The range of motion in my left ankle looks great, and we are all estatic with the progress that has been made. I attend outpatient physical therapy two times a week, and continue at home physical therapy 2-3 times a day. Daily I set myself goals, and I push myself to accomplish them, even on the days I want to curl up in a ball and cry. I am making sure to listen to my body, and allowing myself to rest when my body demands it. Rehabilitating my leg is my full time job, and it is rewarding as well as exhausting. I have found ways to implement physical therapy exercises wherever I am, including walking the entire grocery store several times. I have learned simple errands we take for granted, have become rewarding in my eyes.
I was fitted for a specialized brace, known as an AFO. An AFO is a customized brace that supports limbs that may be weak, or assist limbs that are positioned in abnormal positions due to muscle contractions; currently my ankle is still struggling with muscle contractions, and has a permanent foot drop. I'm at a big risk of my left ankle becoming stuck in a permanent contracture again. If this occurs, amputation will be necessary as I do not have any other options to reverse the damage. When my foot isn't in the AFO splint, my foot flops down and locks up in muscle contractions. To prevent my ankle going back into a fixed contracture, it has been recommended to wear the AFO at all times, with exceptions for showering and physical therapy. What has been difficult is my leg is continuing to fight the brace. My heel is unable to sit properly in the AFO brace, and it continues to slide up and out of the brace. Envision pushing down on the gas pedal in a car, but instead of releasing off the pedal, it is stuck pushing down; that is what my ankle does daily. There have been multiple times my leg has gotten out of the brace, and there has been an incident where my foot was forcing itself out of the brace. During that occurrence, I was unable to put a finger in-between the strap of the brace and my foot/ankle. The surgeon and my physical therapist were notified, and they were confident this was from the dystonia. I met with the brace clinic, and learned that I am running out of options for how to keep my ankle immobilized. I will meet with the brace clinic again next week, and further adjustments will be made to the brace. My surgeon has referred me to a colleague who specializes in neuromuscular diseases, and this provider was consulted originally for my first left foot surgery; the fun fact about this physician is he was the one to suggest the surgical method to save my foot originally. Botox is being considered again for my right leg, and further discussion will arise about what options I have left for my left leg.
I am overwhelmed with emotions, but there is a relief that I am in the home stretch. It is draining to go through the grieving emotions, but it doesn't feel as intense as a year ago at this time. I am practicing self love and self care, and have been reaching out to family and friends for support. I continuously keep myself busy, between doing work for the RSD association, and creating art. When I start feeling down about the situation, I look at my left foot, and wiggle my toes; I smile every time I see them, as I am lucky to still have them. Making the decision to undergo this extensive surgery again hasn’t been easy. Signing paperwork allowing my surgeon to make the decision to amputate is difficult, but I know he will make the best judgement. When it comes to RSD/CRPS, any surgical intervention that is necessary has to be thought out in depth. The more trauma my body encounters, the chances of the RSD/CRPS spreading increases. Every person who has RSD/CRPS responds differently to medical and holistic approaches, and its crucial to figure out what works for you before undergoing any procedure. For me, I respond well with Ketamine, and medical marijuana; my treatment team is insisting both of these approaches are incorporated in the recovery process, and I was hoping they would prescribed frozen yogurt, and chocolate as well (a girl can dream, right?). In my eyes, there are to many pros that outweigh the cons, and it is completely worth undergoing this procedure; I am not giving up my goal of being able to walk.
