a sitting position with the frame extended in front of you also works quite well. In both cases, have somebody supervise your stair-going. After you're weight-bearing, life gets easier. Stairs did not provide a huge obstacle to me, but it's probably best to follow the doctor's advice on this one. My main concern with stairs, in the end, was more geometric than anything else—on steep staircases, frames don't necessarily fit so hot.
Aisles, tables, seats: Your frame will not fit beneath every table, will not go through every aisle, will not allow you to sit in some seats (economy class on the airplane could be tricky). Listen to necessity on this one, but just be aware that frames do not fit in all places.
Running: You probably shouldn't run if your doctor doesn't tell you to.
Jumping/leaping: I'd say beware. You don't want your leg to break.
Sleeping: I needed to reposition myself a lot before I was able to fall asleep.
Pain: As far as soreness goes I really had no pain, which is apparently not typical of the experience. I suppose the only advice I can give here is use pain medicine if needed and remember that the frame isn't forever. One of the pin sites developed a callus, which rubbed weirdly when I walked and caused discomfort. If you think one of your pin sites needs oiling, vasoline works pretty well.
Pin care: Pin care was what scared me the most. Assuming no peroxide is used, you should be just fine. Saline and q-tips were the initial combination used to clean my pins; it stung a bit, but nothing too extreme (to put it into perspective, I'd say pin care was preferable to being stung by a bee). At times, the pins would need some more agressive help, which did hurt and caused them to be sore. This only happened two or three times. I think it just comes with having a frame. Most of the time, I was in charge of my own pin care. I simply made sure, while showering, to get the pin sites sudsy. This was very effective. I got lots of praise for having clean pin sites. This made me feel good.
Pin site infections: Didn't have one. From what Dr. Sundberg said, oral antibiotics can serve to help take care of those. I did have an antibacterial paste which I applied to the pin site with the callus when that got a bit red. The antibacterial paste did the trick.
X-rays: Side view x-rays should be really easy to get. However, if they want a frontal view of the frame, sandbags might be required since frames are rounded and tend to roll.
Looking at the frame: I took my time in being able to look at the thing, which was probably a mistake. It's a part of your body (if you don't want to sound so attached to the thing, you can refer to it as an extension of your body) for months, at least. Also, pin care is
much easier if you're willing to look at the thing.
Crowds: Be careful! People don't necessarily look down at where frames tend to lurk. Frames don't necessarily care one way or the other if a stranger is in their way.
Energy: Wearing a frame takes a lot of energy. Seriously. Expect to have less endurance and be more tired than in normal life.
Motivation: This can be tricky. The trick for me was a) having fantastic people in my life and b) trying to stick to as normal a routine as I could, including activities such as helping out with track and not quitting school.
Clothing: Since I had a frame on my lower leg, I'm going to write this bit about frames on the lower leg. Upper leg is going to be trickier and I'm not really sure if they do arm frames. First, underwear. Either relatively large boxers, knitted stitch so they're stretchy (my set was Fruit of the Loom, purchased at Target, so they're not hard to find) or underwear with velcro sides (search the Internet) will do. I'd go with the large knitted stitch boxers, as they're much cheaper and much more comfortable. Second, pants. From what I've heard, basketball snap-on warm-up pants would work well. I had a pair of cargo pants that was fairly nice for the occasions where I wanted to feel a bit more normal. Sweatpants, however, are key. Use women's sizes, as those accomodate the frame better without dragging on the ground so much. Make sure the fabric stretches a bit. Be prepared to only use the sweatpants for a few months, as the frame will absolutely chew through the pants. Many of the pairs I was wearing were quite literally shredded. For more formal occasions, things get harder. My mother customized a pair of khakis, but customizing pants requires a lot of time, energy and a sewing machine. It's doable (for lower leg frames: below the knee, add a panel of fabric in to increase the diameter; above the knee: add a zipper so the pant leg will go over the frame in the first place), but really does take time.
Pin caps: Pin caps fall off. When they do, just tape over the end of the pins. The pins will still eat anything placed on top of them (e.g., sweatpants), but the devouring will be a little bit less enthused.
Dogs: Dogs apparently enjoy sticking their snouts between the struts of a Taylor Spatial Frame and sniffing. This can be a bit awkward. Watch out.
Cold: While one would think that metal pins going into one's bones would make avoiding the cold a top priority (and I deluded myself into thinking this for a little), I found that this wasn't really the case. In the cold, the frame does tighten up a little bit, but otherwise does not hurt. The tightening is not a painful sensation and, to be honest, I barely noticed it. It is, however, a bit bizarre.
Frame removal: The bad news is you need to go into the operating room. The good news is the procedure is very quick. I experienced some soreness for a few days afterwards. I have to wear a splint for about three weeks. The splint really does limit motion, but three weeks isn't too bad. Also, when you get the frame off you get to reclaim your leg as your own, as opposed to being a possession shared by you and the frame.
Pin site scarring: I believe the scars are for life. I was at dinner with my father and some of his friends, and one of his friends had worn a frame a while ago. There was some dimpling at the old pin sites but nothing really glaring. My pin sites are already fading pretty quickly into obscurity, which is really quite fantastic.
Again, this list is only based on my personal experience, so take everything I say with a grain of salt. Additionally, I ought to note that while this list covers many of the aspects of wearing the frame, it does not cover everything. What it does cover is the objective stuff that you can put in a list and dedicate a single blog post to. Most of wearing a frame, I discovered, is mental. It is getting used to having multiple metal rods going into your bone, restricting activity and constraining you to a sitting or reclining position for long stretches of time. That's where the rest of Leg+Frame comes in.
Edit, October 8, 2013—Following the completion of Leg+Frame, I have started work on a sequel blog which covers life after the frame's removal. It is, appropriately enough, called Leg After Frame.