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Saturday, March 31, 2012

Bruises and Taping

I am now currently taking 1000mg of Naprosyn each day. I've noticed extreme bruising and some increased heartburn. Not cool since these pills could be sugar for all I notice; no better than placebo!

I went to PT today where I relearned how to sit in a chair and stand up straight. Since I hyperextend so much, I am now supposed to tape the back of my knees to prevent them from bending in the opposite direction. We hope this will prevent some anterior pressure on the hips as well. It is really odd to walk around with your knees feeling bent! I feel like a robot!

Friday, March 30, 2012

Drugs, Drugs, and More Drugs

I've never been on constant medication besides 200mg of Aleve BID until now. Nowadays, I feel like I am constantly making sure that I have taken my medication. I am on two different medications which I have to take two times each day, not within two hours of any Ca, Fe, Mg. That means to juice in the morning for me! Plus, if I don't take these medications in the morning with a substantial amount of food (ie two pieces of toast, two eggs, etc.) I'll throw up within 30 minutes of taking them. I have never been much of a breakfast person, but constantly throwing up in the AM will def make one want to eat breakfast to prevent this from happening. Even if I have a breakfast on the lighter side of things, I still get extremely nauseous, sigh.

To add onto this, I have a cream to put on my hip four times a day. Yes, this means that I have to bring it to the hospital with me and put it on at my lunch. I look super cool, "excuse me, I need to go and put some cream on my butt, hip, and groin!" Awkward. I try to keep it on the down low. I've only used it last night and today. I haven't noticed any difference yet. Except my skin on which I apply the cream feels as if it is plastic. Very odd sensation! Not any pain reduction yet, but I assume that it should take a little while to start to work. I am relying on this cream to help stop the vicious pain cycle in which I am currently stuck. Not only so I can function, but so that we can figure out if my hip has a mechanical block by allowing my muscles to relax enough to allow my hip to move as far as it can. We are hoping full ROM returns. I have a gut feeling that I have scar tissue build up, but I am not going to focus on the pessimistic side and, rather, focus on trying to stay positive as this cream really does give me a chance to avoid surgery.

Here's to plastic-feeling hips & optimism!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wednesday, March 28, 2012

The 3 Ps: Pain, Peroids, Problems

So this post may be TMI, but this whole chronic pain and generally not feeling well really wreaks havoc on the body's homeostasis. Since my surgery on January 5th my periods have been all messed up. I am usually extremely regular except for the month of my surgery (from past experience) but this time my body has freaked out. In 8 weeks I had had three cycles and since the last one about a month ago, I feel like I am at the very beginning of my cycle. Every day I have the mild cramping/bleeding. I know that it is not abnormal for thing like this to be altered after having surgery. But almost four months out and I am still having severe effects definitely caught my attention. I am not too worried about it and will bring it up at my next physical, which is a month away. But I just thought that I'd write about it since I am sure that some of you women out there have experienced this as well. Often times these things aren't discussed on forums/support groups.

Anywho, I'm still hanging in on this terrible fight of me vs. left hip. He seems to be winning at the moment. But am thoroughly looking forward to getting my anethetic cream tomorrow!!! Here's hoping it breaks my pain cycle.

I had to email my surgeon's ATC regarding my progress (they want weekly updates) I had been putting it off since I didn't want to email that I am feeling crappy and I hurt more than I did before. But when I realized that the significant increase in Naprosyn dosage didn't do a darn thing for me, I thought I should let them know. I don't expect a response as there really isn't anything for them to do. But I'll continue to be a good patient and continue to send them weekly progress emails as requested.

Sunday, March 25, 2012

80 Days Post Op

I had a count down on my iPhone that kept track of the time I had until my surgery and now it is counting my post-op days. I can't believe that I am now 80 days post op!! Craziness. It feels just like yesterday when I was looking at my app and it read 90 days until my surgery. Wow. I wish I could say that things are all hunky-dory, but not so. I am still struggling with everyday tasks. I am no longer on crutches, but I still walk with a bit of a limp. I can do stairs and generally do everything, but feel miserable most of the time. One thing I can't do is sit at my kitchen table to eat (we have stools without backs and it requires 90* of flexion to sit in them and eat....just not gonna happen). I also can't cut/paint my toe nails, nor can I put on socks normally. I have adapted a method to put on socks on my own, it is just a bit painful and awkward looking. But hey, you've gotta do what you've gotta do.

Looking back to before surgery, I had such hope and anticipation. Oh how I wish I could will my hip to begin to feel better. I feel like I have stalled for a month or so. In fact, both hips are a bit more angry since before my Vail follow-up. I think it is from the surgeon moving my hips more than they like to go. I am still waiting for anesthetic cream. I hope it comes soon as I really need something to break this pain cycle. Currently, I am still worse than before my surgery. I feel that every surgery I have it makes me worse. Each time I can't imagine things getting worse, yet they always seem to do. It is so frustrating to feel like there is no end in sight. I hope my new exercises kick in soon as I don't know how I would fit in another surgery (or two if my other hip doesn't start behaving himself!). I go through waves of uncertainty and worry. I absolutely know I am paranoid about my hips feeling this crappy, but, man alive! I've even had dreams (rather nightmares) about me having more surgeries. I realize that Dr. P hasn't said anything definitively yet, but the idea that further surgery is a possibility is disheartening. But, if I don't start to feel better soon, and if I do need more surgery, the break from school (probably a year) would be a welcomed break. I am having a VERY hard time keeping up and enjoying life. I would consider myself to be a relatively upbeat person, but lately I feel so stuck. Stuck in pain, not even wanting to move, putting on a smile each day despite feeling like this; it is exhausting. I really need to get over this and on with life.

Here's hoping that my OPERATION HIP FLEXION starts to progress. My hip flexion is still stuck at 95* and no pain improvement.

Monday, March 19, 2012


Forgive me, I am tired, but, enough is enough. I keep waiting for one day, just one day of having a 'good hip day'. Each day I wait and it doesn't happen. I am sick and tired of feeling like this. I can't even stand for five minutes at the moment without feeling like I am about to collapse, yet I must keep on functioning.

I realize self-pity doesn't help anybody or anything any good, but goodness gracious I need to vent and, Lord knows, everybody around me is tired of hearing about me and my hips.

I. am. so. over. hips.

Saturday, March 17, 2012

Paris Wasn't Built in a Day

I want to preface this by apologizing if this becomes long, I want to make sure that I get everything down.

So, my follow-up appointment in Vail started off to a rocky start. The traveling portion was fine, but the surgeon was going to be in surgery all day and didn't know when he would have time to see me, so I was to call when I got in town and we would go from there. It ended up that they said I could come in to the physiotherapy office, get measurements (ROM and strength) and then have an appointment with the surgeon at 5:00pm.

I went and got my measurements done and everything seemed fine until they tested my flexion and hip flexor strength. The dude said that there was something definitely not normal. Otherwise the strength in both sides is about equal (yay for PT!). But to wait and see what the surgeon said. After this, my Dad and I checked into our hotel, and managed to walk around Vail Village for a little bit. It was a gloriously sunny day, watching the skiers come down the mountain was very satisfying to observe. I could only imagine how nice it would feel to be able to rush down the slopes without a care in the world. I digress...

When we got to the office for my appointment the surgeon's athletic therapist went through my radiographs from my surgery and again did ROM and strength testing. He was quite concerned about the hip flexion as well. After waiting for quite a long time, the athletic therapist came back and said that he had called the OR to see when the surgeon could come back to see me, and he was going to be a couple more hours and that I was to come back first thing in the morning. Ok, no biggie, I know how hectic the OR schedule can get. As I was leaving the hospital my cell phone rang, the office staff said that they had spoke with Dr. P and that he wanted me to get a stat MRI. Instantly, my stomach flipped. "Oh gosh, something is wrong." Although I knew this was likely the case since I have such decreased ROM and am still hurting quite badly, I was now to face what was wrong. After waiting for the orders to go through, I got my MRI. I'm an expert now, having had five of them in the last six years. At 8:30pm we finally left the hospital and arrived back to our hotel where we grabbed something to eat and headed off to bed; we had to be back at the hospital for 8:00am.

In the morning, I had to get several rounds of X-rays to ensure that I did not have HO. Thankfully, I did not have any! Then, I got to go into Dr. P's office where he went through my MRI on a sweet HD computer monitor built into his wall unit. The labrum had healed to the bone and all of the anchors (7 of them) are still firmly attached to the pelvis. I have some edema, but this is to be expected at this point. The only thing is that my hip capsule is extremely thickened, but it shouldn't be causing so much pain. Basically, nothing much to help us figure out what was going on. Then I had to walk up and down the hallway. It is very difficult to walk when somebody is watching you. It really makes you self conscious: am I limping? Do I have Trendelenburg? Are my strides long enough? He kept telling me to 'walk my best'. I was certainly trying, but, alas, still a limp and short stride were present.

While in the exam room with the surgeon, he was incredibly thorough. He spent 45 minutes in there with me trying to think things through. He's only had one other patient, a soccer player, who had similar problems post-op. Lucky me. He ended up narrowing down my problems to either a mechanical block (ie formation of scar tissue) or a neurological disconnect. He said that the scar tissue formation is a possibility since I have a tendency to form it as per my large keloid scaring on the outside of my hip and the large areas of fibrosis found during my surgery this past January (I should note that this is more common in people with EDS/hypermobility). If this is the case, he will have to go back in and clean it up. The other possibility is that since I've had so many surgeries on my hips that the motor pattern between the brain and the hip is completely nonfunctional and my hip is clenched down, so much so, that I can barely move it. In which case, intense and specified exercises are necessary to correct this motor problem. I was given 7 new exercises and have to do them twice daily in hopes of correcting my pain and ROM difficulties.

I was also given new medications to help me get through my days. Medical school clerkship is hard and next to impossible to do whilst being in pain. I can barely stand for more than a couple of minutes before both my hips feel like they are going to implode due to pain. My surgeon kept asking me how the heck I was able to do it. I told him straight up, it sucked and I really don't know how I'm doing it. He listened and gave me two high dose anti-inflammatory meds for which I must take for three months, and he is ordering a special anesthetic cream with lidocaine and verapamil in it to help relax the muscles and stop the cycle of contractions. I was also given two lidocaine/kenalog injections into my hip at two different angles. For two reasons, one, to help him be able to exam my hip and two to help stop the cycle of inflammation. Those injections HUUUUURT! Phew! I have a great poker face though and they were impressed that I wasn't squirming in pain. I am still bruised from them 5 days later.

All in all, I am so extremely happy that I have Dr. P on my side. During my appointment he said that he can't promise that I won't need more surgery, but he promised me that we would get through this together and that we would work to get me my hips functioning again. My heart sank when he said that I may need surgery again, but, he handled it so nicely. He told me that he'd stick with me, that things would be okay and patted me on the back. He is the first doctor in 6 years who has told me that we could get to the bottom of my hip problems and that I would be fixed. I truly wanted to hug him. I have all the confidence in the world that he'll help me, whether surgically or conservatively, we will get my hips fixed and I will get my life back.

As it stands now I have to email weekly updates as to how I am feeling and we will go from there. I am supposed to make an appointment in three months at which time we will see if there has been any improvement. After proposing all options to me, Dr. P said to remember, "Paris wasn't built in a day."

Thursday, March 15, 2012

Roller Coasters

I've had many ups and downs, and seem to be stuck in a rut at the moment. I do owe an entire post (or two) to update on my follow-up appointment from two days ago, but I am still trying to process all of the information I was given. As well, I am dealing with emotions that run extremely deep right now. I will say that another surgery could very well be in the future for me as things are not progressing as they should. I am gutted. I promise to expand on it later, but I am not ready at the moment as I wasn't mentally ready for this lack of conclusion. I was expecting my appointment to be closure, and yet it still remains a mystery as to why and what my hips are doing.

I am excited about starting some medications to help me get through the day. Besides the post-op pain meds, I haven't been taking anything but OTC Aleve (which basically did nothing for my pain). Now I have prescription strength anti-inflammatories to take for three months, as well, I should be getting an anesthetic/calcium-channel blocker cream for my hip to help ease things up. I truly appreciate that my surgeon is doing something for my pain as it has been barely tolerable to function each day.

Sunday, March 4, 2012

Sometimes People Just Don't Understand

I am now 60 days post op and have completed two weeks of my rotations in the hospital. To say the least, it has been extremely difficult. I have been having to do 12-13 hour days. I am able to walk without crutches now, so I basically walk unaided but I don't go far without sitting down. I make sure I sit down to write my notes, I sit down when I interview patients, I sit down in endoscopy to watch the procedures. So, I do a lot of sitting. Plus, we always take the elevator so I don't have to granny-walk the stairs. The staff have been pretty nice, but, I got a lot more understanding when I was using my crutches, so many people think that since I am walking on my own that I am feeling all better. I would beg to differ.

I believe that I am functionally improving. My gait is less Trendelenburg ridden, as well, I am able to go down stairs one at a time now. These are improvements. Despite these, I sincerely don't feel much better at all. My pain levels are increased and my swelling has severely increased. It looks like I have grown a third butt cheek. This makes wearing dress clothes difficult since I have a pooch of swelling hanging off my side. This inflammation is not doing me any good, but I don't really see another option. I have to continue on with school and I can't just magically make my hip feel better. The struggle continues. Thinking about having to go back into the hospital tomorrow makes my stomach hurt.

I feel horrible that I have no energy and, frankly, can't care about what I am learning since all I care about is being able to walk and not cry in pain at the end of the day. It is a rough road, and I really don't think that many people can understand what it is like for life to continue on and you just have to scramble to keep up. I can't keep complaining to my parents, I just wish that somebody in my physical life could understand. I know I have great support from fellow hip chicks, but wouldn't it be wonderful to have a coffee or dinner date with somebody who understood?

I see my surgeon in a week and am looking forward to his answers. I have yet to be able to flex past ninety degrees and get the same pinching sensation as I did pre-op. I hope that I don't have an effusion or something of the sort in my hip. Although I wouldn't put it past me to get an effusion since I know I have, plain and simple, been doing too much. My other hip has decided to start acting up as well. I have groin pain at rest and sometimes some catching in this side. I pray that it is compensation! I will also bring this up at my follow-up. Sometimes, dealing with this takes every inch of courage and will to persevere. Currently, I am exhausted. How much more can I give? I am barely staying afloat in the ocean of life right now. I need a lifeboat.