Friday, November 9, 2012
Today I had my long awaited appointment with Dr. Shelton. In a way, it was a big relief to have him confirm that it is a benign tumor and that it is an acoustic neuroma. I was somewhat disappointed that I don't have a lot more information than what I already knew. He seemed genuinely surprised that I knew so much about acoustic neuromas. Really? Do a lot of people get diagnosed with a brain tumor and not research it??? Here is what I did find out. He recommends the Translabyrinthine approach. This involves an incision behind your ear. The mastoid and inner ear structures are removed to expose the tumor. The tumor is then removed. The mastoid defect is closed with fat taken from the abdomen. This approach sacrifices the hearing and balance mechanism in the inner ear. I know what some of you are thinking? At least you are getting a tummy tuck with this. NOPE, I wish. The fat graft from your stomach is nothing like a tummy tuck. I have heard it actually leaves your stomach looking somewhat deformed. Not that my children didn't already do that. This approach gives the surgeon the clearest view of the facial nerve. There is a 50/50 chance that I will have some type of temporary facial nerve damage. As long as the facial nerve is not severed, most people will recover over time and no signs of facial nerve damage will remain. This is my biggest concern. I am hoping and praying that my facial nerve will not be damaged during the surgery especially since saving my hearing is not an option. I actually have all of my hearing back at this point. I am enjoying it while it lasts! There are small risks of meningitis, cerebrial spinal fluid leak, or needing a blood transfusion. The doctor actually recommended I donate a unit of my own blood before the surgery in case they need to do a transfusion. Dr. Shelton is so busy that his surgeries are booked through January. I do not have a definitive date for my surgery (I will on Monday when his office assistant calls). I want to say thank you for all the love and support that my family and I have received at this time. From prayers to meals to texts or calls, I have been overwhelmed. Thank you for all the love and support. We are so grateful to have such wonderful family and friends.
Thursday, October 4, 2012
In the middle of August, I suffered sudden hearing loss. I went to the instacare and they told me I had fluid in my inner ear and that if I took sudafed it would clear right up. I took sudafed, (it helped a little) and then they hearing loss came right back. I went to see and ENT (Ear, Nose and Throat specialist), they did lots of hearing tests and told me that I had nerve damage (most likely from a virus)and that my hearing was most likely gone. The ENT scheduled an MRI. He said that it is highly uncommon, but sometimes there is a growth on the brain that causes hearing loss...but it's uncommon. We were on our way to Disneyland when the ENT called and asked if I could come in for a follow-up appointment with my doctor. I told her that we were on vacation and I asked if they could tell me over the phone. She told me that I needed to come in and sounded concerned. I tried to forget about it while we were in Disneyland, but our phone conversation lingered in my mind. When we got home from Disneyland, I decided to look at the MRI images I had been given. It was very evident in these images that I had a tumor on my brain. I started freaking out. I started researching brain cancer statistics. They are not good. Especially if the tumor is malignant. My cousins wife works at Huntsman so I called her. She calmed me down quite a bit and suggested that I ask for a copy of the radiology report (if I couldn't get into see a doctor right away). I had an appointment scheduled for Wednesday, so I drove to the hospital to get a copy of the report. I was a mess the entire way. What would it say? What if it was malignant? We have three small children. I should let you know that I am the queen of wishing life away (I know I shouldn't), but sometimes I wish the twins were in preschool and that I could pee by myself every once in a while. Nothing will make you more grateful for the life you currently have than realizing that it might be taken away from you. When I got the copy of the radiology report I quickly read through what I could and what I couldn't understand. This is what I know so far. I have a large accoustic neuroma. Acoustic neuroma: A benign tumor that may develop on the hearing and balance nerves near the inner ear. The tumor results from an overproduction of Schwann cells -- small sheet-like cells that normally wrap around nerve fibers like onion skin and help support the nerves. When growth is abnormally excessive, Schwann cells bunch together, pressing against the hearing and balance nerves, often causing gradual hearing loss, tinnitus (ringing in the ears), and dizziness. If the tumor becomes large, it can interfere with the facial nerve, causing partial paralysis, and eventually press against nearby brain structures, becoming life-threatening. I have been referred to Dr. Shelton. He specializes in this type of tumor. He is apparently the only person in the state who performs these and is therefore, really busy. I most likely won't get into see him for 3 to 4 weeks and then I am hoping to have the tumor removed before the end of the year. I will have to shave a portion of my head :( I will have to have surgery on/near my brain :( I could suffer facial nerve damage and one side of my face might droop :( These are not fun to think about, but I am so unbelievably grateful that these types of tumors are benign. I am so grateful to have a doctor in Utah who specializes in these.
A few people have made comments about Zacc and I having to go through a lot with his thyroid cancer and then this. I appreciate the concern of these people and their wanting good things for us, but I want to be very clear that Zacc and I do not feel that life is unfair. We have been so incredibly blessed by a loving Heavenly Father who is constantly taking care of us. There are so many others who have been through far more difficult trials. Thank you for all of the love and support we have received. We have amazing friends and family :)