My Story

I’ll start at the beginning and give you the shortened version. Consider yourself warned: my story is a complicated one! I was born with developmental hip dysplasia in my left hip. But, it wasn’t detected until I was two years old.

The doctors tried a couple different types of leg braces and leg casts. Conservative measures didn’t work. My body had already made another socket outside of my hip socket. I was three years old when I had my first major hip surgery and wore my first full-length body cast. I relearned to walk after months in a body cast. You can read the rest of my hip story here.

Hopefully, you clicked on the link to read my hip story. Now, let’s fast forward a bit…

I struggled with regular body aches, pain and a whole host of other symptoms for a number of years. I eventually received a fibromyalgia diagnosis in my mid-twenties along with some early osteoarthritis. Living with pain became a regular thing for me. Let’s fast forward here again too…

Around age thirty-one/thirty-two, I started struggling with a new pain in my left leg. My rheumatologist at the time believed it was nerve related. Nerve conduction studies and muscle testing ruled out some possible culprits. When my rheumatologist finally decided an MRI was necessary, my left hip was already bone on bone.

Anything But Typical

Soon, I was searching for an orthopedic surgeon who would do a total hip replacement. It wasn’t an easy search! The doctor gave me no guarantees from the start. I was told I might not be able to walk after the surgery because my case was complex. I had a cute little curve in my femur from the surgery I had when I was seven. Who knew a curve could make things so difficult?

My hip replacement was anything but typical. More like abnormal from the start. I’ll share all those details in a separate post which you can read about here. March 27, 2014 marks the day when things started to change in my life. It was the day of my hip replacement surgery. At some point during the months preceding the surgery, my life had already started to change. I can’t pinpoint exactly when it happened.

I had some complications from the hip replacement surgery that made my recovery harder and longer. Not to mention, I had to have roughly four months of physical therapy. I ended up not needing any walking assistance at all; but, I kept on having pretty significant pain in my hip.

I did a whole host of different things recommended by my doctor to try to help the pain. Nothing seemed to make a difference in the pain; it was only getting worse. I was a special education teacher and had returned to teaching full-time five months after my hip replacement. I was struggling more and more each week.

My surgeon wanted to give my body ample time to heal from the surgery. Two years after my hip replacement, I was still experiencing so much pain that OTC meds didn’t touch it. I still needed prescription pain medication after a day of work and I was in so much pain after school, it was difficult to drive home.

I want to share here that I was very unhappy being on this type of medication still. My doctor and I were both very judicious about it. I complied with every request my doctor made including those that were difficult for my husband and I to afford.

The Specialists Keep Comin’

My doctor went ahead and referred me to a pain specialist who I still see. The majority of the pain I was experiencing seemed to be nerve-like. So my surgeon referred me to another specialized orthopedic doctor whose specialty was nerves. He diagnosed me with meralgia parasthetica. The two main nerves in my left leg had become buried in scar tissue.

I had surgery to release the nerves from the scar tissue in February 2016. But, the surgery didn’t seem to improve my pain hardly at all. Later that year, another specialized orthopedic performed a bursectomy, iliotibial band (IT band) release and cleaned out all the irritated tissue. Disappointed once again, the surgery had done little to improve my pain.

Worst Case Scenario Becomes Reality

The pain specialist wanted to try performing a nerve block. I had two of those in preparation for a nerve ablation. The first nerve ablation improved my pain levels for a few months. Then, I started to slowly get back to where I was painwise before the ablation, basically square one. I had a second nerve ablation and knew while I was still on the procedure table that something was different. I gained no improvement at all from the second procedure. A few weeks later, my pain specialist made a critical medication change and my worst case scenario option: a spinal cord stimulator was suddenly on my horizon.

That was the day I hit “the wall”. You’ll hear me refer to this time period often. I broke down in the specialist’s office and sobbed openly when he delivered the news. In my mind, this was one of two worse case scenarios for my situation. I guess somehow I thought it could still be off in the future somehow. But, then suddenly it was a reality and an urgent need because there were no other options.

Obviously, my husband and I had had numerous conversations with my orthopedic specialist and each other about what I could realistically do in terms of work prior to this. Having hip revision surgery was out of the question. There are no guarantees that it will improve my pain and it will be a huge surgery because of the deformity to my femur. My husband was very aware of how much I was struggling to work. I was a special education teacher working in a resource type setting and I had been in survival mode since returning to work after my hip replacement surgery. I had been struggling to function outside of work hours for years.

Spinal Cord Stimulator: You’re Up!

Even still, that day I realized I couldn’t keep pushing my body to do what it had been doing. I went on medical leave immediately and I never returned to my classroom to teach. My insurance company would not consent for me to do a trial wearing the spinal cord stimulator. For the trial, they would put the lead wires in my spinal column and I would wear the rest of the device on the outside of my body for a week. I ended up having a repeat nerve conduction study and EMG done on my left leg; it’s an incredibly painful test. But, it was worth it because the test showed I had nerve damage. Once that was submitted, I was approved for the trial.

By the second day wearing the trial device, I knew I had to get the permanent device. I could already feel more improvement in the pain in my leg than any of the other surgeries & procedures combined. It was emotionally taxing to have the device removed at the end of the week. I had actually felt, for the first time, that I had some control over the pain.

I was approved for the permanent device and had surgery to implant it a couple months later. Then, the process of getting my device programmed began and that is ongoing. I had to wait several months for my wires to get scarred in before I could start physical therapy. Rehab from this surgery was definitely difficult. I had some intense restrictions for several weeks after the surgery because moving your lead wires or electrodes on your vertebrae before they get scarred in are a big “no-no”.

Since getting my spinal cord stimulator, I’ve been able to reduce my pain medication by half and I’ve become more functional than I was before I got it. Getting the device came with some costs; but, having better control over my pain has been worth it to me. Three years have passed since I got my device. It’s been almost eight years since I had my hip replacement surgery. I’m thankful for every ounce of improvement I’ve received.

*Did I feel disappointment that I wasn’t completely pain free?

I was very realistic in my expectations going into the surgery. I knew we were looking to improve my quality of life and that becoming pain-free was highly unlikely. My pain specialist and the representative from Boston Scientific (the creators of my device) were both up front with me.

That’s my story to this point today. The next big step will be when it comes time for me to have hip revision surgery. When that time comes, my femur will have to be broken and straightened in addition to the new hip implant. My surgeon predicted I would get roughly ten years out of the one I have now; so, we shall see. In the meantime, I’m going to keep trusting the Lord with writing my story.