Joy

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It’s been seasons since I last posted.  The simple fact that I can say that would have made 2013 Me really happy.  2013 Me couldn’t even imagine getting to where I am today.  I haven’t written because I haven’t need to.  I don’t think about my hips all the time anymore.  Most of the time I don’t think about them at all.  They no longer rule my life, activities, thoughts and I am no longer in chronic pain.  I guess what I’m saying is that, cross my fingers and knock on wood, I’m better!

Sure, better is relative.  I am so much better than I was a year ago when I was being primed for the possibility of a hip replacement because of the persistent and exhausting pain.  I am better than I was after each of my four surgeries.  I can sit cross-legged on the floor and I am back to flying trapeze, aerial silks, the gym – everything but running (but I think I’ll get there). No – I’m not better than I was before all of this started. I do still have some pain, mostly aches if I sit too long or push myself too hard but at this point, who cares?  I sure as hell don’t.

I saw my surgeon Dr. Sink at HSS today for what was basically my 2 year follow-up from my PAO and my almost 2 year follow-up from my SDD.  EL with crests 3.5.15

To my surprise I was told that I don’t need to come back for three years, and then only if I want to.  We agreed that I’ll probably need a hip replacement (or two) sometime down the line but for now, I’m A-OK.  In fact, my x-ray weirdly looks like I never had a single surgery.  It took me twice as long as to heal as normal so yea, it was crazy how long it took – like molasses on a 10 degree incline slow – but I am pretty much there. I also know that Dr. Sink and everyone at HSS will be there if my hips falter, my stand-by support system.

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So as of now, the blog part of this site, as it is, is on indefinite hiatus. I’ve decided that I am going to maintain and improve the site so that people who are searching for information have a resource.  I still get between 50-100 hits a day, so clearly there are people out there who are looking for information and I’d like to help them.

For most of you it’s “until we meet again.” Thank you all, for the kindness you have shown me.  I was not alone through this – you were with me, reading along, and I am genuinely grateful.

 

Summer 2014

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Holy macaroni has a been a while! 6 months since my last post is inexcusable so I have made a commitment that even if I do not have an impending surgery scheduled, that I will update my blog at least once per season. And this, dear readers, is summer.

Since I last posted, I completed the “plan of attack” I mentioned in my previous post — a combination of 2/week pilates, 1/week physical therapy, daily anti-inflammatories, and monthly meetings with my surgeon.  I still need to lose weight (for health reasons) but am hopeful that the regimented schedule required by part-time law school in the fall will help that along.

I am happy to say that my right hip, the PAO side, is doing really well.  In general, I have no pain unless I walk for a really long time and even then, the pain is mild (though I have to acknowledge that I haven’t pushed my hips beyond basic activities like walking).  Dr. Sink has been very happy with this recovery as well, although he did acknowledge that my recovery from the PAO was about 200% of the average.  I am the turtle of recovery but dammit, I think I pretty crossed the finish line.

The left hip continues to strengthen but unfortunately, the pain caused by activity – specifically any significant distance walking – has steadily increased.  As a result, my left hip is out of line and thus in pain.  Often, after sitting for a period of time, my left hip will ache just from standing up and I limp around for a while like a Weeble-Wobble.  I avoid stairs as much as possible because they cause the greatest pain.  On top of it all, I have maxed out of PT sessions because apparently I am ‘all better.’  All of that said, Dr. Sink and I agree that it seems possible that it will continue to improve, if slowly, so I am going to wait a bit longer see him around Christmas to discuss next steps and to have new MRI and X-Rays taken.  Based on my symptoms and the pain level, my guess is that I will have a total hip replacement within the next 9-15 months.

All of that said, I start back at my last semester in of law school in 2 weeks, followed by the Bar in late February, and then I’m DONE!  While it is unlikely I will ever run again, I’ve wrapped my head around that fact.  However, I continue to take pilates, bowl, golf, ride my bike (on occasion) and even take weekly trapeze classes — strangely, trapeze doesn’t bother my hips a stitch —  and here is video proof from my trapeze show on August 8th.    Onwards to Fall!

New Plan of Attack

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My femur with arrowThings were going so well! Oh, it was so nice while it lasted…

Not long after my last post, in late January I started noticing that my left hip had developed a new pain. I was used to the pain around my greater trochanter (caused by screw related inflammation of the tendons — the arrow in the picture of my left hip points to  where the hardware used to screw into the trochanter); however, this new pain was different. It was clearly coming from deep in the joint. Over the following two weeks I noticed the pain was chronic from my first step, and would become quite severe the more I walked. Sadly it got so bad that I busted out my crutch and called my surgeon who was able to get me in quickly. Since the cause of this new pain was not immediately clear, my surgeon ordered X-rays, an MRI, CT scan, and diagnostic injection into my left hip joint, as well as a 2 week follow-up appointment with him (which happened yesterday).

My Pelvis The results of all of the tests showed that the pain was indeed emanating from the joint itself and not the surrounding soft tissue. The MRI showed cartilage damage and cartilage loss which was a bit of a surprise.

My left pelvis and femur

CT Scan of my left femoral head and acetabulum.

Unfortunately, there is no way to fix cartilage loss except with a total hip replacement which, through some confusion, had been indicated to me that I might need. However, after completely breaking down at the thought of needing a hip replacement at 36, the confusion was resolved and I am happy to report that such procedure is hopefully still a long ways away.

We discussed alternatives for how to deal with this newly developed pain and cartilage damage (as well as the hip flexor pain I still have in my right side). Rather than rush to surgical intervention, my surgeon and I decided on a plan of attack for the next few months. I will continue to do physical therapy weekly, do my exercises at home on a daily basis, and take Pilates classes 2 times a week (typically reformer or tower) but I will not over do exercise and I will not try to run until cleared by my dr. We also agreed that I would lose 25-30 pounds since body weight can contribute to the pain and apparently for each pound you lose, the effect on your hips is the equivalent of 3 pounds of weight loss!  I’ll meet my surgeon monthly and if I’ve done all of the things that we agreed upon and I still have pain come summer we’ll then consider doing a arthroscopic surgery on one or both hips.

Finally, I have begrudgingly stopped giving my body due dates to get better.  Try as I might, I can’t will my hips into submission and I can’t make the pain go away by working harder.  I’m really bad at remembering these facts but I try, and I think that the next few months will help me focus a bit more on the day to day living rather than trying to get to 100%.  Let’s hope!

Dramatic Improvements

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Just under 3 weeks post screw removal and I did something today that I had honestly believed I’d likely never do again. I ran!

I decided to try to go for a walk to see how my hips are really doing by testing them out. I’ll admit that and it was rough at first – the bursitis in both hips (especially in my left) is definitely still there and both psoas were a little crabby – but felt a little better after a while (or maybe I was just numb – it was pretty cold outside). So after I’d been out about 20 minutes and was feeling a little cocky, I figured what the heck and just jogged/ran a block. It didn’t hurt any more or less than walking and felt so incredibly freeing that it was like I was dreaming. I proceeded to walk/run for the next 40 minutes, mostly walking but taking breaks to jog a block or two. I smiled the entire way.

I’m gonna ask my physical therapist if there is any reason I really shouldn’t run a bit but I think that as long as I’m careful and take time to strengthen and stretch they’ll be on board. I was never a very good or fast runner but I really loved it. I am so happy to imagine that it could someday be a real part of my life again!

Oh, and I had my 2 week post-op last Monday and all went well. Dr. S. was really happy with my progress and pleasantly surprised that I wasn’t using any sort of walking aid, either a cane or crutch. My scars are healing quickly and I’m not due for another follow-up until April. I got my operative report which did note that they’d had to repair my bursa when they removed the screws and that I’d had a lot of bursitis in my left hip, a fact that came as no surprise to me based on my previous levels of discomfort. I am meeting with PT before that so they can give me guidance on what I should focus on.

Onward and upward!

Sleepy Saturday

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It’s been 4 days since bilateral hardware removal and today I was finally allowed to remove my bandages and take a proper shower. I saw the new incisions on each hip for the first time and truthfully, they’re not as bad as I’d anticipated. At about 4″ long, they’re each approximately half the length of the incisions from the original surgeries. They are healing nicely (although they look a little gory with dried blood and steri-strips) – I decided not to post pictures of them until they look a little bit better (you’re welcome). I can’t yet tell if surgery fixed my remaining issues – it’s just too soon to tell. I probably won’t know for certain until the inflammation goes down which might take a while. That said, I am cautiously optimistic.

Earlier today I made the exact same mistake I’ve made after pretty much every surgery – I acted like I had not just had surgery and tried to do a couple things around the house. I paid for it with a serious bout of nausea and exhaustion. I know this was a “minor” surgery but it still involved somebody cutting into me and my body feels the need to remind me of that fact. In general I’m worn out most of the time and get so sleepy that I can doze off at the drop of a hat. I’m sure it’ll take me several weeks or even a month or two to really get back to feeling normal.

I’ve started to pull back on my pain meds since the pain has lightened a bit. I haven’t had leg cramps in the last day (a huge relief) and the itchiness has gone now that I’m off the Percs (a definite downside to opiate medication). That said, I wouldn’t be surprised if I have to kick them up for a period of time since recovery is all ups and downs.

I’m hoping to try some PT exercises at home once I feel up to it, starting with mild things like bridges, clamshells, squats and the like. My next appointment with my surgeon is January 13 when he will clip the ends of the dissolvable sutures and will likely discuss formal PT and steps moving forward. For now, I’m falling asleep. Goodnight and sweet dreams.

(Mostly) Hardware Free 2014

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Happy New Year! I hope everyone had a fantastic time celebrating the end of 2013/start of 2014.  I spent last evening at home, recovering from yesterday’s removal of 7 of the 8 screws that were installed during my PAO and Open surgeries. Here’s a (rather long) recap of how surgery went and how recovery has gone so far.

Before surgery...

Excited pre-op

Surgery was initially expected to take about an hour and a half; it ended up taking closer to two and a half hours. Anesthesia consisted of a spinal and sedation. Dr. S started by removing the 3 screws from the left side which had bursitis that he had to clean-up and then removed 4 of the 5 screws from my right side (1 of the screws was positioned too deep to be easily removed).

I woke up in the PACU in a lot of pain in my left side, a burning ache from my left hip down my left side into my knee and cramping my left calf, pain at about a 7 or 8/10. The pain in my right side was not nearly as bad, about 3/10.

...after surgery

Exhausted post-op

The nurse injected liquid Motrin into my IV (which basically had no effect) and then injected Dilauded which worked right away (thank goodness). Dr. S stopped by to check on me (I only vaguely remember that he was there, I was still drugged from surgery) and talked to my husband about how the procedure went. The nurses in pre-op and the PACU were very warm and helpful (another great experience at HSS).

I was in the PACU for 2-3 hours, had 1/2 a cheese sandwich and some ginger ale, and my first dose of Percocet. I got to the point where I felt ok enough (pain at about a 4/10) that I managed to dress myself and was released last evening.

The evening was uneventful and I faithfully took my Percocet every 4 hours, even through the night which was restless and insomnia filled. Unfortunately, this morning I made the mistake I tend to make the day after surgery – I felt so OK, pain wise, that I thought I could wait 5-6 hours to take my pain meds. Bad, bad idea. The pain in my left side, which had been at a steady 3 or 4 out of 10, spiked to 8/10, and I was suddenly in tears. Just then a nurse from HSS called to check-in with me (perfect timing) and reminded me that I MUST take my pain pills every 4 hours on the dot. So I’m on it, the pain’s down to about a 5 or 6/10, and we’ll see how the next few hours go.

Right hip

Screw removal -- Right hip (gauzed) (2)Here are some photos of the surgical coverings (and a peek at a few of my tattoos).  My left hip is on the left side, my right hip on the right.  I can’t take off the gauze or take a shower until Friday so I won’t know how long the incisions are until then. Bathing in the sink until then — Yippee!

My next appointment with Dr. S is Jan 13th when the stitches will be clipped and the steri-strips replaced.  For now and the next few weeks I plan to take my pills and take it very easy.

My Unscrew’d New Years

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It’s that time again – time for New Years Champaign and celebrations another hip surgery!  Heck, I would barely know it was the holidays were it not for my annual surgery (in case you’re counting, this is year 3).

The good news is that this one’s supposed to be WAY easier than the last two.  As of 12:30pm tomorrow, New Years Eve, I am having all of the screws in my hips removed.  The procedure, expected to take less than an hour, will be bilateral (on both hips) and will involve my fantastic surgeon removing 5 screws from my right hip and 3 from my left greater trochanter.  Two big incisions to be sure (they will be reopening the incisions that were previously made and healed), but hopefully not TOO much pain.  If all goes perfectly, I could be home in time to see the ball drop.  Otherwise, I’ll see it from my bed at HSS.  I honestly hate New Years Eve so spending the day in the hospital didn’t sound like such a bad option.

The screws have been rubbing the soft tissue and causing a lot of pain and inflammation, especially on my left side where the pain shoots into my knee and all the way down to my ankle.  On the right side, I can feel the heads of the screws through my skin — CREEPY! On a positive note, the screws are no longer needed.  Since they were initially installed (in December 2012 and May 2013), new bone has grown in the spaces that the screws were holding in place and now they are superfluous.  The idea is that once the screws are all removed and I get back to physical therapy, there should be no impediment to my getting better — like all the way, walk without pain or a limp, do things like a normal person, better.

Until tomorrow!

1 Year post-PAO

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1 year ago at this hour I was in the PACU (Hospital for Special Surgery’s post-surgical ICU), newly broken hip held together with screws, drugged to the nines and unable to move my right foot (because, as we later learned, the epidural was in a bit too deep). I was just at the beginning of this latest stage in my hip journey. I was hopeful that my right hip would be in pretty good shape by this past May and had not even started to realize how hard my recovery would be.

There’s no new news today but I felt that this is a day I needed to acknowledge, like a birthday for my sorta-new right hip. In less than 3 weeks the 5 screws will be gone – they will be removed along with the 3 screws in my left femur (the remnants of my May surgery). My right hip scar is healed to the point that it’s hard to see, in some places, where the incision was. That will all be reopened soon enough but for now, it seems like such a long time since I really even thought about it.

People ask me if my right hip feels better than before the surgery. The thing is I think it does but I don’t really know. Before the surgery I had pain when I would do certain strenuous activities. Now, I have some level of pain anytime I’m not sitting or lying flat on my back. I don’t do strenuous activities because the pain makes it impossible. I feel confident that once the screws are out and the soft tissue stops getting rubbed the wrong way I will be able to give a better ‘status report’. Like the one year ago version of me I am hopeful.

Before my surgery I had posted a very personal message to those of you who have followed my surgeries and recoveries. I promised to update my site and all of you, to push myself out of my shell and write even when I wanted to hide. And I asked you to stick by me so that I would not have to go through this alone. Please know how incredibly thankful I am for all of you.  It has been a rough year and I cannot thank you enough for sticking by me, and continuing to do so.  I have also been happy to learn that my site has been a resource for other ‘hipsters,’ with over 12,000 views from people in 65 countries.  I am certainly not alone.

As an aside, some holiday carolers we’re wandering down my Brooklyn street and for the first time this year, it felt a little bit like Christmas. Since I likely won’t post again until closer to the New Year and my next surgery, let me wish you all a lovely and joyful holiday season full of love, happiness, and a whole lot of hope.

I’m still here!

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It’s nearly 11 months post-PAO and nearly 6 months post SDD and I am still alive and kicking (although, technically, I still can’t kick, with either leg). I know I have been lax in providing updates but honestly, recovery is a SLOW game with small steps forward.  I have been in PT, off-and-on, since February, but recently my improvement, especially on my left side, is mostly stalled and in a holding pattern.  That said, I have a bit of news and some updates to report.  I also know that there are others who are going through similar surgeries and experiences that read my blog and I really want this to be a complete picture of what I have gone through (and continue to go through).

Right hip (PAO) first.  My right hip is doing pretty well with any remaining pain located in either my right greater trochanter or in my psoas at the front of my hip.  I’m hopeful that any remaining pain in these areas will get better with more time, keeping in mind that full recovery from a PAO is up to 2 years.  The only other problem I have with my right hip is that the screws along my iliac crest do give me some discomfort — not sure if they are unscrewing themselves (which is possible) or if the swelling around the incision has finally gone down.  I’ll get back to these screws in a bit.

Left hip (Surgical Dislocation).  Left hip is not doing nearly as well as the right.  I am finally off-crutch (for the most part) because my limp is gone (for the most part).  However, I still have pretty significant pain in my left greater trochanter and psoas.  The pain in the front of my hip seeps into the joint and sometimes I feel like the ball of the femur isn’t solidly in the joint which makes me wonder if I am subluxing my hip joint (click here – Hip Instability – for a bit of information on hip instability and subluxation).  The pain in the trochanter can get pretty severe to the point where I sometimes need to use my cane or crutch, both because of my limp and in an attempt to take the weight off my left hip.  The pain definitely gets worse 1) when it rains and 2) the more I walk.  Which leads me to…

I’m having another surgery!  Yes, that’s right, ANOTHER freaking surgery, and another holiday season sullied.  I am having the screws in my left hip (and possibly the screws in my right hip) removed in late December (exact date tbd).  Good news – it’s an out patient surgery, though I may be in the hospital overnight to ensure the pain is well managed.  Other good news — other people who have had their screws removed bounce back within a few weeks after the surgery and typically move quickly beyond the holding pattern of improvement to actually get better.

I am scheduled to meet with my surgeon on November 18th for my 6 month SDD follow-up and anticipate that my physical therapy benefits will be up around that time.  After my Dr. appointment I will know if any additional procedures (e.g., fluid drainage, scope) are required — I am hoping NO but we will see.

tumblr_mub3moYShU1qhvwbto1_500SO, aside from a new hair color (black and blue streaks), a new semester at law school (my second to last), and a new tattoo (amazing, huge, on my thigh, done by Seth Wood, and appearing at the bottom of the page [you can see the bottom of my PAO scar next to the bee above the flying bee]), that’s what’s new.  Oh, and Happy Halloween!

Time flys. Time drags.

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It’s been 37 weeks/8.5 months since my R-PAO and 16 weeks/3.5 months since my L-SDD. Holy crap has time flown! Scratch that – it’s been so freaking slow! See, that’s the thing — it genuinely feels like time has passed both super fast and incredibly slowly. It makes no sense to me either. Clock

I met with my surgeon, on July 24th (a few days after my last blog post). At that point my right hip was achy and my left still hurt a bunch — lots of pain around the trochanter, still a flare in the psoas. Also, my back had been acting up and my left knee was causing enough pain to wake me at night. I had to walk with a single crutch, my limp was pretty bad, and I couldn’t lay on my left (operated) side yet. I went to PT weekly, did my exercises at home daily.

Fast forward to today. My right hip is still a bit achy, my left doesn’t hurt as much. It’s almost as if the volume on all of the pains on my left side got turned down a bit so that it still hurts but the pains not as loud. My back is much better and following an MRI on my left knee that came up with nothing, my knee is doing a bit better. I still have to use a single crutch to walk but the limp is looking a lot better to the point that for a few steps first thing in the morning, I don’t have a limp (it comes back quickly but those first steps are stellar). I can FINALLY lay on my left side, if only for a minute or two. I still do PT, I still do my exercises.

At my appointment back on July 24th, we talked about next steps, what they might look like (surgery?  hopefully no), and how recovery takes a long time.  That’s the crux — I don’t feel like I prepared myself for HOW long it truly takes.  Before my surgeries I read every article and blog and site but each surgery took mere hours — HOURS — to complete. I totally failed to fully grasp that following the procedures, I would spend weeks, months, likely YEARS recovering.  Couple that with the fact that when you are in the middle of something, like a recovery — when you’re actually going through it and where it affects everything you do —  a single day can feel extra super long.  Add all those extra long days together and you have an extra super duper crazy long time.

At exactly the same time, it has been 8.5 months since my RPAO and it blows my mind how much time has passed!  It’s like being in a time warp —  a crappy, non-dancing, non-Frankenfurter time warp.

My next appointment with my surgeon is on September 10th.  Before then?  PT, hydrotherapy, work, start back at school, try to have a bit of fun and maybe watch Rocky Horror because until I pulled that clip, I totally forgot how much I loved that movie.  It’s gonna be better, it’s getting better, I am A-OK.