Five Weeks

Here's a quick update on my hip status at five weeks post right PAO:

~The scar itself looks amazing; it's just a pink line. There are itchy red dots around it though - probably some kind of rash, definitely not an infection. I'm putting on neosporin/cortisone and will call the doctor if it doesn't go away soon.
~I have very little pain and have not even taken Tylenol in weeks. I still don't have anything that feels like bone or internal joint pain. It just feels like soft tissues adapting, and I have tightness in the muscles and near the scar, especially first thing in the morning or if I move suddenly or if I'm on my feet (well, foot) for too long. I hear an occasional click when I externally rotate. No other hip noises though.
~I wore fitted jeans and low-heeled boots to go out with friends on Saturday night. My scar did not hurt from the waistband and I did not have an issue walking in "real" shoes. I am not going to wear high heels any time soon though.
~I made zucchini bread this evening all by myself, thanks to the bar stool in the kitchen and my handy backpack for carrying stuff.
~I went in to the office Monday for 4 hours. My butt hurt from sitting in a real chair for that length of time, and when I got home I was tired and took a nap. I am going back in tomorrow and Thursday and will try to work longer hours as tolerated.
~I am sleeping a bit better but still not back to normal. I can sleep on my back and on my left side. I rolled over onto my right side just to see what would happen and it didn't hurt. I am not really supposed to do this so I have not made a habit of it.

Range of Motion Illustrated:
Range of motion is much better than I thought it would be at five weeks, although I have no real basis of comparison. I can bring my right knee toward my chest (I can get it closer than shown in this photo, but not while taking a picture of myself!):



My external rotation has improved since my four week report; however, it's still not very good, as expected:



While lying on my stomach, I can grab my right foot with my hand and touch my butt with it. I can cross my right leg over my left. I haven't figured out a good way to stretch my hamstrings, which have been historically tight; I have a feeling they will be very tight when I'm able to really try.

I am very pleased with my progress, excited to get in the pool in a week, and anxious to start bearing weight and doing real exercises. I am curious how much my pain level will increase with additional activity and weight bearing since it feels like I'm doing a lot of nothing right now.

Three Weeks

Has it been three weeks? Has it ONLY been three weeks?

Time seems to be moving slowly; I'm focused on my 8-week "bye bye crutches" appointment and I’m not even halfway there.

As I write this, it is 105 degrees in Portland; we’ve had record high temperatures the past few days. I still have trouble regulating my body temperature, and coupled with the heat this has been difficult. We don’t have air conditioning because our house is up on a hill and surrounded by trees; it never gets hot enough for us to need air conditioning (until now). We do have a basement which is cool, but I'm at the point in my recovery where I want to get out of the house and be more active. I can’t really do much outside without dissolving into a sweaty tired mess.

Today my parents took me out to lunch at a nice air conditioned restaurant. Then we went to the grocery store (also cool) and pharmacy (not bad). I did a lot of walking in the stores and felt pretty strong on the crutches. I didn’t realize how tired I was until I got home and took a two-hour nap!

So here is my three week update:

~Scar looks good and I’ve started massaging Vitamin E oil into it. I’ve heard that Bio Oil works well but also heard that any oil is fine, and since the scar already looks so good I see no reason to buy the Bio Oil because I have some Vitamin E.
~I try to sleep in my regular bed but still bail out in the middle of the night to the hospital bed. The mattress on the hospital bed is horrible, but I can change the settings and get more comfortable. Plus I hate waking Perry up with all my tossing and turning. I did spend one night early on sleeping in the recliner but did not repeat it because the hospital bed is better. I can usually sleep on my non-op side with a pillow between my legs but sometimes that just hurts. It’s hard to move the pillow and my leg around to find the sweet spot but when I do, it's great.
~My pain level is usually a 1 and I’m not taking any pain killers. The pain I do get feels muscular and not like it’s inside the joint or in my bones. It’s hard to tell for sure, but I don’t think I feel anything where the bones were cut. I feel sharp pain if I move my leg too abruptly. I am trying not to actively lift the leg as I was told not to, but occasionally I do by accident. I’m able to do it, but I feel sore in my hip flexors and my inner thigh when this happens. I’m trying to be more aware so as not to do it accidentally.
~I’m trying to do things around the house like laundry, cleaning, etc. I carry things around the house in a tote bag around my neck, in my teeth, in a backpack, tucked into my waistband … whatever is handy. It takes a while to bring all the clean laundry in to the bedroom and put it away – several trips with the tote bag – but I feel productive. My house is a mess – we have a long-haired cat shedding everywhere and the vacuum cleaner is just not going to happen with crutches – but I have learned to live with it. Laundry, of course, is not optional.
~Thanks to the CPM machine, my range of motion seems excellent. I can bend over to pick things up from the floor, reach forward and touch my toes, tie my shoes, paint my toenails, bring my leg in to my chest (not all the way by any means, but darn close), sit on the floor, and pull my operated leg up over my head with my hands a la Biellmann. OK, OK, I can’t do the last thing, I was just seeing if anyone was still reading.
~I have gently tried external rotation (e.g., sitting cross legged). My external rotation (turnout) has always been limited and it’s exttremely limited now because of post-surgical stiffness. This surgery did not correct my anteversion (my femurs are rotated inward) since that would be an additional surgery (femoral osteotomy) and my surgeon did not want to do it. (I didn't really either, although the thought of better turnout almost made it worth it.) I don’t know how much my external rotation will improve once I am able to stretch and work on it. I hope to have external rotation that is no worse (and if the stars align, better) than before. Otherwise returning to ice dancing, with its requirement for turnout in order to do even the easiest turns, may be challenging or impossible. This was my biggest outcome fear going in, and it’s too early yet to know how this will turn out (pun intended) in the long run, because I’m not allowed to do any real stretching or rotating yet.
~I’ve lost 12 pounds. I’ve been eating very healthily and I’m definitely not starving myself or dieting. Everyone says my formerly muscular legs are looking wimpy. So we can safely assume that’s 12 pounds of muscle gone to hell.
~Sneezing and coughing aren’t as excruciating as they were earlier in my recovery, but I still feel them in the joint/incision.
~My hands still hurt when crutching but I’m getting used to it and it rarely bothers me.
~I can still see the bruise from my first Fragmin injection, given to me in the hospital by Nurse Ratched. I can still see the bump where the IV needle was inserted. I can just barely still see the bruise from my autologous blood donation! Needles and I just don't get along.
~I am going to have a glass of wine before bedtime. I haven’t had an adult beverage since before my surgery. I have a feeling I will sleep quite well tonight.

Mystery Muscles

Last night I did some of the PT exercises I’d read about on another hip chick’s blog. I suppose I should go to physical therapy myself; my insurance allegedly covers it at 80% after I satisfy my $3,000 deductible. But I thought I’d try the hip strengthening exercises and just see what gives.

I am shocked, SHOCKED to find out just how weak some of my muscles are, despite skating. I knew which muscles were overdeveloped, but wasn’t aware until now how many were underdeveloped and underutilized, probably because of compensating for my pain.

Take my hip flexors, for example. Please, take them and give me new ones! I should have known something was up last year at the ice dance seminar with Paul and Sharon, where we were asked to stand on one leg and extend the other in front of us at hip level with skates on, and hold it … and hold it … and hold it. I could not do this! It hurt my hip so much that I could only hold it for about 3 seconds vs. the 45 seconds or so they wanted us to hold it. Isolating those muscles I was subconsciously compensating for was impossible.

At the time I was embarrassed and just thought, OMG, I am so out of shape. But I wasn’t really out of shape. I was skating 6 days a week, 2 hours per day. My skating was strong and my stamina was good, but I, an ICE DANCER, could not extend my free leg in front of me while standing at the boards holding on!! People who appeared far more out of shape then I was could do the exercise, adding to my misery. At the time, I had no idea why this was the case. I was really embarrassed though and figured I was just a wimp.

Last night when I tried to do the leg lifts with 2 pound weights, working those same hip flexors, I could barely do 5 of them. FIVE! The recommendation was for 15. I will have to work up to that, starting perhaps with 1 pound. My skates must weigh at least 5 pounds. Don’t even get me started on the clam shell exercises. I could barely do them either. I believe those work the hip abductors, yet another set of lazy muscles.

So, aren’t these the same muscles I should have been using to skate all these years? Of course they are. What the heck have I been using all this time? I know I can extend my leg forward (in hip speak, this is actually flexion).



See picture, this is my bad hip flexed in the Starlight Waltz last year. (Note that my toe is turned in, where it naturally goes, which is absolutely hideous and which I usually conceal better than this, but still I am able to flex.) What muscles was I using to do all this, my mystery muscles? Or perhaps it’s all being handled by my big huge glutes. That would not shock me. OMG, I am all messed up.

PAO

I finally got in to see the specialist today, after a 3 month wait. He specializes in people with my deformity, acetabular dysplasia, and he does a lot of pelvic reconstruction from trauma. He is very well regarded.

He told me that I was a good candidate for periacetabular osteotomy (PAO), and that a hip replacement or resurfacing would not work well because my hip sockets are so shallow. An artificial hip would probably fail fairly soon since there would be poor structure to hold it in place.

They took more x-rays and also did a CT scan to determine whether my legs were the same length and how much my femurs were misshapen. At the end of the day (and, with 4 hours of drive time, we are talking ALL DAY), it turns out that I have multiple problems. Very severe dysplasia, meaning very shallow hip sockets. Not a mild case. This had not been evident from the first films. I have stage 1 arthritis in both hips which, once pain is present, usually quickly degrades to stages 2, 3, and 4. Also, my femurs turn inward ("anteversion"), which I knew, but mine do so in the extreme, meaning my femurs are actually twisted. So that entails another surgery, where they break the femur and insert a plate. The PAO means they cut my pelvis up and reposition it, inserting screws. Some day I'll have a fully metallic pelvis - TSA will love me.

The upside is decrease in pain (although I may still have some residual pain), a more stable hip and leg structure, a slowdown or stop to the arthritis, and potentially no need for future hip replacement. If I do need future hip replacement, my bone structure will be much more amenable, meaning less likely to fail, after PAO.

Downside is that I may have less range of motion, although the femur revision may give me some more turnout. Normal turnout is 30 degrees, and I have less than 5 degrees - "essentially zero" as the doctor put it. I do have excellent "turn in," which is ever so ugly in skating. All of this means it didn't matter how many plies I did, I would never ever ever ever ever ever ever be able to do an Ina Bauer. The rhumba choctaw? Impossible for someone built like me (yet I do it ... my way). All the coaches and ballet teachers who said I just wasn't trying hard enough ... well, you know the gesture. I'm too emotionally drained to get upset about it again.

Another downside is that I will be in the hospital for 5 - 7 days, non-weight bearing for 8 weeks post surgery, and unable to skate for 6 months, at which time they will do the other hip! So this is really 4 surgeries and 2 hospitalizations and a year off the ice in total. The thought of getting my strength, stamina, flexibility, balance and skill back in my late 40's after going through something like that boggles my mind right now. I know it's possible, but will I just give up and take up golf? It's entirely possible.

Finally, my insurance doesn't pay for this. The total cost PER SURGERY is roughly $150,000. That's right, them's a lot of zeroes. And then multiply that times two. And oh yeah, will the insurance company pay for the special hospital bed I need at my home for a month, and the physical therapy, when they don't even cover the surgery? I'm thinking not so much. The doctor's billing assistant said they are working to get this covered and if I wait until next summer (which I have to do anyway), they may have made progress.

I could have raided my 401(k) or my home equity at one point, but in this economy that's just not an option. How to pay for it is a big question, but I have time to ponder that as they can't even schedule me until next summer. I am tentatively penciled in for July, pending the funding issue.

A year off the ice is an awful reality to face. I'm not ready for that. I am still improving as a skater! I am still competing! I am still testing international dances! I am not ready to quit and not ready to have a forced hiatus which I'll need to fight back from.

Hip replacement has a much shorter down time and is paid for by my insurance. But, if I trust what I heard today, it won't be very successful for me. It sounds like my options are limited.

Meanwhile I will continue skating until the pain gets too hard to bear. Right now it is pretty constant, but sleeping is the worst. Skating isn't as painful as sitting. Maybe I will get some crutches so I can keep the weight off it all the time except for that hour or so when I'm on the ice. No cross training as I can't risk it. But I vow to get through this competitive season - I've made a commitment to Tim which I think I can keep -- and then take the next step.

Speak softly and carry a big stick

My new sidekick: A wooden cane that my grandparents brought back from Mexico 30 years ago. It was in my parents' basement so I borrowed it for a test run.

Some problems with carrying a cane:
1. It's hard to carry other things since you only have one hand free! I must get a backpack since I carry a lot of stuff most days.
2. It's unwieldy. I have already wacked two people with it and not on purpose. It falls down when I lean it up against things. It's easy to trip over if I leave it lying around.
3. It's heavy.
4. It attracts attention. OK, look, I know I could mitigate this issue by getting something plainer; my cane has intricate carvings painted in bright colors. But my grandfather used this cane for years and it has sentimental value. Plus I'm cheap. Why buy a cane when I already have one?

I now have some level of pain pretty much all the time. If I sit for long periods of time my hips start to ache. When I first get up, I'm too stiff to move for a few moments. I can still sleep but only on my back. This doesn't hurt my hips but it does hurt my back. I figure eventually it will hurt my hips too, it's just a matter of time. I can't lie on either of my sides.

Walking hurts, although after I get going it hurts less.

Skating hurts.

Standing, sitting and lying down all hurt most of the time.

It's a tolerable hurt right now -- a dull ache and not a sharp pain. I am not taking pain medications until I have to. I'm not big on meds. NSAIDS can cause kidney damage and I'd rather have some pain now than kidney disease later. If I have to start popping an Advil now and then I will, but I want to delay that as long as possible. I want to know how bad it is, not mask it.

I am hoping that the pain will be tolerable through this skating season. I can then do something about it. I have an appointment with the periacetabular osteotomy guy Oct. 30 (I still can't believe the lead times for doctors). PAO does not sound promising, however. It sounds horribly painful with a long recovery time. A week in the hospital, and no weight bearing for months. The pain is akin to a broken pelvis, because that's what they do, break your pelvis. Hip replacement/resurfacing sounds less painful with a much shorter recovery time. However, the life span of those methods is limited (10 years? 20? who knows really) and the PAO may postpone the need for them -- or eliminate the need for them altogether.

When I read about the limitations post-surgery, PAO also sounds worse. I can't skate if I'm constantly thinking about what I can't do. I don't want to skate if my toes turn in and my extensions look like shit. I have worked all of my skating life to fight my lack of turnout and now I am at the point where my legline looks decent. To give all that up now just because I'm in some pain sounds silly. But if the pain increases it probably won't be so silly any more.

That's PAO though. Hip resurfacing will allow me some turnout; perhaps more than I have now. It's just the limited lifespan that worries me. I plan to live a long time and don't like the sound of 2 revisions in my future. But it seems multiple surgeries of some sort are inevitable. It's just a question of what. And when.

Possibly Cathartic, Probably Immature,

...and Definitely Angry.

This is an addendum to my post from earlier today regarding my recent hip problems. If you haven't yet, please read that post first.

I realized today that my hip deformity has caused physical and emotional problems for a long time, even though I had no idea that I had this defect until today. This evening while feeling sorry for myself I recalled some of these problems; it is not much comfort now to know the reason behind them but I feel I should list them here for posterity.

I remember in Kindergarten when we were being read to, all of us kids were told we must sit "Indian Style" for 30 minutes (Not such a PC term now, but I'm sure you all know the position I mean.) At age 5 I could only sit that way for a few seconds before my legs started to shake and hurt. My femurs naturally rotate inward, not outward, and so I could then (and still now) more easily sit with my upper legs together with my lower legs turned out in "W" position.

I remember being told that we MUST sit for the half hour reading period INDIAN STYLE, and I was corrected by teachers, publicly, over and over again for being unwilling to sit that way. (Somebody explain the mindset of these Kindergarten Nazi Bitches to me ... I am at a loss.) Sometimes it hurt so much that I would cry. I remember the teachers scolding me for being "a baby" and "disruptive." Nobody thought it was a medical problem; who ever heard of a 5 year old who couldn't sit "Indian Style"? They never told my parents or sent me to a doctor, just strongly suggested to me that I was a bad child. Needless to say, children being the savages that they are, I was picked on mercilessly for being such a loser. Perhaps that's the starting point of some of my more interesting personality quirks.

Kindergarten teachers of mine, if you were here right now you'd be appalled at the highly disruptive and disobedient gesture I'm making in your direction with my middle finger. That's right, this is my blog, and I can do that if I want to. Nyah nyah nyah.

So I didn't see a doctor for the x-rays that would have made it obvious that I needed corrective surgery which, at that young age, would have prevented so many problems I've had since. Problems such as being unable to ride horses, something I love to do, because I can't walk for weeks afterwards due to my stiff and sore hips. Problems such as being yelled at as a teenager by skating coaches because I couldn't do an Ina Bauer (obviously not trying hard enough, probably lazy and bratty to boot). Problems such as difficulty in my late 30's riding a bicycle for more than a mile because my hips hurt (I chalked it up to being out of shape at the time and never rode a bike again). Problems walking over the last 3 years that I attributed to arthritis and old age which have caused me to groan like an old man as I get up and walk stiff-legged after getting up out of my chair at work, which co-workers have found amusing; I did too until it got so bad I realized that it wasn't normal.

{Addendum -- 8/8/08 -- my research reveals that periacetabular osteotomy, the surgical procedure used on children and young adults, was pioneered in 1984, so unfortunately it would not have helped me as a Kindergartner in the late '60's. However, I still wish I'd known about this problem earlier.}

Now it appears I may be too old for that type of surgery, leaving me again with the double hip replacement scenario as my only option, along with a lifetime of memories of things I could never do, or can no longer do, or stopped doing a long time ago.

Yes, I'm feeling sorry for myself, but this is my blog and I can say whatever I want to. Nyah nyah nyah.

Hip, Hip ...

You thought I was going to say “hooray,” didn't you! Fooled you.

(Note that this post was originally published on my skating blog, tntsk8.blogspot.com)

I wasn’t going to post about this, but I’m hoping someone reading may have advice for me. My diagnosis today is acetabular dysplasia, a congenital hip deformity. (German Shepherds often have hip dysplasia, so let the dog comparisons begin.) In this abnormality, the socket of the hip does not surround the ball of the joint as it does in a normal hip; those with this condition inevitably have pain, which progressively worsens; they develop arthritis, and eventually need full hip replacement. The edge of the bone may more easily fracture since it is not stable.

Of all the sports to participate in, according to the doctor, skating is just about the worst. Running or other high-impact sports would be the only things that could be worse. The doctor, I must say, was pretty unsympathetic; even though I described how I participate in the sport of ice dancing and what that entails, he clearly thought that my skating was just any old activity because, let’s face it, I’m 45 years old and most people can’t picture us old farts skating any way other than round and round the rink for exercise. I described lifts, and ballroom dancing on ice, etc. but his answer was that I’d need to find a different activity, such as swimming, or no activity at all, which would be easier on my joints. He didn’t seem to understand that skating isn’t just going around in circles; skating is my one and only creative outlet. I've never found any other type of exercise I enjoy as much.

He gave me the name of a specialist and said good-bye.

I did some Internet research and it was then that I realized that for a skater, this was one of the worst possible diagnoses. There are many other career-ending diagnoses of course (knees, head trauma, backs) but this is right up there with the more commonly-seen injuries. The fact that I was born with this and skated for so many years without symptoms, all the while a ticking time bomb, makes this even more difficult to swallow. I will admit that I’ve shed some tears today in the bathroom at work and in my car.

The Internet says that once someone has pain from this condition, the arthritis sets in quickly, so surgery is indicated right away. As the condition worsens, the outcome of surgery is less and less likely to be positive. While there are many people who skate at a high level after hip replacement, I shudder to think of the many ways such a major surgery can go wrong, and that surgery won’t necessarily mean that I’ll be able to skate again at my current level – or walk for that matter. There are no guarantees.

I have always been healthy and never had surgery, so I’m also fearful of the process. Even giving blood is a trauma for me since I have rubbery veins, so the thought of being hospitalized for 5 days or more is truly frightening. I’d almost rather just let the arthritis take its toll, until I think of the true consequences of that. Doing nothing and continuing to skate until I can’t stand the pain any longer is an option, but then I may not be walking when I’m 50. Having surgery which isn’t successful seems like a worse option.

The internet shows that 17% of people having the surgery are able to function at the same level as before when it comes to “athletic activities”; another 37% are able to function well enough to “ambulate.” Those numbers seem particularly disturbing to me. Hip surgery is great when it allows an elderly person to continue functioning so they don’t have to be wheelchair bound. Hip surgery that means I won’t be able to skate any more does me no good at all, and seems like quite a trauma to put myself through.

An aside - this explains why I could never do a spread eagle or an Ina Bauer, despite being able to do Biellmans. Typically people with this type of dysplasia have very little hip turnout, and no amount of stretching can change that - it's just physically impossible for the hips to move that way. To think of all the time I wasted doing plies, pilates, and various other stretches to improve my turnout which never seemed to improve ... and to think of all the coaches who told me I was "just not trying hard enough" to do that Ina Bauer. Well, it's vindication all right, but somehow THAT doesn't feel very good right now.

I’m in a little bit of shock right now since this was not the diagnosis I was expecting (I was hoping more for "you pulled your groin, now rest and ice it for a month then you will be good as new"), but I need time to process this and figure out what I am going to do. Readers, I already know I have your empathy. If any of you have constructive advice, I could sure use some now.