My journey began with a trip to the ENT on March 7th 2011 because of worsening deafness in my right ear, which i had checked out previously in 2005. At that time, i was told my hearing was perfect. However, now my hearing loss was accompanied by an annoying buzzing sound that could be ignored all day, but at night kept me from sleeping. This latest ENT, Dr. Saffran, confirmed the hearing loss and was also concerned that it was in only one ear. He told me about a very rare condition called a benign acoustic neuroma. On March 9th, he sent me for an MRI with contrast. The MRI confirmed that I had this very rare condition, 3+ cm rare. Thank god for Dr. Saffran! He referred me to the neurologist Dr. Melvin Field. It was because of Dr. Field that my husband and I faced the surgery with calmness and without fear. Dr. Field will never fully know how fortunate we felt to have had him as my neurosurgeon. March 26th was the first time I saw the images of the tumor in his office. He had been on vacation and on his return opened his office on a Saturday so his patients wouldn't have to wait. This made such an impression on us that was further enhanced when we met him. Dr. Field was thorough and methodical, yet he didn't dumb down any explanations. He did not use highly technical, difficult to understand medical jargon. He called things what they were, explained everything honestly, and didn't inject any of his own emotions into his descriptions. The tumor was large and it was pushing against my brain stem, so much so that the area that stores the cerebrospinal fluid was enlarged. Surgery was scheduled for May 12th. I had no symptoms other than the hearing loss in my right ear. However, in hindsight we realize that i was assigning other reasons to things that were being caused by the tumor I didn't know I had. For example, headaches I attributed to sinuses and numbness I attributed to an old mattress.
The day of the surgery arrived and I was expected to arrive at the hospital at 4 am! Before the surgery, I'd get another MRI and they'd begin mapping my brain with state-of-the-art software (sort of like GPS for the brain). I have to mention that the week before the surgery i was told that the hospital wanted to film the surgery! I said no. i didn't want to end up on YouTube
Every two hours throughout the surgery, Dr. Field would update my husband Larry on my condition. Apparently, the tumor was extremely sticky and bled a lot. Usually, they try to find and isolate the seventh cranial nerve within the first hour and a half of surgery. They didn't find mine until the last hour. Nine hours later, the surgery complete, I was placed in Neuro Critical Care. Larry said it took four days to get my vitals under control. I was pretty heavily sedated for the pain so I don't remember being in critical care at all. I remember getting sick from the anesthesia and feeling like I was upside-down. After four days in critical care, i was moved to the Neuro Surgical Unit. During that time, my equilibrium was so negatively affected by the tumor and its removal that I couldn't walk, nor did I know which way was up. I had hearing loss in my right ear, absolutely no balance, double vision, right-side facial paralysis, which meant I couldn't close my right eye or blink, but no tinnitus... yet. I also still had issues with my vitals, which is why they wouldn't transfer me to the rehab unit. My blood sugar was off, so i was on insulin as necessary, even though I have no history of diabetes. My heart rate and temperature were inconsistent. I was sent for chest x-rays and had blood work done twice. I was on an IV antibiotic for almost the entire time I was in the hospital and rehab unit. On May 23rd, before leaving Florida Hospital, I had gold weights implanted in my right eye. On May 24th, I was moved to Winter Park Memorial Hospital's rehabilitation unit. There, i began my occupational therapy, physical therapy, and speech therapy. I discovered I could no longer do simple things like stand with my feet together. I remember watching a commercial for an outdoor grill and being fascinated as the people danced next to their grills. They were doing moves that I could no longer do. It was unbelievable how a tumor had changed my entire life. But, a life that was still mine to live.
My worst moment came when they thought I might have a blood clot in my legs. I had been complaining of aches in my left leg as if the leg were falling asleep. So, they decided to check for a blood clot. I didn't realize that I would no longer be allowed to stand on my feet until they performed the test and got the results back. What this meant was I couldn't even go to the bathroom or use the bedside commode. I was forced to use the bedpan. Have I mentioned how much I loathe the bedpan? Because I was considered a fall risk, I could not leave my bed unless I called the nurse. I quickly got used to the lack of privacy and being walked into the bathroom by a nurse. It's amazing what a person can get used to and what becomes normal. Even though I had to call the nurse, it became part of my routine. So, it was devastating to hear that I could no longer be walked to the bathroom, that my therapy was put on hold, and that I had to use a bedpan. Thank god that i got a clean bill of health within a few hours, didn't have a blood clot and could continue my therapy and go to the bathroom!
They finally discharged me on June 4th. Almost a month after my journey began.
My recommendations pre-surgery: be absolutely comfortable with the surgeon proposing to open up your skull and operate on your brain. Research the surgeon's credentials, education, and surgical history removing neuromas. The initial referral was luck, but the subsequent research and final meeting with him was deliberate. Dr. Field is a board-certified neurosurgeon who specializes in minimally invasive endoscopic brain surgery for various forms of brain disorders including skull base tumors, Trigeminal Neuralgia, Hemifacial Spasm, Acoustic Neuromas and Pituitary Tumors. Dr. Field is nationally recognized as an expert in this field. He was a Florida Academic Scholar at University of Florida, was selected for the University's Junior Honor's Medical Program, and completed his internship in general surgery and residency in neurological surgery at University of Pittsburgh Medical Center. University of Pittsburgh ranked #14 in medical research and #28 in best primary care in U.S. News 2011 rankings of best medical schools. Dr. Field is my hero and I will be eternally grateful for his skill, passion, and temperament.
Post-op recommendations, specifically after gold-weight implant surgery: have the surgeon provide written cleaning/eye care instructions for the affected eye to the nursing staff! Although the doctor verbally mentioned warm and cold compresses to my husband, he did not write it in the eye-care instructions left with the nursing staff. They were dutifully putting lubricating drops in my eye every two hours post AN surgery, and were taping a gauze patch over my eye pre-gold-weight surgery, but, they weren't cleaning the eye. So, there was a 2-week accumulation of drops and goo in my eye. I didn't even realize that i had double vision until my husband began gently cleaning the eye. So make sure you get proper eye care instructions from your surgeon for the medical staff. Do not clean your eye unless your eye surgeon says it's OK, but when he or she does, make sure the nursing staff is aware of how to properly do so.
I can't tell you what to expect after AN surgery. The acoustic neuromas come in all different sizes and we're all different. i've read posts in this forum where the ANer was home within three days. I've read about hearing loss and no hearing loss, about facial paralysis and no facial paralysis, and about balance/equilibrium issues and no such issues. While the post-surgical effects are all different, one thing is common: We all heal. We all get better. So, whether it takes 3 days or 3 months or 3 years, know that you're not alone.
It is now almost 80 days post-surgery and I'm still walking with a cane, I still have balance issues, and the right side of my face is still paralyzed. I continue to go to outpatient physical therapy twice a week, which is really helping. I have a long way to go, but I have also come a long way. My journey continues.
