Category Archives: HSS

Joy

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

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!

(Mostly) Hardware Free 2014

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

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

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!

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!

10+ week status — Open Surgical Dislocation (SDD)

I started this blog with two purposes: 1) to inform the world of how I’m doing, and 2) as a record I can look back on to remind myself how I was doing at certain points in my recovery (really helpful when I’m coming up on a follow-up with my surgeon, as is the case this Wednesday).  This post serves the latter purpose (i.e., it’s probably gonna be boring and you might wanna skip reading it).  I warned you!

I am 10.5 weeks post-op on my left hip SDD (a little more than 7 months post-op RPAO).  I have had several sessions of PT (one/week) and one session of hydrotherapy (PT in the H2O).

PT Exercises — status:  

  • Most of my PT sessions are about determining my current level of ability to perform existing exercises and introducing new exercises into my routine.  The therapists also massage and stretch some of the tendons and muscles that are tight or sore so as to improve range of motion.
  • My limp has definitely improved since my first session, but it is still there and gets worse the more exercises I perform.
  • I continue to perform my PT exercises at home including PT Phase I post-op PT exercises (i.e., seated leg extensions, cow pose to child’s pose, core/glute tightening, and quad stretches) and SOME of Phase II post-op PT exercises (including bridging with red elastic band abduction, bent knee fall-out with red elastic band resistance, standing abduction on the affected side, core stability with hip extension + abduction, balance and proprioception, and upright bicycle).
  • I am unable to perform standing abduction on the unaffected side (where I have to stand on my left leg and extend my right), posterior gluteus medius strengthening (where I have to extend my left leg to the back/side at 45 degrees with a red band) or contralateral elastic band for stability (again, standing on the left [affected] side and extending the rights side with a colored band.
  • Hydrotherapy is great because, when you are in the water, your body doesn’t hurt as bad so you can do more than if you were doing therapy on land.  It’s also terrible because, since you don’t hurt as bad, you don’t realize that you are overexerting yourself until you get out of the water.  That’s what happened with me, and I will be avoiding further hydrotherapy sessions until I am stronger.

Non-PT activities — status:

  • I use one right forearm crutch (Millenial) whenever I walk to off-set the limp and because it’s painful otherwise.
  • To date, the most I have walked in the course of a day is approximately 15 blocks, and I was extremely sore/in pain and exhausted at the end of it.  In average, I walk no more than 2-3 blocks in a day.  I use Access-a-Ride almost exclusively for traveling in the city as my local subway station does not have an elevator and I have a terrible time going up and down stairs.
  • I AM able to ride a bike, which I do on occasion when it’s not a million degrees outside.
  • I am still unable to sleep on my operated side.
  • When sitting my left leg needs to be extended at least 75% of the time.  Otherwise my knee becomes progressively more painful.

Pain levels — status:

  • My pain seems to have increased in the last few weeks, from very little pain at 6 weeks post-op to some level of almost constant pain in my hip, back and knee.
  • I have constant pain in my left side of my left hip.  I would not say it is in the joint itself.  Rather, I would say that that it’s in the trochanter or in the muscles between the trochanter and my lower back (the gluteus muscles).  The pain is relatively mild (around a 2/3 out of 10)  most of the time but can spike to a 7/8 out of 10 depending on my level of activity.  I cannot abduct my left leg at all when lying down (i.e., no “clam shells” — a PT activity for abduction).
  • My Sacroiliac Joint (SI) on my left side has been hurting a lot since my hydrotherapy session.  Note that until recently, I have not had any significant pain in my back and SI joint since prior to my RPAO in December.
  • My left knee started hurting about 2-3 weeks ago, in the area behind and just below my patella.  I am guessing it has something to do with tight tendons / IT band but honestly I have no idea.  It looks swollen — I have tried ice and Voltaren anti-inflammatory ointment on it but without much luck.
  • I manage my pain through a combination of rest, elevation, ice, Tylenol and, on occasion and if needed, stronger pain medication (as was needed as few times in the last week).

Next post will be more interesting — promise!

Long Weekend

I love nights like tonight. When it’s a little drizzly out and seems darker than it should be, and you open the window so that a bit of cool air creeps in while you’re snuggled under the blanket with the cat and the dog and a book and tea. Today is one of those days where I really don’t mind my limited mobility; in fact, were I not immobilized I might feel a little guilty. As it is I feel happily calm.

I am 16 days post-op and had my two week follow-up with my surgeon this past Tuesday.

Two-week follow-ups are less about checking angles or taking x-rays and more about making sure your pain is under control and that you are doing OK. I had all of the Steri-Strips removed from the incision, had the incision cleaned, and had a few placed back on to make sure that the stitches hold permanently. I was happy to learn that I no longer had to wear my DVT compression socks 24/7 (i peeled them off 15 feet from the office door) and could send my CPM machine back as I am mobile enough not to need it anymore (it was picked up earlier today).

This recovery has been going extremely well, my pain managed by Tylenol, and my surgeon was pleasantly surprised at how well I was doing. I mentioned that when I stopped my narcotic medication and switched to OTC meds, I had some unpleasant withdrawal symptoms including extreme irritability, insomnia, and two days of crying for seemingly no reason (must remember for future reference to avoid this medication). I explained how the pain in my left side is more of a deep muscle ache that is always noticeable but not severe or excruciating. The pain on the right side, the side in which I had the PAO surgery in December, is actually where I noticed the more striking and alarming pains. We had previously discussed, before the second surgery, that this would likely be the case . The right side still has problems though the extent is not yet clear. My doctor noted there is always a chance, unfortunately, that once one problem is fixed, another may become unmasked. For example, it’s possible that once the dysplasia in my right side was fixed with the December PAO surgery, impingement may have been unmasked and that may be causing the pain I continue to have in the right side. Similarly, it is possible that, now that the impingement on my left side has been repaired with the SDD surgery, the dysplasia related to my acetabular retroversion may become more prominent.

That said, neither my surgeon nor I are of the opinion that we need to rush to make any decisions, one way or another, on the effectiveness of either of my surgeries to date. These decisions can wait several months, until I am well into my physical therapy and have a better idea of how I’m doing.

As you can imagine, I am hopeful that I am finished with surgeries and that physical therapy will help take me to the finish line in terms of recovery. My next follow-up appointment is scheduled for mid June, at which point my surgeon will take x-rays of my left leg and hip to determine if the trochanter osteotomy he performed is healed and whether I can stop using crutches.

I’m happy to be back working remotely from my home. I like the structure it provides, requiring me to get up at a particular hour and having tasks to complete. I also really enjoy what I do and so it was almost a relief to be able to get back to it. I’ve gone out to a couple meals and to my surprise had no trouble sitting on a booth or on an un-cushioned chair. This is dramatically different than the last surgery and a welcome change. I am hopeful that I’ll be able to get back to law school in the fall, though that will depend on my recovery, any further surgeries I may need, and making sure that I have a safe balance between my work/school/recovery and personal lives. I figure I’ll know more about my Master Plan in a few months.

In the meantime, I hope you all have a lovely long Memorial Day weekend, whether you are enjoying the outdoors or snuggled under a blanket next to a cool breeze

Flew the coop

I was released from the hospital on Saturday at 2pm and was home in Brooklyn by 3:15. I am allowed to put up to 30% of my body weight on my left leg and the balance on my right / crutches / walker. My stay at HSS was very successful and the pain seldom reached beyond a level 3 or 4 out of 10. However, even with the strong medications I was on, the pain did occasionally spike to an 8 or 9 out of 10.

My left hip and leg muscles feel very achy and sore, while at the incision site (which is approximately 9″ long and runs down the outside of my left thigh) I occasionally feel a stabbing, burning pain. The pain is also noticeable in my gluteus muscles, as spasms in my middle and lower back, and as a slow burn around the top of my knee. Not surprisingly, I continue to have some aches and spasms in my right (previously operated on) leg as it has become responsible for carrying the majority of my weight.

To minimize the pain and to keep my hip joint moving, I use my continuous passive motion (CPM) machine for 2 hour spurts, 4 times a day (I have no idea who the woman in this picture is but it gives you reference as to what a CPM looks like).

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Sometimes when I’m not looking, my cat Fawn Adelle uses it as a cat bed.

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While in the hospital and initially at home I was taking two pills of Hydrocodone and Tylenol every four hours plus Benadryl since the Hydrocodone made my tummy, back and arms very itchy. I also take aspirin (for blood thinning to prevent deep vein thrombosis), Protonx (which help prevents acid reflux as a result of all the medications), Valium (as needed, for muscle spasms), and a variety of other pills that I was taking prior to my surgery. Although many of the medications make me very sleepy I can’t seem to fall asleep and seem like a zombie a lot of the time. I get around 7-8 hours of sleep a night. Boris has been my constant recovery companion.

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I’m happy to report that pain is definitely not as bad as it was after the PAO. I spoke to my surgeon’s office today and told the PA as much. She confirmed that although the initial recovery pains following a PAO are much harder, the length of time and long-term pain associated with a SDD recovery is far more difficult. Fantastic!

One noticeable difference between this surgery and the last is that I have definitely felt more emotional. It may be the change in medication or the fact that this is my third surgery in a short time but I have definitely been more blue. Whatever the cause I am trying to maintain my positive attitude and believe that I may have (hopefully) turned a corner today.

I finally got it together and took a shower yesterday which was a welcome change since it had been 5 days since I’d been permitted to take a shower. Today I even went so far as to shower, put on blush and curl my hair – a look I call ‘recovery chic.’ For comparison, it took me weeks to get to this point following the PAO.

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Starting today I reduced my Hydrocodone/Tylenol to 1 pill every 6 hours as I try to eventually ween myself off the meds. So far so good but I would not be disappointed if I needed to up the dosage a bit if the pain became overwhelming. I seem to be a little less fuzzy-minded but that changes minute to minute.

In general, recovering from surgery in May is a VERY different experience from recovering in December when the weather is dark and gloomy. However, like after my first surgery, my mom and husband have been incredibly helpful and I can’t thank them enough for doing basically everything for me. My first follow-up with my surgeon is scheduled for May 21st. I am hoping my wheelchair is delivered soon so I can get outside and enjoy the beautiful spring day. I hope you are all doing the same.

Heading home mañana

Significant improvements! Since yesterday’s post I have been moved to HSS’s 10th floor, and moved again once on the 10th. The numbness in my left (operated) leg is totally gone and 90% gone from my right leg. I have gotten up and walked down the hall with a walker and then crutches – both times incredibly slowly. I am able to get myself out of bed without too much difficulty and transitioned to a regular solid food diet. Best of all? Baring any traumas I get to go home tomorrow!

Unfortunately not all my news is quite so rosy. My pain continues to be well managed; however the drugs are making it difficult for me to focus and I notice that I’m easily distracted and frustrated (it has seriously taken me about 7 hours to write this little post). My right leg has started to spasm from lack of use. Historically, at about 3 days post-op (relative to when I receive anesthesia) I normally feel pretty depressed. This surgery is no exception and today I’ve been feeling quite blue. You’d think that with everything my body has gone thru in the last few days I would be asleep all the time but instead I can barely sleep an hour at a time and am not sleeping nearly enough – only a few hours a night. Also, I have apparently developed an allergy to the adhesive in medical tape + the oxygen that they put up your nose when you have an epidural makes my nose crazy itchy. Fun!

Guy is renting a car to pick me up at HSS and I hope to be home by 2 or 3pm on Saturday. I took a photo of my wrapped incision (with a pen for size reference) but won’t get to see its full gruesome beauty until they rewrap it tomorrow morning. I’m guessing that its about 10″ long but soon i’ll know for sure. I’m gonna try to get some shuteye. Hasta mañana!

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