The journey of my diagnosis, contemplation, scheduling and execution of pao

Monday, May 19, 2008

Back from St Louis

It was a fast trip. My grandma, my mom, my daughter Jordan and I left Thursday morning in the sunshine and ended up in downtown St Louis in the cold rain. We stayed at a fantastic hotel on the 26th floor, in a room with a balcony (which I initially wanted but then realized my fear of heights and about had a panic attack upon stepping outside). We got in late and didn't have time to do much of anything besides dinner and bed. We left first thing the next morning, didn't get to enjoy the hotel much but it was still nice being away and not have to worry about dinner and baths and dogs and such. We rushed to get to the doctor's appointment because traffic around St Louis was bad due to closed highways and road construction (not that this is any different than any other city this time of year but it was hard being in a different city and trying to navigate through). After we made it and checked in, I was called back for multiple x-rays. Then we waited more and finally went back to see Dr Clohisy. He was very professional and seemed to genuinely care about what he does and what he can do to help. He told me that my best option was the periacetabular osteotomy but I had to lose 30 pounds (I've already lost 30) before he would perform the surgery. I was a little overwhelmed considering I have worked really hard to lose my first 30 but in retrospect, I'm glad he pushed the weight issue because it not only gives me a goal but will make surgery, recovery, etc much easier. There was a slot available for surgery in September but I really thought trying to lose 30 pounds in 3 months would be tough and I don't think it would be a very healthy way to lose weight so I opted instead for the November date - November 17, right before Thanksgiving. Not a great time of year to have a major surgery but it will work and it gives me a full six months to lose weight and plan. We were at the office for 3 full hours (after x-rays, consultation, more x-rays, surgery scheduling, etc). My mom and my grandma were worn out but my little girl did wonderful, didn't complain at all - we brought all her Polly Pockets and she had a big time playing with them and talking to another little girl in the waiting room. I was so proud of her! We stopped on the way home and she got a new swimming suit, which she had to wear the entire way home, just adorable!

So I left St Louis in a kind of foggy state, glad to finally have a date so I can get on with my life but nervous, scared, all the emotions I'm sure anyone goes through when theory becomes reality. I also agreed to participate in a couple of studies for Dr Clohisy (why not, if it benefits others) so I filled out an eight page questionnaire about my hip and am wearing a pedometer on my bad leg that measures steps and pressure I put on my leg. I have to wear it until this Saturday and then again after the surgery, no big deal.
While we were sitting in the waiting room, we met another girl from Kansas (her KU t-shirt gave her away) who was also seeing Dr Clohisy for hip dysplasia. It was such an odd coincidence - the waiting room was huge and we just happened to be sitting next to someone going through the exact same thing as me (except bilateral, both hips - I'm lucky and only have one bad hip). We left before she was done scheduling surgery but her grandmother, who drove down with her, said Dr Clohisy also told her she had to lose weight before he would perform the surgery. That made me feel a little better, at least I wasn't the only one!
We got home Friday night at 8pm and left again Saturday morning for my brother's graduation. We had a great time, spent the night at the Plaza in a great hotel, got home Sunday and spent the day outside in the garden. At least now that my surgery is six months off I can finish up my garden, I was concerned I wasn't going to be able to get it done this year and that made me upset but now, watch out ... tomatoes, tomatoes, everywhere there's tomatoes!! My sister-in-law did a great job planning Jim's graduation, the brewery tour, lunch, graduation, happy hour, dinner, drinks after - I think everyone really enjoyed themselves! I enjoyed myself a little too much and put on a little weight this week, I know the wrong way but nobody is perfect :) I'm back on track today and ready to hit my goal! Here's my brother and I after graduation. Jim, I don't care how successful you become, you'll always be my goofy little brother!

Well, since I have six months to go and lots of things to deal with between now and then I'm sure I'll keep everyone updated!

Friday, May 9, 2008

St Louis Anticipation

One week from today I'll be in St Louis for my consultation appointment. I never did hear back for the doctor in CA, oh well - she's a busy woman. I've heard nothing but good about Dr Clohisy in St Louis and I'm looking forward to meeting him and hearing what he has to say.
I had to stop walking on the treadmill a lot, I can only go about 1 or 2 times a week, more than that and my hip hurts so bad I can barely walk. I have done a LOT of gardening. We added onto the back vegetable garden so I can plant even more vegetables for Colin to take care of during my surgery/recovery. We also planted 10 trees (8 fruit, 1 weeping willow and 1 autumn purple ash), 3 rose bushes, 4 grapevines and at least 15 more perennials in the front bed. I've got an order from Bluestone Perennials on the way to finish up the back perennial bed and I still have all my impatiens to plant on the front porch. I enjoy gardening so much, it's a real stress reliever for me and it's great exercise!
My sister-in-laws wedding is coming quickly at the end of this month and I've been working really hard to help her tie up loose ends - programs, centerpieces, etc. It keeps my mind off my upcoming surgery, it's going to be such a nice wedding! Here's a picture of my mother & father in law, my sister in law and my husband under the arbor my father in law made for her wedding, it's just beautiful and he worked very hard on it.

Since just my mom and I are going to St Louis we're going to spoil ourselves a little and have pedicures and stop by Stark Brothers (where I get all my fruit trees) on the way home, I'm very excited!
This weekend is my brother's graduation, he's getting his masters and I'm so very proud of him, he's worked so hard and has been very successful. He's not only the first male on my dad's side of the family to get a degree but also the first to get his masters - Way to go!!
Well, not a lot of this has to do with my hip, I'll update again after my appointment!

Monday, April 28, 2008

Trolley Run Weekend

What a nice weekend, a little chilly but still pleasant. We shopped all day Saturday for new tennis shoes - my old ones I've had since Daelan was born, 8 years, and I'm sure weren't helping any with hip pain when I walk on the treadmill. I got a really nice pair of men's avia (I have gigantic feet, can't wear women's shoes) with a arch support insole and so far they've been great! I also got my outfit for my sister-in-law's wedding. And I managed to walk around all day without a ton of pain. Yesterday was the trolley run down on the plaza. We didn't have to go really early and volunteer (not yet anyway, next year we will since my sister-in-law is the big woman in charge - congratulations by the way Jenni, what an accomplishment). The kids have such a great time running. Jordan was freezing but still ran her little heart out and got her ribbon. Daelan & Rowan did the long course run this year - all the way around the track - and boy were they tired, but they did it! I was so proud of them! We teased all day about how very upset I am that I'll never be able to run again - never did a lot of running in the first place, I can live (and will) the rest of my life without running. After the run we went to Suburban (probably one of the greatest nurseries of all time) to look around (I'm getting the gardening itch). The place is incredible, we got to drive around on golf carts which the kids thought was great fun! I wanted a redwood tree but since we just got three trees yesterday opted instead for 3 rose bushes (one is a gorgeous bright apricot colored rose, just beautiful), 3 phlox and 4 hardy geraniums. I also got 2 flats of impatiens because I have the perfect porch for impatiens, they do so well and I have so many pots to plant. I got a chance after we got home to get a few things in the ground and I picked a lot of weeds. My hip was about done by the time we sat down on the porch at the end of the day. And I suffered last night, I was hurting real bad. This morning I seem fine, but it's early. Haven't heard back from doc in CA, hopefully will hear something this morning! Happy Monday!

Friday, April 25, 2008

This is how it all began

My left hip has always been somewhat of an issue for me. As an athlete in high school, after a particularly strenuous basketball game, I had the sensation that my hip was "popping out" and it clicked, a lot. I was also asked on occasion "why do you walk like that?" But I was always very active so I had no idea I had an actual problem until about 10-15 years later. It has progressively hurt over the years and recently it got so bad the pain sometimes makes me nauseous and I have a very hard time sleeping at night. I finally went to a family doctor close to my house (my primary care doctor is way too far for me to drive just for silly things like hip pain), not expecting much, maybe a pulled groin, something like that. I mean, I've had three kids and my hip didn't bother me much then. Well, he took an x-ray, looked it over and said everything was fine - what a relief! But, he said because he couldn't explain the pain I was having so he would have the radiologist re-read the x-ray and I needed to make an appointment with an orthopedic surgeon.

About a week later I went to see an orthopedic surgeon, Dr Pierron - a wonderful man, with my "normal" x-ray. He left me in the exam room for what seemed like an eternity while he poured over my x-ray. He finally came in, sat down and said "well, your hip is not normal." What does that mean? He explained to me the situation - I was born with a dysplastic left hip. It was never caught as a child probably because I didn't exhibit a lot of unusual symptoms. Because I was so active and still am, I've worn down the cartilage some and now it's hurting. I was shocked that something like this could go unnoticed for so long. So I asked what my options were and he said I basically had two: 1. I could do nothing and I would lose all the cartilage in my joint probably within two years, then I would have to have it replaced. But since I'm so young, a hip replacement is a bad idea because they don't last very long and I would be looking at possibly multiple hip replacements over my lifetime. My second option was a hip reconstruction or periacetabular osteotomy (pao) that would renew the life of my original hip and hopefully give me a lot more years before I have to have it replaced. I was scared, they both seemed like bad options - either way I was looking at a pretty big surgery (the most surgery I ever had was my gallbladder removal - not that big of a deal). And the kicker to the reconstructive surgery is that there isn't anyone close that performs this specialized surgery, I would have to travel.

I went ahead and scheduled a cortisone shot into my hip to possibly relief some of the pain and Dr Pierron put a call into a doctor he knows in St Louis that does this sort of surgery. I was in shock the entire drive home from the appointment and when I got home I was near tears. I realized I wasn't dying but we were talking about my mobility - my kids are young, they've just started getting into sports that I can coach and we're busy people. I didn't have time to sit still and I surely didn't have time for a big surgery.

Two days later, I went in for my shot, if you have never had a cortisone shot into your hip, you are definitely missing out - why do they put in the local anesthetic after the cortisone? The needle had to have been the size of a small bat (I didn't watch, I couldn't, but I about jumped off the table when he stuck me, good thing my legs were strapped down). I'm teasing, it wasn't as bad as it sounds and it lasted a grand total of 3.2 seconds and then you're done. In the recovery room (which seemed just crazy to me that I had to practically sign my life away for a little shot and then be wheeled around on a bed, jeez, I can walk) Dr Pierron talked to me extensively about the pao and how much it would benefit me. He actually talked to me so long the nurse who was trying to discharge me just stood there and after he finally left said that she had never seen a doctor talk to a patient for so long after a procedure. It made me feel really good, like he truly cared about what was happening to me.

I called Dr Pierron one week after the shot to report how everything was going - not very well, I don't think the shot helped but more than 3 or 4 days, but I was warned before that it might not last. He had gotten a hold of the doctor in St Louis and was sending my x-rays to him to look at. Then I waited.

In the meantime, a couple of things happened. My dad (who is actually in the construction business - sells insulated concrete forms for ecoblock) has a friend/business associate in Michigan who is an emergency room doctor. Well, he mentioned to him what was going on and he was very eager to help out. He immediately put a call into his sister - a medical geneticist/maternal-fetal medicine/obgyn at Cedars-Sinai hospital in Los Angeles. She asked for me to call her back and I did. She was probably one of the most down to earth, honest people I have ever met. I really got a good feeling from her, I liked her very much. She told me exactly what not to do ... hip replacement, I was way too young. She told me that she wanted to look at my x-ray and show it to a couple of orthopedic surgeons in her area and get back with me. I was flattered that this woman, who I'm sure is busier than I could ever imagine, would take time out of her life to look at my x-ray. So ... I called my doctor's office for a copy of my x-ray (because the other one was on the way to St Louis) and guess what ... the office I had my x-ray taken in doesn't have the capacity to make digital copies so there was only one. Well, that stunk, since I didn't really want to call Dr Pierron to ask for it back (I really did want the doctor in St Louis to check it out for me) so I called my primary care (who had absolutely no idea what was going on) and asked him to authorize another x-ray, which he did without any questions. So I had the new x-ray taken and immediately fed-ex'd it out to the kind doctor in Los Angeles. Then I waited. I (coincidentally) had my well-woman check with my primary care a couple days after I asked him for the x-ray for me and told him what was going on. He said sorry, this didn't help my state of mind much.

So, while I waited I did what any normal person contemplating a huge surgery would do (cry - ha,ha), researched like crazy everything I could find online. I'm sure I'm driving my husband crazy because all I do is sit around googling. I found quite a bit of useful information about what a pao actually entails - probably more details than I care to know right now. What I didn't find in any great amount was actual stories about people that have had this done and how they dealt with it. I've found a huge support group in hipwomen, lots of great information, and I've read a couple of fantastic blogs about woman about my age who have already done what I'm going to do. If I can figure out this blog thing (this is my first one), I attached them to the side under links or something like that.

As of right now, I haven't heard back yet from California (like I said, she's a busy woman) but I did get a call from Dr Pierron that my x-rays had been reviewed and that I was definitely a candidate for the surgery (big surprise). I wanted to wait to hear back from California before scheduling a consultation in St Louis but after realizing how long these guys are booked I decided to go ahead and call his office. His personal assistant was very sweet and got me an appointment for three weeks from now - May 16 at 10:15am. I wasn't thrilled that the only available time was in the morning considering I live 4 hours from St Louis but it worked out okay because my mom & dad travel a lot and have lots of Holiday Inn points so we're using some points and spending Thursday night out there so we can be fresh and ready for the Friday morning appointment. However, this may all change depending on what else I hear, I'm positive the doctor in California will do her best to recommend the best surgeon for the job and isn't that what anyone wants when they are considering something like this?