I am new to the forum, and recently diagnosed. My story seemed so bizarre to me, until I started lurking through the boards. I've only been peeking around for a few weeks, but I already feel like I've found a place where all of the crazy things that seem to come along with this diagnosis are common place. It's a reassuring feeling for sure. I am a 38 yo married mother of two beautiful children with a job in healthcare finance.
My story starts in March 2013. I was around 32 weeks pregnant when I woke up with fullness in my right ear. I attributed it to ongoing ear infections that seem to crop up every few months for me. My OB seemed unconcerned about the plugged up feeling I was having, and quite honestly, I had other issues I was dealing with related to the pregnancy. I was a scheduled induction at 37 weeks and 1 day because of preeclampsia. I gave birth to my second child, a sweet baby girl, in mid April. I'd started noticing that the hearing in my right ear wasn't quite right shortly before the induction and again blew it off as a recurring infection. I'd be in my minivan with my 3 year old son, sitting behind me and know he said something, but not be able to discern exactly what it was without turning my head towards him. Life with a toddler and newborn took over and I finally got to my ENT at the end of May still with the fullness and loss of hearing in the right ear. He checked everything out, ears clear, hearing test passed with flying colors. He thought potentially that the tubes may be "junked up" with something related to the post partum hormones. Long story short, I continued to see him every 4-6 weeks trying different OTC meds to releive congestion, etc. At the end of July my mom received a breast cancer diagnosis and I decided to wean the baby so I could get my mammogram. ENT said if it was pregnancy related it would clear up 8-12 weeks after weaning. Well it didn't. Finally ordered me for an MRI, after fighting with my insurance company to cover it. Had my MRI 11/7. He called me two days later on a Saturday night at 530pm. Told me I had a 2.8 cm x 2.1 cm acoustic neuroma. He would see me in his office Tuesday morning. Such began this short, but crazy journey. He referred me to Jefferson because that's where he sends all of his patients that he can't treat. Insurance was immediatly an issue. I very quickly made the determination that no matter what the cost, I would seek the care we felt best suited our situation and then fight with the insurance company to cover it.
I had consultations with Dr. Willcox at Jefferson, Drs. Lee and Bigelow at Penn/HUP, and two in network consults because insurance required I see a neurosurgeon and other ENT. All ultimately recommended surgery, given the size, location, and general outcomes. My decisiion was to have surgery at HUP in February with Dr. Lee and Dr. Bigelow. The in network neurosurgery recommended the most expensive option, mainly because I beleive he doesn't have the skill to try and totally remove this tumor. He recommended a subtotal resection followed by gamma. When I presented this to my insurance company, and simply pointed out that they were already on the hook for 2x the cost of surgery, they approved for me to seek care at Penn covered at 100% in network benefits which amounts to a small deductible and $100 per diem for inpatient. AWESOME NEWS!
So now the countdown to surgery is on. Preparations are underway to have help (my wonderful - now cancer free - mother) with us post op to help with my care and especially the care of my two babies. I am worried about the lifting restrictions in particular. I am worried about my three year seeing Mommy not at her best. I am worried about so many things. But in the end I know that it will work out how it's supposed to work out and will deal with whatever is put in front of me the best I can.
I welcome any good wishes, prayers, or thoughts on my journey. I thank you all for this wonderful forum.
Suzie
