Lara’s Story (the long version)

OK. Are you sitting down? You may as well get as comfortable as you can be right now. This is a long story. And it’s not over either. Same goes for you. If it were, neither of us would be here right now. So here we go.

I first became “a patient” over 30 years ago at the age of 16.
Since then, I have had 17 surgeries and been on crutches for a total of 15 years.

It all started in 1991 in a soccer game at the start of my junior year in high school, where I experienced a medical emergency out of the blue. Waiting for the ball, I suddenly had the worst pain I’d ever had in my right leg and I could not move my foot. My teammates told me I put my hand up to be taken out of the game, but then fell onto the ground. When I arrived at the ER, the doctor on call told me I was being a ‘crybaby”. “There are no breaks to the bone and your pedal pulse is fine. Please go home we need the bed.” After my 2nd return to the ER, the pain was so bad I could not sleep, move, or stop howling through the night. In the morning, a doctor who had served in the Korean war and “seen this kind of thing.” He told my mom it is an emergency, bring her straight back and make sure she has nothing in her stomach. We need to operate as soon as she arrives. I remember I’d been spoon fed ice cream that morning (my mom was worried because I’d eaten nothing for a day). It turned out I had an exceptionally rare muscular condition (I became only the 2nd documented case in medical literature - the first guy lost both legs and almost died.) But even once in the OR, my leg was in serious trouble. You are supposed to operate within 6 hours, after which your affected muscles start becoming necrotic from being literally squeezed to death. My shin muscles were already dying and my foot was still paralyzed. They started with two little slits on either side of the shin muscle to relieve the pressure. But it was not enough. I screamed in unimaginable pain for a whole day. They told me I should not be in pain because they had relieved the pressure in surgery. So they stuck a big needle in to monitor the pressure. Again I was told I was overreacting — that is, until my doctor came in and realized the pressure monitor was in the wrong place. He stabbed it in as quickly as he could into the correct place and rushed me into another emergency surgery, the pressure being off the charts. My leg had to be split open from knee to ankle this time around. But the pressure had built to such an extent my leg more or less ‘exploded’ into a wound that was 14 inches long and 5 inches wide at its widest. The surgeon informed me he was “this close” to amputating but I was a lucky girl and he decided to see if I could heal. The gigantic wound was still partially open a full year later and required daily dressing changes (the necrotic tissue continued to ‘ooze’, so the sticky gauze must be forcibly pulled apart from all the dead tissue - my daily torture). I lost most of my anterior tibialis (shin) muscle. (In another essay, I shared photographs taken of my leg several months in, (e.g., warning: graphic image.) In the beginning, it was so bad they put a sheet between me and it so I could not see it for the 6 weeks in hospital. My sister held my hand during one dressing change with the intent to watch and show me it wasn’t so bad. She ended up running to the bathroom to vomit.

After 6 long weeks in the hospital (they threw me a goodbye party upon discharge), I was in a wheelchair or bed the rest of the school year.

Here’s the craziest part. Believe it or not, after narrowly escaping the amputation of my right leg, the disorder erupted in my left leg as soon as I was out of a wheelchair and onto crutches using the “good” leg. Now I was at risk of losing my left leg even as the right one was healing.

Doctors told me it was like I’d hit the lottery twice, but the bad kind of lottery.
I became a “medically interesting case.”

Cue several surgeries on the left leg now, the first one - again!? - they made those insufficient small slits, which led to another emergency to slice open this leg knee to ankle. This all took a very long time. I missed a lot of high school, college too.

The acute exertional compartment syndromes in my legs was finally resolved sometime in college after many surgeries, including a couple just to close the original scar on my right leg from an enormous gash into an elegant single little line. Actually the scars on both legs look now like huge parentheses. I used to say they were the parentheses between which I had to live my life. I was very limited and felt my constraints keenly. And I was not like the other kids.

I felt very alone.

In the years after the doctors declared the original problem “fixed,” the pain persisted. A few doctors told me “the pain is all in your head” since they could not explain it. I tried everything for years (cortisone injections, PT, medications, rolfing, acupuncture, diet changes, devices, bed rest, you name it). At the start of each new treatment, I felt hopeful and optimistic, but by the end, was dejected and despairing. Racing around seeking relief was like riding a rollercoaster. Hope races perilously high before it comes crashing down. It was devastating, over and over again. I became more and more demoralized.

It wasn’t just pain either. I accumulated so many diagnoses I should get an honorary M.D. The original diagnosis, Acute Exertional Compartment Syndrome, was followed by Complex Regional Pain Syndrome, Central Sensitization Syndrome, Chronic Fatigue Syndrome, Adrenal Exhaustion, Fibromyalgia, Mast Cell Activation Disorder, IBS, Enteritis, Endometriosis, Diverticulosis, atypical Migraine, Anisocoria, Hyperhidrosis, Exercise-induced Uticaria, degenerative Osteoarthritis in my back, Labral tears in both hips, and so on. I was somehow always that ‘one in a million’ who got the rare rash or severe reaction. I had to spend a year in bed at my mother’s (bless her!). I was beyond exhausted, finding random lumps on my neck upon waking, and not tolerating more and more foods until I was the skinniest I have ever been.

After a while, I did recover from the pain in my legs and experienced stretches of good health. That is, until the pain started again in my left leg. Apparently I had developed several deep neuromas in my left leg, an all too common complication of deep cut surgeries. These had to be surgically removed. Because the nerves in question were sensory and not motor, the surgeon ‘cut and buried’ (killed) them, and I have remained pain-free in those nerves since. I eventually walked and even hiked, an enormous smile on my face.

Here’s where the story takes a turn.

Those first 15 surgeries were successful, in spite of the brutal months (years) in rehab I needed each time.

It was surgeries 16 and 17 that went sideways. For the last 8 years, I have had non stop debilitating pain in a different place along the peroneal nerve behind my knee. I have not been pain free for even a second since 2017.

Apparently, the peroneal nerve (which branches out from the sciatic nerve and enables you to move your foot) had become entrapped in scar tissue and strangled by adhesions. “No wonder you couldn’t walk!” said the surgeon. All this resulted a severe knee contracture. To this day, I cannot straighten my left leg or lie on my left side.

It was Christmas Eve 2018 when I had my “last hope” surgery (# 16 for all those of you keeping track). TLDR: It failed. (Later on, I learned that the surgeon’s immobilizing my leg post-op meant new scar tissue was allowed to run rampant during a critical window. Oops.) The pain got worse. It was devastating to my body, my relationships, my career, and my confidence. By then, with all the doctors’ disbelief, I could not even trust my own perceptions of reality. I was losing hope. I was losing it.

In my desperate search for relief (sound familiar?), I stumbled on the Curable app in 2019 (thanks, Facebook). I dove head first into the science of brain-based (i.e., ‘neuroplastic’) pain. I learned how to calm my nervous system and turn down the volume on the pain. In spite of the contracture and ongoing nerve pain, I even began to walk again. First to the lobby of my building. Then to my mailbox. Then, miraculously, for miles. “The work” changed me to the core. I was more empowered than ever before. It felt like I could fly.

Ah, but wait for it!

My pain story does not end there, folks. (Do you relate?) In the spring of 2021, the persistent nerve pain in that same quarter-sized spot behind my left knee became unbearable. Soon, I was bed-bound again, unable to work. By then I’d become a mindbody coach and was seeing clients in spite of constant 7-8 pain. One day I showed up on zoom, and my client said, “My god, you look awful. Go take care of yourself.”)

The knee contracture worsened such that my foot could not reach the ground when standing. Boy, did I still resist the idea this was ‘structural’ for a long time as I worked my mindbody tools to the max. But nothing touched the pain. So back to the medical world I went. (Even Dr. John Stracks said, I do not usually say this, but this is clearly structural.) This was not easy for me as it was the source of so much trauma. Many of my doctors (not all - some were nice, I swear!) had invalidated, dismissed, and gaslit me. A couple doctors even did things to my body without my consent (one took a scalpel from his pocket during a routine visit and sliced a necrotic growth from my leg before I even knew what happened).

The only way I could muster the courage to see another surgeon was all the empowerment work I’d been doing. It also gave me the voice to advocate for myself when they were not listening to me. (Thank you, “the work!”) And my god, did I advocate. My doctor and I even ended up looking at the MRN (neurography scan) together. I pointed at something and asked him, “what’s that?” He said, “hmm, that’s a small ball of something that is exactly where your pain is.” Uh oh.

So off I go into surgery # 17, this one to repeat exactly what # 16 had done but with a new surgeon. Unlike in 2018, in 2022 we would get me moving immediately post-op. The two main surgical risks: losing function of the lower leg and making the pain worse not better. That surgical report read, “the nerve was completely matted down by a tremendous amount of scar that adhered the nerve to a nearby tendon.” When I woke up my leg was paralyzed from the anesthesia. I had to wait 24 terrifying hours before knowing function would return. But the pain, oh the pain. (Did I mention I had become allergic to all opiates in my 20s? Every last one of them. A for effort, Tylenol and Advil.) In acute post-op pain, I still had get the leg moving immediately, or else. More torture. (‘Hitting a nerve’ is a saying for a reason, folks.) Rehab was long and excruciating. (Actually, rehab really hasn’t ended yet.) I did learn how to walk again without crutches and had some reduced pain for a glorious couple months.

Guess what happened next?

Yes, we don’t even need to go there, do we? You know what happened. The pain soon became disabling once again. (I am sure you don’t want to hear this. That makes two of us.) In May 2024, the pain was so intense I had to stop working. It was like pulling teeth, but I had to close my practice for a while to attend to my own health. It took several months in an intensive physical rehabilitation program, but I became able to go for walks in the woods again. Deja vu much? It began again in April 2025 and it is almost September as I write this. Round 2 of that same intensive program again, here we go. (Wish me luck please!)

So here’s the deal: I don’t even know what is ‘structural’ and what is ‘neuroplastic’ anymore. I certainly have some learned, well-worn neural pathways in that spot. But I do know it is not a binary as it has almost universally been represented in my field. (I am proud to say, I am part of the reason this is changing — I am nothing if not persistent as hell now that I am on a mission.) At this point, it does not matter to me which kind of pain it is. My peroneal nerve problem is inoperable now in any case. I’ve even considered drastic measures, but removing the leg could make the pain worse, and killing the nerve would mean I’d never move my foot again. Not optimal.

I am learning for the umpteenth time now (deja vu all over again): reducing my ‘stress bucket’ does help turn the volume dial down on pain intensity, even if the pain remains. Research confirms that stress amplifies pain, no matter what its origin. Training the nervous system to calmly ride the waves of life can reduce pain intensity.

Enough about me - how does all of this help you?

After all I’ve been through, believe me when I tell you I have learned a lot. I have had to dig deep. And then deeper still. Especially when the shame and self blame hit, which it is bound to do when the message out there is that “healing” is only achieved when you are symptom free. Chances are, you’ve felt this too?

So at the very least, I want to share my hard-earned wisdom, damnit! It helps me to help you.

Shouldn’t all my suffering go to good use, so that the pain not be wasted?

Despite the persistence of this pain, I still have hope. I still believe in healing. My situation is just begging me to reimagine what hope and healing look like for me (and for you too, if your symptoms linger no matter how much “work” you do).

The old kind of hope isn’t working anymore. The one that says I hope I can be like those success stories and be symptom-free… like, tomorrow!) That kind of hope is more like a hammer bludgeoning me every morning I wake up and it’s still there.

So I have found a new kind of hope: I hope I can harness all the control I do have (amidst all the control we don’t have!) and make my life full and rich, today, right in this moment, even in the face of pain and limitations. There is so much hope in what we do not yet know. You can never truly know what is possible in the future, can you?

This is not a story about a leg, or a nerve, or even a person.

This is a story about reimagining hope and redefining healing.

My life feels like it is bursting with joy and love and creative inspiration these days. I met the love of my life, and bonus!, he comes with two incredible kids. Instant family - add water and stir. Who knew? I gave up on being a mother a long time ago, and here it has shown up for me in a different form. My old dream was to be a tenured professor, but here I am on a creative tear in a new field — writing, public speaking, putting my ideas out into the world (and as an ‘expert’ no less). I get to reimagine my work continuously so it evolves with me.

None of it is perfect, far from it! But who or what is perfect in this world? Some days it feels too hard to make the most of my one wild and precious life. It’s a messy endeavor, but I’ll take messy every time.

Here is what I know for certain:

I have made my life bigger than the pain. And you can too.

This is how we heal.