In June of last year, I became a patient of Moffitt's NF clinic; I was honestly apprehensive with the whole process. I did not want to be treated like a guinea pig, being poked and prodded for having a condition that affects everyone living with it so differently. My fears quickly vanished. Dr. Mahktari saw me as an individual, not as another case for the NF clinic; she and her APRN Amal spent a solid hour conversing with me. It was not a Q&A. So I left my first NF appointment with five scheduled MRI/CT-scan appointments, an appointment with a neurosurgeon, and a geneticist. I had a busy NF-filled summer ( as if I never have an NF day!).
Dr. Mahktari sent me to see Dr. Tran after I showed her two pin-prick size wounds on the side of my skull. I knew instinctively that the titanium mesh was causing the tiny wounds. When Dr. Tran reviewed my brain MRI and examined the open skin, he determined that at that time, in early July, it did not require surgical intervention; however, we would monitor the wounds for any changes.
Fast forward to early October. I made an appointment to see Dr. Mahktari because the skin on the right side of my skull was red and sensitive. She agreed that the area where the wounds were appeared irritated and scabbed. Dr. Mahktari took pictures of my right temple where the wounds were and sent them to Dr. Tran's team. I received a call later that week from his team; they wanted to schedule an appointment right away. When I finally saw Dr. Tran, the scabbed area had expanded, and the irritation had increased; he cleaned and carefully removed the scabbed area, underneath was the exposed titanium mesh.
So now I am scheduled for surgery on 1/19/2022, making this surgery number 23.
In preparation for this upcoming procedure, I took the initiative and got rid of my long locks! This surgery is one of the riskiest I had endured as it will involve replacing the mesh that I had placed when I was 17 years old. This surgery is anticipated to last ten hours and includes a skin graft. I am ready to take on this surgery, just like I have with the 22 others. I will recover and live my best life.
As always, I have NF, but NF does not have me!
I invite you to follow me on my NF journey on Instagram and Twitter @Mynf_life
