Dear friends,
I made it to postieland! Oh happy day!
Thank you for all your posts, good thoughts, prayers.
Here is my story (and thanks to my dear hubbie for posting while I was in the hosp.):
--Translab surgery on Thurs., May 28 was seven hours. Facial nerve preserved but "scraped." Tumor completely removed, but more tumors found in my neck in a CT scan!
--Four days in ICU. Lumbar drain for 3 (?) days. I think it was Sunday before I felt like eating. Amazing care. Two more days in a private room. I walked the floor of the hospital using a cane; came home using none.
--Very excited that post-op pain was not nearly as bad as I had anticipated.
--Thankful my facial paralysis/weakness is not worse than it is (House-Brackmann grade III (to 3 1/2) out of VI). However, I wish that I had received eye ointment in the hospital before being discharged. My left eyelid does not close, and my eye was dry and hurting. At my post-op visit eleven days out my neurotologist put a tiny strip of first-aid-type tape (3-M brand) on my eyelid, just above the eyelashes, and he gave me a prescription for eye ointment (Puralube). Both of those have helped a great deal! (I put fresh tape on every day.) I have an appt. with an opthalmologist to make sure I'm doing all I need to do to preserve my eye. At two weeks out, I can feel that my eyelid is getting closer to closing. Yea!
--Of course the ointment is goopy and makes vision extremely blurry, but even without it, my eye is useless for reading. I trust that part of my vision will return.
--Lost my big smile but my husband says it's coming back.
--Have been walking every day and am up to a half hour a day in our hilly neighborhood. I am slow and very wobbly; keeping my eye gaze a few feet in front of me on the ground. It feels so good to be out-of-doors!
--It is certainly a generalization to state that acoustic neuromas are slow-growing. Mine wasn't. It's length increased by one-third in just under four months. The pathology report on my AN talks about the percentage of MIB-1 cells in the tumor and states, "This is significantly higher than seen in the typical Schwannoma and suggests the possibility of more rapid growth in any residual tumor."
--Okay, now about the additional schwannomas. A CT scan (why is wasn't an MRI is a long story; no one's fault) the night of surgery revealed several (3 or 4?) tumors on the nerve sheath of my cervical neck (from C-5 to T-1). The neuroradiologist suggested a possible diagnosis of NF-2; my neurosurgeon thinks instead that I might have NF-1 or Schwannomatosis (a new word for me!). We're in a watch and wait mode on those tumors since they aren't presenting any symptoms yet.
Goodbye for now. Thanks for listening. Off to my nap.
Best,
Brenda
