My surgery experience
I was diagnosed July 13 with a 2.7 cm acoustic neuroma on the right side impacting my facial nerve with serviceable hearing. It was found because I went for an MRI due to the loss of hearing. I turned 51 in June and in good health.
On November 2 I had the tumor surgically removed via retro sigmoid by Dr. Fred Barker and Dr. Brad Welling at MGH in Boston. The first 48 hours of coming off the anesthesia and nausea was horrendous. By Saturday, November 5, I could feel a tiny bit liquid coming out my nose and on Monday when the work week started back we discussed putting in a lumbar drain or surgery. Monday afternoon I had an “add-on” CSF leak repair surgery that took 2 1/2 hours (in addition to the original 8 1/2 hour surgery I had on Wednesday.)
In the first surgery they removed 98% of the tumor and feel that they’ve killed his blood supply although I will of course be on observation overtime. They could not save my hearing. I have pretty good facial muscle movement overall but I have dry eye in that right side of my eye and I have now developed oral thrush that is developed in orally because of the lack of normal functioning of that facial nerve.
I was discharged from MGH on Wednesday (after the second surgery on Monday…) and I’m staying in Boston for two weeks until the sutures are removed. The merry go round of pain pills and anesthesia and nausea and constipation is definitely one I would like to get off. For pain, I am only on Tylenol now and have been for just 48 hours. There’s several weeks of steroids that remain so I know there’s a lot going on in my head… I am starting immediately with vestibular therapy exercises because I have double vision that I did not have before hand
My standing balance is pretty good actually but the vestibular therapy on my eyes is incredibly difficult. I wanted to share my story and I appreciate hearing others. This is beginning of a second chapter of a long haul. I am incredibly fortunate to have a great support system and doctors and most importantly a biopsy confirmation that there’s no question that it was a benign tumor. And to reiterate that size , location all give different symptoms and outcomes. I might have chosen radiation but for the unknown of swelling.
If I had to do it again, I would understand the cycle of the different medicines they’re going to give you and how they will impact your body and advocate for yourself to minimize any side effects that can be minimized. because those we pretty much all experience from the anesthesia and the steroids and the pain meds. I am four days out from that second surgery and I walked up a flight of stairs and I took a shower alone for sure I am taking baby steps with the various therapies. I wish us all the best on these tumors.