Adjust Your Sails

Well, it happened again this morning.

I got up around 5 and went downstairs to have a cup of coffee and watch the news. I was just sitting in my big, wonderful over-sized comfy chair when BAM! Psoas locked up in what shall, from this point forward, be dubbed as a MEGA-SPASM OF DOOM. I don’t remember moving or shifting in any particular way, really. I just remember all of a sudden I had an aching pain like I was tugging hard on my psoas. So I tried to shift, thinking I was just sitting funny (which was hard for me to believe, I wasn’t leaning to either side or putting weight on either hip, I was sitting straight forward on my bum). At this point the pain was getting worse and when I tried to move my leg the muscle spasm just got worse. So I tried to get up out of the chair and, like the last time, I couldn’t really stand up straight. With the help of my hubby, I managed to get myself upstairs and in the shower…hoping the hot water and warmth would help loosen it up. As time went on over the morning, it started to feel a little better. About 30-45 minutes later, I sat down and bent over to put on my socks, and when I sat back up and stood up it was almost completely better…like someone had flipped a switch. I don’t know if the pushing the muscle onto itself made it loosen up or what, but I was thankful!

I am fairly certain it’s a psoas muscle spasm, but I guess I’m not totally certain. The psoas runs up and down the front of the joint, and the pain I’m feeling is more across the front, like this:

 It’s an aching pain, almost like a pulling? Or...pushing maybe? No…not pushing…it’s pulling. Contracting even. Like it’s so contracted and tight that any time I try to use the muscle or stretch it to stand up it screams. It hurts mostly when I try to move the leg forward to take a step or pick it up for something (like to step up or over something, lift it to put socks/shoes/pants on, etc.). When I do these things it yells very loudly. If I’m not using it at all and just standing a little crouched over-like so that I don’t stretch it the pain is mostly an aching pain.

Anyway, I think it’s a bit appropriate that it happened this morning. I came across a quote yesterday while on Pinterest doing Pinterest-y things.

It said: “We can’t direct the wind, but we can adjust the sails.”

I felt like it was so appropriate for, not only my RPAO recovery, but also my life as a whole these past few years. Those who know me know this has been a difficult few years for me, and some of my most treasured loved ones.

I don’t want to tell a sob story, but I feel like I need to write these feelings down and document them not just for my readers, but for me as well. While I am so glad that this blog has been helpful for many, it also serves as a place to reflect. So I want to put down some things I’ve had in my head since reading that thought-provoking quote.

In the fall of 2009, my father, who was the light of my life and my best friend, was diagnosed with cancer. The cancer was serious, and it was aggressive. My family and I tried to rally together to support the man who was the constant rock for all five of us kids and my mother for our whole lives.  To say that coping with my fathers’ grim illness was an extremely difficult part of my life is an understatement. “Adjusting the sails” during this journey was an ever constant thing. The disease took its toll on my father, and our whole family and in August of 2010, the cancer won the battle.

Losing my father was, without a doubt, the most devastating thing I’ve ever had to deal with. And while I tried my best to cope, and to heal, just 5 weeks later my then fiancé/now husband and I lost one our best friends in a tragic accident. Our 29 year old friend, Sean, died of cardiac arrest after finishing a road race. He was an all-around outstanding human being, and an even better friend. One of the best people I’ve ever met. I could go on all day about Sean. Matt and Sean were best of friends. It broke my heart not only to know that Sean was gone forever, but to see Matt hurt in such a way. This was so much for both of us to bear. Again, “adjusting the sails” became a common thing for us, and those around us coping with the loss. I miss them both every day; it’s still so hard to believe we’ll have to always be without them.

2011 and 2012 held many ups and downs along the way, including this RPAO surgery which was another hurdle for us to jump. This has been difficult, but the past months have been so much easier than the months just after the surgery.

So, I guess in reading that quote last night it really hit me: you cannot plan life. Life is unexpected, and unpredictable. It’s whimsical and wonderful, but it can be disappointing and tragic. You can have dreams and set goals and most certainly do your best to achieve all of them, but you absolutely never know what life will throw at you. If there’s a most important thing to learn it’s that you need to know how to handle the shifting winds. 

That quote is so appropriate for many aspects of my life, but I can certainly relate to how it represents my PAO recovery. Many times throughout recovery I felt as though I was on a good path and headed in the right direction, when something would throw me off course. I’m sure we’ve all felt that way, either physically or emotionally. We know that this surgery takes such a toll on not only our bodies, but also our minds, too. We’re all re-learning ourselves; our capabilities and our limitations. We’re having moments of great achievement, and also of great frustration. We’re on cloud 9, and then at our wits end…maybe even in the same day. We are growing, we’re changing, and we’re trying to take every obstacle as it comes. The most important thing is to let us all remember: Keep our heads up, keep moving forward, and no matter what life throws as us, always remember to adjust your sails.

Just a "Pinch" of Pain

Hello again, all!

I had my appointment with Dr. S. on Monday. I wanted to take a few days to digest it all and think about how to write this post before I went about my business, so here goes nothing.

Here’s what we discussed in the appointment:

1. “Excess” Bone Growth
2. Psoas pain
3. Deep groin catching/pulling pain
4. Non-union
5. Heterotopic Ossification
6. Left hip pain

Here’s what Dr. S. said about each of these things:

1. The bone growth that I can feel on my iliac crest is completely normal and to be expected. Dr. S doesn’t think it has anything to do with my psoas pain or any of my other soreness since the growth is high and above my attachment point. He asked me if the screws that I can feel are uncomfortable and if I want them out, I said no. They are slightly uncomfortable, but I don’t want him anywhere near me with that scalpel anytime soon.
2. Dr. S. told me that my psoas and some of the surrounding muscles are really tight, but that my hip-flexor and quad strength is actually pretty good. He didn’t seem overly concerned about it, but does want me to try and get those muscles looser and in less pain. We are trying for 6 more weeks of physical therapy (on my own time) to see if that helps the pain I’m having. If it doesn’t, we’ll take it from there. 
3. Dr. S. was a little concerned about the deep groin/catching pain I described in my earlier post. He doesn’t like the idea of having pain that won’t allow me to stand up straight or walk (obviously). He’s hoping that it’s a continuation of the psoas tightness and pain and that it will resolve itself with physical therapy as well. If it doesn’t, he’s thinking some deep tissues could be catching on my screw head (see photo below). If PT doesn’t help, we may have to consider taking my screws out. That would not be ideal, since some of my screws are pretty deep. He’d have to re-open my incision and do a lot of moving around to get to the screws. It’s not as cut and dry (tee-hee) of a procedure that I was thinking it might be. He did mention that he’d really like to avoid putting me through that if he doesn’t have to. We will see at the end of the 6 weeks. 
   
4.  The non-union is a non-issue. He said that it’s not a weight bearing bone and it’s not going to have any impact on me. He also said that while it appears that it’s not closing, it more than likely is still growing bone and will close on its own eventually. 
5.  Dr. Schiller did confirm that I do actually have heterotopic ossification (HO) in the areas that I had suspected by looking at the x-rays. He said that's no big deal and it's mostly in the deep muscles tissues and I'll probably never even know I have it.
6. This is the part where I sigh loudly and with general unrest. As I’ve mentioned in past posts, I’ve been having “start-up” pain in my left hip. This isn’t a new thing, it’s been happening for years. Lately, though, it’s a little more common and a little more startling. I had attributed it to the RPAO and that my left hip has had to work overtime for years. Even before my RPAO, my poor left hip got the brunt of it as I compensated for my right hip pain. So I explained everything to Dr. Schiller. He showed me my x-rays and told me that in terms of coverage, I’ve got pretty good coverage on the left side. He wouldn’t consider LPAO at all. However, he did say that I do have impingement on my left side, and that that is what is more than likely causing all of my left hip pain. He said that if he had to guess, that he’d say my left hip is probably a little degraded due to both the impingement and the overtime work it’s had to put in and that that’s why I’m feeling the pain.

I did a little research on my own so that I could better explain and show you what’s going on (and better understand it for myself). What I’ve got in my left hip is called Femoroacetabular Impingement (FAI). There are a couple different kinds and they are outlined in the website I’ve provided below.

http://orthoinfo.aaos.org/topic.cfm?topic=A00571

I have what’s called Pincer FAI. I’ve attached a couple of my x-rays, one pre-RPAO and one post-RPAO to point out where my FAI is.

Pre-RPAO

Post-RPAO

So, what now? Well, Dr. S. said that there are some surgeons who would have fixed it as soon as they saw it, regardless of if it was really bothering me or not. He doesn’t really operate that way (pardon the pun). He would prefer to leave well enough alone until it starts to bother me to a point of needing fixing. Over time, it will probably continue to wear at my labrum and joint space, and eventually I will need to have it addressed. It would more than likely be a scope surgery like what I had last March on my right hip. Probably not a big deal. We’ll have to take a day at a time and see how it goes. For now, he wants me to do what I’m doing on my right side for PT to my left side as well. That way we can see if PT will be help to me for the FAI.

That’s that, in terms of what I spoke about with Dr. S. I will say that I’m disappointed to hear that I’ll more than likely eventually need another surgery on my other side. Going through degrading pain on the other side now is not something that I’m looking forward to, I can tell you that much. I guess that we’ll just have to see what happens. Maybe it WON’T get worse after all. Time will tell.

I have to keep doing the PT on both sides for 6 weeks. At the end of six weeks I have to call Dr. Schiller’s office and let them know how I’m feeling and make an additional appointment if PT doesn’t seem to help either side.

I’ll post later about what I’m doing on both sides (RPAO-ed and left FAI) for physical therapy exercises.

Thanks for listening, and we’ll talk soon,

D

Sitting Pretty.

Hello again! Updating on the painful hip issues.

A couple weeks ago I decided to call and make an appointment with Dr. S. to see what's going on with this silly little hip. It hasn't gotten better, and what's more is that it's more painful than it was. I've had a couple pretty concerning episodes with serious pain. One where I actually couldn't even stand up straight or walk at all, I had to have my husband get my crutches so I could get around for a few minutes while my hip worked itself out. The pain eventually went away, but it was scary for a few minutes.
It's doesn't seem like bone pain, though. It seems like it's psoas, or something muscular/tendon deep in there that is pulling. It's a pulling and aching feeling, and it only happens when I use the muscles. It doesn't seem to hurt when the leg is moved without my muscles (like if I move it physically with my hands). Almost every episode has happened after I've been sitting for a while. I am continuing to have a hard time with sitting. Even as I write this, I can feel everything stiffening up. Generally speaking, I can get along just fine with the sitting/stiffness issue. It's only painful to stand up straight, and for a few seconds walking when I get up, but after I move around to get things going again it's not really painful at all. It's just the "start-up" that hurts. I think I need some WD-40.

So, now I just wait until I can see Dr. S. I meet with him in another couple weeks on the 31st of March. It can't come soon enough. I want to chat about my right hip, and I also want to bring up my left hip, which is also stiff and painful when I first get up as well. The left isn't overly worrisome, but I want to bring it to his attention in case he wants to see what's up.

I know it could be any number of things. I could just be that I really need to get back to the gym and work and stretch these bad boys out. It could be that these are the kinds of things I should expect from a PAO-ed hip. It could be that there really is something going on. Who knows, we will hopefully start figuring it out over the next few weeks.

I'll let you know how my appointment with Dr. S. goes.
-D

A "Cyst-ematic" Approach

Hello all,

Just a quick update:

I went for my ultrasound on my hip on Tuesday afternoon. They were checking for any kind of cysts/fluid build-up in the joint and around the front area of the hip. I relayed to the ultrasound tech that I really didn’t think it was anything like a cyst. She felt around the area I was talking about and agreed it’s probably not, but that they doctor is probably doing this as a first step. I asked if it was a “cyst-ematic” approach, she said yes and moved on with her life. She either didn’t get my pun, or did and decided it was so bad she didn’t want to acknowledge it. “No one could purposely make a pun that bad.”

Anyway, I’m hoping to get a call back from my surgeon today on whatever it was they found while investigating. All I know is that the ultrasound tech and I spent a good 5 minutes looking around at my bone cuts and screws. That was WILD.

I had a moment, while lying there being poked and prodded, where I felt I really was making something out of nothing. Yes, there are times where the bony growth is annoying and painful. Yes, it seems like it could be still growing. But, is it really so bad that I have to investigate it? I’m feeling like I should just leave well enough alone and be happy with what I’ve got. It’s not like it’s a huge deal. However, the biggest thing to me is that I don’t know what is up in there. If it’s nothing, then fine. Then I’ll know it’s nothing and I can forget about it. But, if it’s something that will continue to change, and possibly get worse? Well, I’d like to know that now, before it starts to worsen…especially if Matt and I want to start a family soon-ish. 

At any rate, that is that, and as soon as I hear I will post my next steps!

Growing Pains

This post will be short and sweet. I just wanted to post my latest x-rays to illustrate where my concerns are about excess bone growth. I talked about these in my "Tidbits" post.

Quick reminder of current conditions:
I'm 15 months out of RPAO. I've had RPAO and a right arthroscope to fix torn labrum, to microfracture and to resurface femoral head.

Any thoughts would be much appreciated! I've heard from a few different people and it seems most likely to be something like Heterotopic Ossification (which may, or may not be an issue). Also, regarding the non-union, my surgeon isn't concerned with it at this point. It isn't bothering me on a regular basis. I will be asking him about it again, just to be sure.

I've discussed the bone growth concerns with my surgeon and as a first step he is sending me for an ultrasound to see if there is any cyst formation in the area. I did have cyst growth prior to surgery.

That is all for now, thanks for all emails, comments and well wishes so far. Please feel free to leave your thoughts in the comments below! Any and all input is welcomed.

Thanks guys,
D

Tidbits

Hello all!

It’s been a while so I thought I’d check in and give you some updates and lay down some thoughts I’ve had lately.

What’s the latest and greatest in the life of hip-y Danielle? Well, for the past three and a half months, we’ve been building a house! It has been so much fun, and extremely exciting! We finally just moved in the first week of January, hence my hiatus from blogging. It’s been a crazy couple months with packing up the old apartment, and moving into our dream home.

So, for anyone who hasn’t been through the process, building a house is a LOT of work. We loved it, and it was an amazing opportunity, but it is hard work! We spent many, many, many hours looking at siding choices, and paint colors, and light fixtures, and cabinets, and sinks, and carpet, and everything else under the sun. Even ceiling fans and grout colors. 

My main point here is, if we had tried to go through this process two years ago? Well, I would have been absolutely miserable. We had days where we visited FOUR different Home Depots and several Lowe’s in the very same day. We spent entire days, from 7 o’clock in the morning until 7-8 o’clock at night, doing millions and millions of things for the house (Dramatic? Yes. Appropriate for my feelings? Absolutely. I never want to go to those places again ever). I know for a fact that I wouldn’t have been able to enjoy this process at all if it weren’t for PAO. And what’s worse is my husband would have had an extreme burden of doing most of the work. I am sure I would have missed out on a lot. It seems like every day I have another reason on why I’m so glad not only that I had PAO, but also that I timed it out for when I did.

 

Besides all of the house building activities (which seem to never end, even after we’ve moved in), I’ve been keeping up to speed on my hip-y’s and trying to keep tabs on what’s what. I’ve been chatting with some ladies about their dysplasia experiences, and have been keeping up with message boards and Facebook groups.

Lately, it seems like a common theme for these media outlets are these two things: the hospital stay for PAO, and the surgical screws.

The questions and comments on the hospital stay range from “What should I bring?” to “How long were you there?” to “What are some tips for when you’re in?” The best I can do is to touch on my experience and hopefully I can be of help in some way.

I was in the hospital for 5 days. My surgery was on Friday, October 26^th, and I went home on Tuesday, October 30^th. From what I’ve read, 3-5 days is average, so I’d expect at least three days. The packing questions makes me chuckle. This is because I packed a bag with all sorts of things. I packed like I was going on vacation, except I packed sweats and t-shirts exclusively…like I was going to a perpetual sleepover. I packed books and magazines and my iPad. I packed my toothbrush and toothpaste and facewash and dry shampoo. Do you know how much of it I used? Zip. Nilch. Nada. I stayed in a hospital gown the entire stay because I had so many people coming in to check the drain and the bandage. They checked my feet and range of motion. Putting sweatpants on would have been an annoying hindrance, not to mention how hard it would have been to take them on and off.  All of the cleaning and hygiene things I did either from my hospital bed, or in my physical therapy recliner. It was all done with what they gave me in the hospital, because it was too much effort to get anything from my bag. The last thing I will say is for the ladies (sorry guys, this may make you squirm): I packed feminine hygiene products just in case and I’m glad I did. I got Aunt Flow 5 days early because of the shock my body was in. Supposedly that’s pretty common. If you want to have your own particular type, I would pack some.

In terms of keeping busy, I was too tired and out of it to read magazines or play on my iPad. I actually felt too tired to even listen to music. I mostly just slept and watched mindless TV.

My tips for your hospital stay? Well, I’m not sure how each hospital works, what the protocol is, etc. But for me, I was tagged as a fall risk (I even got the fancy bracelet). This meant that any time I had to go to the bathroom, I had to call the nurse to come help me out of bed and follow me to the bathroom. So, my advice is to push the call button the very second you feel any kind of anything in your bladder. Nurses are BUSY. Busier than I can even begin to explain. It’s crazy. And while I am completely sympathetic and have complete and utter respect for their position and their hard work, it took an average of 12-15 minutes for them to come help me to the bathroom. (Yes, I timed it and took an average…I’m a scientist, what do you want?) That may not seem like a long time, but post-PAO my muscles were a disaster…holding my bladder was really not my best talent. If you even think you maybe might have to pee, push the button!

The only other thing I would say is that you should sleep every second you can. When you’re in the hospital, you’re on the GOOD drugs, you’re mostly alone (mostly), and you’re in a bed that you can adjust based on comfort. When you go home, it’s going to feel like you’ll never sleep again. It took me MONTHS to be comfortable in my bed post-PAO. Additionally, when you’re in the hospital, the nurses are going to come (what seems like) every five seconds to check on you. They will wake you up if you’re sleeping…they have no mercy. If you don’t sleep whenever and however, you will never sleep ever again. It’s AWFUL. Take advantage of sleep every opportunity you get.

The other thing I’ve been reading a lot about is the surgical screws. It seems like a 50-50 shot on whether someone has kept their PAO screws, or had them removed. I still have mine. They do bother me, from time to time. I can’t wear tight-waist jeans, and a lot of times a belt is painful. I can’t say it’s so bad I want to have them removed. I will say though, that the bone around the bone-cuts and the screws seems to be growing exponentially. Every few weeks, I feel like there is more growth sticking out of the front of my ilium. It’s seems like excess bone growth surrounding my screws. I’m not sure if anyone else has experienced this? It is definitely painful sometimes. Especially because I feel like it’s contributing to my psoas issues. Hoping to hear if anyone has had this and how it was addressed (if at all).

Well, what I thought was going to be a short post about not too much has turned into a novel! I am sorry to overwhelm you. Hope it’s been helpful for anyone who’s been having these thoughts. As always, if you have any questions or comments please feel free to leave it in the comments box. I’d love to hear from you!

Thanks all,

We’ll chat soon!,

D