On October 16th, I walked into Moffitt for surgery number 24. The purpose of the surgery was to remove the titanium mesh. It's ironic how the mesh that was supposed to protect my brain and keep me safe and healthy caused havoc in my life. My body ultimately rejected the titanium mesh. Thankfully, despite the rejection, the skin flap remained healthy.
I did not want another surgery. I was traumatized from the last surgery, and for the first time in my life, I was afraid of having surgery. However, after 40 sessions of hyperbaric treatment, MediHoney, collagen, and transplant of cellular tissue, the wounds not only remained open but had gotten bigger. The entire medical team at the wound care clinic did everything imaginable to help my body heal, but nothing worked.
These past 18 months have been beyond difficult for me. My depression and anxiety were evident. I was not in a good place. My thoughts were dark. I was hopeless. I felt as if I was an intruder in my own body. I was angry that after everything I have been through, my body was failing me for the first time, and I did not understand why. I found it challenging to look in the mirror and see how surgery #23 drastically changed my face. Facial nerve paralysis, a bulging skin graft on the right side of my face, and a trach scar were the reasons I feared going back into the operating room. If those were the results of surgery #23, how would I look after another? My typical sunny disposition lessened as the wounds remained open and more prominent, and the infections remained. For well over a year, I was on two antibiotics; from July to October, I was taking two different antibiotics to kill and prevent the re-emergence of infections. I feared that I would have to take these antibiotics for the rest of my life and the adverse effects they would have on my liver and immune system.
In mid-August, I spoke with Dr. Patel, head and neck surgeon, and agreed to surgery. His initial plan was to only remove the exposed mesh, leaving the majority intact. He spoke of using a wound vac and other grafts, such as cadaver skin. I left that appointment feeling defeated. When I got home that afternoon, I sat on the sofa and cried. I cried because I was afraid. I cried out of anger. I cried because I felt powerless. I cried because I missed being me. I cried because I was tired of having to be hypervigilant with the wounds. I was tired and wanted the mesh out of my body, but my doctor did not believe the entire mesh needed to be removed.
In September, I spoke with Dr. Tran, the neurosurgeon. He proposed removing the entire mesh because that was the only way to prevent my skin from opening again. He explained that my body rejected the titanium and that having a persistent infection does not allow healing. I expressed that I agreed but that Dr.Patel only wanted to remove the exposed section because he did not want to lift the entire graft and risk the graft being compromised. Dr. Tran informed me that he would speak to Dr. Patel and recommended that the whole mesh be removed. I left that appointment feeling less defeated but filled with uncertainties.
I sought a second opinion. I initially attempted to speak to Dr. Johnson, a surgeon at Shands Hospital in Gainsville, but that proved more difficult than I imagined. This surgeon's office is antiquated as they only accept referrals via fax. I spent the greater part of three days and over 50 attempts sending the required documents to two different fax numbers to Shands from my work fax to no avail. I finally sent the documents to Dr. Johnson's office from my PCP's office. I called Dr. Johnson's office the following Tuesday, and they confirmed they had received it; I was informed that I would receive a call within 72 hours telling me if my case would be taken. Two weeks passed before I heard from his office.
While I waited to hear from Dr. Johnson, I was connected to Enzo. Enzo is a friend of my parents and a plastic surgeon that operates in Brasil and Colombia. He and I spoke about my previous surgery, the wounds, and my body rejecting the mesh. He explained that he did not have experience with a case such as mine but offered to speak to a fellow surgeon in Brasil that did. With my permission, he sent her a brief medical history with pictures. Within 48 hours, I talked to Dr. Cardim; she explained how she would handle a case like mine, stating that she would remove the entire foreign object and allow the body to heal before operating and, if needed, placing something else in the area. In my case, she explained, she would not operate again due to having a history of rejecting foreign objects. Dr. Cardim advised me not to pursue surgery with a new medical team; she explained that Dr. Patel and Dr. Tran know my case and body best and that a new surgeon could potentially be more damaging because they were not part of the medical team that did the skin flap and mesh. Deep down, I knew this, but hearing this from a surgeon eased my anxiety.
Part 2 coming soon.
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