9 weeks, 1 day

Well hello!

I know I was supposed to be back on here and write you all after my surgery consult on August 6^th, however (and I know this will be surprising), that appointment was cancelled. He “wasn’t going to be able to make it” that day, so we re-scheduled for August 20^th. I was none too pleased, needless to say. I was mostly concerned that I was not going to have enough time between my surgery consult and the surgery to get everything I need to get done, done.

With that being said, I still love Dr. S. Two of the three times he re-scheduled, it was out of his control. I cut him some slack.

I DID have my surgery consult this past Monday, the 20^th, and here is a summary of what I learned:

Overall, Dr. S. is not overly concerned about me using the crutches or not using the crutches prior to surgery. He said it’s not generally his protocol, but that I can use them if it makes me more comfortable. He also said that he doesn’t believe it will make any difference either way on the outcome of the surgery.

I can (and should) get a handicap plate if I will be more comfortable afterwards. I will start this process within the next couple weeks. It’s (apparently) very easy, just a form you fill out and your doctor signs it confirming the need.

I do not have to do the Autologous blood donation (where you donate blood to yourself) because Dr. S. uses a machine called an Intraoperative Cell Salvage Machine, a.k.a. “cell saver.” This may be graphic, but I think it’s super cool so deal. The machine uses suction to collect the blood I lose during surgery, it then washes and filters it so it can then be put back into my body. It’s like a conveyor belt of blood. Science is amazing, isn’t it?

The actual procedure, performed by Dr. S. and a fellow at Rhode Island Hospital, will take approximately 2-3 hours depending on how much work they do on the labrum while they’re in there. Dr. S. may have his partner from Texas fly up to accompany him with the surgery, but he’s not sure if he will do that yet.

Once the surgery is complete, I will be in the hospital about 3-5 days. I will start moving and flexing the joint post-op day 1, but I will be non-weight bearing for approximately 8-12 weeks. When the bone finally heals completely, I can start the more rigorous physical therapy and can pretty much go as hard as I can on it (in terms of PT). I will need to do about 2-3 days a week of PT. I will be visiting the PT office at least once a week, but I can do the additional day or 2 at home on my own. I can return to work around 8 weeks after surgery, depending on my progress. I will be on TDI in the meantime.

After about 6 months, I should be feeling really great. However, he doesn’t expect me to be completely “normal” (or as close as my crazy self can get) until about a year after surgery.

The surgery will not influence my ability to carry or deliver a child, the only stipulation is that I cannot carry a baby until after all of the bone has healed. That’s really a non-issue for us; we’re not ready to have kids yet anyway.

Those were all the good things I learned, things that made me think “maybe this won’t be so bad after all!” There were two issues that came up during the conversation that had me a bit bothered. The first pertains to the activity level for me once this surgery is complete. Dr. S. came right out and told me that patients that undergo this surgery are almost always instructed that they cannot return to ANY athletic or strenuous activity, whatsoever, after the surgery. Ever.  As in, never again. That did not sit well with me. I basically told him that he couldn’t be serious, to which he replied: Patients are only cleared to walk and MAYBE light bicycling. What the crap? Talk about a blow. He said he knows that that is not always a realistic plan for people. I told him that there was no way that I was not ever going to do anything athletic or “strenuous” ever again. He gave me lots of “Will you please just listen to your surgeon?” looks and after a few minutes of discussion he said that he would be fine with 1 day a week of any given activity. So, for instance, I can play volleyball, OR, I can line dance. I can go for hike, OR, I can do a short jog. I can only do one thing a week that puts any kind of stress on the joint. Otherwise it’s walking only. No running, no treadmill (which I hate anyway), no long bike rides, even swimming is going to be a no-no. LAME. I am unhappy.

However, I keep trying to tell myself that things could be SO MUCH WORSE. The past few days, over here in New England, the Jimmy Fund has been having the Jimmy Fund Radio-telethon. They’ve been having TV and radio interviews with all of these cancer patients whom, I’m sure, would trade places with me in a heartbeat. It’s unfair and childish for me to complain about something so trivial when there are people out there with real-for-real health issues…issues that can’t be fixed with just a few cuts of some bone and a couple steel pins. I have been extremely blessed with a healthy and outrageously happy life so far (with a few obvious exceptions). I have a family I wouldn’t trade for the world and a husband that drives me crazy but I just can’t live without (hehe ;o) ). I have a wonderful life, so I’m not going to stress over a little, itty-bitty issue like this.

Moving on. The second thing that bugged me about my consult was that Dr. S. said he may not fix the labrum while he’s completing the surgery. He explained that he wants to complete the surgery with as little trauma to the joint as possible. Considering the surgery already includes a bone saw, I’m thinking we’re probably going to not be getting the labrum fixed. However, he did say that he’s gonna “take a peek in the joint,” whatever that means, and see if it’s an easy fix. He said if it’s something he thinks he can fix easily and not be an extensive part of the procedure than he’ll go ahead and take the joint apart to repair the labrum. He also soothed some fears by saying that a lot of times with patients that have DDH like mine, once you fix the structure of the joint…the labrum pain subsides and becomes a non-issue. That is another reason why he’s not sure he wants to take the time to repair it while I’m under anesthesia, he’d rather have me under for as short of a time as possible.

The surgery is still scheduled for October 26^th. I need to go within 30 days of the procedure to have all of my pre-op bloodwork completed. This includes a coagulation time test. Um, I’m sorry, what? The things you’d never even think of.

Also! The day before the surgery the hospital will deliver a Continuous Passive Motion machine. This ought to be fun. Google that sucker, tell me if you don’t chuckle. It looks absurd!

“Continuous passive motion (CPM) devices are utilized to keep a joint in motion without patient assistance. CPM is being evaluated for treatment and postsurgical rehabilitation of the upper and lower limb joints and for a variety of musculoskeletal conditions.”

I can’t wait to try this thing, how awkward is that? It moves for you. I will, most certainly, be posting video of that thing once I’ve got it.

In the meantime, I’ll keep you posted on any and all new info.

Thanks for reading!

D

It's all fun and games until someone sets a date.

Well, we’ve had in interesting couple of months on this hip journey. Originally, I was supposed to have my surgery consult back in mid-June. It was cancelled because Dr. S wanted to see me on a day when he had no other patients. We then scheduled it for July 16^th. So, this past Monday, my hubby and I mentally prepared ourselves for the big meeting. We gathered all of our questions, looked at dates on a calendar, and prepared ourselves to learn all we needed to know about, and schedule my surgery in the fall.

We arrived at the hospital only to find out that Dr. S had been called to an emergency surgery and he would not be able to see us. What a huge bummer. It took a lot of effort to not be selfish about it, and not be aggravated that we weren’t even notified (turns out we were…which is a whole other story in and of itself). I just tried to remember that if it were me that needed emergency surgery, I’d want Dr. S to drop everything for me, too. I will admit that I was more nervous and emotionally invested in this appointment than I had thought. I was pretty deflated the rest of the day. 

My biggest concern leaving the hospital that day is that if we waited much longer to schedule than we wouldn’t be able to get the time-frame that we wanted. I would be upset knowing that I had been waiting for MONTHS to schedule the surgery and in the end we couldn’t get the time I wanted. So, when I called Dr. S’s wonderful assistant, I explained my worries. She completely understood and said that we would schedule my date right then and there! Who knew it would be so easy. So, the date of the PAO is officially set for October 26, 2012. I will have my surgery consult on August 6^th (hopefully).

So, we are just over three months away from surgery! That is just mind-boggling. It’s a strangely wonderful feeling to have an actual date to look forward to (or dread, however you want to put it), but it’s also very scary to now know that it is, indeed, going to happen. All of a sudden, it’s very finite. I actually AM going to have surgery and it WILL be before the end of the year. Yikes. I keep waiting for someone to call up and say “Just kidding! Your images look fine, it’s just a little something-something with an easy fix.” 

You see, before it was so fluid. I’m going to have surgery eventually. I’m going to have surgery to fix my hip “down the road.” I remember the original appointment with Dr. E from 10 years ago like it was YESTERDAY. I distinctly remember him saying: “You’re going to need surgery by 25-30.” I remember thinking he was loon (among other things), I would never need surgery. And here I am! Where the heck did that time go? And since when do we age so quickly, both in years, and in condition? It’s been 10 years…and it feels like it’s been the blink of an eye. 

I refuse to get philosophical…so I will leave with this:

I have my consult on August 6^th. I believe this will be the first truly informative appointment, which will lead to the first truly informative entry. 

Questions for Dr. S include but are not limited to:

Am I given a list of things to do beforehand?

Should I get a temporary handicap plate?

I have heard of people donating blood to themselves beforehand for this surgery, should I?

Who will be performing the surgery with him?

How long is the surgery?

How long should I stay out of work on TDI?

How long after surgery should we wait to have kids?

I’ll be sure to post as soon after the surgery consult as I can. Hopefully it actually happens this time!

Thanks for listening/reading/following my journey,

D

Everyone needs a crutch.

Everyone needs a crutch…quite literally in my case.

This past weekend was my first weekend “on crutches.” At my appointment with Dr. Kim on May 4^th, he suggested that I start using crutches when I do any significant amount of walking. When he first said this to me…I was taken aback and actually pretty upset. He says that using the crutches, or a cane for short distances, will help me get used to using them for when I need them all the time after the surgery (post-surgery I will be non-weight bearing for 3-6 months). Dr. K also said using these will help me to reduce fatigue in the joint and allow the inflammation in my labrum to subside. Dr. K said he wants me to be completely pain free going into the surgery in the fall.

Listen, I get it…a lot of people have serious injuries that are a lot worse than mine…life-changing injuries/deformities that don’t allow them to ever walk the same, or ever walk again, period. So, please don’t take this the wrong way. I’m not saying this is HORRIBLE or the worst thing that could ever happen. But it IS happening…and it IS a prohibitive deformity. 

Here’s the thing…I am the definition of a DO-ER. I can’t sit still for five minutes. I work 40+ hours a week, I play volleyball at least once, sometimes twice a week, I Co-Chair the local Relay For Life and on Sunday’s I volunteer at the local zoo. My husband and I are lucky if we get to spend one night a week together. But that’s how I am…I thrive on being busy. I’m also proud and very stubborn.

This is now the first time where I really HAVE to slow down because of my hip. It’s my first real speed bump. Playing less volleyball was bothersome, but I can deal with it because I still can play sometimes. Not wearing high heels anymore doesn’t really bother me because I didn’t like them in the first place. And I’ve been walking with a limp for so long that I don’t even realize I do it anymore. But walking with crutches is a bit (here’s that word again) discouraging. It’s cumbersome, and awkward. People stare at you, they pity you, and worse, they go out of their way to help you. It’s a bit of a blow to the ego and the pride. It’s embarrassing. I know people are just being nice, (and honestly, thank GOD they hold the door for me because I really don’t know how I’d get it if they didn’t) but it’s discouraging to know that the person holding the door, or letting me cut them in line, is doing it because they feel bad for me. 

And when I use the cane it’s even WORSE. Kids stop dead in their tracks and stare at me. They ask their parents “How come she has that?” and “What’s wrong with her?” Awesome. I know they don’t know any better, I’m not upset with the kids…it’s just that this whole thing is going to be a serious adjustment. And it’s only just beginning.

With all of that being said…and I hate to admit this…the freaking things help me so much. My hip felt glorious after the whole day of being on the crutches. At the end of the day on Saturday, my husband gave me the “I told you so” look, which is my least favorite look in the whole wide world, especially from him. Saturday morning, just thinking of everything we needed to do made my hip hurt. Our schedule on Saturday consisted of the following: Out for breakfast, Anne and Hope, a Target trip, Harbor Freight Tools, Christmas Tree Shop, and Lowes. The amount of walking we did at Anne and Hope, on a normal day, would have benched me for the rest of the day, walking wise. However, I did ALL of that…and then I went home and planted 14 flower pots and 4 window boxes! I felt GREAT. And just for comparison: I worked at the zoo the next day and an hour into my shift I was limping and having a hard time.

I think my biggest mental roadblock, when it comes to the crutches, is that I've spent so much of my life telling myself that nothing's wrong and that I can just continue to go about my business like there's no issue. Just something I can continue on with, and it's no big deal. Even with the pain, I was okay with that because I didn't have to admit that I have any kind of disability, or problem. This is really the first time that I feel like what I have going on really IS a big deal. It's hard to come to terms with something like this when you've spent so much of your time trying to tell yourself it's nothing. I hate complaining about something as silly as using crutches, but deep down it’s NOT the crutches I’m upset about, it’s the fact that this really is happening…and that I really do need to face this issue. It’s the “What’s wrong?” questions, the “Why are you using a cane?” questions that bother me…because then I dive into the whole ordeal instead of just ignoring it.

So, I’m starting to come to terms with everything, and in the grand scheme of things I know that I am lucky that this is all that I have. I could have serious, life-threatening issues. I’m lucky to be happy and healthy with a good family who loves me. However, after this weekend, it’s becoming more and more clear to me that this is whole journey is going to be more complicated than I thought…emotionally and physically.

Whad'dya need ta know about PAO?

Hello, again!,

I went to Massachusetts General Hospital yesterday and met with Dr. Kim for a second opinion on my DDH. In short…he told me that Dr. Schiller’s recommendations were correct. That I absolutely do need PAO, and the sooner I get it, the better.

Dr. K gave me some great information. He explained to me that PAO is one of the rare circumstances that they suggest you go through with the surgery BEFORE you are experiencing any hip pain at all (currently, all of the pain I feel is from the tears in my hip labrum), that is because the philosophy with this type of deformity is that you “go into surgery without pain, come out without pain.” Essentially, if you’re already having joint pain before you have anything done, chances are you’re going to come out of the surgery with pain, the damage has already been done.

I came out of there feeling like this is definitely something that I do HAVE to have done, and that it is the right incision…I mean decision (see what I did there? Gotta keep the mood light).

I thought that this would be a good time to show you exactly what is wrong with my hip, and how they are going to fix it. I’m going to attach my actual medical imaging, and try and compare it to my normal hip so you can see what is going on. I’ll then explain to you, in as much detail as I have, what Dr. S will be doing to fix my hip deformity. 

So, first off, here is a series of imaging of my hip. I’ll try to explain what they are as I show them.

 This is an x-ray of both hips. It shows a mostly normal left hip, and my sad right hip. 

To the left is an image in a 3D CT Scan of my right hip. This view is posterior, or from the back. Here you can see what is the proper coverage of the femoral head.

Now, this is the front of my hip socket. You can see how much coverage I'm lacking on both the top of the femoral head and also in front. I have less than 45-50% coverage.

 This one is just an extra view from the 3D CT Scan, which blew my mind. This is looking from INSIDE my pelvis, out towards the joint. See how I've got pretty good coverage in the back part of the joint, but the front part of the joint is really crappy looking.

The opposite angle from above. Mostly I posted these because I think they are crazy. The imaging that they can do today boggles my mind!

Additionally, I have labral tears in my joint. This is really common in DDH patients. But the MRI is awesome, so I thought I'd post it. This picture is if you're looking from the top looking down, into the hip joint. The circle in the middle is my femoral head.

 How do you fix this? Well, obviously PAO. So, I've inserted some information from a really great website who describes in regular people language...instead of doctor-speak.

 "This surgery involves cutting the pelvis around the hip joint and shifting it into a better position to support the stresses of walking (OR volleyball...okay the website didn't say this...but I did!). After the hip is re-positioned, it is held in place with screws until the bone heals. After the bone heals, the screws can be removed, but this is not usually necessary."

-Hip Preservation Surgery for Adult Hip Dysplasia
http://www.hipdysplasia.org/Content.aspx?id=9252


That makes it sound sooooo easy, doesn't it? They also had these neat looking little diagrams:

So, that is that! It's looking like I will be having the surgery sometime this fall. Probably October/November. In the meantime, Dr. Kim suggested yesterday that I start using crutches when I can to try and get my pain under control. The idea is to reduce usage which will reduce inflammation in my labrum, therefore reducing my pain. He said the best condition to be in when going into the surgery is to go in without any pain. While I'm under for the PAO, they will also be attempting to fix the labral tears. It will depend on what they find when they get in there. 

From here, I'll post as I learn new things and go through the process of getting ready for surgery. 

Thanks for reading! Please feel free to post any questions you have and I'll try to answer them as best that I can. 

 Your gimpy friend,
Danielle

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 10^th 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 4^th. 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!