Public

I was hit by a drunk driver in 2016, causing injuries that resulted in a total knee replacement in 2018. This is where my arthrofibrosis journey began, though I did not know it at the time. At age 45 my orthopedic surgeon did not want to do a replacement but all other conservative approaches had failed and my world was shrinking with pain and stiffness.

Fast forward to today as I am on the cusp of a 5th total revision out of state with my 4th surgeon, this one an expert in arthrofibrosis. All through these tough years I have had wonderful surgeons and consultants, was diligent with PT and home exercises. I’ve had 2 arthroscopic surgeries, 6 manipulations under anesthesia. One was followed with 3 days on epidural with CPM machine continuously running. I’ve tried the Dynasplints for flexion and extension. I’ve had Botox treatments in my quads and hams for an acquired focal dystonia after my 3rd revision that has since resolved. I’ve lost and regained significant weight, resulting in the loss of my gall bladder.

Ive faced shame, depression, thoughts of just ending it all as it has consumed my whole life.

I’ve thrown myself into work, now 7 days a week and 5 jobs just to try to keep up with the hundreds of thousands of dollars thaf medical bills and medical travel have cost me. While I have good health insurance, my insurance tracked all expenses related to the accident and put a medical lien on me to recover it.

Looking back I wonder if it could have been predicted that I would have arthrofibrosis. It is hopeful in the future that this can be discovered early and approach to surgeries consider this devastating complication. I get keloid scars. I had endometriosis that resulted in a hysterectomy. My aunts and uncles on my mothers side have had complications from scar tissue after joint repairs and replacements.

A week ahead of my next surgery and I am dreading going through another painful surgery and recovery with no guarantee of improvement. This time likely an extensor repair and possible whole leg cast for 3 months, so there will be new challenges. I’ve given up hope for normal functioning but would be happy with a stable implant with less pain to get me through the next 15 years. I was happy to find a small community of people who understand this disease and it’s impact on our lives. The first 6 years I was the only one my friends, family and medical providers had ever seen. And the harder we tried to push through the worse things got. Now I know that it is not my fault and I can let go of the shame I have been carrying and focus on an empowered recovery. Let’s do this.