Road That Led to Discovery of Fibromyalgia
This picture taken at the end of a four year road to discovering I had #Fibromyalgia. I had #Cancer in 2002, in the form of a Germinoma (#GermCellTumor), that was located in the center of my brain and had started growing down into my spinal cord. The tumor blocked off the passageway where cerebrospinal fluid (CSF) should naturally drain out of the brain and I had to have a ventriculoperitoneal (VP) shunt installed to get rid of #Hydrocephalus. The shunt works similar to an intravenous (IV) by collecting the CSF in the brain through a tube that travels into a pouch. As the pouch gets full, it pushes the CSF down a connected tube that runs beneath the rib cage and drains out in the stomach.
In 2012, I got an infection on my scalp, where neurologists had performed my first surgery to partially remove the Germinoma. In 2002, I had had six and a half weeks of radiation treatments to do away with the remainder of the Germinoma and the treatments had left my scalp with about a half layer of skin, in the area where my first surgery was. I didn’t think the infection was a big deal and let it go, until it started severely bleeding one night. I went to see my neurologist and she said if I had waited a few more days then the infection would have been in my skull and I would have been stuck in a clean room for six, or more months, while they drilled that chunk of my skull out to let it heal, and I stayed in the room at Duke, with my brain exposed.
In January of 2016, my scalp had started developing another infection, so I went to see my neurologist, Dr. Muh. She introduced me to a reconstructive surgeon, at Duke University Hospital, who wanted to put a gel filled balloon beneath the side of my scalp and gradually inflate it, until the skin was loose enough to fold over the area that kept becoming infected on top of my head. The day I was scheduled to meet the reconstructive surgeon, I woke up and was broken out, from head to toe, in hives and boils, with no idea of what was going on with my system. I went to Duke, for my appointment, and broke down in tears when the reconstructive surgeon, Dr. Marcus, walked in. He said that before he did surgery, he wanted to find out what I was allergic to. He sent me to the allergen clinic at Duke, where they spent almost eight months trying to figure out what I was allergic to.
My allergen doctor transferred me to the Duke dermatology allergen specialists, where they discovered I was allergic to nickel and formaldehyde, by inserting sixty-five needles in my back for five days. While I was undergoing allergy testing in dermatology, the main doctor noticed several moles that were created by my radiation treatments and looked atypical. She scheduled an appointment with a different dermatology division, which deals with skin issues.
During this time, my back gave out due to stress, and I went to see a chiropractor, who worked with me for four hours and determined that whatever was wrong with my back was musculoskeletal related. He suggested that I talk with my neuro-oncologist at Duke. I called my neuro-oncologist and he admitted me to Duke for five days, because he thought the Germinoma had come back in my lower spine. Doctors performed a three hour MRI, X-Rays, EKG’s, and a lumbar puncture. When those tests came back negative for any tumors, one of the doctors on my neuro-oncologist’s team suggested fibromyalgia.
I went back to see the reconstructive surgeon, Dr. Marcus, and he scheduled me for surgery in mid-January, of 2017. By that point, the infection had almost healed on its own, but my doctors stilled wanted to do the surgery to try and prevent future infections.
I had a balloon installed a centimeter from the top of my shunt pouch, with a port leading to the balloon behind my ear. Dr. Marcus spent the next four months inserting gel into the balloon, through the port, and expanding the skin beneath my scalp there. I was simultaneously having biopsies and surgeries done in dermatology to test my atypical moles for cancer and remove the moles that were pre-cancerous.
Around the first of May, 2017, Dr. Marcus went back in, removed the balloon, folded the loose skin over the top of my head, and drained the excess blood and fluid through the part of the tube that was connected to the balloon, which was now on the left side of my head. The area where the drainage tube was became infected, during the twenty-four hours it was left beneath my scalp. Dr. Marcus had to spend the next seven months pouring an acid solution onto that section of my scalp, to try and get rid of that infection. The balloon surgery was done in order to fix the “dent” in my head from my first surgery and radiation treatments in 2002, because that was the area that kept becoming infected. However, where the acid was poured onto my scalp, it unintentionally created a new dent that will need surgery in the future. (In future surgeries to my scalp, Dr. Marcus will do skin grafts from my leg).
My system has been difficult to say the least, but I am inexplicably grateful for the fantastic team I have at Duke University Hospital! Thus far, I have not had to have anymore surgeries done on my scalp and my last biopsy in dermatology was in mid-January, of this year, which came back negative for cancer!