Written by Pennie for the RSDSA blog.
Hello my name is Pennie and I help my daughter Jess. She has CRPS Type 2 and we live in Sydney, Australia.
Jess was a dancer and was injured by a dance teacher. She had years of surgeries to try and preserve her hip, but unfortunately at 24 she needed a hip replacement. Six months after the replacement she was not recovering as she should have been so then she needed hip revision surgery for the replacement. This is where our nightmare started six years ago. Six days after the revision surgery, Jess was in excruciating pain in the hospital. Her leg from the knee down was purple and paralyzed.
Soon after, the surgeon took her back to the operating theatre. They found adhesions had formed due to years of inflammation that had crushed and adhered her sciatic nerve to two sections of her pelvis. This damage caused CRPS Type 2. Jess had lost the use of her lower leg.
One year down the track a nerve study showed that the sural and tibial nerves had been killed from the crush injury to the sciatic nerve. Her lower leg would never recover. Jess wanted an amputation with the hope to walk once again. We went to see a world renowned surgeon who performed osseointegration here in Australia as Jess could not have anything touching her leg due to hypersensitivity, so a normal prosthetic over her stump was not an option. The surgeon made it quite clear that the amputation would not take away her CRPS pain, but it would give her the ability to walk again as her leg was necrotic (dying). Jess had a below knee amputation at 25 years old with osseointegration. She can walk only short distances, but that beats being confined to a wheelchair.
Jess has a spinal cord stimulator, a bladder stimulator and can’t control her body temperature. She is in constant pain 24/7. Every day is challenging for her, but she tries so hard to remain positive. CRPS has changed her life forever, but she fights this ugly disease every single day. We both hold on to hope that someday, somehow there will be more that can be done to help her pain.
One of the biggest issues Jess and I find is that people look at her and say how great she looks, but my girl wears an excellent mask. The mask comes off around me and I see the hell she lives every day.
The other thing is extended family. They do not understand how hard each day really is for her and they do not make any effort to find out either which is so hard on us both.
My advice to other newly diagnosed Warriors is to learn all you can about CRPS and ask a lot of questions. Try to stay positive and don’t give up. Hold onto hope and find a pain specialist that will listen to you and understands this terrible, life-altering disease.
Bless you all xx
Pennie – A Carer and Mum
