I’m 20 days out from a day I will never forget. It’s also the day before two days of appointments that will hopefully provide more information regarding my next steps.
This is a version of an email I sent to family and friends after I was referred to doctors at the U of M after having an MRI back in August.
Stay tuned for more on the things God has already taught me this past month.
I had some shocking news hit me on 9/5 and am writing to humbly ask for your prayers.
First, a little history just for context. I’ve been struggling with hearing loss coupled with pain/pressure in my right ear for almost a year and have been seen by several different health professionals since last December. This past spring, the ENT PA-C that I saw recommended having an MRI to rule in/out something called an acoustic neuroma. At the time I didn’t see the need for something like that because they are relatively rare and my symptoms didn’t seem “that” bad. Fast forward to a few weeks ago and I was fighting another sinus infection and the same pain/pressure in my right ear. I decided to make the appointment for the MRI and added a CT scan as well (because of the sinus problem.)
The results came back the same day (8/21) – substantial sinus infection (which we treated with antibiotics) and the appearance of an acoustic neuroma. (They did not tell me the size over the phone and I didn’t think to ask.) The PA referred me to a specialist at the University of Minnesota and I was able to get an appointment scheduled on 9/5. My MRI scan results were not good. I could see the acoustic neuroma right away when the doctor pulled up the image and emotions instantly overwhelmed me. The acoustic neuroma is about 25mm, which is on the border of what they consider medium/large. We have no idea how long it has been growing, though the average growth rate is 1-2mm/year. I’m still trying to wrap my mind around the fact that I have a tumor in my head. (Silver lining is that it’s not cancerous and “usually” slow growing. Though care needs to be taken because as it grows, it pushes on the brain and eventually brain stem and can cause additional issues.)
Surgery is the recommended treatment due to my “young” age, good health, and the size of the tumor. There are side effects of the surgery that brought me to tears a second time and continue to do so – complete hearing loss in my right ear is absolute if one surgical approach is taken and 2/3 likely if a different one is used. The impact on the facial nerve is unknown until surgery is completed, though I’m told the surgeon at the U is meticulous and does everything he can to provide the “best outcome possible.” Time in the hospital can range from 3-7 days after the initial 24 hours or so in ICU. Then it’s recovery at home – at least 6 weeks without lifting heaving items (including kids) so as to not cause cerebral spinal fluid leaks, exercises and an occasional check-in appointment, and I won’t be able to drive until my balance stabilizes (timeline for that is unknown.) Needless to say, it was an extremely overwhelming afternoon. Thankfully, Jake was there.
As the news is still fresh and there is more information to gather, we have not made a decision on the treatment direction or timeline. The doctor suggested we go home, talk, and call for a follow-up appointment with her and the neurosurgeon. That second appointment at the U is now scheduled for 9/26 and I have an appointment at Mayo Clinic on 9/27 to get a second opinion on treatment recommendations. Taking in and processing all of this information is extremely overwhelming, so I’m asking for prayers for clarity, for the right decision to be made, and for a sense of peace & courage. I’ve also worked up the courage to pray for a miracle – complete healing without surgical intervention.
We have not shared any of this information with our kids and don’t plan to do so until we have a clear idea of treatment. I am very open to talking about it though, please feel free to ask questions or check in.
Thank you in advance for your prayers!
P.S. If you want to know more about what an acoustic neuroma is, you can check www.anausa.org or http://www.mayoclinic.org/diseases-conditions/acoustic-neuroma/home/ovc-20339659