My Story

“Oh to tell you my story is to tell of Him.”
My Story, Big Daddy Weave
https://www.youtube.com/watch?v=1TKAN-nAsu8

This is how it all began, how my life changed forever in an instant. How I became a rare medical anomaly. How I eventually became a success story for DRG neuromodulation therapy. And now, how I am becoming a passionate fighter for others living with chronic pain.

It was almost 4 years ago, June 2, 2013, to be exact, that started a journey I would never wish upon anyone. I was living in Minnesota completing a clinical rotation at the VAMC Minneapolis Polytrauma unit in my 4th year of optometry school. I stepped out of bed and immediately collapsed, not necessarily from pain or numbness, just that my right foot could not functionally bear any weight for some reason. I went to urgent care and was immediately referred to a local podiatrist. At this point I was in pain, and he diagnosed plantar fasciitis. Seemed simple enough – fairly common condition, and as a doctor-in-training I was on my feet all day, every day. He fit me in a CAM walker, RXed fairly high doses of anti-inflammatory meds, and scheduled follow-up in 4 weeks.

I started noticing some warning signs fairly quickly. As a neuro-optometrist, my specialty is eyeballs, head and neck, brain, and brain injury rehabilitation, but all doctors share some common training: basic anatomy and physiology, pathology, pharmacology, etc. I noticed that my pain was only getting worse and was more of a radiating burning pain that’s a red flag for neuropathy as opposed to musculoskeletal injury. The location of my pain was also more medial than where the plantar fascia is anatomically located, along the inside of my ankle and radiating down into my heel and up through my first toe. I also had a “secret weapon,” my Uncle Tim, who was a podiatrist and Chief of Surgery in California and my sounding board through all of this. In case you’ve ever wondered why they say, “Doctors make the worst patients,” this is it. We are taught to question everything, are curious and concerned by nature about adverse events, and have connections. In my case, this is what saved me, fueled my fight, let me know that just because one doctor says there’s nothing more that can be done, I know that just means there may be someone else out there with different training and experiences who may have answers. You’ll see later in my story how I’d have a much different ending if I didn’t have this tenacious attitude.

I mentioned the increasing pain and concern for the type of pain at my follow-up appointment, which is where I first heard about tarsal tunnel syndrome. The exact words were, “A true tarsal tunnel is relatively rare, and I don’t think we need to explore that yet.” He prescribed custom orthotics and physical therapy. I went through this treatment plan over the next 2 months until I moved back to Texas at the end of my clinical rotation. My physical therapist told me to continue my exercises at home, and if my pain hadn’t improved in another month, find a local doctor.

Less than a month after moving back, my pain had become more severe and impairing than a kidney stone I had once (throwing that in for reference in case you think I have a low pain tolerance). I found a local podiatrist, who immediately thought I had tarsal tunnel syndrome (there’s that word again) and ordered the necessary testing, one of which is a nerve conduction study, which checks for nerve function and compression. The testing indicated that my posterior tibial nerve was so entrapped that, in the words of the neurologist, I “was on the short-track for surgery” or risk permanent nerve damage. I went back to my podiatrist, who confirmed the diagnosis of tarsal tunnel and proposed that I be fit in a CAM walker and physical therapy.

Hold up…that sounds familiar. Didn’t I already do that for 3 months?!? I felt that the proposed treatment was too conservative for the amount of pain I was in, so I took my records and sought a second opinion with another foot and ankle specialist. He agreed with the diagnosis and felt I needed surgery, but “didn’t want to touch me.” He referred me to a highly esteemed orthopedic surgeon (specialist #4).

By this point, I was in so much pain that I was icing my foot and vomiting between patients. I finally realized that I needed to take a leave of absence from school. It was 2 weeks until I saw the orthopedic surgeon and then 4 days until my surgery was scheduled. My foot was completely immobilized at a 45 degree angle for 2 weeks after surgery until suture removal, and then it was 6 more weeks until I was allowed to fully bear weight. I asked if I needed physical therapy, and their response was no, not for a tarsal tunnel release. This was another short-sighted medical decision that I believe contributed to the chronic nerve pain and eventual development of CRPS. Even though the surgery itself may not require PT, it had been 5 months from initial onset of pain and presumed nerve entrapment to the actual surgery, and my ankle had been immobilized 3 of those 5 months. A significant amount of atrophy had developed. Some pain persisted, but having never had surgery before, I just assumed my foot would never be the same.

20131028_181413

My leave of absence totaled 9 weeks, the rest of the semester. This meant that I would not officially graduate until August instead of May. No big deal, right? Wrong, or so I thought at the time. Most residencies start at the end of June or beginning of July, meaning I would miss the match process for that year. I would have to find a job and then apply for residencies the following year, putting my career on-hold. In the grand scheme of things, one year may not seem like a huge deal, but after going to school for 8 years after high school working towards your career, you are REALLY ready to get your life started! However, I strongly believe that things happen for a reason, and here is where God truly intervened.

During my job search, I came across a private practice in Austin that was starting a residency in my desired specialty and asked if I wanted to be their first resident to start in August 2014. I had always had my heart set on a career in academia, but at least by taking this private practice residency, I would see a high volume of patients to hone my clinical skills, and I wouldn’t “lose” a year of my career. This turned out to be the least important purpose of having this particular residency in my life when another household accident in May 2015 landed me in urgent care again, this time for my left foot.

Because I am obviously super graceful, I tripped in my living room and somehow injured my big toe Deion Sanders-style. Urgent care ruled out any fractures and gave me a post-surgical shoe to wear for 2 weeks. Again, I noticed worsening pain and a weird popping, so I consulted my Uncle Tim. “Find a podiatrist,” was his answer. Those 3 words were the best piece of advice he ever gave me.

Now in a new city, I had to find a new doctor (specialist #5). By some combo of internet reviews, my uncle’s guidance on residencies and Board certifications, and a doctor who could see me during my part-of-one day off of my residency, I ended up seeing Dr. M. Her exam and an MRI revealed a contusion of the first MTP joint, so here I was again with first a CAM walker and then a cast (something to do with the way I walked and the way the boot fit me, I was still putting too much pressure on the joint for it to heal). During a routine check, I commented and she observed how swollen my ankle had become and how I was noticing a familiar, haunting burning pain. She evaluated and thought that I might have a varicose vein compressing my left posterior tibial nerve, AKA tarsal tunnel syndrome in the left secondary to vascular insufficiency induced by freaking BRUISING MY TOE. I literally cried in her office that day at the memory of all the doctors and missed diagnoses and severe pain and the thought of going through all of that again. Dr. M. was different, though. You could tell that she was well-read and experienced in the latest medical literature and seemed to have a genuine concern and compassion for her patients.

In September 2015, I underwent a left tarsal tunnel release, and, just as she had predicted, the culprit was a varicose vein. Her surgical approach and recovery timeline was also slightly different, and within 2 weeks I was fully weight-bearing. I was also in less pain in my newly-operated left foot than my right foot, which had now been forced to be the primary weight-bearer for 4 months now. She tried a cortisone injection, which provided relief for only 2 days but indicated that I may benefit from further surgery.

In December 2015, Dr. M. performed a tarsal tunnel revision on my right ankle, removing a lot of scar tissue and dissecting further along the course of the nerve than the original surgery. My pain was relieved and doing relatively well in physical therapy, until it suddenly skyrocketed back to that constant burning nerve pain. I was also starting to show some skin and vascular changes, which is concerning for the development of CRPS.

I ended up in pain management. Oral meds barely helped, had horrible side effects, and developed a tolerance very quickly. I underwent a nerve block, which only helped for 2 weeks. In June 2016, I had a cryotherapy ablation of the nerve, which helped, but not enough to discontinue the oral meds, and only for 6 weeks. The pain specialist I was seeing at this time wanted to try cryo again but more proximally (farther up the leg) in the hopes that the effects would last longer.

In September 2016, I had my second cryoablation. I went in thinking that this was going to help, it was just going to be a matter of by how much and for how long. I hadn’t entertained the thought that it wouldn’t work, or that it could make the pain worse. But that’s exactly what happened. This treatment threw my foot into a fiery chasm of pain more intense than I had ever felt before while at the same time causing my heel, instep, and first toe to become numb to the touch, yet in constant excruciating pain. This confirmed, if not triggered, fulminant CRPS, unyielding to anything, and it broke my spirit. That’s when I was presented with the plan to pursue the DRG stimulator and was transferred to my current pain management specialist, Dr. L. Hey, I know that name. He was the one that Dr. M originally referred me to! Everything was falling beautifully into place, with the exception of time. The more time in pain, the greater effect it has on your well-being. I needed to hold off on the DRG trial and surgery until after my sister’s wedding, so we tried the last traditional treatment for CRPS: IV ketamine infusions. These only helped my pain the day of and left me with horrible headaches and nausea after treatments. My only hope and prayer at this point was the DRG surgery. I could not entertain the thought that it wouldn’t work because I couldn’t let another failed treatment break me like the one in September. I just held on to faith and hope.

And hope did not disappoint. 🙂

DRG trial
DRG trial phase – the leads in the spinal cord are attached to an external generator. Awkward, hard to get comfortable, but sooo worth it for the final result!

 

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The scar on my back from the implant surgery, about 4 weeks out from surgery. It’s about 3 inches long. ‘Tis but a scratch! I now have 90-100% pain relief with no medication.

 

So, if I hadn’t taken the residency in Austin and tripped in my own living room, I never would have found Dr. M or Dr. L and be living pain-free. I would be 29 and possibly on disability or worse because of the severity of my pain and its effects. Even though I wasn’t “dying,” these doctors saved my life and will always hold a special place in my heart.

Best,
B

This post is dedicated to God, my supportive family (especially my mom, who was with me through every surgery and procedure), Dr. M, Dr. L, my amazing DRG reps (you know who who are) and my Uncle, Dr. Tim Binning, DPM, who went to be with the Lord on August 28, 2015 after battling an aggressive glioblastoma.


One thought on “My Story

  1. Crying after reading your blog. My son is 24 and has had CRPS since age 17. He is at the end of his rope and totally without hope. I told him we need to check out the DRG and he just says, we won’t be able to pay for it and it won’t work anyway. His final word, “Hope is dangerous.” I am going with him to his pain doctor this coming Wednesday and I am going to ask about it. Do you have any advice for us? Is there anyone we can contact for help? I am at the end of my rope, my heart is broken watching my son scream because of his pain and hopelessness. Thank you for any advice, contacts, anything you can give us.

    Like

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