Category Archives: Hip Dysplasia

Surgeries and Surprises

First, Happy slightly belated St. Patrick’s Day! Hope you were out drinking green beer and eating corned beef and cabbage!

It’s been a little while since my last post and I have lots to report. For those who don’t want to / have time to read the full post, here are the bullet points:

1. One of the bones in my right pelvis that was broken during the PAO surgery (the pubis bone) did not grow back together. Dr has prescribed a bone stimulator / increase protein to make it grow. If it doesn’t work I may have to have ANOTHER hip surgery on my right side to bridge the gap.
2. We are a go for my Open SDD surgery on my Left Hip on May 8th (pre-op April 30th).
3. Sinus surgery is set for THIS week (Thursday, March 21st). Basically, Dr is creating a straight shot out of my sinuses / removing bone and tissue / fixing my deviated septum. Same day surgery, home Thursday evening, around a week of recovery.

THE LONG VERSION
I met my hip surgeon for my 3 month RPAO follow-up / 2 month pre- Left hip Open SDD appointment on March 15th. The appointment started with x-rays. I met with my Dr. and mentioned that although PT (physical therapy) was going well and even though I am able to walk unaided, I was concerned about a new sort of pinchy/burning feeling that I’ve been noticing in the front of my hip. It also sometimes feels like the tendon is rolling over the joint, almost like it’s catching.

During my hip evaluation, my Dr. had me sit at the end of the table and try to lift my leg up off the table (really hard to do) while he pushed down. It was excruciating and I squealed in pain, not a normal reaction at 12 weeks post surgery. The Dr. then pulled up my x-rays. The x-ray showed that one my the bones had not grown together, possibly at all. The two sections of bone appeared to be about a centimeter apart, not even touching. This is called nonunion (when the bone does not grow back together following the surgical break) or slow union. It is one of the complications that can result from PAO surgery, normally only in about 1% of cases. Oh, lucky me. Even when it does happen, is typically asymptomatic and therefore does not require further medical intervention. Unfortunately for me, it may be the reason that I’m having pain in the front of my hip and, it’s possible that the tendon is getting stuck in the break. Gruesome.

The Dr prescribed me a bone stimulator which is a machine I will have to wear every day at home and will hopefully stimulate the bone to regrow. His staff also recommended I increase my daily intake of protein and calcium as much as possible so unfortunately for the animals, my efforts toward vegetarianism are taking a break. Hopefully the bone stimulator + increase in protein works. If it doesn’t, and if I continue to have problems, I may have to have a further surgery on my right hip after my SDD surgery in May. I should know more after my next appointment. In any event, it doesn’t sound like it will prevent me from moving forward on my left hip surgery which is good.

My next appointment on April 30 is my pre-op for my Open SDD surgery scheduled for May 8. It’s so strange to think of going through all of this again when I feel like I’m not even through the first surgery but I have to just keep moving forward, partly because I don’t really have any other choice.

In other news, my sinus surgery is scheduled for this Thursday, March 21. It’s a same-day surgery so assuming that the surgery requires that I get there at 7am, I expect to be home by 3pm or 4pm. The doctor is performing a septoplasty, turbinectomy, balloon sinuplasty and I don’t even know what else. The goal is to create more space in my sinuses so that when I have allergy problems, my sinuses don’t get so inflamed that they completely block and get infected. I also started back to allergy shots, 4 shots 1-2x week.

This year is already wearing me out and it’s only March. It feels absurd to me that my hip problems have so taken over my life. I am really looking forward to getting though the next 9 months and getting back to my life (surgery free!). Until then, the saga continues.

(Mostly) Crutch Free + 12 week Status Update

It’s been 11.5 weeks since my PAO and I am crutch free (mostly)! I say mostly because I am not willing to put away the crutches quite yet, and will definitely have them with me for longer trips (and I will absolutely continue to use the motorized scooter when I shop at Target). But this weekend, when I went out to dinner with my husband and when I walked 23 (23!) blocks over Sunday afternoon I did it only with a cane. I admit, by the end of the walk both of my legs were aching something fierce but I surprised myself by going as far as I did. I don’t seem to have a limp (as far as I can tell) and my surgery’d side hurts less than my yet-to-be-surgery’d side so I am really pleased.

Recovery was tough for the last week or two – I was doing more because of PT and my hips were not happy about it, very sore and achy and my muscles always quivering. But something seemed to turn a corner this Thursday because when I went to PT it was as if my muscles all decided to start trying to work again and I felt stronger and more capable. My therapist even approved my not using crutches. I’m know that the rest of PT will not be a cake walk and that I have a ways to go to be ‘normal’ but it was nice to feel like I was improving.

For reference, here are some answers about the status of my recovery to date (as of March 9th — 12 weeks and 1 day post-op):

  • When did I feel significantly better?  My pain was well managed but I was exhausted for the first 2 months. It literally took until 11 weeks until I felt significantly better.
  • How long was I on pain meds?  Narcotics (oxy) – 11 days following surgery; non-narcotic but strong – thru Jan 10th (about 1 month following surgery); Tylenol/Aleve – consistently thru 2 months post surgery; still occasionally
  • When was I able to completely take care of myself? My mom and husband were willing to help a lot so I let them. It was until mid Jan (about 1month post surgery) that I started to really take care of myself completely. If I had needed to I could have taken care of myself completely at between 2-3 weeks.
  • How long was I on crutches/walker? Non weight bearing crutches or walker – thru 5 weeks; weight bearing crutches – thru 10 weeks.  I continue to use a cane.
  • When was I able to wear anything but sweatpants? 2-3 weeks
  • When was I pain free? Too early to answer – still have some pain and lots of soreness
  • When was I able to lay on the operated side? 4 weeks
  • When was I able to drive? Don’t drive (live in NYC)
  • How long before I had a day that I didn’t need to lay in bed most of the day? I started working from home at 3 weeks – that was when I stopped laying in my recliner as much but I continue to rest and sleep a lot more than I used to.

I passed the half-way point between my 2 hip surgeries on February 24th and I am 9.5 weeks out from the SDD surgery. The 24th was an emotionally difficult day because I realized that I am actually going to have to go through this (or something like this) again and although I have handled the physical components of recovery well, the emotional has been harder than anticipated. I am scheduled for my next follow-up with my surgeon on March 15th so we will have lots to discuss. I’m really curious to hear if he thinks that I will need another scope on my right side (please, I really hope not). Also, following my unsuccessful balloon surgery attempt, I am scheduled for full sinus surgery (fix the deviated septum, turbinectomy, balloon sinuplasty, who knows what else but ALL performed under general anesthesia) on March 21st. Good news is that recovery for that should just be the weekend, plenty of time for the May 8th SDD.

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6 week follow-up – NEWS!

So much to report! This is going to be fact / text heavy but I want to make sure I get thru all the details.

On Thursday, I met with Dr. Sink at HSS (full disclosure, I asked – he was cool using his last name on the blog) for my 6 week follow-up, although it had been exactly 7 weeks since my surgery. I took a cab to the appointment since I was not yet comfortable with the idea of taking the subway (and would have been exhausted since HSS is about the length of 7 avenue blocks from the subway).

When I first got there, I had 2 x-rays taken and was immediately whisked into an exam room. Dr. S’s nurse and PA came in to talk to me initially, to see how I was feeling and how recovery had been going. I was in a really good mood — in fact, I’ve been in a really good mood for most of my recovery (which likely has more to do with not being as hyper-stressed [from trying to juggle school / work / social life] than with recovering from an invasive operation). In any event, we had a good chat and they seemed pleased with how I was doing.

Dr. S. came in a few minutes later and we started talking about how my healing was going. I told him that I felt really good, that I was using the crutches when I went short distances and a wheelchair for long distances (walker when at home). He looked at the x-rays and confirmed that 1) the bone was filling in really nicely along all of the breaks, 2) that the head of my right femur is now sufficiently covered by my right acetabulum, and 3) that the angles (between the center of the head of the femur / hip) created the perfect 90% angle that he was looking for. He seemed really psyched about that and I was pleased to know that the surgery appears to have turned out really well. He also confirmed that I have 5 screws (I had only noted 4) and that I was ready to move onto physical therapy 1/2 x week x 8 weeks. More on that later.

We then started talking about my left hip, what type of surgery we would be looking at, especially since the surgery is scheduled for May 8th. As a reminder, although my right hip had dysplasia (which can only really be solved by a PAO), my left hip has acetabular retroversion, mild femoral retroversion, cam and pincer impingement, the neck of my femur (between the ball and trochanter) is too short, multiple labral tears, a hairline fracture of the acetabulum and what appears to be a hypertrophic (overdeveloped) labrum. We had always discussed an SDD for the left hip but at my last few appointments, Dr. S suggested that the left hip might need a reverse PAO so I was curious what he would say, having now reconfigured my right hip. After some discussion about the coverage of my femur (which looks good, side to side), he feels that an SDD is the best way to go. What this will mean is that the incision will be on the rear side of my left thigh, 8″-10″ long, and during the procedure Dr. S. will literally remove my femur from the socket, shave down the impingements on the femur and acetabulum, repair the labrum, break the trochanter and either move or remove a part of it, remove and reattach muscles, and I don’t know what else, but not necessarily in that order. As much of an invasive procedure the PAO was, this actually sounds worse. But strangely, I am totally not concerned.

The plan is that I will meet him in 6 weeks, after my PT, to see how I’m doing. Things may change and the surgical plan is fluid but at this point, an SDD is the plan. Dr. S was great, explaining all of the reasonings for doing this procedure and showing me the x-rays and MRI scans. I was at his office for about and hour and fifteen minutes and he was in the room talking to me and my husband for the majority of the time.

After my appointment I met with a physical therapist who gave me some initial exercises to perform at home. I was shocked to be told I could be full weight bearing on my crutches (and am permitted to use only 1 crutch or a cane when at home). Some of my exercises require that I stand on only one leg – the operated leg – and I was really surprised that I was able to do all of it with no pain (although my muscles are way weak). I’ll start PT in Brooklyn next week.

Finally and un-hip related, I went and had a CT scan of my sinuses / maxillofacial bones to see if there is any reason I am permanently congested / have terrible allergies in spite of allergy shots + major pills. My ENT thinks it might have more to do with the fact that I have a very small nose and that the sinuses are so small that there’s simply no space to move around. There has been suggestion of sinus surgery to see if there is some space to be opened up. I seriously need a break from surgery, not more! We’ll see what shows up those reports.

I feel like you seriously deserve a prize if you got all the way to this point in the post. I hope my honest to goodness gratitude is prize enough, but seriously, thanks so much for reading. Onward and upward (or, actually, downward since I need to do my PT exercises before bed). G’night!

Cabin Fever!

Yep, totally starting to lose my mind. Cabin fever is taking over. I’m allowed to start putting a little weight on my leg starting tomorrow (at the 5 week mark) but it my next follow-up is not for almost 3 more weeks. So until then, I am pretty much a homebody.
Cabin Fever

I did a search for “cabin fever” photographs but kept ending up with a sorta creepy movie poster but then, after searching for “cabin thermometer” I found this rare gem.  Log cabin syrup…digital thermometer.  It is just about as absurd as staying inside, almost constantly, for 5 weeks to date.

Over lunch I made a video of my mobility skills.  Yep, almost 60 seconds of me showing off my walker and how I can stand on 1 foot and shimmey side to side.  It seemed lika a really good idea at the time but, honestly, who is the target audience for this video?  I have seriously got to get out of the house from time to time!

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Access-an-Adventure!

The six weeks following surgery when you are prohibited from putting basically any weight on your operated leg presents a special set of circumstances. On the one hand, you are tired and recovering and need a lot of sleep and are happy to hang out at home. On the other hand, you have basically been in the house for six weeks straight (in my case, almost four weeks to date) and you are starting to go stir crazy. As a result, I decided to venture beyond my apartment door a few times in the last couple of days to see, what the kids these days call, the outside.

Yesterday I went for my disability evaluation with the MTA Access-a-Ride paratransit program (http://www.mta.info/nyct/paratran/guide.htm). Basically, its an on-demand alternative to standard public transportation which, if I am deemed eligible, I could use to get to my appointments and even to work since wheelchair accessible public transit is not really an option where I live.

The evaluation required that I use an Access-a-Ride bus to visit the evaluation center.20130108-184503.jpg20130108-184531.jpg

In the wheelchair and used the lift to get into the bus.  Once onboard, I was SHOCKED (see shocked face) by how many cables and belts they used to make sure I did not roll around.

20130108-184511.jpgMy friend Dave helped push me around in the wheelchair.  I am really bad with the wheelchair, like bad enough that the nice lady at the evaluation center suggested I take lessons.  I get stuck in corners, a lot.  I always think of that scene in Austin Powers where he tries to do a three point turn and gets stuck in the hallway.  At least I can laugh — otherwise it would be tragic.

I’ll hear within 21 days whether I’m eligible for service. Fingers crossed!

My husband and I realized that it had been a long time since we’d taken our dog to the park to run around so on Saturday we bundled up like crazy and Guy wheeled all the way to Fort Greene Park so that Boris could play with his buddies.

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After all of that activity, it was nice to have a visit from my husband’s Aunt Margaret and cousin Elaine.

20130108-184632.jpgThey were so kind and brought pastries, bagels and a cake.  We relaxed for a while — it has been so nice to have visitors.  Since my energy is still FAR lower than it used to be and since my mobility is basically non-existent, I have appreciated that people have been willing to stop by.

 

Next big adventure?  I am weening myself off of Tramadol and onto only Tylenol and Aleve.  Oh, my life is full…

Recovery Lacks Pizzaz

It has been exactly one month since my PAO. I continue to gain strength in my operated leg.  Unfortunately, my not-yet-operated leg is deteriorating under the stress of bearing all of my weight.  I’m more tired than I thought I would be at this point and sleep around 10 hours a night. I seldom have any significant pain in my right hip joint. However, the muscles in my right thigh and around my right knee often ache, either from the surgery, the atrophy, or the fact that they are all stretched out because of the placement of the bone. I wake up every night because of the ache. My house is filled with equipment — multiple sets of crutches, a wheelchair, a walker, the list goes on. It’s more than three weeks until my next follow-up, more than three weeks until any of this changes. I live in pajamas, I have noticeable roots and I really need a haircut.

Now don’t get me wrong — I knew what I had signed up for. Recovery is a slow process and I need to let my body heal. But like so many things, knowing how things will be is a lot different than experiencing it. And now I know, and it has become ABUNDANTLY clear, that recovering from surgery is really freaking hard for me.

This may sound insane but surgery was exciting!  Pre-op appointments, learning where the cuts would be made, talking to the surgeon, blood draws, getting my bag packed, waking up early to make it to the hospital on time, checking in, getting myIV, being wheeled into the operating room?!? These adventures were WAY cool! And then I woke up and there are people everywhere and alarms going off and I realized I was stuck to 4 cables and, oh by the way, the surgery just happenend and possible complications and then there’s the days in the hospital and visitors and therapy and going home and being on drugs and follow-up appointments.  Novel! Excitement!!

Then, slowly, the excitement faded and there’s not much new and novel going on.  Life is getting back to normal, although slower and less shiny than before the surgery because, well, I’m recovering.  I’m back to work (from home, for which I am really thankful thankful since it permits me to have some interaction with the outside world, plus, it exercises my brain). I leave the apartment a few times a week with my husband but doing something as simple as going to dinner wears me out. I watch tv or draw. I am TOTALLY ready for my tax appointment. And I’m starting to research what my next surgery will be like, because even if it’s another PAO, it will be new and novel and a little bit exciting.

I know who I am, that I thrive when I am busy, that the busier I am the more I can get done and the happier I feel.  I grasp on to exciting new things, always looking for something I can do next.  Recovery has forced me to slow down, a lot, to stay in the moment and to let my body heal. There is no glitz, no glitter or sequins. Nothing new to target my sites on, nothing special, just more of the same but less… It is me, slowly getting better, without the shine or sparkle, the new or the novel. In this way, for me, recovery is way harder than the surgery was.

Steri-Strip Free Me

Life is moving along quite well over the last few days and my recovery progresses.

On Saturday night, Guy and I went out to dinner for the first time since surgery. The restaurant, Aita, is really good and, lucky for us, located about 1/3 block from our apartment. Based on how long it took me to get there though, you might have assumed it was quite a distance away. Crutching is exhausting and slow, whether or not I use my snazzy Millenial crutches.

Dinner was tasty, although sitting was sorta rough. The whole structure of my pelvis is a little different and the muscles in my right side have atrophied a bit due to lack of use. As a result, sitting on seats that have insufficient padding causes soreness and general discomfort. By the end of our hour long dinner I was looking forward to my cushy recliner.

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Sunday we headed out for another wheelchair adventure and though I thought that the sidewalks in my neighborhood were already a wheelchair nightmare, ice managed to make it that much more unpleasant. Aside from my transport frustration, it was ice cold waiting outside for our sandwiches but Boris helped to make sure I was toasty warm (and I returned the favor by cuddling him under my coat and hood).

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New Years found Guy and I performing our annual tradition of scrambling to make our year-end charitable contributions. What once started as an error in timing has turned into an actual tradition. As you can tell, we would rather hide in our apartment than venture out on New Years (and my limited mobility would have made it impossible either way). I had a few visitors on New Years day which was LOVELY. I absolutely enjoy the company and appreciate their willingness to come over to the house.

I’m also back to work, starting today. I’m working from home but I anticipate that it will go pretty well. I have a good set-up at home and am able to focus without any problems. The key is to take enough breaks throughout the day so that my hip doesnt’ get too sore. I also started to teach myself a tiny bit of HTML, to hopefully make the site a bit snazzier (for example, the photos have colored frames and some of the words are colored). Like my recovery, my learning curve will undoubtedly be slow.

Heads Up – Scar Photo Ahead

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Finally, I am very pleased to report that the steri-strips on my scar have all gone away and I can now see it in its full gory glory. It’s actually not that bad looking and at 8″ is on the shorter side of what I had anticipated. I am sure it will continue to fade over time but since it has been less than 3 weeks since my surgery (3 weeks as of January 3rd) I am really totally OK.

Oh, and Happy Belated New Year!!

Rockin’ the Follow-up

I just want to start by saying that I had very good last couple of days.

On Wednesday afternoon, my husband Guy came home from visiting his family in Toronto over Christmas. It was really great to see him as he’d been for six days. It also meant my mom was going to be leaving the following day and that Guy would need to take over all of the responsibilities of caring for me that my mother had been dealing with since I’d come home from the hospital. As one might imagine, my mom had done a lot to help because of my limited mobility but I was sure Guy was up for the task.

On Thursday, my mom packed her bags, put on her babushka, and headed for the airport and home.

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We realized there were a couple things needed around the house and decided to take a track out to Target. At somewhere around 15 blocks from our house, the trip took quite a while and was the farthest that I have been out of the house since my surgery. My hip was quite sore because of all the bumps in the sidewalk and I iced for a while once I got home. Although it was windy and cold, it was sunny outside outside and Guy and I had lots of laughs.

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Today was my two-week follow-up from my surgery so we rented a car and made our way to HSS for my 10 AM appointment. At the appointment, the PA removed my stitches and all of the icky Steri-Strips. My incision is mostly healed though they put a few more strips on to make sure that it is set. Here I am, hanging out on the exam table.

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My surgeon, Dr. S., came in and reviewed my x-rays with me and talked about what would happen over the next month as well as what to expect at my six-week follow-up. He felt things were going really well so far but said he would have a better idea of where things stood once they do x-rays late in January. I genuinely cannot say enough wonderful things about my surgeon in terms of his expertise and his demeanor, both at the hospital and at every appointment i’ve had with him. He is so professional yet incredibly kind and I feel very lucky.

We stopped at Whole Foods on the way home from the appointment. I’m surprised how tired I was, having been out only for a couple hours — I’m probably heading to bed early tonight. Guy’s been really amazing in helping me out and cooking my food and taking care of the animals and just about everything. I do wonder though if Fawn (our kitty) may be taking advantage of his kindness…

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In any event, it’s been a really nice couple of days. I have mostly minor aches which is far better than I expected. We may go to out to dinner tomorrow and see a movie on Sunday and I’m actually looking forward to getting back to work (from home) next week. With all the TV I’ve watched its a surprise my mind has not turned to mush! Boris doesn’t seem to mind either way.

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Merry Vegan Christmas

It was a pretty mellow Christmas here in Brooklyn. My mom made a really fantastic vegan dinner complete with mashed potatoes, cranberry sauce, vegan gravy, brussels sprouts and a surprisingly tasty Field Roast Hazelnut Cranberry roll.

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Lots of protein (extremely important for healing) and lots of grapes and pears for dessert. Here is a photo of my mom joyfully displaying the feast (note the cotton candy pink tree in the background) as well as a photo of my plate (and elevated toes and walker as a backdrop).

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We took another trip in the wheelchair and I am really shocked by how un-wheelchair friendly my building and the local streets are. I am going to write some strongly worded letters, that’s for sure. Aside from the obstacles I am starting to get a tiny bit better with the chair but it is physically exhausting!

Only other bit of news is that I lowered my med dosages again to 3x/day (from 4x/day) and am off all narcotics. I have my first follow-up with my surgeon on the 28th. This first appointment is really just so he can see how I’m doing and how my scar is healing. I won’t have an X-ray of the bone until my 6-week check-up, sometime in late January. That will be a defining appointment where my surgeon will tell me whether my pelvis has grown back together or if there are any complications.

And with that, Merry Christmas and on to Boxing Day!

Christmas Eve Adventure

I left the apartment building today for the first time since I came home from hospital on the 17th. Since I’m still sort of, kind of, pretty weak and easily worn out, we decided to take the wheelchair for a spin instead of using my walker or either set of crutches. I’ve been scaling back my pain meds and I’m taking them down even more tomorrow but there’s no way I have enough stamina to get to the sidewalk much less 10 blocks round-trip. However, I’ve been sleeping a lot, about 12 hours a night, and taking a spin in the chair sounded like a lot of fun.

I thought I might be able to wheel myself but it became immediately apparent that I would need substantial amount of help from my mom to get around. Here’s a photo of us having just left the apartment building and in the courtyard.

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Our trek took us down to a local bakery called Choice. A few things to know when first using a wheelchair: 1) you’re going to need help; 2) it is practically impossible to get over any sort of crack, no matter how small it is, without someone pushing you [as an aside, I love that my phone tried to AutoCorrect “of crack” to “Crackville”]; 3) figure out how to configure the settings in your wheelchair before you leave the house; and 4) have a positive attitude because it’s going to be absurdly ridiculous the first time you try.

In any event it was really nice to get out of the house and to feel a little less confined.

We’re hoping to take another jaunt outside sometime tomorrow, even if it’s just to go around the neighborhood and look at the decorations. This is definitely going to be one of the least traditional Christmases I’ve ever had but the house is warm and lit with Christmas lights and I know that I’ll enjoy hanging out with my mom and watching endless episodes of NCIS.

Wishing everyone the merriest of Christmases!!