2nd email that I sent to those who have been praying for me following my diagnosis back in September.
My ABR test (to evaluate the potential for saving my hearing through a retrosigmoid surgical approach) last Tuesday went fine. Other than being loud and annoying, it was actually a little relaxing to be able to lay in the dark with my eyes closed and pray. After the ABR test, I met with the U of M neurosurgeon and ENT surgeon. They answered all of the questions I wanted to discuss (nothing new or earth-shattering was brought up or presented) and I left feeling relatively settled on choosing the translabyrinthine approach.
The appointment at Mayo started off with just the neurosurgeon. We discussed my tumor, the two surgical approaches, and again how he thought the translab approach would be his recommendation due to the low chance at saving my hearing. The ENT surgeon came in a while later and upon sitting down, said his recommendation was the retrosig approach. I was shocked – not only because it seemed to catch the neurosurgeon just a bit off guard, but because of his reasons for his recommendation. He said that I have a right-side dominant sigmoid sinus and a high-riding jugular bulb. What does that mean? Apparently, it makes the translab approach more difficult and can hinder the view of the tumor somewhat. There is also the potential for developing a clot in the jugular bulb (albeit a very slim chance) which could lead to a stroke (again, a low chance, but still a chance.) Going in to the appointment at Mayo I wasn’t interested in the retrosig approach for two main reasons – 1. it is more invasive, and 2. if you’re prone to headaches, the potential for them to be chronic after surgery is greater. I have headaches almost daily (though not debilitating) and I hate the thought of living with chronic, painful ones.
I was able to keep my emotions in check until after our appointment ended. After that, I let the tears flow as Jake and I drove home. I’m frustrated, sad, and mad all at the same time. I wish that the decision was clearer to me at this point. The thought of becoming single-side deaf (SSD) on the right side was hard enough for me to get comfortable with and now I have to consider a stroke risk on top of that. I know a major lesson that God is teaching me through all of this is to trust Him completely. Yes, the treatment choices I have to consider are life-altering, but my condition *is* treatable and I’m extremely grateful for that. I know I will have a difficult recovery, but I’ll be given the opportunity to say “yes” to letting others help me and my family (which if you know me at all, is not easy for me to do – I’m much more comfortable being the one helping.) I’m being pushed out of my comfort zone to be vulnerable, ask for help, and allow others to support me.
So what’s next? I plan to contact two surgeons in California who specialize in the surgical treatment of my tumor. They review your scans and hearing tests and offer a phone consultation – for free. I found out about them through a FB group I joined. They are both well-respected in their field and from what I’ve read, people travel from all over the world to be treated by them. I am praying my treatment choice will be clearer after these two consultations.
If you’ve hung on this long through my post, thank you. And more importantly, thank you for your continued prayers and support. I have had many more peaceful days than anxious ones and I know that continues to be because of your prayers.