I'm all screwed up

Three appointments this week: CT scan, consultation with the radiation oncologist, and an appointment with Dr. Mayo.

The CT scan was so Dr. Mayo could see how extensive the ectopic bone formation is. The consultation with the radiation oncologist was to prepare me for getting zapped around the time of the surgery to prevent new bone growth. And the appointment with Dr. Mayo was for him to analyze the CT scan to decide how he wants to go about harvesting all the extra bone. ("Harvesting" is an appropriate word considering I'm what they call a "bone farmer.")

I also brought home some pictures. First is an x-ray (taken probably in January) that shows some of the ectopic bone. All nine screws and five of the seven suture pins are visible. If you mouse over the image you'll see the ectopic bone highlighted in red, the small suture pins in green, and the screws that Dr. Mayo is going to remove in blue.

The other picture is a slice from the CT scan which shows a chunk of bone blocking the front of my hip. Mouse over to see the ectopic bone shaded red.

There are more images, but they're harder to read. The CT scan shows the extent of the ectopic bone much better than x-rays, and it turns out it's more extensive than was evident from the x-rays. It's going to take some doing to get at all the bone. Dr. Mayo is hopeful he can get at it through the front PAO incision, but it's possible he might need to go back in through the SDH incision (including slicing the trochanter again, etc.) or even a posterior incision, and possibly open the hip capsule.

So instead of this being a shorter surgery scheduled in the afternoon to fill out the day's surgery docket, this will have to be the main surgery for the day.

I'll probably be in the hospital three or four days, which seems a breeze after almost two weeks last time. Although I had a perfect epidural last time, I'm going to forgo it this time in order to get back on my feet and moving quicker. Epidurals cause the blood vessels in the legs to open up, with the effect that blood washes down and pools in the legs, which made me pass out when sitting up. The sooner I'm up and moving, the better to help the swelling go down and to avoid another ileus.

Speaking of ileus, Dr. Mayo said that mine was the first true ileus he's seen in a decade. He thinks it was likely caused by having an epidural for so long (I think it was eight days, starting with the SDH and continuing to three days after the PAO).

Next up is another CT scan April 19th for the radiology oncologist to use to craft his radiation plan, followed by surgery on the 26th. For four weeks or so I'll be back on the no-straight-leg-lifting restriction, and then I can start physical therapy for real. I can't wait to get back on my bike! And Krista's probably ready for me to start driving again.

My dad's praying for a bone-eating enzyme to clean things up so I don't need radiation or surgery. That'd be nice!

Dermatitis gone, next steps toward surgery

Dr. Mayo sent me to a dermatologist to check on my dermatitis just in case. He prescribed the same treatment as Dr. Mayo--topical steroid cream a couple of times a day. I continued to do that and the dermatitis has finally cleared up.

Last week I had a follow-up appointment with Dr. Mayo. He's satisfied that my skin has cleared up enough to take the next step toward getting the ectopic bone out. He checked my range of motion: it's still around 50˚ flexion, 5-10˚ internal rotation. He doesn't see a point in continuing to see a physical therapist at this point until he cleans that ectopic bone out.

The next step is another CT scan to map out the ectopic bone, a month from now. I'll also have a consultation with the radiation therapy folks regarding the single, low-dose of radiation they'll give me at my next surgery. Then I meet with Dr. Mayo to see what the CT shows. Thankfully, all those appointments are scheduled for the same day.

Then a month or so after that--likely sometime in April--Dr. Mayo will go back in and remove the ectopic bone and most of the screws. I have nine screws in my right hip, and seven suture anchors. The anchors stay, but I think he can remove as many as five screws through the PAO incision; two will be replaced as he'll need them to secure a chunk of bone that he needs to remove and replace again. If he needs to reopen the SDH incision to get all the ectopic bone then he'll remove the two screws in my trochanter. So best case I end up with two screws remaining.

Keri located some more x-rays (intra-op from the PAO), but we have yet to find the digital photos for the SDH. Evidently the machine that handles those doesn't talk to Multicare's network, so a radiology person has to upload them manually. She's doing her best to track them down. I'm very curious to see them.

My hip feels pretty good, considering. The joint doesn't hurt, just the tight muscles, and of course my range of motion continues to be limited. I still can't drive comfortably. But some things that hurt before surgery don't hurt now, and my hip no longer aches when I lie in bed at night. It really is amazing to think that the body can sustain such trauma and heal so well. Of course it helps that the trauma was intentional and therapeutic.

I can't say enough good about Dr. Mayo. I'm very grateful to have such a capable, conscientious hip virtuoso working on my hip.

Four-month check-up

Right after we got back from Colorado I went in for my four-month appointment with Dr. Mayo--a bit early to check up on the cellulitis. By chance we got to see Terri again, and she seemed to be recovering swimmingly, as usual. She ought to be the PAO poster child.

After the usual x-rays Dr. Mayo checked me out. He says I have about 40˚ of hip flexion (instead of a normal 100-110˚) and still almost no internal rotation. The x-rays don't show the ectopic bone to have spread much more than before, but it doesn't show up that well with this kind of x-ray. A CT scan will be necessary to determine its extent.

But he said no CT scan, bone-cell zapping, or surgery until my skin clears up, which it now mostly has.

This time I got a copy of the SDH x-rays, of which one is posted here for your viewing pleasure. This x-ray was taken at the end of the SDH surgery, before the PAO. You can see the two long screws he used to hold the slab of my trochanter in place, and seven small dark spots around my joint marking the suture anchors he used to tie my labrum back into place. In the course of repairing my labrum he had to trim back a few millimeters of my acetabulum, temporarily increasing my degree of dysplasia.

They didn't have the digital photos from the SDH surgery at hand, so I wasn't able to get a copy of those. Hopefully at my next appointment, as well as x-rays post-PAO showing all sixteen pieces of metal.

Meanwhile all the travel and stairs I climbed in Colorado have helped strength my leg alot. I'm limping much less, and I can almost entirely hide the limp by cheating with my toes to raise my leg up a bit. I still don't fit comfortably in the front seat of the van, so I'm still keeping the kids in the back. After reading about the PT other PAO patients are getting, I'm going to try a more rigorous physical therapist.

This year for Christmas I got...cellulitis!

For a couple of months I've had a small patch of scaly skin on my hip between the two incisions. Seeing that it wasn't going away and knowing that another surgery is coming up I decided it was time to do something about it. Hoping it was just dry skin, I gently picked at one spot--just enough to draw a tiny drop of blood--but it wasn't peeling off like dry skin, so I left it.
The next day I went to my primary care doctor to get his opinion. He diagnosed it as dermatitus and he prescribed a topical steroid cream to apply twice a day, to get my immune system to stop overreacting.

The following day we set off on a Christmas trip to Colorado Springs. All my side of the family was meeting up at my sister and brother-in-law's, the first time in four years we've all been together. That morning I started to get congested, and by the time we got off the plane in Denver I had a full-blown sinus/altitude headache.

When we finally arrived at my sister's I looked at my hip--it was bright red halfway down my leg and halfway around my backside, hot and much more sensitive to touch than normal. I assumed it was due to all the activity of the day and figured I'd give it some time. Besides, it was the sinus headache that was making me the most miserable.

Two days later my sinus headache was diminishing but my hip was not improving, so we found a doctor nearby. The doctor and his nurse were both very interested to see me, saying mine was "the most interesting case of the day." The doctor looked at my skin and said very seriously, "I don't want to alarm you, but this could be very serious," diagnosing it as cellulitis, a skin infection. He proceeded to lay out the various options, from just oral antibiotics at best to IV antibiotics in a hospital to surgical intervention if infection collects around the hardware. But first he wanted to give me a big shot of Rocephin to see if the infection would respond to antibiotics. And he instructed me not to use the steroid cream (which I hadn't used yet anyway) on my dermatitus, as the steroids would inhibit the fight against the infection.

So after a warning about it hurting like an injection of peanut butter they jabbed two syringes of Rocephin into my backside (the good side), took some blood, and sent me home with an appointment for the next day.

The Rocephin worked--the skin seemed less hot to touch and the redness seemed to decrease somewhat. The doctor thought the antibiotics were working so he prescribed a combo oral antibiotic for 10 days. My blood work showed a CRP of 145 (with an annotation saying that a value greater than 3.0 was an indication of a future cardiac event), and my sed rate was 40.

Thankfully nothing more invasive was required. I did not want anyone except Dr. Mayo to cut on my hip, so I traded email with Sarah, his PA. She was the first to diagnose call it cellulitis, from a picture I emailed her. She was a superb help throughout the whole ordeal.

(Make a too-long story less long: leave out half a dozen visits to my surgeon, primary care doctor, an urgent care doctor, and a dermatologist...)

Now, after 20 days of Augmentin and about two weeks of using a steroid cream, the redness is almost entirely gone, and the dermatitus is almost entirely gone, leaving behind somewhat darkened pigment.

My surgeon won't operate until my skin's "pristine," which it will hopefully be by my next appointment in a couple of weeks.

Physical therapy

(Yes, I've been delinquent in posting updates. Terri's excellent posts on her PT reminded me that I needed to post about it too.)

Since I've been given the go-ahead to bear full weight, I've been doing physical therapy to loosen and strengthen my hip muscles. For the first few weeks I went into the PT office twice a week, but now I'm just doing the exercises he gave me at home.

At first it was all I could do to bear enough weight on the operated side to quickly drag my good leg forward a little bit in time to take my weight before the other leg gave out. And was my hip ever tight! I tried to be super careful not to violate any of Dr Mayo's straight-leg lifting and abduction limitations, since it would be a Bad Thing™to tear one of those muscles free. That, together with the ectopic bone mass in front of my hip socket made for a very tight joint, with virtually no internal or external rotation. But I could get around reasonably well with one crutch.

So I began PT. My physical therapist gave me several exercises to do: abduction (a sort of standing one-legged snow angel), extension (holding the leg extended backwards), and rotation (while lying flat wearing an ankle weight with the knee bent 90˚, lower the foot to either side).

He recommends holding the muscle in the stretched position for a minute or so because after about 45 seconds or so the stretched muscle "melts" and begins to relax, thus helping the muscle to stretch.

After a couple of visits he gave me a length of Theraband (a piece of colored surgical tubing) to add resistance for building up strength. I tie a loop in one end, stick it around my ankle, and anchor the other end by closing the other knotted end in a door. Then I do three sets of 10 reps of abduction, adduction, and extension exercises.

For a while a muscle deep on the inside of my leg felt very tight, so I worked on isolating that muscle and stretching it frequently. I think it's stretched out (as much as its neighbors anyway) since I'm not able to "find" it anymore.

Sometimes it feels like one of the muscles that attaches to the outside of my leg bone (to the trochanter) is more of an inflexible strap rather than a pliable muscle. It's a weird sensation. I'm not sure if it needs stretching, or whether that's a side effect of the ectopic bone tissue, or what.

After a week or so of PT I was able to waddle around with a severe limp when not using my crutch. My operated side would dip down so much when I shifted my weight to that side that I wondered if my leg were now shorter than before, but my physical therapist said it's all due to muscle weakness. (Besides, physiologically it was impossible that the surgeries I had would have that effect.) I was surprised to learn how much our muscles support us; before I assumed that muscles just move our bones, but evidently they do a lot more than that.

Now I walk with a mild limp with no crutches. What seems to have helped the most (but it could just be coincidence) is climbing stairs the two weeks we spent at my sister and brother-in-law's house over Christmas. At first it was almost impossible to step up using my operated leg, but by the end of the two weeks I was able to walk up normally without using the handrails, except for the wobbling and grunting. It feels strangely good to go uphill now, healthy, as if the exertion is getting everything all properly tightened up and aligned. I need to make sure I'm not violating Dr Mayo's limitations; I hope not because it feels good.

The rotation stretch seems to have helped a lot, and is the stretch that's the most uncomfortable.

My major limitation is still hip flexion (i.e. bending the hip into a sitting position). The ectopic bone tissue in front of my joint severely restricts how far it will bend. Every few weeks I try to sit in the front seat of our van but it just won't bend enough, which means I sit in the middle row with my daughter Eden (thankfully I don't need a car seat). I can sit in the driver's seat for a few minutes, but it's such a cramped position I can't easily move my foot from the accelerator to the brake pedal, requiring me to use my left foot for the brake. Also after a few minutes it becomes very uncomfortable. So until we can hack out that ectopic bone, I'm just a passenger.

More on that in a bit.

Speaking of limping...

My brother Justin reminded me of this Monty Python skit. Sadly I'm not yet capable of qualifying for one of these government grants.

Week 8: full weight bearing, a speed bump

[Warning: long post]

Much has happened since my last post! Tuesday by chance we got to meet Terri, another of Dr. Mayo's PAO patients who has been super helpful. She was in for her pre-op appointment before having a PAO on her other hip--four months after a PAO on her other hip! She had the ideal recovery from her first PAO, the best recovery story I've read. She's recovering from PAO #2 as I write this, and so far it sounds like it's going as well as #1.

But I'm getting ahead of myself. An update on the last three weeks: relatively uneventful. My hip has felt solid the last few weeks, like the bone has fused enough for it not to flex when I move this way or that. I can roll onto my non-operated side in bed and lie on it for some time without too much discomfort. I can do just about everything myself, including getting in and out of the shower, getting all my clothes on (except for my right sock if it's tight). My right gluteus maximus is on vacation--it's just flat. My incisions have healed well; to the right is a picture from about a week ago. The pressure sores on my heels are basically healed.

Tuesday Krista drove me in for my eight-week follow-up appointment--eight weeks from my SDH, seven weeks from my PAO. It was good to see everyone in the office again.

First they sent me off to get a bunch of x-rays next door. One x-ray required me to spread my legs a bit and turn my toes inward, to rotate my femur inward as much as possible, but I wasn't able to rotate it at all. I was hoping that was just due to muscle atrophy, since I've been very careful to observe Dr. Mayo's restrictions.

Then back to the office. Sara came in with the x-rays and slapped them up on the light box for us to look at. All those bone cuts have healed well. There remains a little gap where the top cut above the acetabulum was made but it will close up. The trochanter cut for the SDH seems to have healed perfectly. Nine screws of varying lengths and seven suture anchors are visible on the x-ray. (I'd put up pictures but for some inexplicable reason the IT department didn't allow an orthopedic surgeon's office to run DICOM software which would allow them to view the x-rays!)

Dr. Mayo also patiently answered a bunch of questions about the repairs he made. If I understand correctly, the labrum was torn pretty much all along the front of the acetabulum, which is why seven suture anchors were required to sew it back. He's confident that it has/will reattach itself to the acetabulum. I'm guessing this was caused by the thickened neck of the femur impinging on the retroverted acetabulum. He also trimmed down the neck of the femur to minimize impingement (see the illustration at the beginning of this post).

There was also an apparent lesion near the top of the femoral head. One doctor diagnosed it as osteochondritis dissecans. It looked like it might be a little divot. But what Dr. Mayo found was a small bump on the femoral head that also scored the surface of the acetabulum. He performed an OATS procedure, removing a 10 mm plug of bone and cartilage where the bump was, and transplanting a plug of bone and cartilage from the edge of the femoral head, where the cartilage is less crucial. The plug is press-fitted and the bone should fuse with the surrounding bone. That should stop the damage to the cartilage in the acetabulum.

Dr. Mayo expects my hip should last at least 10 years, maybe more, but he thinks I'll probably need a hip replacement someday. I would be very grateful for 10 more years; it would definitely be worth it.

But the x-ray showed some bad news too: ectopic bone has formed in front of my hip socket, where I was opened up, enough to severely limit my range of motion--Dr. Mayo estimates I have a range of motion of about 20˚ before the ectopic bone starts impeding movement. As I understand it the bone is not what we normally think of--like a solid chunk--but is rather bone cells interwoven with the muscles. Evidently when these cells are traumatized by something like surgery they can differentiate either into scar tissue or fibroblasts, or they can differentiate into bone.

The treatment is another two or three hour surgery. The approach would be the same as for the PAO, and would require detaching a couple of muscles again. Dr. Mayo would hack out (he prefers the term "morselize," borrowed from spinal docs) the ectopic bone from the surrounding tissues. Recovery would be much easier, since I would still be able to bear full weight, but I would again be restricted from lifting my leg straight up while those muscles re-anchor. While he's in there, Dr. Mayo would remove most of the screws. By my count four would stay: two to reattach one of the muscles he detaches by chiseling off a chunk of bone (because bone-to-bone heals better than muscle-to-bone); and the two in the trochanter, since those would not be accessible through the PAO incision.

Shortly before surgery I'd get a single dose of targeted radiation to the area, to preemptively inhibit the cells that would want to turn to bone after this surgery. Evidently I'd need another CT scan before then to help the radiology/oncology guys do their targeting.

Surgery would happen sometime after the four month mark. The bone needs that much time to mature in order to be able to differentiate it from the surrounding tissues. In the meantime, I'll stay busy with PT, limited by my range of motion. Dr. Mayo said there's no point in trying to force it; I'd just make it "angry."

Before these surgeries Dr. Mayo told me that the likelihood of this happening was increased because we were doing two surgeries close together, so it wasn't a total surprise. Had we known how everything was going to turn out we might have done the two surgeries six months apart, but then I would have had two long recoveries rather than one.

But all this ectopic bone is just a speed bump (no pun intended). The important part is that the repair appears to have been successful.

So now I'm trying out my new hip. I'm limping around the house with one crutch reasonably well, better the more weight I put on the crutch. Without the crutch all I can do is lurch around, almost hopping on my good leg. I have PT orders so I'll need to find a physical therapist and get busy.

I'm very grateful to God for how he's working in all this. And I couldn't be happier with the care Dr. Mayo and Sara give.