The forum so helped my family and me, I'd like to do the same for others if I can. I included much of what I wondered about pre-surgery. I've labeled sections so you can read what is important to you. Feel free to post or send me a personal message (PM) with questions or comments.
DIAGNOSIS AND SURGERY DECISIONS
I went to an ENT in May 2011 because since fall 2010 I had ringing that was louder in my right ear and sometimes experienced dizziness when I turned my head from right to left. I did not have pain or noticeable hearing loss.
Follow-up in August didn't show improvement in the dizziness and did show some hearing loss, so I had an MRI which showed a 3.8 x 3.2 x 3.2 cm AN pushing on my brain stem. The ENT sent my MRI to House Ear Clinic for a consultation, and Dr. Fayad said that because I was young and the tumor large, I wasn't a candidate for watch and wait or radiation. He recommended translab surgery because it does not involve retraction of the brain and would be easier on me and because trying to save my hearing was unrealistic.
Dr. Fayad's first call was Sunday of Labor Day weekend. He'd confer with a neuroradiologist and call Tuesday; he gave me his cell number in case I had questions. He said I could probably drive after 3 weeks and would want about 2 months off work. After working with the surgery counselor at House, surgery was scheduled with Dr. Fayad, neurotologist, and Dr. Schwartz, neurosurgeon, for Wednesday, Oct. 26 at St. Vincent Medical Center in LA.
I am 40, female, no previous surgeries or hospital stays, 5'11â€, 130 lbs. Because I hadn't been under general anesthesia before, I was nervous how my body would process it. The 5-6 hour average length of surgery (7+ if the tumor is difficult to remove from the facial nerve) was one of the selling points to me of House. Another major selling point to me was the number of AN surgeries they perform a year.
FLY v. DRIVE
Though Dr. Fayad said flying home would be no problem, my husband Jeff and I drove the 17 hours from central Colorado to LA. We wanted to have our own car since we'd need to stay in the LA area 4-5 days after the hospital stay, and we wanted departure date flexibility.
SURGERY SUPPORT
My friend Amy flew to LA on Tuesday the 25th to be with us for the surgery. She left on Friday the 28th, the same day my parents flew in. My parents stayed in LA until the day before we left. Having support and extra hands turned out to be even more helpful than anticipated.
GUEST CENTER AND HOTEL
I reserved a room at the hospital's Seton Guest Center and we stayed there several nights until they closed for plumbing repairs, when we went to Kyoto Grand Hotel. At Seton, Amy slept on the sofa closed up because it was not very comfortable when pulled out to a bed. The staffs at Seton and Kyoto were wonderful to us.
PRE-OP
In the pre-op packet from House were instructions, Rx for an anti-viral to take the 3 days before surgery, and a 21-page questionnaire to fill out and bring to the appt. with internist Dr. Stefan.
Jeff and I were in LA on Monday, Oct. 24 to be ready for appointments on Tuesday with Drs. Schwartz, Fayad, and Stefan. At House, there was more paperwork to fill out that I wish had been included in the packet. Dr. Stefan ran an ECG; tests at the hospital were blood, urinalysis, chest X-ray. Each doctor had me walk for them. I also had audiology tests at House.
Dr. Schwartz did a simple test that was telling since my symptoms had been mild. He rolled a tissue and tried to touch it to the white on the outside of my left eye, which blinked. He then did the same to the right eye. No response. I hadn't realized my right eye was becoming defenseless.
Both Drs. Schwartz and Fayad (separately) told me I'd have a few miserable days, which I did.
MY OWN SURGERY PREP
Health Care Power of Attorney
I didn't have a will, power of attorney, or health care power of attorney. We set these up before surgery and brought my health care POA to the hospital. The woman checking us in seemed a little surprised that I had one and had it with me.
CaringBridge
My aunt told me about CaringBridge.org, and Jeff set up a site for me; it is an easy way to provide surgery and recovery updates to a large group of people, which so many people have told me were most appreciated.
A month before surgery
I had my hair cut short, stopped drinking wine, and weaned myself of coffee. I was coffee-free 2 weeks before. The doctors did not say to do this, but I understand red wine to be an anticoagulant, and I wasn't sure I'd get coffee in the hospital, and if I had a headache I wanted to be sure that it wasn't caffeine-related. (I ate and drink nothing the day of surgery and in ICU, but I think you can order coffee with your breakfast once in a normal hospital room.) Though only a small section behind my ear was shaved, having shorter hair has been much less taxing to wash and dry each day during recovery.
The night before surgery
I read that eating tomato, eggplant, or potato the day before surgery could cause a body to respond unpredictably to anesthesia, so I avoided them the last day. I did have a glass of wine with dinner because Dr. Stefan said I could, and I figured it would be a while until I had one again.
SURGERY
We reported to the hospital at 5:30 am. There were a few more questions to check me in, and then there was waiting. I changed into the gown, the IV was put in, and the anti-embolism stockings put on. A hose attached to the gown to pump warm air into it, which was wonderful in a cold hospital. We were taken upstairs about 10 am., and something was given to me to relax me and start the anesthesia process, which would take about an hour before surgery would begin.
After a 9-hour surgery, the doctors spoke to Jeff and Amy. The facial nerve was not 'involved' but was wrapped all around making the tumor difficult to remove. Dr. Schwartz was able to remove it all; he measured the tumor before he removed it, and it was 4.1 cm.
FACIAL NERVE
The facial nerve was intact after the surgery and measured a 5 on the House-Brackmann scale (1 is normal, 6 is no movement). Dr. Fayad told me it might take 9 months to a year to heal.
My right eye does not naturally blink with the left, and the right side of my mouth and cheek don't move, but there is no numbness or tingling. With a little more effort than normal, I can eat and talk but need to drink through a straw.
During my post-op appt., Dr. Stefan said facial soreness had to do with the surgery itself and my face would feel better sooner than it would take the facial nerve to recover. Yawning made my face ache quite a bit, and that feeling is almost gone when I yawn now.
BRUISING
I had bruises on my forehead from the facial nerve monitor and on my left wrist from the A line, a monitor that goes into an artery to provide constant and immediate vital signs during surgery. The bruise on my wrist grew while I was in the hospital and was very sensitive; both bruises took 3-4 weeks to heal.
ICU
Jeff and Amy saw me briefly that evening. I talked to them but don't remember their visit. My first memory after surgery was learning it was 8:30 pm. (that same evening) and feeling so tired that I was almost glad that visiting hours were over.
While in ICU on Wednesday night and Thursday, I don't remember opening my eyes much. I remember talking to Jeff and Amy but not seeing them. I don't remember talking to the ICU nurse(s). The bed was or felt too short. I was very uncomfortable and kept lying diagonally trying to get comfortable, which didn't happen.
Though I wasn't as sick to my stomach as I feared that I might be, I felt moderately nauseated for a long while. I didn't feel dizzy or the room or myself spinning, but I did feel like things were sloping down to the left, which didn't help me feel secure in the bed.
HOSPITAL
I was in ICU one day and in a private hospital room for 3 more. Doctors periodically visited to see how I was doing, how my pain was, etc. They held their finger out and then asked me to touch my nose and then touch their finger as they moved their finger around. (Jeff tells me that was comical at first, but improved.) They had me follow their finger with my eyes and then looked at my head and stomach incisions. Because of my facial nerve, they also asked me to try to raise my eyebrows, close my eyes, scrunch my nose, and purse my lips.
Once I was out of ICU, Jeff stayed with me in the hospital. St. Vincent staff brought him a blanket and a chair that reclined into a bed. He's 6'5â€, and he said it was pretty comfortable.
It was helpful to have him there to take off and put on the air pumps on my calves whenever I needed to go to the bathroom or was ready to walk. The nurses still stopped and restarted my IV; toward the end, the IV wasn't in all the time.
On Friday, Dr. Stefan gave Jeff my prescriptions and over the counter meds so he could fill them before the weekend. OTC: stool softener, eye drops, thicker eye drops. Rx: steroid to take with each meal, something for stomach acid to take in the evening, Vicodin for pain, Phenergan for nausea, Ambien for sleep.
Those around me found it amusing that I had neurosurgery and what I complained about were the finger pricks for blood sugar monitoring needed due to the steroids. My advice: avoid finger tips and thumbs and keep track of which fingers have been pricked so you can tell the nurse which finger to prick next.
I took 1 or 2 pain pills (along w/anti-nausea) not so much for my head but for my neck, shoulders, and other body aches post-surgery. Once those subsided, I didn't need any more pain meds. I don't remember taking Ambien in the hospital; I did take a ½ several nights in the hotel to get to sleep while on steroids but haven't taken many since I've been home.
The ringing in my ears was still there, still louder in the right ear, and may even be a bit louder than pre-surgery (it seems, but I have no real way to measure it).
In ICU and the first day in the hospital room I was given a sponge bath. I brought baby wipes to clean my skin during the hospital stay since I couldn't shower. It was tiring but felt great to clean up a bit, especially since I'd get pretty warm as I slept. I asked my mom to wash my back for me, and though I was still achy all over, the light massaging effect was nice.
The kindest act from the hospital staff was from a nurse who washed my hair (while staying away from the sutures behind my ear, of course). He used something that looked like a shower cap that had the shampoo already in it and heated it in the microwave for a couple seconds so it wouldn't be cold on my head. That was the best feeling--both the scalp massage and having clean hair! In the hospital room bathroom were toothbrush, toothpaste, no-rinse cleanser, and lotion. I took the cleanser to the hotel, and Jeff or Mom used it to clean my hair before the sutures were out.
PHYSICAL THERAPY
Friday, the 1st day in the hospital room, a physical therapist took me for a walk, which was two laps around the nurses station. He put a belt around my waist and held on to it. Jeff was on the other side, and I held on to his arm. He told us that I should do ankle pumps while in bed, and that I should walk several times a day or as much as I could, which we did. With each walk, I loosened my grip on Jeff's arm.
OCCUPATIONAL THERAPY
Later on Friday, an occupational therapist came to take me through some exercises and work with me on a few stairs. With the help of a nice, stable wall, I side-stepped, stood on each foot, walked an imaginary tightrope, and did a side-step while alternating one foot behind and then in front of the other. I was also to do these exercises several times a day. Each time, I relied on the wall less. The exercises came in handy; I was surprised that I actually needed to side-step in several locations as we walked in LA the following week.
OPHTHAMOLOGIST
Dr. Roberts visited Saturday and asked us to schedule an appointment that week for a fuller exam, but took time to look at my eyes and explain what some of the risks and options were. With the eye not naturally blinking to re-wet or protect itself, it could get scratched or infected. I should use eye drops and tape it closed each night, could wear a contact to help keep moisture in, or could have a small piece of silicon temporarily block my tear duct from draining (first into the nose and subsequently to the mouth) to keep the tears up in the eyes.
Dr. Roberts gave me a moisture chamber, a clear eye patch with some cushion around it and an elastic band to go around the head. The elastic band really hurt my incision, so Jeff and Dad bought a soft glasses strap and rigged it to the moisture chamber. It didn't stay on as well, but it was kinder to the incision. It helped when I was outside, in the car, or anywhere air was blowing.
HOSPITAL DISCHARGE
On Sunday, a doctor asked how I was doing and if I was ready to be discharged. I felt ok but hadn't been in the hospital before and didn't really know if I was ready. He suggested that if I was feeling pretty good that I leave the hospital to avoid infection and so that I'd work harder, e.g., walk farther to the bathroom, not have my meals served to me, etc., so I was discharged later that day. The nurse gave me my discharge instructions and told me to call House or Dr. Fayad if I had any problem, including a CSF leak or fever.
POST-OP
Dr. Fayad removed the sutures a week after surgery. The skin around my ear felt a lot better, plus I could then take a shower. He told us to call after seeing the ophthalmologist and internist. I asked if my teeth would shift since the facial muscles were pulling, or not pulling, on them differently; he said they wouldn't.
The next day, Dr. Roberts gave me an eye exam, said my eye was healthy, said to start seeing an ophthalmologist when I returned home, and put a contact in my right eye to help retain moisture. I don't wear contacts and didn't like having something in my eye, so when I took it out a week later, I didn't put another in. With drops, moisture chamber, and forced blinking, my eye seemed to retain moisture just as well without it.
I also saw Dr. Stefan. He tested my reflexes, moved my legs and asked if it hurt (it didn't), and said the stomach sutures would dissolve in three weeks.
While on steroids, I was very hungry and woke up at 3 am. to eat, so I kept cookies by the bed. I read of others on the forum whose taste buds were off for a while, but that did not happen to me. I did lose muscle tone quickly, and my skin was extra dry.
While in LA, I was walking with guidance. When I was tired, I didn't feel at risk of falling, I just needed steadying. As you can read in more detail in other forum posts, because the tumor was large, the left side had started compensating before the translab surgery, so regaining my balance after losing the vestibular (balance) nerve wasn't as difficult as it might have been if the tumor were smaller.
I needed ½ or ¼ of a nausea pill for one 20-minute car trip in LA but didn't need any on later trips.
HEARING AIDS & BEING SINGLE-SIDE DEAF (SSD)
My ENT suggested that I ask about a bone anchored hearing aid (BAHA). House verified that my insurance would not cover one and said I could work with insurance on it, but it would affect my surgery date (so I didn't). Dr. Fayad said to wait on BAHA or other hearing aids until my follow up visit next October as by that time there may be new options, e.g., something that goes under the skin or that could be implanted into a tooth. He said to do nothing for a year; not to even let anyone clean that ear, as it is pretty much his ear now.
In quieter situations I almost forget that I am SSD. Several times I've put the phone up to my right ear and it's taken a second to remember that the phone isn't broken. In a room with brick walls and a lot of people, on the other hand, listening takes more work. So far I have learned that if a man sits to my right (deaf ear), I can hear him, but if a woman sits there, I can't hear her amid the background conversations.
CLEARED TO GO HOME
Dr. Fayad met us in the lobby of the Kyoto Grand Hotel at 7:30 am. on Sunday, Nov. 6 to clear us to go home. He asked if I had encountered any problems, which I hadn't, reminded me that ginger is good if I felt nauseated, and had me move my face while showing Jeff what he was looking for and where. He said to provide him periodic updates, which we will when something big changes, but haven't yet.
We drove home in 2 days. I slept periodically but needed no nausea medicine. I ate more DQ Blizzards than I should admit; toward the end of the trip, I was having mediums (plural) when pre-surgery I would have had one mini Blizzard.
HOME AND RECOVERY
It's nice to be back, though it took about 2 weeks at home to get into a routine. I don't like eye drops or not being able to move the right side of my face. Dr. Fayad said to have faith that the facial nerve will recover but not to watch for signs every day.
For the first 2.5 or 3 weeks after surgery, the right side of my head sometimes felt heavy, and when I was tired, I described the world as sloping down and to the left for me. It wasn't vertigo, just time for another nap! I don't feel either effect any longer. The tinnitus is louder as I get tired. Even when I'm not tired, it can be rather loud inside my head, though it doesn't keep me up at night. I'm also no longer waking up in the middle of the night to eat.
My right eye tracks fine, and I read and write as long as I don't do too much at a time. I wear the clear eye patch when I'm in the car or outside in high and dry Colorado wind. I can now close my eye almost all the way and more quickly than I could in the early weeks, but it would still close too slowly to protect itself. At night, Jeff puts a couple thick drops in and tapes my eye closed while I sleep; my advice: a wider piece of tape is more comfortable than a narrow one. During the day, eye drops and drinking lots of water help.
Some of my words are harder to understand, but a little patience by the listener and some repetition are usually all that's needed. Bs, Ps, Fs, and Vs are harder to say. My right ear is slightly numb, but there is no tingling or numbness in my face, I just can't move the muscles on the right yet. While my face and ear are still tender, I am thankful that I haven't had headaches (unless I stand up too fast) or dizziness or any real pain since I got out of the too-small-ICU bed.
The cut on my stomach is 2†wide. Where they took fat is darker; not sure if it's from bruising, healing, or is just the way it is going to be. I remind myself that it was for a good cause.
The post-op instructions said no alcohol for 2 weeks, though I really didn't want a glass of wine until about 4 weeks. I remained off coffee for almost 5 weeks so it wouldn't interfere with my sleep if I needed a nap.
I wasn't given PT , OT or facial exercises but learned on the forum that walking would be the biggest help at the beginning. I walked most days and am up to 2 miles now.
DRIVING
I waited until almost 5 weeks before my first short drive in our small town, not for neck pain but for energy level and vision reasons. I'll keep my driving to a minimum while I can.
WORK
I think I'll be ready to work part-time at 7 weeks. I telecommute, so returning will be easier than if I had to drive and work in an office all day. I'll increase hours as stamina allows.
Victoria
