Thought I would start a thread re: my CK journey, as other’s journeys have been so helpful personally. The CK treatment is scheduled April 23, 2019 at the Radiation Oncology lab, UNC Hospital, Chapel Hill, NC.
I was diagnosed spring 2018 with a benign vestibular schwannoma on my right side. Symptoms that started this were facial numbness, tongue tingling, and feeling hungover all the time. Little did I know, my poor balance was not clumsiness, but an unrecognized symptom. My full ear was not wax, but also an unrecognized symptom.
On August 12, 2018, the vestibular schwannoma was removed at the UNC Chapel Hill hospital. The right retrosigmoid craniotomy lasted 10.5 hours, right up until my facial nerve began getting irritated. A portion of the tumor remained. My auditory and balance nerves were removed. I can share recovery/preparation/details via another post if anyone is interested.
March 4, 2019, my 6 month MRI showed some growth, or poofing of the remaining tumor. Due to the possibility of aggressive growth, we agreed that an action based plan was preferred (vs wait and see). After speaking with the neurosurgeon, the ontolaryngologist and the radiation oncologist, my husband and I agreed Cyber Knife was the way to go.
MEDICAL CARE, all at UNC Chapel Hill, NC, and all amazing
• Matthew Ewend, MD Neurosurgery
• Brendan O’connell, MD Otolaryngology
• Collette Shen, MD Radiation Oncology
DECISION MADE, GETTING READY
I called the Radiation Oncology department and let them know that the decision was made. A few weeks later was my appointment for Imaging & Simulation.
The appointment lasted ~2 hours, a bit long because I have this pesky issue where I faint (vasovagal syncope) when I freak myself out at the doctor, and then I have to rest, answer questions, etc. Due to this, I will have medication day of the procedure to take the edge off.
We discussed the CK procedure in detail. My two big questions:
• What to do to prepare? Show up, be ready to take hair clips out.
• Do I need to take time off work? Some people go back to work the same day, some take time off. (I am taking 2 weeks off, a pretty high stress job and I don’t want to be multi-tasking while I sort out the CK experience).
I had a CT scan with contrast and wearing a fancy mask. The mask was warm when they put it on, but was cool when complete. It was like a quiet MRI. Then I went home.
While I have been working the past week and attending meetings, making power point slides, looking at quarterly budgets -- the amazing doctors are mapping the tumor, planning the right dose and handing the work off to the medical physicists who use a fancy computer simulation to plan the treatment, including how to deliver the right dose.
After the procedure, will share more info!