ONCE UPON A GENE - EPISODE 039 - Next Steps: A Journey Through CRPS to an Above-the-Knee Amputee with Whitney Lavender
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Whitney Lavender lives in Texas with her husband and two sons. I discovered her through her advocacy on Complex Regional Pain Syndrome (CRPS). She was taking a walk one day and had an accident that changed her life forever. The accident even led to the discovery of another rare disease she was unknowingly dealing with. Whitney has lived with excruciating pain for years, has been in the hospital alone during Covid and had her leg amputated while isolated from her family. Whitney is an awesome advocate and she's been so brave to share her story along the way.
EPISODE HIGHLIGHTS
How did you enter the world of rare?
In November 2017, a normal day, I fell down the stairs, went down on my knees and hit the concrete at the bottom. I knew in the moment that I had hurt myself pretty badly. I could walk, nothing was broken, but my leg was swollen and bruised. After going to the doctor, the MRI showed nothing, there was fluid on my knee that could be remedied with physical therapy. Nothing was changing except that I was getting worse and physical therapy was only making things worse. The orthopedic surgeon I was seeing suspected I had CRPS and suggested I see a pain doctor. Three months after the accident, we got the confirmed diagnosis and started trying other treatments such as epidurals, nerve blocks and spinal cord stimulation. Nothing was working and my leg was just growing larger and I started getting worse in a lot of other ways. I started getting headaches, had an MRI done, saw a neurologist and found out I had a chiari malformation that I was born with. My skull didn't form all the way and my cerebellum had herniated into my spinal canal and it was blocking spinal fluid from flowing normally. In August, I was diagnosed with Ehlers-Danlos syndrome (EDS), which is a tissue connectivity disorder where the tissues and joints don't function correctly.
After you were diagnosed and the treatment plan wasn't working, what was your mental state?
For the first year, I was not on social media and I was in a little hole all by myself. I was desperate for connection, understanding and answers, but I went the first year alone. I went to the NORD Conference in Houston last summer and I met someone there who had my disease. She gave me a great piece of advice when she said my world just got a lot bigger, not smaller. I went home, stepped out of my comfort zone and got on social media. What happened was I found the most amazing community who opened their arms, embraced me and welcomed me in. It changed everything. I went from being alone and depressed to realizing the good that can come from this.
When did you find the doctor that knew how to help you and what was that like?
It was life changing. It was my primary care physician who found him. My primary care physician has been very involved from the beginning, has seen how this has progressed and evolved, and has learned along with me and grown as a doctor. I'm thankful to have him in my corner.
Did the two doctors formulate a plan to amputate your leg?
Yes, my leg was amputated on April 20th. It was a big thing losing a limb. You don't go into something like that lightly. Behind the scenes, my husband and I had talked about this for a year before the conversation with the doctor because we wanted to exhaust every other option. When we got to that point, they agreed it was time. The leg was sucking the life out of me. My body couldn't self-regulate and it was done trying to stop the disease from overtaking my leg. For me, amputating my leg was the best course of action and I've gotten my life back in only two months.
After your leg was amputated, what has happened with your pain from before to now?
After surgery, I woke up with a blanket covering me and before I couldn't have a blanket on my leg. I realized I didn't feel pain other than surgical pain and the CRPS pain was completely gone. I woke up from surgery and the chains that bound me for so long were gone. Two months later, everything has healed beautifully, the pain from surgery is less and less everyday and we're starting the prosthetic journey.
How will EDS continue to affect you?
It tends to make me more clumsy, so I've been working with my occupational and physical therapists on that. It's a concern moving forward and I don't want to have another accident. I'm cautious with my surroundings and my footing and I probably always will be. I'll have to learn to listen to my body, which I've been bad about my entire life, unaware of the underlying issue. I'll be focusing on allowing myself time and grace because it's going to be a new balance and new life moving forward in a lot of ways.
LINKS AND RESOURCES MENTIONED
NORD Living Rare, Living Stronger 2020 Registration
Whitney Lavender on YouTube - Whitscomplex
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