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!

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.

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.

SDH video

I found an SDH video, narrated by Dr Ganz who pioneered this particular technique. Dr Mayo did something very similar in my first surgery, except once the joint was opened the repair was much different (labral repair, 10 mm OATS, shave neck offset). The surgery itself begins about 8:20.

I purposely waited until after my surgeries to watch this.

Synopsis

We've given lots of details so now I think a synopsis is in order.

Wednesday the 23rd Dr Mayo performed the SDH to clean up my socket. It was messier than expected, requiring a major labrum repair using a record seven suture pins, and a 10 mm OATS plug. The labrum repair also involved shaving off some bone, temporarily increasing my degree of dysplasia.

Dr Mayo had hoped to do both surgeries at once, but the amount of work the SDH required made that not possible. Plan B was to do the PAO on Friday but my platelet count was low so surgery was postponed to Monday. The PAO went well and Dr Mayo was able to almost completely correct the dysplasia. He expects no problems with it.

So the surgeries went very well. There was one major problem, an ileus in which the narcotics I began taking when they transitioned me off the epidural put my bowels to sleep. Perhaps the chances of getting an ileus could have been reduced had it been possible to do the second surgery sooner, so that I would have needed the epidural and narcotics for a shorter period of time. But I think it's worth it even the way it's happened because I'll only need one recovery.

I hope to ask a bunch more questions (when I'm not on drugs) at the next follow-up appointment about the nature of the damage, the repairs, and his prognosis for my hip. Also Sarah his PA said I'll be able to get pictures of everything. I'm eager to see what the damage inside the joint actually looked like.

Day 14 (SDH+13, PAO+8): going home

We had one more visitor Monday night around midnight. We already had the lights off and were just settling in to sleep when the privacy curtain by the door started to open. Krista sat up and said, "What?!" and lo and behold, there's Dr Mayo, just returned from a business trip out of town. I said, "What are you doing here? You should be checking on your wife, not me!" "She's asleep already," he replied.

So we talked about how I'm doing and when I could go home. He said that once I met the last couple of PT benchmarks (e.g. traverse stairs) I could go home, maybe the next day or Wednesday. We talked a bit more about limitations, and he decided I shouldn't exceed 60˚ (instead of 90˚) on the CPM to reduce the chance of non-union of one of the bone cuts he had to make for the SDH. Other than that I basically have no PT to do until I can start bearing weight in 8 or 12 weeks, except a couple of simple exercises intended to maintain some muscle tone in the operated leg (quad, glutes, hams).

Krista and I went to sleep excited for the next day. We got going the next morning determined not to miss PT and therefore delay our departure. (PT is good but seems understaffed; if you miss them when they come for you, chances are they won't have time to get back to you that day.) PT Pam worked with me again teaching me how to do stairs ("up with the good, down with the bad") and on proper crutching technique. Then we went over some paperwork with a nurse (care instructions, sign a few things), Krista went to the pharmacy to get my Fragmin shots (an anti-coagulant I'll take for two weeks to minimize the chance of blood clots), and we worked on getting a walker. (We ended up returning the walker yesterday unused, as crutches are working fine.) At one point while Krista was packing I choked up at the thought of going home, I think for joy of being reunited and for remembering all we'd been through.

Krista called Kari to ask her to bring the van and the kids around 1 pm. They gingerly loaded me into one of the middle seats in the van since those have more legroom than the front passenger seat. All together again, we drove happily away on a nice sunny day. On the way home we got some real food for lunch and Jamba Juice, picked up a part for the minibike, and finally arrived home. I was somewhat uncomfortable due to all the driving movement and the long sit, but it was bearable. Maybe I should have taken some pain meds before the trip, but I didn't want to risk bowel trouble again.

So here we are, two weeks later, home and very happy to be together again! Thank you God!

Day 5 (SDH+4)

Matt got a good chunk of sleep last night, from about 12 midnight to 6am.  He felt pretty good today.

They put his leg on the CPM machine bending his knee up to 40 degrees which results in his hip being flexed to 50 degrees.

His epidural was turned down to a 6 so he hasn't been as light headed.  His physical therapist had him stand up today.  He supported himself with a walker for about a minute.  Later he worked his way to a chair where he sat for an hour and a half to eat lunch.  His leg has to be either stretched out forward or pulled in next to his other leg.  That was big progress since he didn't pass out.  The only time he felt a little light headed was while talking, since it uses up a lot of oxygen.

Today he got his hair washed, his face shaved, and new linens put on his bed. 

His blood platelet count is still at a low of 114.  The doctor can't explain the low count but says it's not in the danger zone so they are going ahead with surgery scheduled for tomorrow, Monday, at noon.

This afternoon, he was given prune juice to get his bowels moving.  They want him cleaned out before heading into another surgery and additional days on the epidural.

They did a doppler scan (ultrasound) of his legs to make sure there are no blood clots. Evidently this is not normal practice for most doctors.  Dr Mayo, again, is taking extra precautionary measures to care for his patients.  Thankfully, Matt's x-ray result was good.  He will get another one before leaving the hospital next week.

Tomorrow morning they'll test his blood platelet count again and get a current x-ray of his hip for the doctor to refer to in preparation for surgery.  The anesthesiologist may replace Matt's epidural with a new one to help prevent possible infection.  Right after last Wednesday's surgery Matt responded with much vomiting.  The anesthesiologist said it was most likely due to the general anesthesia.  Evidently they gave him about every known anti-nausea drug to try and stop his vomiting.  This time they'll try something different, maybe tweak what they gave him to help diminish his nausea.  Dr Mayo said Matt has a good epidural and that it's doing a really good job blocking the pain for him.

Several weeks before his first surgery, Matt gave two units of blood to have on hand in case it was needed.  Thankfully, they haven't had to use it yet.

Today Matt heard even more stories about Dr Mayo.  He seems to have his own distinct way of doing things and is very good at it.

Thank you all for your emails, phone calls, blog comments, prayers, and thoughts for us.  We appreciate them all and are encouraged when we hear from you.  Matt will be out of commission for a couple days now, but feel free to call or come visit starting Wednesday.  Most likely he'll be in the hospital (Tacoma General Hospital) until Friday or Saturday.

Day 4 (SDH+3)

Last night Scott Matheny came to stay with Matt at the hospital so I could go home, see the kids, and get some sleep.  We are so thankful for family and friends who are willing to help care for the kids while Matt and I are at the hospital.  The kids have developed some colds, so hopefully that will be short-lived.  Otherwise, they're doing fine.  I'm told they've been playing surgery the last few days.  (Titus' idea of surgery is cutting off heads and arms and sewing them back on.)

Thankfully Titus wasn't the one doing Matt's surgery.  The doctor didn't cut his leg off but he did make an incision about 15 inches long lengthwise down the side of his thigh.  Dr Mayo stitched it together underneath the surface skin and then glued the outer skin together.  It is a rather clean wound area. 

Matt started some physical therapy yesterday.  They taught him how to sit up on the edge of the bed.  The first time he made it for 20 seconds before he needed to lay down.  The second time he made it a little longer but had a black out and nearly passed out.  We learned that this is due to the effects of the epidural dilating his blood vessels.  When he sits up, all the blood rushes to his lower extremities and that's why he has felt nauseous as well.  The doctor said his epidural could be turned down so that he can gain more feeling and move around more.  That should help decrease his nausea too.  They just turned it down to a seven.  We'll see what happens. 

Thankfully, Matt's appetite has returned and he has been able to eat more substantially today.  The doctor wants him to get more protein to aid the healing of his wound.

The physical therapist put Matt on the CPM machine yesterday and he slept with it last night.  Matt said it feels really good to be moving and there hasn't been any pain from using it.

He got a couple good blocks of sleep last night.  Since it's the weekend, things have toned down a bit and there aren't quite as many people bustling about.  He does have new nurses and even they continue to make positive comments about Dr Mayo's work. 

Matt's blood platelet count has risen from a low of 119 to 124.  We're glad to see some improvement.  Dr Mayo will decide on Monday morning if he should proceed with the PAO surgery.  If all goes well, we hope for Matt to come home on Friday or Saturday of next week.  

Matt has enjoyed all the people here at the hospital.  I suppose it would be refreshing for someone who is basically a shut-in, not seeing his boss but every 8 years, having no co-workers, working out in the country from a bedroom closet using his wife's childhood vanity table as his desk.

Matt has a great view of the Port of Tacoma from his hospital room.  We've enjoyed some beautiful sunrises and sunsets here.

Day 3 (SDH+2)

This morning we received the news that Matt's platelet count has fallen.  Dr Mayo has postponed Matt's PAO sugery until Monday.  Today's plan is to get him onto a CPM (continuous passive motion) machine and get him moving a bit.  We're anxious to talk with the doctor more to learn what may have caused Matt's platelet count to go down as well as how we will attempt to bring it up in preparation for surgery. 

We're feeling a bit disappointed right now.  Matt has been anxious to get this second surgery over with and get on to recovery.  However, again we are thankful for a good doctor and that he is cautious and is doing what is best for Matt.

The nurses have shown enthusiasm that Matt has been passing gas.  Little things are a big excitement around here!  It's a good sign that his bowels are waking up and working. 

Matt has been struggling with nausea off and on.  We're not sure if it's due to the epidural itself or the Nubain they give him to amplify the effects of the epidural.  He hasn't felt like eating much.

Please pray that:

• Matt's blood platelet count would rise to a safe level to go forward with surgery on Monday.
• Matt's nausea would subside so he can eat and regain some energy.

Day 2 (SDH+1)

Things have been eventful around here.

We didn't sleep much last night because the nurses came in every hour or two to check Matt's vitals.  Also, Matt kept feeling like he had to go to the bathroom, when he shouldn't since he has a catheter.  The nurse noticed that his urine hose wasn't draining into the bag properly.  She adjusted the bag, moving it lower so gravity could help out, and suddenly Matt was relieved depositing 1500 mL (1.5 liters) into the bag. He had no idea his bladder could hold that much.

The epidural is working well....well, as long as it's connected to him.  This afternoon, an anesthesiologist came to check on Matt and everything looked good.  After he left I happened to notice an IV hose lying on the floor. I traced it up to the epidural machine and we quickly became concerned.  The nurses, doctor, and friends had previously warned us to make sure we stay ahead of the pain and never let it get out of hand because it's hard to get it back under control.  Right away I called a nurse and they called the anesthesiologist back in to repair the hose.  My guess is that while he was here previously, he accidentally stepped on the hose and it became disconnected.  Matt was relieved when it was taken care of.  He was beginning to feel the epidural wearing off and thought he could tell where his bone had been cut during surgery yesterday.  Thankfully the epidural started flowing before there was too much pain. 

Matt's fluid IV line in the back of his hand had started to swell and puff up.  For some reason the fluids were going into his hand instead of into his vein.  The nurse hadn't seen that happen for a while and rated it a 3+ for those of you who know what that means.  She removed the line and had Matt elevate his hand.  The IV line has been moved to his other arm and we're waiting for the nurse to hook up the fluids again. 


Dr Mayo dropped by this evening to check on Matt and discuss tomorrow's surgery plan.  The only concern is that Matt's platelet count is on the low side, 133.  If it drops much lower by the morning, then surgery will need to be postponed until Monday.  At this point, surgery is planned for 8am tomorrow, Friday.  Please pray for Matt's platelet count to rise so that we can go forward with surgery.  

We've had some really great nurses as well as some sketchy ones, but invariably, whoever we talk to, they have really good things to say about Dr Mayo.   We're confident that Matt's in good hands, and for that we are very thankful.

Day 1: SDH surgery

Wednesday Matt went into his first surgery for the dislocation of his right hip.  The doctor's intent was to clean out the socket and to get a better idea of what has been causing Matt's hip pain.  What he found was a bit different and much messier than what he expected.  The labrum, the cartilage around the rim of the socket, needed much repair and Dr. Mayo ended up using a record number (seven) of suture pins to fix it.  He also took a plug of bone and cartilage and transplanted it into the top of the femoral head to smooth out the surface.  In the end, the repairs made his dysplasia worse, which is why the PAO surgery on Friday is crucial. 

Matt is doing well.  He's very glad for the epidural which will be ongoing through Friday's surgery and into the next couple days.  The epidural IV is taped up his back and over his shoulder.  He said it feels like his stomach muscles are constantly tense as if he's doing half a sit-up.  They've got him on oxygen to make it easier for him to breath, but he's not needing it as much right now.  His left hand is hooked up to an IV and they're pumping liquids and sugar through him, mainly to keep his blood pressure up and keep him hydrated.  He felt pretty bloated, like his eyes were bulging.  The nurse toned it down now and he's feeling much better.  Those are the gadgets on the top half of his body.

On his lower half he has a catheter as well as a tube inserted into his surgery wound to drain out the excess blood.  They've got him wearing TED socks on his feet, tight knee socks that help prevent blood clots.  In addition, his feet are in wraps that are hooked up to a machine that intersperses pressure on is feet, again to help circulation and prevent blood clots.  

Matt seems in good health, considering what he's been through.  The only concern is that his blood platelet count is on the low side, but not low enough that they're making a big deal out of it.  Beginning tonight at midnight, he won't be able to eat or drink anything as they prepare him for another day of surgery tomorrow.

Surgery #1: "surgical dislocation"

I'll be having two surgeries, scheduled for the 23^rd and the 25^th. The first surgery is called "surgical dislocation." Basically they'll dislocate my right hip so they can get a good look at the hip socket and the ball on the top of my femur and fix whatever damage they find. The surgeon will suture or remove torn cartilage, and possibly transplant plugs of bone and cartilage onto the ball if necessary. Also, he'll shave down the front neck of the femur near the ball because it impinges on the rim of the socket (see image to the right).

Gory details for the surgical dislocation: first they'll unzip the skin and separate some muscles to get to the juicy parts. Then they'll temporarily cut off a slice of bone where a bunch of muscles attach, along the bold line in Fig 1. The sliced-off part of the bone can then be pulled out of the way with the muscles still attached. The idea is to disturb as few muscles as possible; and since bone heals easier than muscle detachments, it's better to make this cut rather than detach and reattach all the muscles. This bone will get screwed back on at the end.




With those muscles out of the way, the leg can be rotated out of the socket for inspection and repair:




I'm grateful for bodies that heal, doctors and nurses that can do this stuff, and for the promise of a fully warranted replacement body in the future!

Update: watch a surgical dislocation narrated by Dr Ganz.