Days 1-3 post HO removal surgery

For those of you who are interested in all the little details:

My time in the hospital was uneventful (if you can call being flayed and chiseled, then screwed, sewn, glued, and taped back together uneventful). The most remarkable thing to me was how relatively little I hurt. I didn't take any pain medication by choice during the four days I was in the hospital, and other than during the surgery itself I was only given pain medication three times: one hit on the PCA to test it after they hooked it up (2 mg dilaudid), two Vicodin the next day before PT came at the insistence of the nurses, and two more Vicodin the following day at the nurses' insistence (though PT didn't end up coming until nine hours later, when it was probably no longer effective). The next day I insisted I didn't want anything, so I haven't taken anything since the third day.

So what did it feel like? Of course right after surgery I was in a fog with all sorts of sensations, including nausea for a few hours (puked once). But after that wore off, I didn't hurt much just lying in bed. When I had to move I felt very sore but I didn't have that bundle-of-dry-sticks feeling of fragility inside my hip like after the PAO. Standing up I could feel a lot of muscle soreness and exerting the muscles was somewhat painful. But the muscle pain diminished noticeably every day.

The first time PT came they sat me on the edge of the bed for a few minutes, then stood me up. Cumulatively I was upright for about five minutes before I began to feel light-headed, which was a big improvement over last time. Opting out of the epidural was a good call, since the epidural made me very light-headed (it results in the blood vessels in the legs enlarging, causing blood to pool in the legs, with the result that not enough blood is left in the head). I experienced some light-headedness one other time, but that was all. I think it was the second day that I got up to use the toilet, and felt so good that I went to the sink to wash my hair and generally wash up, 20 minutes or so, all under my own power. We were very encouraged by that.

Lying in bed got to be uncomfortable. The second or third night I got tired enough of lying on my back that I worked my way out of the CPM machine and onto my non-operated side, where I slept for an hour or so. That made a big difference.

The regimen is very much like for SDH and PAO:

• green leg from surgical scrub (including Margie washing it off herself again, surprised that no one else had)
• TED hose
• Plexi-pulse
• CPM machine
• two surprisingly long drains hooked up to a Hemovac (came out the third day, I think)
• catheter, out when you're ready (the second day, I think)
• IV drip
• PT once a day
• blood draws in the middle of the night
• daily Fragmin shots
• no straight leg-lifting and no active abduction
• Dr. Mayo and/or his PA popping in once or twice a day

I did lose a fair bit of blood, enough so that they hooked up a cell saver during surgery and recycled 600 ml of my own blood, but I did not receive a transfusion. I ended up getting three bags of IV fluid (3 liters) before they unplugged me, which was enough to make me puffy but not to the point where I felt like my eyes were bulging, like last time. I felt a quart low or so; the first few days after surgery my blood pressure was low (90s over 50s) but eventually came up to 110 over 70 or so.

Even though I wasn't using the IV the last two days, the nurses still wanted to keep it in for quick access should the need arise, so I ended up having it in until the morning we left.

Dr. Mayo said that normally after re-opening an incision he would excise the scar tissue before suturing it up again, but he decided not to. Perhaps my skin was damaged somewhat by using steroid creams for months on the dermatitis. In case my skin was reacting to the kind of suture he used last time, he used nylon, the ends of which are hiding under the tape. So maybe I'll end up with a killer Frankenstein-style scar.

(You can see the effects of the dermatitis in the brown, pigmented splotchy area near the visible drain hole in the picture to the left.)

Dr. Mayo had me on a hip CPM this time, which I liked much better than the knee CPM. It was much easier to get in and out of, and it didn't rub my heel (last time I got an especially nasty pressure sore on the heal, in part because of the rubbing). My hip felt tight as the machine approached 90˚ but it was not painful.

In addition to radiation therapy I'm on Meloxicam, in pill form once a day after breakfast. It can have some nasty side effects and needs to be used carefully in conjunction with anti-coagulants like Fragmin. I'm eager to get off both. I've been having headaches the last few days and am wondering if the Meloxicam might be to blame.

Krista and I both really enjoyed seeing our old friends from last time: Kim, Stephanie, Pat, Margie, and many others. Thankfully I was a lot less work than last time, and we didn't have to share so many awkward and uncomfortable moments.

And of course Dr. Mayo and his new PA Renee were excellent. Dr. Mayo is careful and meticulous, two excellent attributes in a surgeon, which is why surgery was 5.5 hours (incision to suture completion, according to my chart). We always enjoy talking to them. Again, everybody in the hospital had good things to say about Dr. Mayo.

Thursday morning both Renee and Dr. Mayo came by to check on me one last time and gave the thumbs-up to go home, and by 11 am, after a stop at the hospital pharmacy, we were on the road.

Day 1 radiation therapy

[Flashback to the day of surgery, to fill in details on radiation therapy for those interested]

The morning of surgery, after checking into surgery pre-admission and changing into the lovely gown, we waited for radiation therapy to call. Finally about 7:30 they were available so a couple of nurses wheeled me and Krista down to radiation therapy--the long way. Neither nurse was sure how to get there with all the construction and rearranging that's been going on, with misleading signs thrown in for good measure. 

After 20 or 30 minutes we finally arrived. The radiation tech was clear, concise and assured us that we're in good hands because she's been doing this 20 years. She briefly showed us the plan on a computer monitor and then wheeled me into a large, open room with a concrete floor, various machines, and green laser beams criss-crossing in places. The machine they were using on me was much less intimidating than a CT or MRI machine, but way more dangerous.

Seeing a sizable chunk of lead on the platform I'd be lying on, I chuckled, and the tech said she'd explain that.

She told me that I would be receiving a single dose of radiation, a blend of five kinds of photons, X of something else and Y of something else, 700 centiGray's worth (absorbed, I think).

Next I get up on the platform while the tech and her assistant graciously give me the room while I employed the lead cup in the fashion they described (though I suppose they were watching on camera). They return, propping up my knees with a slab of foam, hooking my feet together with a rubber loop so I don't slip out of position, and then they line me up under their laser crosshairs. Satisfied with my position, they tell me to hold still and depart the room to run the machine.

First the machine does some calibration, taking a quick image from above and then one from below to make sure they align properly. Then the actual radiation bath began, bathing my front and then the rear. I think this stage was only a couple of minutes. While this is happening I could see these metal shapes inside the emitter head (or whatever it's called) shifting themselves into the shape that I saw on the computer monitor earlier.

And that was it. I freed myself from the lead prison (let's hope it worked) and then was wheeled back to the fifth floor for surgery.

Post-surgery Day 2

This morning Dr Mayo came by to check on Matt.  He thought Matt looked really good, ordered the nurses to remove his catheter and IV.  If he needs any pain management he'll take some pills orally.

Physical therapy came around 10:30 am and got Matt on his feet.  His blood pressure is on the low side and he struggled with light headedness so only stood for about 5 minutes.  They'll come again tomorrow.

Later this afternoon I helped Matt sit up and he walked to the bathroom and felt great!  He then proceeded to wash his hands in the sink, wash his hair, and brush his teeth.  He was very encouraged.

Matt is doing well on the CPM.  He's already almost up to 90 degrees flexion with no pain!

That's all for today...

Day of surgery (to remove ectopic bone)

We arrived at the hospital at 5:30 this morning.  We went through admittance and Matt received a small dose of radiation to help prevent ectopic bone from forming again after today's surgery.  We happened to pass Dr Mayo in the hall and said hello.  Matt yelled back, "Save the screws!"  He's hoping to get the screws that Dr Mayo will be taking out from his PAO in September.

Matt was rolled away for surgery at 8:30.  It was a long wait and I didn't hear anything from Dr Mayo until 3:40 in the afternoon.  The surgery went well but took longer than expected because there was a lot of ectopic bone.  He removed about an equivalent of 1 1/2 cups of bone and also cleaned out some scar tissue.  Dr Mayo was able to enter through the same incision spot from last surgery so Matt won't have any additional scars.  He lost a bit of blood but they reused what blood pooled and siphoned it back somehow.

Matt awoke from the anesthesia feeling a bit nauseous and threw up once.  The nurses graciously changed his bedding and then gave him some anti-nausea medicine which helped.  He's on an IV for pain medication and can control it himself.  So far he hasn't taken much.  He wants to do all he can to avoid having an ileus again.

They put him on a hip CPM in bed and he's doing well with it moving his leg up and down.  It's currently set at 40 degrees flexion and Dr Mayo wants him to work up to 90 degrees in the next two weeks.

Again, Matt has a catheter and also a hemo-vac to drain the excess blood from his surgery sight.  He's on oxygen and has an IV with saline to keep him hydrated as well as some antibiotics.

It's been a long day.  But we're doing well and are thankful for how God has brought us through.

Four tattoos and ectopic bone

Monday I had a CT scheduled for the radiation oncologist to use for targeting the radiation treatment he'll administer on surgery day. (This single dose of radiation is to suppress additional ectopic bone from forming after this next surgery.)

But the lingering dermatitis on my skin has been threatening the April 26 surgery date. It finally started to go away, so I stopped using the steroid cream, but the dermatitis returned so I'm back to using the steroid cream twice a day. The big question around here the last month or so has been, will it clear up enough for surgery?

Monday before my CT appointment Dr. Mayo carved out a few minutes from his schedule to take a look at my skin. I definitely did not want to absorb the extra x-rays for a CT if we weren't going ahead with surgery on the 26th. But thankfully it has cleared up enough for him to cut. He thought surgery was scheduled for the following Wednesday two days later, but was relieved that he'd have another week to think about how to get at all the ectopic bone. He's hoping to get it all through the PAO incision, but that may not be possible, so he might have to make yet another incision. I'm glad that in a situation like this that's not cut-and-dry he has three decades of experience to draw from.

So I went ahead and did pre-op with Dr Mayo's new nurse Renee and then had the targeting CT done.

The targeting CT gives the radiation oncologist the information he needs in order to plan how to administer the radiation. The tech marked the outside of both hips with crosshairs, plus another in the center near my waistline, and another near my belly button. Then she gave me four tattoos in the center of each crosshair--just a dot made by needle prick. She next taped BBs on each crosshair so the reference points would show up on the CT. Once that was done it took another five minutes or so to get the CT.

So everything's in place. The insurance company pre-approved the surgery. I won't need to bank any blood this time, nor do they have me taking iron. I also won't need to shower with that nasty hex-something-or-ever stuff the night before and morning of. I'll be on a CPM machine at the hospital, will leave on crutches, wearing TED hose and two more weeks of Fragmin to minimize the possibility of clotting and stroke, but when I return home I'll sleep in my own bed instead of a rented hospital bed, and won't need a CPM machine at home. I don't know yet whether I'll need a commode or shower chair again. I'll be on a no-straight-leg-lifting restriction for four weeks, and then I can resume PT.

I'm skipping the epidural, as wonderful as it was last time, in favor of PCA in hope that I'll be able to get back on my feet sooner, which will help the swelling to subside quicker and keep my bowels moving, unlike last time. I'm guessing it'll hurt more than the perfect epidural I had before.

Krista will stay with me for the three or four days I'll be in the hospital. We'll try to update the blog as things progress.

Thanks for your prayers!

[update: added photo]

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.