Deborah E. Bifulco, New Jersey, USA
Age of Diagnosis: 52 years old
Debbi was diagnosed in March of 2008 with a 2.4 cm Acoustic Neuroma and went on to have a craniotomy using the translabyrinthine approach on April 30, 2008.
My Story…
Sometimes life has a way of grabbing you by the throat at the most unexpected times. Such was the case for me in the early spring of 2008.
I was going along, happy and healthy … one might even say, blissfully ignorant!
The calm before the storm…
In the early part of 2007 I started to have some indications that my hearing was slipping just a little. Now, you have to understand that my dad went suddenly deaf in one ear when he was in his 30’s and the hearing in his “good “ ear has slowly gotten worse with age. So, when I started to notice that I wasn’t hearing things quite as well as I once did, I chalked it up to being over 50 and fighting a losing battle with genetics. In short, I ignored it for as long as possible.
During that time, I also became aware that my balance wasn’t quite as good as it once was either. Again, I blamed it on getting older, and on not practicing yoga as faithfully as I should. I diligently practiced the tree-pose and expected the best. Meanwhile, I continued to accumulate little bruises from bumping into things that someone else would probably have been able to avoid. When people would ask me where I got some glorious bruise, I’d just laugh about my inability to avoid immovable objects. I am quite sure that Willie became convinced that he’d married a klutz.
Finally, in February of 2008, I made an appointment with my Otolaryngologist (also know as an ENT) to get my hearing checked, fully expecting to be told that I might need a hearing aid (and not happy about it!) I knew during the hearing test that I was missing a lot of sounds with my right ear; in fact, it was pretty upsetting. The ENT told me that I had asymmetrical (one-sided) hearing loss and we discussed my dad’s history as a possible contributor. He then said he wanted me to go for an MRI to rule out “anything else.” I went home with the orders for the MRI, made the appointment, and didn’t really think much more about it. I know that there are a lot of people who worry about brain tumors, but I was firmly convinced that my hearing loss was genetic.
Fast forward several weeks. My mother in law was rushed to the hospital with a ruptured appendix, and spent the next 8 days in the hospital. During that time, I was scheduled for the MRI which my wonderful husband, Willie, insisted I have (and bless him for that as I would probably have postponed it for months). I am severely claustrophobic, so had to be sedated prior to the MRI, which I had late on a Monday. I got a call from my ENT that same afternoon asking me to come in the next day to review the results. I was so preoccupied with my mother in law’s hospitalization that I never stopped to wonder why I was hearing from the ENT so quickly… A word to the wise – they’re not usually so quick to call when it is good news…
Imagine my total shock the next day when the ENT told me that I had a tumor in my head! I remember being eerily calm, asking a few questions (chief among them being whether or not it was malignant – it’s not,) getting the name of a surgeon, and leaving with my MRI. I called Willie and my parents and told them, rather matter-of-factly, that I had a tumor in my head. I’m still not sure how you break this kind of news in a way that doesn’t totally scare your family. I think my parents thought I was joking at first. As for me, I was just hoping I’d wake up and discover it was all a dream! I kept saying over and over to myself – you’ve got a brain tumor, you’ve got a brain tumor.
You’ve got a brain tumor…
I think it took a couple of hours for reality to start to settle in. Willie and I spent several hours that night online trying to learn all we could about Acoustic Neuromas. None of it was particularly comforting and some of it was downright terrifying. We found the ANAUSA website and patient forum early in the process and spent many hours there reading. I remember thinking to myself, “my God, how can these people sound so positive after all they’ve gone through!?” Little did I know…
I would characterize the first few weeks after the diagnosis as scary and overwhelming. I would read for awhile, and then shut down – it was just so much to absorb. Good grief, I have a brain tumor!!! And, in the midst of it, my mother in law really needed help getting around when she was finally released from the hospital. In a strange way, I believe that her hospitalization and recovery was a great diversion for me during that time. It kept me from focusing entirely on myself, which was a good thing. It would have been very easy to crawl inside myself during that time and hide from the world.
Still, in the darkest hours, late a night, all I could think of was this thing in my head.
The discovery process…
My husband and I talked to an acoustic neuroma patient I connected with on the AN forum during the first week. He gave us much to think about and much reason for optimism since he had a near-flawless surgery and recovery. I recently met him face-to-face for the first time, which was a wonderful experience. As it turned out, I chose the same surgical team as he did, so we’ve had much to talk about. I am continually grateful for the Acoustic Neuroma Association and their wonderful website for providing the access to so many other patients. It was frightening to learn that I had a somewhat rare brain tumor, but what a comfort to find this whole “family” of people who had the same thing as me and appeared to be doing so well!
I spent many hours in those first weeks learning about the various treatments for acoustic neuromas. I was initially set on radiation – you’re in, you’re out, life goes on more or less the same. However, the more I read, the more I realized that no treatment is without risk, And, the more I realized that I would probably not have the patience or emotional fortitude to wait up to several years to see if the tumor had “died.”
Of all the surgeries, I hoped that I would be able to have Middle Fossa as it seemed to afford the greatest hope for hearing preservation. My last choice was translab simply because it meant 100% hearing loss in the affected ear. I was afraid of being totally deaf in one hear. I had watched my dad struggle with it, and although he never really talked about it, I knew it was difficult. I convinced myself that I would not go down that road – not me!
I picked up a couple of extra CDs from the radiology facility; and sent one to a leading treatment center in Los Angeles. They were quick to respond and the surgeon I spoke with was the first to tell me that the position of the tumor was such that radiation would probably not be an option and (worse) that translab was the best approach. I was horrified! Not only was the door on radiation slamming shut, but the scariest surgical approach (to me) was being recommended. I wasn’t ready to be deaf in one ear. At this point, my hearing in my right ear, although impaired, was sufficient that I could talk on the phone if necessary using that ear. And, even though I didn’t really think I would be happy with radiation, I still wanted to have that option.
I set out learning more about translab. What I learned is that it is one of the oldest approaches and has the highest percentage of success in preserving the facial (7th cranial) nerve. So, there was a bright spot in all of this. Of course, I wasn’t going to be one of those unfortunate folks who ended up with a paralyzed face! Not me.
I think that it was very helpful to me personally to arm myself with as much information as possible before I talked to the doctors. I believe in being very involved in the decisions relating to my own health, and in this case, I needed to educate myself. When I talked with the surgeons, I had a rather extensive list of questions and made copious notes. I also had Willie right beside me on every appointment, making his own notes. This was very helpful because at times I would get overwhelmed and “tune out” during parts of the conversations. Having two sets of ears on was critical.
Deciding on the team and the approach…
We met with two more surgical teams, one in NJ and one New York. They both said basically the same thing – surgery was my best option and it was extremely unlikely that I’d have much chance of preserving any hearing in that ear. Wow. The NYC team did have some discussion between themselves as to whether I might be a candidate for the retro-sigmoid approach. Dr. G, the neurosurgeon thought maybe yes; but Dr. R, the neurotologist, said I had virtually no chance of preserving hearing and the facial nerve risk would be greater with retro. So, translab it was.
In many ways, having such a strong vote for one particular surgical approach made it easier. In not really having options, I was able to focus on accepting that I was going to have brain surgery. Some days that was easier than others. I also had time to prepare myself for being deaf in one ear – with any other surgical approach, there would have been a chance of coming out of it with some hearing. I tried blocking or plugging my right ear so that I could understand what it would feel like to be deaf. Unfortunately, you can’t really block all noise that way, so I was still left wondering what it would be like.
In preparing myself mentally for sugary, I did what I always do – I read as much as possible, asked tons of questions, and tried to find all the pluses to the situation. Yeah, because having brain surgery is high on everyone’s list of desired life experiences! Ha.
We chose the surgical team in New York because they’d been doing this surgery together for many years, and they do 50+ a year. I felt strongly that having an experienced team was extremely important. I feel very fortunate that I live close enough to NYC to be able to have excellent choices in medical care. An important factor in choosing the medical team is having the utmost confidence in them – I felt I was literally going to be putting my life in these guys’ hands. And, I must say that I felt totally comfortable with the decision, as did Willie.
Loved ones…
A moment about how hard this is on the families and loved ones… I maintain to this day that I had the easiest part of this. It is extremely difficult for loved ones to be sitting by watching this unfold, and to not be able to really do anything to “fix” it. They also get to put up with the roller coaster of emotions that the patient goes through – and, believe me, that’s one wild ride! My husband and parents all deserve medals. I would go from wanting to talk about nothing but the acoustic neuroma, to not wanting to talk about it at all. I would tune out during conversations, lost in my own little world of acoustic neuromas. I’m sure I wasn’t a lot of fun to be around during those weeks; and I remain eternally grateful to my family and friends for letting me talk, cry, laugh and vent.
I felt like the proverbial cat on a hot tin roof for the weeks between diagnosis and surgery. My ability to concentrate on anything for more than a few minutes was non-existent and my emotions were raw. I spent most nights sleeping only intermittently – my husband and I joke that we only slept in shifts during the early weeks. I would zone out during conversations, and all of my thoughts revolved around “E” (short for a woman’s name that I identified as being non-threatening and benign) which is what we named the tumor (believing that continuing to refer to it as “the tumor” wasn’t practical!)
My surgery date changed a couple of times early on as the scheduling nurses tried to gather the entire team that would be part of my “boogerectomy”. (Another bit of black humor designed to get us through the scary parts.) We finally locked in a date of April 30 – and the count down began…
Final Countdown…
By the time the final week rolled around I was strangely calm. I think I had asked so many questions and gathered so much information by that time that I was pretty much at ease. One of my coping mechanisms during the final weeks was an incessant need to manage every little detail of my life, as well as the lives of those around me! I am sure I tested everyone’s patience to the extreme during that time!
I went on a complete vegetarian diet for a week before surgery. Having heard horror stories about what pain meds and anesthesia can do to your digestive track, I didn’t want to take any chances with hard-to-digest foods. So I ate lots of veggies, fruit, whole grains and a little fish. I believe it helped.
The Big Day …
Surgery (a Wednesday) day started calm. We stayed in NYC the night before, and walked over to the hospital by 6 am, where we met my parents. Spent several hours in the surgical waiting room, which was a private room just for my family. An endless stream of doctors, interns, residents and nurses came in and out. Finally, around 8:30, the nurse from the Operating Room came to get me. Just a quick note here – at some hospitals, the brain surgery patients walk into the OR rather than being wheeled in on a gurney. I found it a strangely empowering experience to walk it. After entering the room, I remember looking around and saying to the rather large team of gowned and masked people “Okay, let’s get this show on the road!” There was a moment of silence followed by laughter … I got myself onto the operating table and had a few minutes to look around at all the equipment and gadgets (even a big plasma TV!) before the anesthesiologist came over and sent me to la-la land.
It’s a large surgical event, apparently. In addition to the neurosurgeon and neurotologist who actually do the cutting, there is also an anesthesia team with several people and a nerve-monitoring team, and the usual surgical nurses and residents. There were at least 10 people in the OR when I got there. The surgery took about 5 ½ hours, which was definitely the easiest part of the whole adventure for me!
The other side…
I did wake up briefly in the OR again when they took the breathing tube out, and then didn’t regain wakefulness again until I was in Recovery being greeted by my family. I was very “fuzzy” and pretty uncomfortable and wickedly thirsty! I remember having apple juice and having a heck of a time getting the straw to work. That was about the time that Willie told me that I had facial paralysis, but that my facial nerve was not permanently damaged. Not the news I wanted to hear, but it least it explained why I couldn’t keep the darned straw in my mouth. I also learned that the surgeons had to leave a few small “nubs” of “E” behind because it was firmly stuck to my facial nerve in spots.
I spent the first night in the Recovery Room because there were no beds in Neuro Intensive Care Unit (ICU). They had one other Acoustic Neuroma surgery that afternoon, and both of us spent the night in one corner of the recovery room with our own neurosurgical nurse. I had some problems with pain that first night – everything felt so uncomfortable and weird. I had a very tight pressure dressing on my head (looked like a turban) which bothered me, and of course a 2 inch incision on my belly where they took out some fat to pack in my head (wow, charming.) In all, though, it wasn’t as bad as I had anticipated, but not something I’d like to repeat anytime soon. I don’t think I slept much that first night.
I spent the second night in surgical “step-down” unit where they started to disconnect some of my tubes and the catheter (big cheer on that one!) My parents and husband, Willie, were with me constantly (or at least until the nurses kicked them out.) My friends Kura and Ellen were also regular daily visitors. Although I was fuzzy and napped a lot, I really enjoyed having my friends and family there.
I found it kind of funny that, almost without exception, the medical staff insisted on approaching the right side of my bed – and of course, that’s the side I couldn’t hear from! I was constantly reminding them to step around to the left side so that I could hear. My left ear was completely covered with the turban, so even hearing from that side was a bit muffled. When the room attendant asked if I’d like to have my room phone connected, I had to laugh! (Hello, have you seen my head???)
First Steps to recovery…
On Friday morning, I took my first short walk to the bathroom which was a major step on the road to recovery. I was eating a bit by then, and feeling pretty good all things considered. I had no dizziness problems at all, for which I am grateful. Nor did I have any blurred vision. I was a little (okay, maybe more than a little) wobbly and off balance, but, again, not bad. By the end of that second day, I was walking, albeit slowly. Willie took me for many walks around the floor and I was able to get to and from the bathroom completely unaided. The PT folks came to visit me a couple of times, gave me some precautionary notes on walking without falling over, and basically said I was good to go without any need for further therapy. Another victory!
Willie and my parents were with me almost constantly during my hospital stay. I felt wrapped in love. We talked about lots of things, and about nothing at all. Willie and I spent quiet time each night after everyone else was gone. We spent a lot of time just holding each other. You realize how much the people in your life mean to you in times like these.
The Unveiling…
On Saturday morning, they took off the turban, which was a big relief. The thing was very tight and very uncomfortable. It was pretty exciting to see the incision for the first time. I was quick to head into the bathroom with a hand mirror so that I could take a look. I was surprised at how good it looked and how close to my ear the incision was. The incision was right in my hairline so even after the first month, it really wasn’t very noticeable. On the other hand, my “numb” face didn’t look so good, and my smile made me want to scream.
I was home in three days, on Saturday morning, and delighted to be in my own bed! I was on steroids for the first week, which was both good and bad. Good because it increased my appetite which would have otherwise been non-existent; but bad because it was hard to sleep at night. The post-surgical fatigue was unlike anything I’ve ever experienced – not that it was awful, just that it would come on suddenly and like a Mack truck. I took lots of rests and naps during the first few post surgical weeks. Mom and Dad stayed with me for about 4 weeks after my surgery, which was a huge blessing. I had no energy and was quite unsteady on my feet; so being home alone would have been frightening. From a practical standpoint, having help with basic things around the house was a huge relief; more important, though, was having the emotional support as I learned how to adjust to my “new” world. Mom and I had many talks about the fear that comes from knowing your body can grow a tumor; and Dad and I had many talks about being single side deaf.
Some bumps in the road…
I’d like to say that I didn’t have any complications, but I did have a couple. I developed an infection in the incision at about the 2 week mark and was re-hospitalized for three days while they got me started on antibiotics and tried to get a culture. I came home with a PICC (Peripherally Inserted Central Catheter) line to administer my own IV antibiotics twice daily. That was a big emotional setback for me, and also set my physical recovery back by a few weeks. However, I became adept at administering my own IVs and found that it was not as bad as I had feared. I remained on the IV antibiotics for four weeks; before having the PICC line removed. It was a joyful day to have the tube dangling from the inside of my upper arm gone!
It’s all in the face…
The other major (in my mind) complication for me has been the facial palsy (this is referred to in most of the AN literature as “Facial Weakness”.) I am about four months post op as I write this and am still unable to blink my eye or produce tears. I also have a very crooked smile and limited movement on the right side of my face. However … I have also seen a lot of small improvements, which is encouraging. When I am well rested and my face is relaxed, you probably wouldn’t know there is anything wrong. If I concentrate, I can make a small smile that looks pretty normal. If I try a big smile, though, I still have what my fellow AN patients refer to as a “pirate smile.” I think my right eye is starting to develop some slight blinking movement, which is also encouraging. I did see an ophthalmologist who prescribed a removable eye weight (called a Blinkeze) which allows me to close my eye, and also to sleep without an eye patch. If it turns out that my blink doesn’t fully return, I’ll look at getting a surgically implanted eyelid weight, called a gold-weight. Meanwhile, the removable eye weight looks like a small flesh colored band-aid, barely noticeable. I am still not able to completely close that eye, although it is very, very close.
Because my facial nerve was fully functional after the surgery, the surgeons expect me to make a near-complete recovery. I may always have some weakness on that side, but in all likelihood it will only be noticeable to those who know me well, and only when I am tired. This is a chapter that remains open for me. At the 3-month mark, my facial function was ranked at between 3 and 4 on the House-Brackman scale, which is the standard most doctors use to measure facial nerve function. One is considered perfect. Immediately post surgery, I was probably between a 5 and 6, with six being the “worst” score. Nerves are tricky little beasts, and the facial nerve only heals at a maximum “speed” of about an inch a month; so the time for recovery is really uncertain. For a person who likes clarity, living with this kind of uncertainty is challenging.
I am also SSD, Single Side Deaf. Surprisingly, this hasn’t been as difficult an adjustment as I thought it would be. I spent a lot of hours worrying about this before surgery, but it hasn’t turned out to be that much of an issue. Things still sound same, the big difference is that I can’t tell what direction noise is coming from. There is sort of a hollow sound in my right ear, but no noticeable tinnitis (another bullet dodged!) Noisy restaurants are very tough for me – I have to really concentrate to hear what people at my table are saying. In all, though, not bad. I still enjoy listening to music and talking on the phone – in most respects, this hasn’t changed my life much at all. I will look into a bone conduction device, called a Transear, soon as I think I would like to have the ability to hear directionally.
What next…?
This has been an amazing experience. I have learned a lot about myself in this journey – most significantly that I am a lot stronger than I gave myself credit for, and that it would take a lot more than this to beat me! This is forcing me to learn patience, and it also forced me to slow down a bit and focus on what’s really important in my life. Yes, I had a brain tumor, and yes, I had brain surgery, and yes, I had a few complications. But I have also met some wonderful people as a result of this, and I am a stronger and better person, and I am loved by my family! I know that I won’t crumble; and that I won’t lay down and quit just because things are hard sometimes. This entire experience has challenged me on many levels, and I’ve learned that I can rise to those challenges!
In some small ways, my life will always be a little changed. I will be getting brain MRIs probably for the rest of my life and there will always be a small risk for re-growth of the tumor. I will have to take very good care of my left (hearing) ear and protect myself around loud noise. I may always have a slightly asymmetrical smile. I may always have days where I am a little wobbly. But I am still Debbi, and darned happy with my life…
The Brain Gang 
