Hi Everyone!
I was diagnosed with a 1.2 cm acoustic neuroma in February, 2015. I went to my ENT as I noticed hearing loss in my left ear. He had me see the audiologist after seeing nothing wrong with my ear. When we were done, the audiologist said "Wow, you were right! You really do have hearing loss in that ear!" My ENT scheduled a bunch of blood work for me along with an MRI and had me schedule another appointment with him when results were in. I was able to see my blood work was normal, so I was confident when I went for next appointment. When I heard, the good news is it's "benign", I didn't know what to think. My ENT went on to explain and talk to me for at least a half hour of what an acoustic neuroma is. He explained the different options I would have available and answered all of the questions that I could come up with, albeit, not that many as I was in shock. He further told me that an old college roommate of his had a 2.6 cm surgically removed in that past couple years and explained much more to me. He gave me the recommendations of two neurosurgeons to seek out.
I only contacted one, Rafael Tamargo at Johns Hopkins in Baltimore. After researching both surgeons, he seemed like the best, an expert. I went to meet with him in March, with my husband. He did not recommend the gamma knife due to where my tumor is located. He did, however, recommend the W&W as mine is small. I left the appointment in a whirlwind! I was prepared to schedule the surgery for this summer and he told me to wait?! No!
I spoke with him a few weeks later, after processing everything, and asked if we could move forward with the surgery this summer. I wanted it out and to forget about and to move on with my life. He suggested to come back for another MRI in May and we could see if it had grown at all and we could discuss further. There was no change in the size. He wanted me to have another MRI in six months, November. I told him my thoughts, my reasoning! I have two teenage children and will be sending the oldest off to college next summer. Not to mention tax season, our health insurance is great...on and on. He said he would do it if I wanted him to. I asked if I were his wife or daughter, what would he recommend surgery now. He said, "Absolutely, wait! There is a 50% chance that it will warrant surgery in the next five years, but there is a 50% chance that it won't."
I'm going back to my ENT in a couple weeks to have my hearing tested again as I think it's gotten worse and to get a hearing aid. I'll post again after the appointment...
So here I am, reaching out to this forum. I have read posts for months, but have just now joined to tell my story and get any feedback that any of you may have. Yes, it took me awhile, to process
Thank you for letting me share
