Short film tribute to my PAO recovery after the first year: https://youtu.be/4T3KIPRloTE

At 26 I found my husband crushed under a run-away truck. At 27 I found out I had breast cancer and had bi-lateral mastectomies. We both spent years in rehab and between pain and PTSD, there wasn’t much left for our marriage. He wore a 24 hour release fentanyl patches daily and a back brace to get through the day. I needed Valium every four hours for months to breathe as my pectoral muscles spasmed badly being pulled across the gel implants. Five years later, inconveniently when I had my first son, the stitches holding the implants ripped out and I had to undergo reconstruction surgeries again. I couldn’t lift my five month old for two months. I know I’m not the only one who has struggled with life challenges. Everyone has their cross to bear. The point is, I was no stranger to suffering when my hips failed ten years later. And I can honestly say, the year of recovery after my labrum replacement and PAO was one of the darkest years of my life. So to those who are on this journey: know that it can be a rough one but there are lessons to be learned, you may come out better in the end, and there are people out there like myself who understand the struggle with chronic pain and the brutal recovery.

The Diagnosis

After enduring two painful pregnancies (and c-sections) with failing hips, I finally got a hip X-ray and found out at 38 I have hip dysplasia. Within months there was dramatic decline. I couldn’t walk up my stairs anymore, ride a bike, hike, climb or ski and I’d tried many months of pt that only caused more inflammation. I saw my life slipping away. I was in pain and angry all the time and could not do house work or bend down to play with my two and five year old boys, so they avoided me. I was referred to Dr. Brian White in Denver. He assured me it was nothing I did or didn’t do, it was only a matter of time. He said I was born with hips that weren’t very well designed for weight bearing. He wanted to help me get back to my activities but he said I should think carefully. If we did a hip labrum replacement on the more symptomatic side, I should consider how I want to spend my hip credits going forward.

After the surgery, Dr. Presley Swann came in and said he’d seen my cartilage during the surgery. It was shredded due to the unnatural forces being exerted by my shallow hip sockets. He and Dr. White agreed my new labrum wouldn’t last long unless they changed my mechanics and gave me a wider weight bearing surface by rotating my hip socket over my femoral head. Dr. Swann proposed the odious feared PAO. On Oct 22, 2018, ten days after my labrum replacement, I went under for the second surgery and had my hip socket cut out and rotated and screwed back together with five screws. This was the beginning of one of the darkest years of my life. On the one year anniversary of my RPAO, it serves to look back and see how far I’ve come, even if I’m still working on getting stronger and am unsure what the future holds.

Exercises in Suffering

Looking back, having my breasts carved out followed by a series of reconstruction surgeries was hard in its own way. First, it was awkward to talk about, so it was lonely. I couldn’t lift my arms for months and I was a harpist, rock climber and geologist. I didn’t bother putting nipples back on because I was sick of surgeries. I had developed infections, had to re-do my incisions, and my drains clogged up. It was so searingly painful Valium and Percocet didn’t remedy the pain and I needed help sitting up for months. Eventually, I was able to try upper body strengthening again. Then pull ups. Then climbing. Though he’d been run over and I’d had cancer, my husband and I clawed our way from the deeps, trained riding Century rides and doing triathlons, then climbed the Matterhorn and Denali unguided. On our five year anniversary, we went back to where we met on a snow and ice ridge in Chamonix, France and at the very moment we were topping out the last pitch of the climb, a father leading his small son up the route with no protective gear, fell and died before our eyes, pulling his son down with him. The little boy survived but his little voice yelling “PaPa!” echoing around the glaciated cirque will always be with me. It seemed our marriage was doomed. It was all too much.

After my husband and I went our separate ways, I met a sweet man from Tennessee while rock climbing and we became inseparable. We made a happy life and a family, and once my hips started to fail, he was instrumental in helping me get the courage to go through with the PAO surgery. He said he would support me, care for the children, and help me get strong and healthy again so we could get back to doing all the things we loved together. It takes courage to take risks and it takes resilience to generate hope when you’re in constant pain. Without the support of my family, I don’t know if I would have had either.

 

Surgeries and Hospital Time

I was so scared going into the PAO surgery, though I’d had plenty of other serious surgeries, I struggled to control panic attacks. The night before the surgery I made an “Ode to my Hips” album to celebrate all they’d done for me. The morning of the surgery I covered my legs in inspirational sayings and practiced breathing and positive visualization meditations. After the PAO, the pain was managed well with an epidural pain pump in my spine that kept my leg mostly numb, but I had lost a lot of blood. Whenever I tried to take a few steps I would pass out. I had met my friend Trina on the Facebook PAO group and we realized she was having surgery the same day, coming from Wisconsin, with the same surgeon. We were in recovery rooms a few doors down from each other, both stayed for five days, and both had passing out episodes. Due to loss of blood, I was given two blood transfusions and was able to stand longer. After transfusions, I was able to stand longer and made it to her room for our first social in person. For the next year we texted nearly every day at all hours, we shared x-rays, exercises, progress, setbacks, doubts, frustrations, care packages, videos of us getting stronger, pictures of our scars, questions about pain, and challenges with family and community that didn’t fully understand our painstakingly slow progress, though we both attended PT twice a week for nearly a year.

In this year I became highly empathetic towards the struggles of those with limitations and chronic pain. I also realized how debilitating deep depression can become and how important it is to reach out to friends and family for support when you can not pull through such challenges alone. While the PAO can be for many an extremely painful and slow recovery, the psychological toll is also significant and I wish I had pursued more ways to cultivate a positive outlook. It was also enlightening to see, yet again, how vulnerable those with chronic serious illnesses requiring repeated hospitalizations and extended time off work are to financial challenges with our current healthcare system.

Leaving the Hospital

To leave the hospital I had to be able to navigate stairs and getting in and out of a car and the shower. The PTs at the hospital came in twice daily from the day after surgery and helped me achieve these goals. I tried the terrifying challenge of getting up and down three stairs so I could get home and into my house. I managed to get in and out of the practice car and took a shower the day I left the hospital. It was scary being attached to the pain pump and trying to get to the bathroom, particularly during the night shift when nurses were less responsive and occasionally left me sitting in the bathroom unable to navigate safely alone back to my bed. My leg was strapped into the leg mover for hours at night, and some knew how to adjust the straps while others didn’t. Being on the orthopedic floor, there were experienced nurses who knew how to coach me through pulling up on the hanging bar to sit up and move forward on the bed. Then some would gently lower my leg to the floor while I tried to turn at the same time, while others would just drop it, leaving me reeling in excruciating pain. Getting to the bedpan chair next to the bed was a major daily challenge. After a few days I could make it to the bathroom, but some days I would only make it half way to the bathroom, and would have to go back to the bedpan as I felt too weak to make the full trip. Five days later I fearfully left for home, and moved in with my parents who cared for me day and night along with my two children, so my husband could keep working and supporting our family.

Caring for me was a huge job, bringing medications and food and helping me to the bathroom and to shower while taking over all the jobs I did to care for my children. I tried to take a shower every day and get dressed to feel human. I could not drive for 2 months as my hip flexor was too enflamed and it was my right gas pedal foot I needed to use. I was not an easy patient to be around, so people avoided me, including my husband and children. My parents did their best to keep me comfortable and help me cultivate a positive outlook, but at 6 weeks I needed to move home to my house to try independence. Though it had stairs and I ended up staying mostly in my upstairs room for the next few weeks, I needed time to generate the will to be hopeful and to begin to feel independent and strong again. I am forever grateful for all my parents did for me and our family to help me through this debilitating time.

Complications with a DVT

Two weeks after coming home I had a new soreness in my calf. We discovered it was a blood clot or deep vein thrombosis (DVT) down my leg. The pain in my leg was dull and unremarkable and there were no signs of inflammation or discoloration so when we went to a nearby clinic we were told it was probably nothing and were sent home with no imaging. The next day my mom, having had nightmares, took me to another imaging clinic and the mri showed a blood clot all the way down my leg. I took blood thinners for six months which caused me to have a near constant heavy period, a certain challenge when it is already painful to sit and get in and out of bed.

Pain Management

After the epidural pain pump ran out after about 4 days home, gel ice packs were my constant friend along with tramadol, gapapentin, valium at night, Flexeril and Tylenol during the day, prune juice and bran muffins for constipation, and pillows to prop my leg. Nights were murder for weeks with my foot strapped into a foam prop and valium was the only thing that helped me rest. Restful nights were the only way I found improvements in pain management the next day. Sitting up, standing, walking, riding in cars any distance were all extremely painful for months for any amount of time exceeding ten minutes. It took months to be able to engage in any activity for any duration without needing to lie down. I wondered if I would ever recover or if this was my new norm. As inflammation went down, I used heating pads increasingly to manage spasms and hot showers to avoid taking muscle relaxants that made me tired. I managed to get off all opiods except Valium after the first month and used Tylenol and rest whenever possible. If I couldn’t sleep due to pain, I would rely on Valium to be sure I could get the rest I needed to recover.

Goal Setting and Filling Time

I wanted to go to my son’s Halloween party two weeks after my surgery so I pulled costumes together for the whole family the week before the surgery. I decided to ironically be a butterfly. I couldn’t even walk no less fly, but there’s always dreaming. I was so pleased to crutch my way down the long hallway to watch the parade and sit in his classroom with all the activity swirling around me, even if I felt faint after 30 minutes and had to leave. These small goals punctuated my recovery. The first shower alone, the first time out of the house alone, the first drive alone, the first bike ride, the first ski, the first indoor rock climb, the first outdoor rock climb, the first time swimming a mile without kicking, the first time swimming a mile with kicking, the first 20 mile bike ride up Lookout Mountain, the first time hiking up and down the steep climbing approach trails in Eldorado Canyon and the Flatirons, and the first time carrying my share of the climbing gear.

I had to get outside as I was going crazy being in bed so much, so we wheelchaired with my two year old on my lap along Clear Creek Trail in Golden, CO on sunny days. I crutched around Sloans Lake in Denver 3.2 miles several times so slowly, just to be part of the world. I skied to a hut with my family, and iced while there then iced when I returned, then iced in the car the whole way home. The drives to the mountains which vibrated and irritated the already irritated hip flexors were brutal, but I hated to be left behind any longer.

With my many hours lying in bed, since sitting was never comfortable or restful, and after getting bored with hours and hours of Netflix, I made a website for our community garden. To get myself walking more I downloaded apps that counted my steps around the house and set alarms to get out of bed regularly and take short walks. I listened to relaxing music and podcasts while doing some digital housecleaning. I relied heavily on our Facebook PAO support groups and during the holidays made myself make a video and share with the group every day some uplifting music so we all didn’t feel so alone.

When my bone gaps did not appear to be healing quickly, I started taking D3, K2, Magnesium, and calcium along with green protein shakes. I rolled my quads with a Tigertail roller and a foam roller to manage spasms and used a small rubber ball to manage knots. The task always was to keep moving, keep engaging, keep pushing until I could no longer and then rest and try not to judge my slow progress. I always overdid it, which I’m sure didn’t help with recovery, but it was always hard to know where the line was until I crossed it. I was accustomed to being able to power through weakness to get strong, but this recovery was different. It was tricky to maintain and develop new strength with inflamed hip flexors, and though my PTs were very careful to give me specific exercises that would protect the hip flexors, recovery still felt like a waiting game.

Physical Therapy and Strength Training Activities

After months of PT twice a week with North Boulder Physical Therapy working with Karen who had had a PAO herself, Dan who understood I wanted to rock climb again, Michelle who understood I loved skiing, and Lilly who knew I enjoyed endurance sports like biking and hiking with big packs, I could eventually balance on the operative leg. I cried every day at PT I was so frustrated with having a severe limp, inflamed hip flexors no matter what I did, and a spasming back that again required daily Flexeril and Valium just to walk my son to the front of his school and lying on a full length electric heating pad daily to get my back muscles to stop spasming.

Occasionally I would cry when I would see a small improvement and I realized those were tears of hope. I really didn’t believe I would heal and feared a life of chronic pain. I tried swimming, skiing, climbing, biking and hiking to make my leg muscles engage, but there had been a lot of atrophy being unable to move much the first few months due to muscle spasms and nerve pain. After 8 months I finally turned a corner, my glutes engaged more quickly and I was able to progressively ditch my wheelchair, then mobi-leg crutches, then cane after about 8 months. My PTs said they didn’t see a lot of progress for a very long time, but at around 8 months I turned a sharp corner and was able to actually start strengthening exercises without so much inflammation in the hip flexors and spasming in the back, glutes and adductors.

Looking Forward

Every time I got out for a walk or an activity that didn’t hurt so much the colors seemed brighter, the sky clearer, the breezes fresher. I had asked myself over and over if I could be happy if I was unable to do everything I loved. What kind of life would that be? As I found joy being with friends and family and taking short walks and enjoying being a more engaged part of my community, I realized being able to connect with family and friends in various ways that weren’t necessarily active, was all I needed to harness joy and that was a great relief.

Though I expect I have another year of strengthening and a lifetime of carefully balancing and maintaining strengths, I am grateful for what I can do. I seem to have Meralgia Paraesthetica, or numbness in the outer thigh, particularly after hiking and or wearing a pack for a few hours. This numbness is apparently caused by pinching of the lateral femoral cutaneous nerve, and I wonder if I will need to get my screws out in the future, but I’m able to bike, climb and ski and while I don’t expect to pursue long distance endurance challenges again, I hope to be able to climb and play the harp for many years to come. If I have to have a second PAO on the left side, which is also symptomatic and has a destroyed labrum and damaged cartilage, I will cross that bridge when I come to it. In the meantime, I will be getting after it while the sun is shining.

I can walk now without a limp most of the time and my husband is starting to call me his rope gun because I didn’t care before who put the rope up so much, and now I want my body and mind to be strong so I never skip my lead turn and I enjoy it like a honey badger chasing a tasty snake. My worst fears of never getting back to things I loved haven’t come to fruition, and I appreciate every day in the outdoors now even more. I know my time is limited on these hips as the other side starts to fail, and I’m not without pain, but I do what I can do and try not to worry about what I can’t.

I’ve never felt so alone and so fearful and been so mired in grief as those months after the PAO lying alone for days watching my family swirl around me, trying to care for me while getting on with their lives, wondering if I would be able to recreate ever again with my two and five year old boys. During the years of hip pain through the two pregnancies with 50 pound fluctuations on hips that couldn’t hold me up, the struggle to get my physicality back, the final break down of my cartilage, the hip dysplasia diagnosis, the phasing out of all the activities my husband and I loved to do as pain increased, I wasn’t sure we’d make it as a family. We became alienated from each other as he tried to care for our family alone and stay centered and maintain his health while caring for a grumpy limited partner. I am thankful my husband is inherently an optimistic person, encouraged me to do the surgeries, and always helping me see there could be a rainbow after the rain. He carried the light of hope when I could not.

We were recently able to take my 70-year-old Dad up a Flatiron on the ridge where I did what I thought might be my last climb ever before the PAO. As we were climbing the final pitches, a fast moving lightning storm came in and we heard a crack over our heads. We did not know, as we scrambled to do an emergency rappel to get off the exposed ridge that on the other side of the ridge, a young man who was hiking with his wife was hit by the lighting crack and lost his life. As I start to get my active life back and see others struggle around me as they lose their abilities due to physical limitations, depression, aging and circumstances beyond their control, I know how tenuous and fleeting our physical agility is, how important it is to cherish the moments of deep happiness and contentment, and how important it is to appreciate and prioritize our physical health while we have it. I believe I’m on borrowed time now and do what I can to limit my activity so I can get up and get out the next day, but I don’t resent my losses and limitations. I’m just thankful for all that I still have. My glass will forever be, at the very least, half full.

The lesson from this condition Hip Dysplasia is that you don’t ever finally arrive at a final destination but instead work daily at a lifestyle and work towards improving life habits that allow you to fully engage in a healthy full life no matter your limitations. We learn to maintain a positive outlook, whatever circumstances may present themselves. Through these efforts we become stronger at alleviating the fears that we will never be enough, or that we will never be able to withstand the worst life can challenge us with. We learn to embrace what is a given at the moment, put one foot in front of the other as allowed, and recognize the present is all we have.

I realize now many of us are in the subconscious place believing we will have arrived when we are stronger, have finished our check lists, have lost the weight, have accomplished the goal, have pushed through the obstacle. And while goal setting frames a life we create for ourselves, we only get to enjoy it when we recognize the mantra “You already have everything you need to be content. Your real work is to do whatever it takes to realize that.”

So I try to be in the place now that acknowledges and makes peace with this poem I discovered during rehab and recovery:

“Some days are better
Some days are worse.
Look for the blessing instead
Of the curse. Be positive, stay strong
And get enough rest.
You can’t do it all,
But you can do your best.”

Author: Erin Newton, right PAO 10/22/18