Pre-Op Scheduling

Now that I have a surgery date, I have had to schedule all my pre-operative appointments. Before surgery I need a complete physical with blood panel, kidney function and liver function tests; autologous blood donations (giving my own blood for use during/after my surgery); and pre-operative appointments at the hospital.

The challenge is not only in coordinating schedules, but in planning dates that allow for proper hemoglobin replacement between blood draws and prior to surgery. My first blood donation cannot be earlier than six weeks before the surgery (February 2) and my last donation cannot be later than two weeks before the surgery (March 2). Moreover, one must allow seven to ten days between blood donations to allow the body to replace the missing pint of blood each time.

Two of my blood donations will be in New York at the New York Blood Center, which will ship my blood up to Boston. One of my donations must be on-site in Boston, as they need a very fresh on-site sample to separate into plasma and platelets for concentrated infusions during surgery. A shot of platelets in various areas can boost clotting during a bloody surgery (which any surgery involving bone-sawing necessarily is).

The schedule I have finalized is as follows:

February 3, 2009 -- Complete physical, including blood/liver/kidney levels, just to check everything and know my baselines. I'm getting this from a regular internist here in Manhattan and having the records sent up to Dr. Millis' office.

February 9, 2009 -- First autologous blood donation, at the New York Blood Center. After this appointment I am to ensure my diet has iron-rich foods and am to take iron supplements for five days.

February 19, 2009 -- Pre-operative appointments at Children's Hospital. During this full day in Boston I will meet with Dr. Millis, the anaesthesiology team, and admitting. I will also have my second autologous blood donation while I am there.

March 2, 2009 -- My third autologous donation, at the New York Blood Center, with the blood subsequently shipped up to Boston.

March 16, 2009 -- Surgery date.

Meanwhile, I have a more general goal of getting myself as strong and healthy as possible prior to the surgery. I have read that other women have experienced faster recoveries when they have gone into the surgery strong and fit. I also must try to eat a nutritious, iron-rich diet during this period of blood donations, as well as keep myself generally free of colds and other sickness. If one is sick one cannot donate blood; if one is sick in the days approaching surgery, the surgery will be postponed.

I've arranged my absence with work. I plan to be completely off the grid for two weeks after the surgery: one week in the hospital in Boston and one week sleeping and healing at my parents' house in Connecticut. During the third week (week of April 6), I plan to begin working remotely from Connecticut, although start day and hours per day are going to be contingent on how my recovery is progressing at that point.

I plan to stay in Connecticut for at least five weeks after returning from Boston, so I can have the help and supervision I would not have if I returned alone to my apartment in the city. Manhattan is NOT a friendly place for people on crutches, so ideally I would like to be almost off them before I leave Connecticut. Right now I anticipate physically returning to the office the week of April 27, but again that is contingent on my recovery speed.

Meeting Dr. Millis

Today my mother and I drove up to Boston to meet Dr. Millis and discuss my potential surgery. I say "potential" because it still was not guaranteed that I was an appropriate candidate for the PAO surgery, much less that I would have the renowned Dr. Millis as my surgeon. If Dr. Millis felt I was not a good candidate for a PAO, or if he opted not to take me as a patient, I would have been frustratingly back at square one. So my biggest concern heading into this appointment was getting everything nailed down, and most importantly, getting a surgery date inked into the calendar.

Prior to meeting Dr. Millis, I had to get additional X-ray and MRI imaging at the Children's Hospital's Waltham facility. I must admit that getting procedures done at a children's hospital is really kind of wonderful. For example, there is fun, whimsical decor in the waiting room, including fish tanks! I remember fish tanks in my pediatrician's waiting room when I was six years old. Nothing bad can happen to you in a place with fish tanks, right?

Additionally, the staff at children's hospitals are cheerful, patient and comforting. My X-ray tech was joking around, making sure I was comfortable and breathing, etc. I'm not particularly scared of X-rays but there is something to be said for treating sick and hurting adults like they are frightened children. Maybe all our hospitals should be like children's hospitals.

At the very least hospitals should always have a fun dragonfly mobile above the table when they try to inject contrast medium into you for your MRI. It was at least somewhat soothing to glare at the swaying, cartoonish insects, clenching my teeth as two nurses tried their hands at finding and piercing a vein in my superhero body. Apparently I have such good elasticity in my veins that they flatten out or roll away at the sight of a needle. Elastigirl indeed. Finally after five excruciating tries they got the contrast medium injected and so into the clanging doughnut I went.

After my Innerspace photo shoot at Waltham, we headed over to Boston to meet Dr. Millis at the Children's Hospital's main campus in Boston. While waiting for the doctor, I filled out a couple of questionnaires about my hip pain. It was a bit tough to know how to answer the questions since I wasn't in a lot of pain today. I am not usually in a lot of pain, but mostly that is because I limit my activities so much and stay off my feet if I begin to have any pain. This has especially been the case in the last six months or so, when my pain threshold has dropped such that I have had to carefully mete out my hip usage to keep myself pain-free most of the time.

My mother was concerned I was downplaying my pain but I really was not. I know the threat of severe pain is always there but I try to keep myself out of pain by preventing it rather than treating it once it has started. So for me the real pain is in how limited my physical activity has become in my efforts to avoid aggravating my hips.

That is not to say I have not had severe hip pain in the last couple of months: there are several times I remember being almost unable to walk and gasping in pain when I'd "overdone it". I put that term in quotes because overdoing it in my current state is doing activities that normally would be completely manageable for someone without my hip condition. Things like a tennis match or a long walk of a few miles. A healthy 29-year-old should not be felled by an afternoon at the museum.

I was still filling out the questionnaires when the doctor came in with his associate Dr. Brighton. Dr. Millis is an affable man with an enthusiastic air. He took a conservative approach, initially saying "if we decide this surgery is right for you" and similar flirty statements. Needless to say, this was annoying. I wanted him to say "OK, you need this surgery, and I'm doing it for you. Now let's talk logistics." But I guess he wanted to ease into it. Or maybe most new potential patients are not as decided, determined and dispassionate as I am about this whole thing. I've accepted the diagnosis and the need for the surgeries. Now I just want to get them over with. Right, recover; left, recover; done.

I truly think Dr. Millis had decided I was a good PAO candidate and that he was going to take me as a patient before he entered the room today, maybe even before I got to Boston and had the second set of images taken. I don't think he would have even had me come up to Boston if he hadn't, and I seriously doubt he would have spent so much time with me during the appointment if he was unsure.

The doctor watched me walk in various ways: normal, on tip toe, on my heels. He did some range of motion tests on both hips. I have no gait problems and have very good range of motion in both hips. We looked at the images from Waltham and the images I'd taken in October at HSS. The doctor drew the various angles on the X-rays to show where my socket edge was and where a normal socket edge should be. In the false profile view, it was even clearer that my sockets were far too shallow on both hips.

In the images, there doesn't seem to be that big a difference between my left and right hips, so it is a bit odd that the right usually hurts so much more. When I was off my right leg last summer, on crutches for a right knee injury, my left leg took all the weight and hurt more than it ever had before. So it is clear that my left leg has the same capacity for pain as the right. I guess the right is just quicker to pain because of the chronic labral tear and so I end up getting off my feet before the left hip even starts to hurt.

Dr. Millis confirmed that I am going to have to have the left hip done pretty soon after the right PAO. It will depend on the healing rate for the right hip, but it could be as soon as three months after the first surgery. That is faster than I expected, but honestly, the more I can compress this disability and recovery period, the better it is.

"Can we talk dates?" I asked, finally. Dr. Millis got his scheduling coordinator on the phone and offered me February 9. One month away! That was a bit too soon, even for me; I need to coordinate with work and other commitments. I took the next available slot, which was March 16. So there it is. Right hip PAO in two months. Giddy up!

Consult Scheduled

Sharelle Davis from Dr. Millis' office called me on Thursday morning to let me know that Dr. Millis had reviewed my file, and to schedule my first consultation appointment with the doctor.

When I had first begun talking to Sharelle last week, collecting my records and films for Dr. Millis' review, the doctor still had consultation appointments open in December; by now his first available appointment was in January. Dr. Millis sees new patients on Thursdays only, and with Thanksgiving, Christmas and New Year's Day all falling on Thursdays, the holiday season is not a scheduling cornucopia.

As an alternative, Sharelle offered to put me on Dr. Young-Jo Kim's track. Dr. Kim is on Dr. Millis' team and has worked with Dr. Millis for quite some time. The advantage is that Dr. Kim's schedule is lighter -- I'd be able to get a consult with him in early December. But if I chose Dr. Kim for the early consult, I was also choosing him as my surgeon -- one can't switch between the two.

It seems from his bio, resume and publications that Dr. Kim is younger and less-reknowned but by no means incompetently skilled at PAO surgery. That said, this was a choice I didn't really know how to make. How to choose between the doctor referred to you specifically by name as the "best" or his similarly qualified, yet unrecommended, understudy?

I called Dr. Su's office to ask for help with the decision. What had Dr. Su heard about Dr. Kim? Would he recommend him as an alternative to Dr. Millis? Dr. Su never got back to me with any answers, which I found disappointing. He might get back to me next week, I suppose, but I did not want to stall on the scheduling. I wanted to secure an appointment and have something concrete in the calendar right away.

I surveyed the message board about Dr. Kim and found no negative comments and one first-hand comment: a woman who has a surgery scheduled with him in the spring and who found him to be knowledgeable with a good bedside manner. In the absence of an answer and affirmative recommendation from Dr. Su, however, it seemed prudent to go with the doctor he had initially recommended by name. After all, Dr. Su hadn't recommended Dr. Millis' "team" or "program," he'd recommended Dr. Millis himself.

I took Dr. Millis' earliest available consult appointment, January 8, 2009. The appointment consists of an MRI at the hospital's Waltham facility in the morning, followed by a 12:30 appointment with the doctor at his Boston office. Sharelle could not estimate my surgery date based on the consult; she said it was something the doctor would discuss with me at the consult.

While I am glad to have an appointment in the books, the sluggishness of this process is very frustrating. Ideally I would have been having the actual surgery in early January. But I suppose I have unrealistic expectations for a busy, reknowned doctor and a major surgery. And I could always have gone with Dr. Kim if it was so important to me to race through this.

To her credit, Sharelle has been very kind, patient and responsive with me despite my many questions and phone calls. I have tried not to be an annoying patient (as I have had enough annoying clients myself to know how it is on Sharelle's end of the phone) but my impatience is difficult to suppress.

A woman on the message board told me that Dr. Millis' surgery lead time is typically three to five months from the consult. Since I am under 35 years old, I can have my surgery at Children's Hospital where the doctor has more operating room time available, so that should help. Even if we assume best-case scenario, I won't have anything earlier than a March surgery date for the right hip.

I suppose all this speculation is silly, though. There's nothing I can do now except carry on until January, doing what I can when the pain is minimal, taking it easy when the pain is worse, and enjoying the holidays until the dawn of 2009, the Year of the Hips.

Ready for Review

As of today all my imaging and office records from my visits with Dr. Su and the HSS Radiology lab are collected at Dr. Millis' office and ready for his review. Dr. Millis reviews potential new patients on Wednesday afternoons. So now I just have to sit around and wait for Dr. Millis' office to call me so we can begin scheduling my consult and hopefully my first surgery.

Meanwhile, my right hip is hurting a moderate amount. I stayed off it most of the weekend, but last night I played three hours of tennis. Perhaps that was a decision made with questionable judgement. Both my hips felt exhausted by the last half hour of play -- I could actually feel the exhaustion in the muscles in and around my hips, most likely because the muscles and soft tissue structures are pretty much all that hold my hips in place. The pain didn't really begin until today.

Today I can really feel the pain in the front of my right hip, where the labrum tear is. I've tried to limit my walking today and save all my hip use for tennis tonight. I probably shouldn't play, I know. But I have cancelled tennis for Wednesday so at least my hips will get a few days rest after tonight.

I honestly am not sure what I should be doing about my hip nowadays. Am I supposed to stay off it as much as possible? Or am I free to do my normal activities until surgery? I definitely don't want to cause damage that will jeopardize my surgery prospects, but I'd like to stay as active as possible if I may. I am going to start swimming for more low-impact cardio exercise, and keep up the weight training as well.

More when I hear from Dr. Millis' office later this week.

Feelings

So far I have only written about the chronology and science of this new circumstance. Along the way, my feelings about the diagnosis and surgeries have run from astonishment to acceptance, denial to determination.


When I first got my diagnosis, I was completely taken aback. As I mentioned in my first post, I had expected to be told to take painkillers, or do some stretches. I did not expect to be told I'd need one surgery, let alone two. When I left Dr. Su's office that day (a perfectly normal Tuesday, which seems to be when all shocking and bad things happen), I was distraught. It seemed my entire life would be taken away: days in the hospital, weeks barely mobile, months on crutches, half a year before I could play tennis again.

In the days between my diagnosis and my MRI, I researched my condition and the surgery. I read several blogs written by young women uncannily like myself, struck almost as if on cue, in their late twenties. It is because of those blogs that I began this blog -- in an effort to add to to the well of personal experience with PAOs, for current and future dysplasia sufferers.

Now my feelings have shifted from panic, self-pity and denial to resignation and motivation. I am convinced I need the PAO surgery in both hips and I am actively trying to move the process along to get started as soon as possible for the right hip. After 15 years of pain, it is time to get this fixed, hopefully once (ok, twice) and for all.

Artwork courtesy of and (c) Olle Söderström.

Bones and Cartilage

The xrays I took in July 2008 (right) show the faulty structure of my hips. Notice how the hip socket does not cup the femoral head on either side of body -- the sockets are shallow and thus all the upward, weight-bearing force of my femur slams right into the very edges of my hip sockets. You can see that the space there is much narrower than the space between the ball and socket in the rest of the joint. That is because I have spent 29 years pounding away at the cushioning of my hip joint in that one spot.

Dr. Su noted that my right hip is worse than my left, and therefore would need surgery before my left hip. One can see from the xray that more of my left femoral head ("ball" of hip) is inside the socket than my right. (In the xray, my right hip is on the left side of the film, as if you were looking at me standing in front of you.)

The next step was to ensure that I had enough cartilage left in my right hip to perform a successful PAO. If I'd worn away too much cartilage, even a PAO wouldn't necessarily keep me from having to have a total hip replacement relatively soon. Damaged cartilage has a limited ability to repair itself, and is very slow to repair. For this reason, humans suffer arthritis from a lifetime of wearing down the cartilage in their joints; if cartilage could quickly and effectively repair itself, arthritis would not be so prevalent. If I didn't have enough left to cushion the joint even after it had been reconstructed into the correct alignment, the PAO would not be an appropriate surgery. It would be too late.

Ideally, a dysplastic (dysplasia-afflicted) patient has a PAO -- reconstructing the natural joint -- rather than a hip replacement -- replacing the natural joint with a prosthetic joint. It is preferable to keep the natural joint since the body has the ability to dynamically maintain the health and function of the natural joint throughout life, whereas a prosthetic joint will wear out like any mechanical device and need to be replaced. A natural human joint generates less friction than even the most perfect ball bearing; in other words, we have never invented an equal substitute for a natural joint. Cartilage has not even been recreated in a lab yet, not via stem cells nor via synthetic materials. A prosthetic hip can only be expected to last 10 to 15 years in someone with my age and activity level, meaning the prosthetic would have to be surgically replaced one or more times over my lifetime. Clearly, one PAO in each hip now is preferable to several hip replacement surgeries for each hip over my lifetime.

On October 17, I had an MRI focusing on my right hip. An MRI is much more effective at showing the soft tissue of the body, and therefore could show the amount and state of my cartilage, as well as the other soft tissues in and around my joint, such as ligaments, tendons and musculature. It is worth reading the description of the MRI linked above -- I never really knew how the technology worked or why the machine had to make all that clunking throughout the procedure.

The MRI experience itself was not terribly scary if you don't mind napping in a farrier's shed. The scan took about an hour, with no physical effects other than an odd tingling from time to time. The lab had special MRI-compatible headphones so I could listen to the music of my choice during the scan. The clunking managed to drown out The Doors from time to time, but having music was better than listening to my thoughts.

On October 21, I went to Dr. Su's office for the MRI results. I was pretty worried that I might not have enough cartilage and would not be able to have the PAO in the right hip, but would instead have to have a replacement. As I discussed above, that was not the preferred option. My anxiety was fueled by the fact that my right hip had been hurting almost constantly since my xray-follow-up appointment earlier in the month -- it certainly didn't feel like there was enough cartilage in there!

Thankfully, there was. Dr. Su said I had a good amount of cartilage, but that it was beginning to "fibrillate," meaning soften and weaken, the early stages of arthritis. This just underscored the need to have the surgery as soon as possible.

My MRI report also explained why I felt so much pain in the front of my hip socket. There is a ring of cartilage called the acetabluar labrum that surrounds the lip of the hip socket, like an o-ring. Its function is to deepen the hip socket, keeping the head of the femur from popping out of the socket. Given my shallow hip sockets, it makes sense that my labrum was being put under intense strain holding my hip joints together.

The MRI report read: "The anterior [front of the body] labrum is chronically torn and degenerated, appearing hyperplastic [enlarged, stretched] and generating ganglion cysts [fluid-filled cysts caused by repetitive wear on the joint] that dissect outside the confines of the fibrocartilage, deep [into] the iliopsoas muscle-tendon junction." This means the cysts are intruding into the muscle-tendon junction of my iliopsoas, a muscle triad that are the strongest of the hip flexor muscles. This is causing "mild insertional iliopsoas tendinosis without tear," meaning degeneration without inflammation but damage to the tendon on a cellular level.

In short: ouch.

Once upon a time...

...I walked into a doctor's office expecting "take two asprin and call me in the morning" and walked out needing two surgeries instead.

But I guess this all really begins in high school, when I vaguely remember my hips hurting from time to time and eventually going to our local orthopedist. He told me I had "growth bursitis," but I don't recall what he suggested I do about it. He certainly did not suggest I had defective hip construction.

On and off during the fifteen years since that visit to Dr. Suburbs, my hips continued to hurt, sometimes badly, sometimes not at all. I don't recall it being one hip more than the other. I didn't mention the pain to many people along the way, partly because it was transient and so seemed less chronic in my mind, and partly because it was so chronic that I was used to dealing with it.

The pain is best described as feeling like a blister on the inside front of my hip socket; when my femoral head (the "ball" of the ball-and-socket hip joint) hit the "blister" in a certain way, there was a sharp pain. Sometimes it was enough to make me gasp; sometimes the pain shot down the front of my thigh. Sometimes my hips would ache when I was still, too, and I would feel the shadow ache down my thigh during the worst times.

The pain was exacerbated by certain types of exercise, mainly walking. I walked a lot -- around college campus, around my neighborhood when I lived in Los Angeles, almost everywhere once I moved to New York. If I did too much, the blister was irritated and then I had to stay off it for a while until the blister subsided. So that is how I played it.

I never took anything for the pain; if my hip hurt, I stayed off it until it felt better. In retrospect, I think this may have been wise.

In July 2007 I was seeing an orthopedist who specialized in sports injuries for an tennis-related knee injury, and I had him look at my hips while he was at it. "Mild to moderate trochanteric bursitis," Dr. Sports said, and offered me a cortisone shot. Beyond the fact that sticking an enormous needle into my hip to administer the shot sounded shudderingly awful, the treatment of just numbing the pain seemed short-sighted. There must be a reason my hips hurt, I thought. If I just numb the pain, won't I hurt myself more just pounding painlessly on a subdued injury? So I just carried on as usual.

In July 2008, my mother convinced me to visit Dr. Edwin Su at the Hospital for Special Surgery ("HSS") here in New York City. Dr. Su had done my mother's hip resurfacing earlier in the year and was "the best," she said, so I should really have him take a look. At the time, my hips were not hurting very much and I kind of blew it off. I went to Dr. Su's office to take the x-rays in July but didn't wait around to look at them with him. I figured he wasn't going to tell me anything different from what the other orthopedists had said.

Finally in October 2008, I went to see Dr. Su to view the xrays I'd taken in July. The only reason I was spurred to action was that my firm's New York office was moving downtown and I would no longer be close to HSS, which is on the Upper East Side. I figured I might as well get the follow-up appointment over with while I was still close enough to make it a short trip from the office to the hospital. If not for the office move, who knows how long I would have put off the follow-up visit?

Dr. Su took one look at my xrays and told me I had bilateral hip dysplasia. You may have heard of hip dysplasia in dogs, but it is basically the same thing for people -- hip socket is too shallow, putting strain on the joint and grinding away cartilage at the edge of the hip socket. I won't explain too much more; click the link if you want more details. The link above explains dysplasia as well as the surgery I need to have on both hips.

The surgery is called Periacetabular Osteotomy ("PAO") and essential involes chopping apart my hip and putting it back together in the appropriate postion, securing it with screws, and letting the bone fuse together in the new alignment. Pleasant thought, isn't it? And I have to have the surgery twice; right hip first, then the left within a year after the right, most likely.

In this blog I will detail my path from diagnosis through recovery. In researching this surgery I found several women who wrote blogs about their PAO experiences and I found the information and personal stories helpful in preparing myself mentally for this serious, and surprising, diagnosis and the surgeries it requires. I hope my story can be similarly enlightening, heartening, and informative for others.