An Open Letter to My Orthopedic Surgeon

No, I don’t have anything of value to add to the discussion on ED today. Instead, I offer you an open letter to my orthopedic surgeon: 

 

Dear Dr. H—,

 

Do you remember how I came to you, desperate, for a second opinion about my ankle after being told by a Stanford doctor that my MRI showed a torn tendon and that I needed surgery, and you not only agreed but encouraged the surgery, even pushing it up a month, and then, after the surgery, telling me that the tendon wasn’t torn and there was nothing structurally wrong with my ankle but a lot of inflamed synovial and scar tissue, and then telling me I’d be fine to walk within a week, but then when I wasn’t getting better by my next check up, wrenching my ankle around in several directions telling me to get over it, only I had gotten an infection from the surgery you did and that was why it wasn’t healing and still hurt terribly, so you put me on antibiotics that almost killed me because I was allergic to them, but you took one look at me when I was covered in huge, painful hives and actually denied that I was having an allergic reaction to the medication, and then, after having to do another surgery to get rid of the infection, you wrenched my ankle around a lot and sent me to physical therapy saying that I was fine and had no reason to be in pain, even though the nerves in my ankle wouldn’t stop firing and it hurt to put on a shoe or even touch the area near the scar, and then, after two months, when the nerve pain actually got worse you came into the office, wrenched my ankle around in a bunch of different directions despite the fact that I was crying from the pain, declared, “We’re done,”* and then walked out of the room (and charged me $30 for the less-than-five-minutes you spent with me)?

 

Well, this keeps happening:

Swollen ankle 5 months after surgery

 

“There’s nothing structurally wrong with your ankle.”*

 

Thanks, doc.

 

– K.

 

*Actual quote.

How I Got Here: Part Two, or A Photo-Heavy Meditation on My Ankle and Moving to California

Before we jump into today’s post, I just wanted to let you know that if you live in the San Jose area, the National Eating Disorder Association Walk is on September 22 on the Plaza de Cesar Chavez. If you want to walk, volunteer, or donate, please let me know! I’m going to be volunteering with the Eating Disorder Resource Center, and we’d love your support! Thanks, and now onto our regularly scheduled programming!

Airplane wing and clouds

On the wings of a dream…

At first, California was a dream come true.

I had transferred to a new Kool-Aid store, I had a bedroom in my mother’s house, and I even had a Bikram yoga studio five minutes from my new digs.

I lived in the mountains in a quiet neighborhood with spectacular views.

View from the mountains in Silicon Valley

The view from my house

There were multiple vegan restaurants in my town. And multiple vegans. I was no longer an alien.

I just continued to harbor this alien, inexplicable pain in my right ankle.

Fortunately (or unfortunately, such as the case turned out to be), Stanford University is under an hour away from my perch in the mountains–and Stanford University is where, I was assured, the professionals would be able to put an end to the by-then almost year-long journey on which my ankle had taken me.

Initial examinations at Stanford left me with this impression: a) there was definitely something wrong with the peroneal tendon and b) my doctor sucked at talking to people.

The Stanford doc was apparently the best of the best when it came to the orthopedics of the foot and ankle, but (and online reviews concur) awful at people skills. She ordered an MRI of my ankle,* and spent exactly six seconds going over the results before ordering another boot and sending me back home.

Peroneal Tendon MRI

Apparently it looks like there’s a tear in there…somewhere.

When I scheduled another appointment with her to ask her for an explanation, she pointed to a spot on the MRI that was sort of dark and said, “It’s a high-grade tendon tear.” When I asked what that meant (as in, prognosis? Treatment? Healing time?) she just replied, “That means it’s bad.”

And that was that.

So I went back on disability with the promise of maybe surgery/maybe not in six weeks upon reassessment.

And so I went for a second opinion.

The Palo Alto Medical Foundation came just as highly recommended as Stanford, and my second-opinion doctor looked at the MRI and concurred with the high-grade tendon tear diagnosis. He, fortunately, took the time to explain to me what that meant:

There are two peroneal tendons that run down the lateral side (the outside) of the leg and around the ankle bone: the peroneus longus and peroneus brevis. The tear was in the peroneus longus and, apparently, only partial (meaning that the tendon was not entirely severed, which would have explained why I had been able to walk around on it for a year). If it was really a severe tear, however, no amount of sitting around on my rear and waiting was going to coax the tendon to repair itself. (Tendons and ligaments, unlike bones, do not have access to the blood flow of the vascular system, and so they are notoriously bad at repairing themselves. This is why people say it’s actually less of an ordeal to break an ankle than to sprain it.)

Rock tape, kinesio tape, ankles

Mom’s Rock Tape was no match for my ankle pain…

I had apparently been trying to live my life on a partially torn tendon for almost a year. The explanation was a relief: at least I wasn’t crazy.

He recommended surgery. And so the wheels were set in motion.

The date was to be July 20th. It was only the last week of June. I was prepared to hunker down in my cam walker and wait. And wait. And wait.

But after only a week, I got a call from the nurse. There was a cancellation for this Friday. Would I like to come in for surgery on Friday? Heck yes, I would.

My foot before ankle surgery in the hospital

Last views of an intact ankle

And so I went in for tendon repair surgery (as well as a just-in-case arthroscopy of the talus to rule out any operable dysfunctions in there) on Friday, July 6th. I was expected to be good to go back to work by August.

It’s September now. And I’m still sitting in Starbucks, typing away, my ankle only just out of the cast after a second surgery.

The first surgery was semi-pointless. Apparently the MRI was wrong. There was inflammation & scar tissue but no tear.** So it was back to feeling like I was crazy. Why had my ankle still hurt so much? The procedure did little but give the doctor a chance to debride some inflamed tissue–and introduce a rare Staph infection into the wound. I found that out while trying to limp around Chicago while visiting my family recently. I was walking by that point with only one crutch and doing my rehab exercises every day to only slight improvement of mobility. By the end of the trip, however, I found myself bleeding through my sock nightly, even though the wound should have been closed by that point.

Post operative view of my ankle

Not for the squeamish…sorry for the ick.

A reexamination by the doctor and PA heralded the revelation of my third cellulitis in a year and reintroduced me to heavy doses of antibiotics.

And, as you all have probably gathered by now, not only am I allergic to the antibiotics I was given, but they also did diddly squat in killing the Staph. Hence, surgery number two.

Swollen ankle after surgery

Swollen a month after surgery, with no sign of abatement…

And that’s where I’m at. My ankle, which has pained me in more ways than just physically for the last year, is atrophied to a point where the difference in size between my two legs is almost comical. I am out of my cast as of Monday, but the new wound is still open, so I have to sit here on my rear with my leg elevated above my heart as much as possible.

I start physical therapy next week, provided the wound heals correctly.

And then…what? I don’t know. Getting stronger, I suppose. I still don’t have an explanation for the pain, but maybe getting an explanation isn’t what’s important.

At this point, as horrible as this year has been, I’m nothing but grateful for the problems with my ankle. Because if I hadn’t felt that little tweak, hadn’t had to change the way I worked out (the intensity, the frequency, the type), hadn’t had to spend days sitting on the couch, hadn’t had the impetus to start this blog…well, I might very well still be in Florida, wishing for a different life.

I joke, when people try to express sympathy for my now-scarred, lame ankle, that I’m glad that all I had to give up was one limb in order to get back my whole life. And this too shall pass…

So today I am grateful for injury. I’m grateful for being forced to slow down. I’m grateful for being forced to own my experience in my own body and for learning that even with its imperfections, it’s still a pretty good body with a lot more strength than I ever thought it could have.

Today I am grateful for baby steps. And I’ll keep on taking them, one tiny step at a time.

-K.

*For those of you keeping score at home, I’ve had, to date, two X-rays, two MRIs, and a bone scan on my ankle.

**The post-op report says that the arthroscopy revealed softened but not deformed cartilage in the central talar dome (probably from the lack of use and the the extended time in the cam walker). There was also a build up of inflamed synovial fluid around the tendon, as well as scar tissue that needed to be removed from the tendon. In order to facilitate healing, the doctor removed the scar tissue and then introduced micro-tears into the tendon, which actually force healing–much like the micro-tears introduced into your muscles every time you work out forces the muscle to heal stronger and grow. He also noticed that the belly of the tendon is positioned lower than anatomically normal, which can cause a higher rate of injury, so he shaved that part of the tendon as well. For a REALLY great resource that explains a lot of this in an easy to read an understand way, check out this link. (I just found this, but I wish I’d had it when the doc was explaining my situation to me…)

And just because I found this interesting, a direct quote from the post-operative report: “There was abundant anterior lateral synovitis which was beefy red and irritated looking.” I don’t know why that particular description made me chuckle, but it did…so there you have it.

We Interrupt This Program…

…for a couple of random updates and thoughts:

– First and foremost, the surgical procedure was short and simple, and now my ankle has no choice but to heal. The doctor put me in a hard cast this time so that there would be less chance for reinfection. So now I’m once again hopping about on crutches, but hopefully for the last time.

cast, crutches, surgery

The doctor chose a white cast–don’t they know that white is taboo after labor day?

– The allergic reaction also appears to have calmed down. It still hurts to run my skin under hot water, but I ate grapes without dying, so I suppose that’s a good sign.

– Most importantly, I am absolutely flabbergasted by the response to my blog. It’s funny: when I started writing a few months ago, I was just planning to share this new way of eating and living that had helped start to free me from my ED, and it’s become so much more. As I started to explain why I first ate red meat after 13 years, I fell down the rabbit hole that was my introduction to ED, and in the process, was forced to face some of my hardest truths–truths from which I’d hidden for a very long time. And that inspired me to go out and seek help.

But nothing has helped so much as your support, and your willingness to share your own stories.

And I can only hope that, as I get through my story and start sharing solutions, that you will continue to share your stories with me. I can only hope that this blog becomes a place for recovery–not just for myself, but for all of you out there. I can only hope that we can, together, find a way to stop becoming a nation of starving girls, yo-yo dieters, fad dieters, overweight-and-hating-it, calorie-counters, over-exercisers, and people out of touch with our own bodies. I can only hope that we can all work together to find a solution.

Anyway, I promise to keep up my end of that as best I can, and I hope that you’ll stay with me–and invite others–along the journey.

Dog, Babysitter, Puppy Love

Home after surgery, with a dog on my shoulder!

Thanks for sharing the love, guys.

And now back to your regularly scheduled programming!

-K.

P.S. Be sure to check out my spiritual bucket list below. Maybe it can be inspiration for one of your own?

A Spiritual Bucket List

I’m going in for a minor surgical procedure in a few hours (and let’s hope this is the last one), and I’m feeling reflective.

I’m scared to go back to the doctor, but I know that this is the last time I will have to deal with this. I’m looking at this whole year-plus long ankle debacle as a message from the universe:

I’ve spent the last 10 years fighting for control over my body, and I’m finally coming to realize that it’s not mine to control. I assumed that I had the right to do whatever I wanted to it, but it turns out that I’m lucky to have been given permission to use it as I have. And, like a rowdy, disrespectful hotel guest, I’m responsible for any damages that I leave behind.

Looking down at my mottled and swollen skin (by-products of the past week’s allergic reaction), my atrophied calf, my bruised and scarred ankle…I’m realizing that I have no choice but to accept the body that I’m living in and to use it only to make a better life for myself. I read an amazing quote in Perfect Girls, Starving Daughters by Courtney Martin, one that I’m making my mantra: “I will meet my body where it is.”

In order to do that, though, I have to grow. I have to come to terms with the “me” who is not my body. It’s scary, uncharted grown up territory, but it’s time: I’m approaching 26, which always seemed like such a foreign, grown up land to the younger and more naive me, but here it is–and I’ve made it here without a map or stars to guide me. But I think it’s time to stop feeling my way through the dark and hoping I’ll end up somewhere comfortable.

I’ve realized that a lot of my “growing up”–my spiritual growth and my ability to relate to my mental and emotional needs–got stalled and stunted when I began my relationship with ED at the ripe old age of 13. But I’m ready to stop making excuses for myself and to double my spiritual age (from 13 to 26) in a much shorter amount of time than it took to keep it from growing.

So I’ve decided to make a “Spiritual Bucket List”. And I’m posting it here because I want to be accountable. I’m ready to take responsibility for myself. So, here goes:

– I will be honest–to myself and others–about my needs.

– I will articulate my needs.

– I will learn how to communicate without complaining.

– I will stop apologizing for my life.

– I will stand up for myself.

– I will set boundaries and communicate them effectively.

– I will establish a relationship with my higher power.

– I will stop making my higher power food and ritual.

– I will keep in touch with the people who enrich my life and let go of those who don’t.

– I will learn how to ask for help.

– I will seek friendship and fellowship–because the disease thrives on isolation.

– I will stop waiting for tomorrow and start living one day at a time.

– I will stop sweating the petty things (and I will never pet the sweaty things!–thanks Grammy :D)

– I will accept that I’m allowed to be happy.

– I will not engage in negative self-talk.

– I will not play the victim because I have the power to be a hero.

– I will actively work on figuring out what I want from life–and I will go out and get it.

– I will take responsibility for my life.

– I will stop blaming and living in the past.

– I will stop being afraid of success.

– I will take risks and stop being afraid of mistakes–they’re meant to be learned from.

– I will use my talents to help others whenever possible.

– I will stop being afraid to love and be loved.

– I will meet my body where it is, every day.

That’s all for now, although I’m sure the list will grow as I do.

-K.