Tuesday, April 10, 2012

The Journey of a Thousand Limps Begins with a Dysplastic Hip

Well, isn’t this fun? I’ve been reading through a few hip (and I don’t mean cool) blogs throughout the last couple weeks and all I keep thinking is “holy crap this is helpful.”  There are so many things that you just wouldn’t ever think of without researching what someone else has gone through. I found several periacetabular osteotomy (PAO) procedure blogs which inspired me to create my own (FYI – I put the links on the side of this page so you can take a look at those as well). I am still in the early stages of planning my surgery, but if I can help anyone figure out what might be in their future than I’d rather start sooner rather than later.  So here’s my story to date (forgive the extremely long post....this is just to bring you up to date on my story so far. I think it's important to know what other people have been going through so that you can compare it to your own and how you're feeling...I definitely felt less alone when I read the other blogs and I was so glad to read what they've been through throughout their lives):

I was born with (what at the time was called) Congenital Hip Dysplasia of the right hip. The terminology used now is Developmental Dysplasia of the Hip (DDH). I lived a pretty normal childhood, as far as hip functionality goes. I don’t remember having any pain.
When I reached 10th grade, I started playing volleyball for the high school team and that is when I started having hip pain. Not terrible pain, it was more of an annoyance than anything. By 17-18 years old (in 2003), it started to be more prevalent….again, not overly terrible, but certainly more consistent. I wanted to play volleyball in college, but I wanted to get a better understanding of the situation with my hip before moving forward with a collegiate volleyball career. I scheduled my hip appointment in 2003 with Orthopedic Surgeon Dr. Ehrlich. When I first met Dr. E, I immediately had a bad feeling. He was ancient, he walked with a major limp, his hands shook, and he was all bent over and hump-backed. How in the world could this guy fix me if he can’t even fix himself?! Anyway, I digress…After a few x-rays of both hips, Dr. E went over my diagnosis of Congential Hip Dysplesia, and some very grim possibilities for my future. I was very disappointed with the appointment, not realizing the magnitude of my deformity. Dr. E told me that I needed to have Total Hip Replacement (THR) within the next five years in order to be able to live a normal life. That was really sobering for a 17 year-old girl who wanted to play four years of college volleyball. And really, volleyball aside, what young kid wants to hear something like that? You’ll need major surgery before you’re even 25?
I left the appointment very discouraged. At that time, my hip pain was not unbearable by any means. It was more of a nuisance, really. So, I decided not to do anything and to go on living my life. I decided to wait a few years to really start thinking about what to do with my situation.
 So, let’s fast forward 7 years to 2010. During those seven years I played all sorts of volleyball, I’m talking four years of collegiate volleyball with 2-3 hour long practices, countless matches, pick-up volleyball, 2 winter leagues a year, 2-3 different summer leagues a year, I was a volleyball machine. I tell you this because, while volleyball is not a contact sport, it is certainly a high IMPACT sport. And it really took its toll on my sadly-dysplastic hip. Over the past 3-4 years the quality of my hip (and in a way, my life) has really degraded. Now I’ve got alllllllll sorts of pain. I’ve got tingling pain, I’ve got numbing pain, I’ve got dull aching pain, I’ve got sharp stinging pain...you name it, I’ve got it (this line reminds me of Forrest Gump: “There was little bitty stinging rain, big ol’ fat rain, rain that came in sideways…”). And I have it in all sorts of places, I’ve got it in my groin, on the side of my hip, in my lower back, deep in my toucus, it radiates down the side of my leg, into my knee and sometimes, if it’s been a really great day, it goes alllll the way down into my ankle. Those days are awesome. And…just to keep the fun going, now I’ve got pain on my left side too because I compensate for my right hip pain.
So, my husband and I decided it’s really time to get things going with a fix for this silly hip. The very first thing I did was find a new doctor. Dr. E, while knowledgeable, was about 100 years old back in 2003…so I can only imagine him now. And quite frankly he really didn’t tell me what I wanted to hear. (I know this last remark is silly and immature…but I was young at the time and the consult with Dr. E really left a bad taste). I talked to my primary care and I was set up with (WONDERFUL) Dr. Jonathan Schiller. What a breath of fresh air. He’s got fabulous bedside manner, he’s not anywhere near 100 years old, and he’s got OPTIONS for me that weren’t really available back in 2003 (at least, not that I was told about). In the middle of last year, I had a consult with Dr. S. After looking at some x-rays, he discussed my options. He said that my particular case wasn’t all that bad (woohoo!), and that it could be taken care of with a corticosteroid injection and some arthroscopic surgery. He basically told me, if the hip keeps getting worse, we’ll go in arthroscopically and roter-rooter out the scar tissue and clean up my femoral head. Splendid! Was a wonderful alternative to what I originally thought I would need in THR.
This past January (1/2012), I had a series of imaging completed. I had a live x-ray with a corticosteroid injection, an MRI with contrast media, and a CT Scan.

So, after a lot of blah, blah, blah-ing…I promise this is the part where I talk about PAO and how it fits in my life. 

After reviewing the new images, Dr. S told me that my situation was different than he had originally thought. Unfortunately, the original x-rays he took last year had “false profiling” which showed more coverage of my femoral head than what is actually there. The actual status of my hip is that I have less that 50% coverage. Drat. Dr. S went on to say that I also have a torn hip labrum (which is really common with DDH). He went over the following 2 options:
1.       Have the roter-rooter, arthroscopic surgery to clean up and repair the labrum for now, and have Periacetabular Osteotomy (PAO) later (like a couple years from now).
2.       Have both at the same time.
The POA is pretty major surgery. There would be a large incision and he would essentially create better coverage with my existing pelvic structure. He would have to cut the section of my pelvis with the hip socket and tilt it to create better coverage for my femoral head.
Some other thoughts from the appointment:
  • THR is inevitable. I will need it at some point, even if I have the PAO. The hope with the PAO is to prolong my time before I need the THR. So, the PAO is a not an “instead of” procedure.
  • Dr. S mentioned a few times that in terms of the long-term health of my hip, PAO surgery is definitely the way to go. If I do nothing, hip degradation will accelerate and I will need THR much sooner rather than later. Furthermore, if I don’t do the PAO, the current state of my hip is so poor (and will continue to degrade), that it could affect the outcome of the THR. The current surface now and what it would be in the future without PAO, is very poor surface for placement of the cup used in total hip replacement surgery. Here’s the key point: If I jeopardize the possibility for successful THR, there are no other options. This would, obviously, be very bad. If I did have the PAO done, it would help create a better surface for the future THR surgery. Basically, my odds for a successful THR are much better if I have the PAO completed.
  • The whole idea behind the PAO is to give me immediate coverage with existing bone structures, instead of artificially. This surgery would give me the coverage that my femoral head needs, and it would provide immediate relief in the sense of hip degradation and slow further degradation of the hip joint.
I need both, they have similar recovery times…and both require anesthesia, so why on earth would I do them separately?
There are a million different factors (when will we have kids, how long will it take for my hip to get worse, what if the roter-rooter doesn’t help? etc.) that we had to consider, but we’ve made the mental decision to go ahead with the PAO either later this year or early next year. Right now I’m in the process of getting a second opinion, mostly because I feel like I have to with such a big decision.

My appointment with Dr. Saechin Kim - orthopedic surgeon is on May 4th. We’ll have to see what he says!

So, my main goal with this is to reach people who have similar hip pain and problems and want to know what other people are going through. What other people are feeling in terms of pain, and also how I am making decisions and what it's like to go forward with PAO surgery. 
The questions that I have had through my diagnosis is: Am I in enough pain to go through with this? Am I making a big deal out of nothing? When is the right time? What are other people going through? Has it been successful? And the biggest one: What was the PAO journey like? 

Here, I'll keep track of my pain levels, activity levels and how DDH is prohibiting my life. I'll mostly discuss what steps I'm taking to prepare for PAO, what PAO is and how it helps (which I covered in this entry).

I really want help others know that there ARE other people, other YOUNG people going through this. 

Please feel free to leave questions and comments. I'd love to keep this going on a regular basis!