Wednesday, November 05, 2008 - “MVD Day”:
Today is the presidential election. Guess I can’t go vote. Arrived at 5:30am at Brotman Medical Center. Waited until called, signed more papers, and was prepped for surgery. The nurses told me I had to answer the same question over and over (“which side has the HFS?”), to make sure they were operating on the correct side. Dr. Shahinian arrived at 6:15am, and I asked him if he wanted the MRI results; he took it, but told me he had already seen them; they had already been sent on to his office. Dr Perez, anesthesiologist, arrived to talk to me and tell me he was giving me Versed & something else. IV’s started and next thing I know, I was out. Woke up in the room; I don’t really remember much, except it was the longest day of my life, it seemed. I couldn’t get comfortable; head hurt (not at injection site), just all over, but I was so tired and couldn’t sleep…. Kept waking and looking at the clock and wondering whether it was night or day. Every time I moved in the bed, the monitors would start beeping, which was so annoying. I remember throwing up several times.
Thursday, November 06, 2008 - Day 1 Post Op:
I remember thinking it was Friday already, time to check out today. Wrong, I had my days and nights all mixed up. Every time I slept, my mind would come up with election results, speeches, soap opera stories. I remember staring at the clock every hour and wondering whether it was night or day. The internist came by and said he wanted me to walk. I felt like I’d been sleeping for 3 days. When I opened my eyes, the whole room would spin. I was given Jello and juice, but I couldn’t keep it down. By the end of the day, they took out the catheter. What a relief! I had to go to the bathroom, which was quite a walk away. I felt groggy, had a headache, and I couldn’t sleep because I had so many thoughts in my head.
Friday, November 07, 2008 - Day 2 Post Op:
Had trouble swallowing; drank water and it came out of my nose. I missed drinking my iced tea (I’m a tea addict), so they let my husband bring me some. Dr Shahinian came at 6:00am to tell me the great news about finding 2 spots, but I told him the spasms were still there, and maybe even stronger. He said “no way”, he was quite sure 75% would be gone. He wanted to keep me another day because of the swallowing problem. He said it’s just not the intubation (sometimes your throat gets scratched when they stick the tubing down). He said the swallowing nerve was affected by surgery, but it would get better after a while. In the afternoon, they sent me a therapist to teach me how to swallow. He told me to hold my breath and look up. I felt like a bird. Another long day; couldn’t sleep, too noisy. I was able to get up to go to the bathroom. No more vomiting. My hair was a mess! I was still not interested in Jello or juice. My husband was allowed to bring me rice soup. That was so much better, but I still couldn’t get much sleep. The doctor said he’d come back tomorrow to show me pictures. Doctor said my hearing was intact – he monitored during surgery, but I told him I heard ocean waves; he said not to worry; it would get better.
Saturday, November 08, 2008 - Day 3 Post-Op:
Doctor arrived at 8:00am and said that I could go home. I asked the nurse for shampoo and she put on this heated cap with stuff inside. Interesting - Combed out hair before doctor got there. Doctor had taken pictures of the surgery, showing 2 locations. Nice pictures, using the endoscopic camera. He told me my bad nightmares were the result of Decadron. He felt I didn’t need it any more. I spent the night in the hotel. Slept better, but still woke up with a headache. Doctor said I might have a hard time on the drive home.
Sunday, November 09, 2008 - Day 4 Post-Op:
We had a 4 hour drive back home. Stopped for lunch. No problems. Drank a lot of fluids. Ride was fine. Not spasm free. Just have to wait it out. I lost 8 lbs. in 4 days; needed to start eating better. Slept off and on for the next few days. Hard to get comfortable; hard to sit up, but I was told to do that for faster healing. Doctor had asked me if I needed pain pills, but I told him Motrin and Tylenol would be fine. He wanted me to start on 500mg Vitamin B12 and 400mcg Folic Acid to aid healing. Since I’m a pharmacist, I see many prescriptions for 1mg Folic Acid, so I decided to go with that instead (higher dose to help heal the nerve). Ice pack worked pretty well for headache.
Wednesday, November 12, 2008 - Day 7 Post-Op:
I felt good enough to go to the grocery store and cook. I made myself a big pot of vegetable soup. I was eating up a storm. I couldn’t swallow big pieces of meat, but the vegetables were good and soft. I couldn’t help it - went back to computer work and paying bills. Making the soup was a little exhausting, but every day was getting better.
Friday, November 14, 2008 - Day 9 Post-Op:
We went to see a movie; my ear was still clogged. After movie, when we got back in the car, my left ear started ringing. Too much noise. Still tire easily.
Sunday, November 16, 2008 - Day 11 Post-Op:
I went out to lunch with the family and ate like crazy. Gained back 5 lbs. since surgery. I still had 3 more to go, so I splurged on chocolate cake. When I walked, it was still crooked; Injection site was great (no problems). Family thought twitches were better.
Tuesday, November 18, 2008 - 2 Weeks Post-Op:
Dr. Shahinian called for an update. I was so happy to hear from him; I was getting a little depressed thinking they had forgotten about me. I told him about the big sound in my ear. He scolded me for not calling him earlier, as he had given me his cell phone number. I didn’t know; I thought it was a part of the healing process. He said he had stopped the steroids from the hospital because I complained about nightmares, but he felt I needed to go back on them to preserve my hearing. He wanted Prednisone started immediately, with 60mg dose/day for first week, then tapering down. My staples (only 6 staples) were removed by my regular doctor. I still had trouble sleeping more than 3 hours without waking up with a headache. Voice was still raspy.
3 Weeks Post-Op:
Felt stronger in general, but ear was still hearing the sound of a running faucet 24/7. The Prednisone side-effects were bad – high blood pressure, palpitations, felt like I’d been running the marathon.
4 Weeks Post-Op:
The doctor wants me to go back for a follow-up, but I didn’t see the point. I was still twitching, my ear was still messed up, and I could hardly talk. I decided to ask a friend, who is an ENT, to check me out. He had an assistant do an Audiogram – “sorry, your hearing is gone”. He put a scope down my throat and told me my voicebox was paralyzed on the left. He told me with any surgery, we should wait 8 weeks to see if there is improvement. He told me to come back again for a checkup.
7 Weeks Post-Op:
I went to see my friend, the ENT again. He noticed my voice was louder, but after the scoping….no, there was no change. He offered that in the future, there is a procedure to inject Radiesse into my right vocal chord to bring up the sound volume. I declined. Also, if I continue to be deaf on the left, he said there was a new wireless unit that could be put in there to bring the sound over to the good ear. I was just glad I was done with the Prednisone, but it didn’t seem to help the ear at all; voice much louder, though.
8 Weeks Post-Op:
I notice that the twitches are not as frequent. When I get the full tonus, I can put my hand to my cheek and it goes away. Twitches that used to last 2-5 minutes are going away in 2-5 seconds. I messaged the doctor telling him that I felt I was 75% improved at this point.
Wednesday, January 07, 2009 - 9 Weeks Post-Op:
After my message to the doctor, I had 3 days where the spasms were up and down. One day would be good, the next day I’d be twitching on and off all day. I found out the importance of sleep. That was scary, but I could tell there was improvement because, even though I would get major tonus 7-8 times a day, they would only last a few seconds. They happened only when I brushed my teeth, ate, or chewed gum. I noticed that I was able to face people (waitresses, especially) without twitching. In the last 2 days, everything seems to have subsided. This morning was my first time brushing my teeth with no spasm, so I decided it’s time to finish this diary. I think I am on my way to being spasm-free. If my ear gets better, that’s fine. However, if it doesn’t, it will be well worth the sacrifice to have a quiet face.Update as of 05/20/09 - 6 Months Post-Op: It happened all of a sudden, exactly 6 months and 4 days after my MVD.......I noticed MY SPASMS WERE COMPLETELY GONE. For the last month, I got intermittent twitches that lasted seconds, but still occurred whenever I ate or opened my mouth wide or faced a stressful situation. Another trigger was biting my lip. I've been playing with it for 2 days now, just to be sure, and I can't even "make" it happen. I think I’m now finally spasm-free. For those who had MVD and still have spasms......give it time.....and have faith.....things will get better!
For details of my Botox® use see my Personal Botox® Experience.
Permission granted the HFSA to post MVD Diary on website.
Angelia Kwok, January 09, 2009 (Updated 05/10/09)