Wednesday, May 23, 2012

Time to face one of my biggest fears

In the spirit of moving forward, I need to address something I haven't been willing to visit yet. My subtalar joint fusion that went very, very wrong. I haven't looked at pictures of it, though every step of the process was fully documented. Whenever I show a pic of when the cast came off to someone that isn't squeamish, they can't believe it was my foot. I need to look, absorb it, come to terms with it, and keep going. (Link to partial photo gallery at the bottom of this post. Not for the squeamish.)

On November 16th, I had the fusion (arthrodesis). The lateral side of my ankle was opened up so the joint could be cleaned out and positioned correctly. That was when my doctor noticed that my joint would not open due to an extra piece of bone that effectively destroyed the joint. It is referred to as a talocalcaneal osseous coalition. It is a hereditary, congenital birth defect, and the reason I was in so much pain and had been getting cortisone shots to buy some time since summer of 2009. My doctor removed the bone, ground it up, and used it with the artificial bone matrix to fill in between the calcaneus and talus. Sometimes a cadaver bone is used but I was lucky to have my own bone to use. A stainless steel screw was drilled into my heel, and my very own spun out platelet rich plasma (PRP) was injected into the site to expedite healing. After the surgery, my doctor told me he couldn't believe I had been walking after seeing the condition of the joint. I had gotten really good at pretending I wasn't in pain (most of the time, those who knew me well could see when I was hurting badly). As a trainer, I couldn't have any weaknesses, so I ignored the pain the best that I could. In the weeks prior to the surgery, my 8-year-old daughter would remove my shoes and massage my feet at night. The kids hated seeing me in pain.

I had the usual difficulties following surgery. I woke up crying in pain in the recovery room, had to be helped to the bathroom during the first 24 hours post-op, got very sick on the percocet, couldn't eat much in the first week besides crackers, sugary cereals, and pop tarts, and was just stuck in bed with a cooling pump around my ankle, trying to drag out my pain medicine doses to the point where I'd almost start screaming in pain (of course my caretaker, a nurse, didn't feel sorry for me because I wasn't being compliant with taking it every 4-6 hours as directed). I had a fever 3 days post-op. There was a pain pump delivering medication into my ankle for the first 5 days post-op. My ankle muscles would twitch when I was asleep, waking me up in a very painful manner. I threw up in the car ride to my first post-op doctor's visit (November 21) and had to be given a shot of something in my thigh to help keep the nausea at bay for the appointment and the ride back home. I was in a splint and remained in one for the first 12 days before I got my first cast (November 28th). A week after that I got a second cast (December 5th) and the stitches came out. My foot was positioned as close to 90 degrees as it would go. As hard as I tried, it simply wouldn't make it the entire way. That cast stayed on for three weeks and one day.  My caretaker left from December 14-19 for a pleasure trip with his significant other (4 weeks post-op) so I had to fend for myself and our kids. I noticed incredible swelling when I was upright so I stayed in bed most of the day. I got my handicapped parking placard on December 14th so I was driving left-footed and took the kids out to eat once a day so they'd have at least one good meal. I baked cookies (placing my knee on a rolling chair in my kitchen and then would prop my swollen, purple foot on the counter while waiting for them to bake) for my clients, friends, and co-workers at Equinox for Christmas and delivered them, happy to see everyone (though unhappy my foot was turning horrible shades of purple). I knew I wasn't ready to go back to work yet since I couldn't be upright for an hour at a time. I'd also lost about 10 lbs in the first couple of weeks. On crutches, I couldn't carry food to my room from the kitchen, and I couldn't be upright long enough to fix anything anyway. I didn't always have access to food, and was alone while the kids were in school. I was taking them to and from school in a wheelchair before I was able to drive (nearly a mile in each direction). My wheelchair had a special attachment so my foot was positioned straight out in front of me. On outings to the grocery store or mall, I also used my wheelchair. I used it for around two months.

At that fateful appointment where the second cast came off and the third cast was to go on (and bringing my ankle to 90 degrees) on December 27th, my doctor noticed that something had gone horribly wrong. The incision site had opened completely. He told me to go to the nearest hospital ASAP, so I chose to go to Naval Hospital Camp Pendleton. They refused to treat me there because they hadn't performed the original surgery. My doctor is only in surgery on Wednesdays, so they put me in a special splint and sent me home with high doses of antibiotics (bactrim). I drove the hour back home, feeling more than a little frightened. Every doctor that looked at me had the same reaction, and it wasn't a good one. I was operated on the next day by my doctor. One of my best friends and clients took me to the surgery center, and a co-worker picked me up and brought me back home. The surgical procedure was a debridement for a wound dehiscence. Some cells were cultured, found to be infected, and a second antibiotic (cipro) was added to my regimen. I was on a wound vacuum that was faulty for the first 18 hours due to improper placement. Apparently only wound care nurses do it enough to get it just right. The alarm kept going off every 2-4 minutes and it felt like there was suction on an exposed nerve. I was taken to wound care the next day by a dear friend, neighbor, and client and it was fixed (huge relief).

My diet consisted of a bottle of kombucha daily (probiotics because I felt like the massive doses of antibiotics were trying to kill my soul), grass-fed meats, organic eggs, raw milk cheddar and goat cheese, organic fruits, organic vegetables, raw nuts, hot green tea, and plenty of filtered water. I refused anything else. I wanted to make sure I was doing everything possible for the best wound healing outcome.

Several days later, my parents arrived from South Carolina. I'd emailed some pictures that were taken of my foot at Camp Pendleton, and it was serious enough that they decided it was best for my mother to come take care of me and the kids until I could take care of myself. She stayed until a few days after my last surgery. My caretaker was working 12 hour shifts and couldn't take any more time off from work to take me to surgery or appointments. He had burned all of his leave with his significant other before coming to California from Florida while I was struggling with the kids. I had wound care visits three times a week for dressing changes. Once a week the vacuum canister was replaced. My days were spent in bed plugged into the vacuum, watching Netflix, and playing solitaire on my phone. The more distracted I was, the less I had to think about what was happening to me. When I started to think about it, I would cry. Avoidance was best.

At wound care, I wasn't improving. The depth of the wound remained the same- open (tunneled) to the bone, around 3.2 cm (1.3 inches) deep. I went for a second opinion at UCI, and the doctor said that something must have gotten infected at the initial surgery, and whatever it was hadn't been removed at the first dehiscence, so a second one was scheduled. Two weeks after the first dehiscence on January 11th (8 weeks since the original fusion surgery) I was back on the operating table again. One week and one day later (January 19th), I had a reaction to the antibiotics in the form of a full-body raised rash. It started on my legs and went to my neck. I discontinued the bactrim and cipro and started on benadryl at that point with the approval of my doctor, fearing anaphylactic shock. Another culture had been taken at the second dehiscence, and came back negative. The antibiotics were a precautionary measure against further infection since my wound was still open and showed no signs of closing. I was still on the wound vacuum as well.

On Wednesday February 1st, I was removed from the wound vacuum because it was contraindicated for bone infection. There was still no reason found for any infection to begin with, and no answers for why I wasn't healing or why I had these complications in the first place. All of my doctors said that bone infection was the only reason the wound would still be open. Bactrim and cipro would not have protected against bone infection, only IV antibiotics with a picc line (from a line in my arm straight into my heart) for six weeks would combat that type of infection. A CT scan with contrast was ordered, though not extremely useful in determining the extent of bone infection due to the chronic inflammation of tissues at that point, but it would be a starting point for when my doctor operated again. It appeared, with very little accuracy, that my bone was free from infection. I also developed a fever around that time and was terrified that my body was close to going septic. I had been getting blood tests every couple of weeks to make sure everything was still within normal limits. At no point was I guaranteed that I was going to be able to keep my foot through all of this.

After the wound vacuum was removed, I was able to use the boot and was encouraged to bear as much weight as possible to help the bones fuse. When the vacuum was on, the boot would put too much pressure on the vacuum and it was painful, so I stayed in a splint during that time. When I practiced partial weight-bearing, it was without the boot in my home. I was able to take a few clumsy steps at a time with the boot on after the vacuum was removed, but it was hard and painful.

On February 8th, I went under the knife for a 4th time (4 weeks since the previous surgery and 12 weeks since the first surgery). The stainless steel screw was removed and my wound was cleaned for a third time and surgically closed. Against all odds, my bone did not appear to be infected. After being exposed for 6 weeks, that was nothing short of a miracle. My stitches came out two weeks after that. Since the wound remained closed, it is suspected that I might have had an allergic reaction to the nickel in the stainless steel screw. Three weeks and two days later, I was discharged from wound care, with instructions to keep applying the prescription ointment to the wound site and not submerge it in water (a pool) for two more weeks. I was on crutches until the end of March, and even after that I used them a few times. I wasn't on pain medication for very long after the first three surgeries (a few days at most) but with the removal of the screw and the presence of the chronic wound, I was (and still am) in a significant amount of pain. That's when I started taking vicodin, then tramadol, and back to vicodin again on a regular basis. I'm going in for a CT scan tomorrow to make sure everything is ok because I shouldn't be in this kind of pain at this point. I've been in tremendous pain, haven't been able to sleep well, and haven't been able to eat much. It's been going on for over six months now, and I'm getting tired of it. The goal right now is to recover as fast as possible from this so I can get the same procedure done on the left foot, with a hopefully better outcome. My doctor will use titanium instead of stainless steel (not used often for drilling through the heel, as it is a softer metal and tends to bend), and not use the artificial bone matrix. Fingers crossed everything turns out to be ok.

Some of the pictures are here: Link to partial photo gallery- WARNING: NOT FOR THE SQUEAMISH

I wasn't documenting the wound during most of the wound care visits, but my mother has those pictures on her camera. Every time my dressing was changed, she took a picture. These were the pictures that ended up on my phone.

Now that I've gone into detail about it and actually looked at the pictures, I feel relieved. Horrified, of course, but relieved that I'm not afraid anymore. I'm tired of being afraid of so much in my life.


  1. This breaks my heart! Of course I enjoyed the pics but I am weird like that. You are in my prayers girl.

  2. Thank you Laurel <3 I hope you're doing well!