10/08 - Appointment in Philadelphia

I managed to get an appointment with Dr. P in Philly in end of October. I'm in Pittsburgh, so it's either a drive across the state or a short flight. Thankfully a terrific old friend from high school/college lives in Philadelphia now, and even though I hadn't seen or spoken to him in 8 years, we picked up right where we left off years ago. Seriously, a true friend. I flew to Philadelphia on Tueday evening. Dr. P only sees patients on Wednesdays. My aunt and uncle picked me up from the airport, took me to eat at Geno's, dropped me off at Jamie's, and from there the adventure began.

Jamie got me to my appointment Wednesday morning at the Rothman Institute in downtown Philly. I filled out my paperwork and was taken back to the exam room in a reasonable amount of time. A doctor came in and checked my chart, asked me lots of questions, looked at my xrays, checked my range of motion, etc. Everything was set up for Dr. P to come in, then he left.

I waited a short time, then Dr. P showed up with several other doctors in tow. He briefly scanned my MRI, dismissed it as not showing him anything useful, then turned to my xrays. He verified yes, dysplasia, and yes, a PAO would be a good idea. He said he would do it, and expected a really good outcome, due to my age, size, bone density. He told me that on a scale of 1-10, dysplasia-wise, I'm at about a 5 or 6 (with 10 being the worst). Then we got into the serious surgery discussion. He listed all of the things that could go wrong, including damaging the sciatic nerve, and he hasn't done that yet on anyone, but it's bound to happen eventually, and he hoped I wouldn't be the first one he does that to. Next, he pulled out his Blackberry and looked through some dates, offering me something only a few weeks away. I felt I needed more time to prepare, and wanted to wait a bit longer before asking off work, so we ended up scheduling for January 27th of 2009. So, that was it. I went with a nurse and had xrays taken - standing up, and digital, which I'd never seen before, and was really cool.

Dr. P struck me as calm, straightforward, very nice, willing to answer any and all questions thoroughly and honestly. Another trait that occured to me, but I find difficult to put into words - it's like he's so professional and knows so much about what he is doing, he almost comes across as flippant. He literally glanced at my xrays for a moment, and read through the file, before telling me that he would perform this major operation, and have a good outcome. I'd almost rather have seen him pore over the information, make some sort of measurements, something more... In the end, I had the utmost faith in him, and rightly so.

Jamie took me on a day long sightseeing tour of Philadelphia before dropping me off at the airport that evening. I told him before I left that it was the most fun day I'd ever had. It's still true.

10/2/08 - This shouldn't be so difficult.

Still trying to get my xrays sent out. Dr. C is the newest doctor in the practice, and according to him, the only one who outsources patients, so the paperwork isn't always that efficient. It took about a month to get my information out, which was a little ridiculous. He asked me what the holdup was, and I basically had to tell him it was his office.

In the meantime, I'm still checking for information, reading all I can. There isn't as much out there about Dr. P as there is about Dr. M, so I'm considering going to see both. I might as well, right?

At this point, I'm confined to doing basically nothing. Treadmill, elliptical, stationary bike, all aggravate my hip quite a bit. It took me awhile to realize that was the problem, since it was a delayed reaction by about a week or so. I'm getting more and more frustrated by the paperwork, trying to schedule appointments, figure out time off, and how on earth I'll get to the appointments.

Scar massage

I'm breaking the timeline to add this while I'm thinking about it. I'm currently 8 weeks and 1 day out of surgery. I did not know about scar massage until last week. My scar is rather tender and tight, and I was not aware I should be doing anything to it. Google 'scar massage' or 'scar therapy' to find more information, and don't let your scar get all lumpy bumpy like I did.

9/10/08 - Dr. C - followup

Well, I had my appt today w/Dr. C... I think it went well. He started out telling me to go to Dr. P in Philly, and said "since it's so close..." I told him I didn't want to base my decision just on convenience, and he changed immediately, telling me to go check out Dr. Millis in Boston. Actually he said if I'm driving there, go to both and see what I think. He's sending a letter to Millis explaining what's going on. I didn't know, Dr. C has actually done the operation before with the guy who invented it (Ganz) while Ganz was here in the US, and he *could* do it, he just doesn't have the facility ("I'd need fellows and assistants and all kinds of extra people around.")

He was amused that I watched the surgery videos online. He said, "did they have green gloves on?" I said I didn't really notice (I went back and looked, they didn't seem to) and he said the video is Swiss if they're wearing green gloves. Yeah, basically I have to avoid impact type exercises... elliptical is low impact, but he said it'll still make me sore.

5/25/08 - First visit with Dr. C

Went in, had xrays done, etc. The helper guy, I think he said he was a DO, came in to get information, check pain, range of motion, write some things down. Then the doctor came in with the xrays. The first thing out of his mouth was, "You were a first born girl, right?" Well, yes. So, to make a long story short, I don't have enough bone covering the hip joint, so it relies on whatever soft tissue is above it for support, which will eventually wear down, leaving me with bad arthritis by my 40's. Arthroscopic surgery probably wouldn't help (his specialty) but we might do an MRI later to see if that might be an option. He said I need this other surgery, which is a major open surgery (periacetabular (Ganz) osteotomy), and nobody in the Pittsburgh area does it, I'd have to go to either Philly or Boston. They cut bone and shift it around, using your own bone and tissue instead of replacement.

Now I'm going to go to PT for the next 8 weeks, and go back to him again afterward. He was very nice, though. After he told me everything, he just stared at me for a minute and said, "you look sad." I said, "Well, yeah." He was very good about explaining everything, answering questions, and acting concerned, unlike the guys I saw in AL.

A couple minutes after he left the room, he came back with the DO, because apparently my condition was spectacular enough to warrant a mini training session. He twisted my legs back and forth, showing him my range of motion, quizzing him on different technical medical things (it was like they were speaking another language!). My favorite parts were "...if I moved your leg like this, you would tap out by now. But see, this doesn't hurt her!" and "..so from now on, when you think of hip dysplasia, think of her, and remember these xrays."

Also, the topic of childbirth came up, and he said that in the 80's and 90's, someone with my condition was told not to even think about getting pregnant. He said now it's really a non-issue, but it's going to be really painful because of the added weight. He said the only reason I'm not in more pain right now is because I'm thin (he must have said 20 times "well, you're thin" "since you're thin" throughout the visit). He did say I'll probably have to have a c section.

My Periacetabular Osteotomy

I originally didn't intend to journal this, but I've realized that I have forgotten bits and pieces along the way, so I'm going to recompile everything from various emails and communications, and attempt to date them appropriately. Partly for other potential PAO candidates' information, and partly for my own archive, since it is likely I will need to go through this again.

How did this all start? I first realized there was a problem in late 1999, when I began having persistent bilateral hip pain, and went to an orthopedic doctor in AL, back home. After xrays, exams, and being sent to a pediatric orthopedic specialist in Huntsville, the diagnosis was bilateral dysplasia, and I was advised not to engage in high impact activities, and take ibuprofen when needed. I was told my option is a hip replacement when the joint wore down and became unbearable. That is all I knew for a long time.

Fast forward to 2008. The pain had come and gone through the years, but was more persistent and increasing lately. Now in Pittsburgh, the sheer volume of doctors in the area was overwhelming, and I had no idea how or where to choose someone to go to. What was the point, anyway, I didn't want a hip replacement yet, right?

After years of persistent sinus infections (chronic sinusitis) (trust me, this is related), I happened upon a wonderfully terrific ENT specialist, and had a septoplasty and turbinate reduction. Endoscopic sinus surgery, where he cut a bone spur off the left side of my septum, and reduced the turbinates, giving my sinuses more room to drain. Holy miracle, batman, it made an incredible difference. I continue to see him for allergy issues, and have grown to trust him quite a bit... I mean, I did allow him to dig around and cut things in my head, right?

I noticed one day that there was a large orthopedic practice in the same building as the ENT office. I asked my ENT doc, Dr. S, if he knew any of those guys, and he had a pretty good opinion of them. I decided to give it a shot, and checked out the practice online. After looking at backgrounds, specialties, etc., I purposely chose the youngest doctor in the practice (Dr. C). This was based on the fact that the ortho guys I'd seen in AL were old and miserable, and my ENT is only a couple years older than me, and the most caring healthcare provider I've been to yet. I thought maybe he just hasn't been in it long enough to become old and jaded. Anyhow, back to Dr. C - sometimes things just work out. It turns out that Dr. C and Dr. S both went to school together at Notre Dame, and had nice things to say about each other. Apparently, in my unorthodox doctor choosing method, I picked a major hip arthroscopy specialist, as well as a extremely knowledgeable hip expert.

I know from reading on hipwomen that a lot of women are misdiagnosed or not given all the options that are available. I am so lucky that I happened upon a doctor who was able to give me an option that I didn't know was available... and more importantly, was able to give me hope.