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.