MVD Diary - Karen Spicola
Monday, May 7, 2001
I'm beginning my MVD experience on the Monday my husband and I boarded the plane in Colorado and headed for Pennsylvania because, in my mind, that was my first real step into my surgical experience. As you all know, I had several weeks of apprehension and misgivings before I started on this journey but I must tell you that the minute we stepped off the plane in Pittsburgh a complete calm came over me. I felt like I had a job to do and my main goal was to get it done. We checked into the Marriott Residence Inn in Oakland (an area in Pittsburgh about 5 minutes from Presbyterian Hospital) and found the room with kitchenette to be quite comfy. Our daughter had booked us into a handicap room, which I thought was a bit "over-kill", but later found the bars on the wall in the shower to be invaluable. We had dinner at a restaurant across the street and went to bed quite early because we had gotten up during the wee hours to take our flight that morning.
Tuesday, May 8, 2001
Tuesday morning we took the hotel shuttle to Presbyterian Hospital for my appointment with Dr. Kassam. I hadn't met him before and was excited to do so. Lois came in and introduced herself and she is every bit as capable and "just plain nice" as she came off on the phone and Internet. Dr Horowitz came in and explained about the surgery, most of which I had learned from the support group, then Dr Kassam joined us. After meeting the two of them I knew I had done my homework well and had chosen the right doctors and the right hospital for me. I was in the most capable of hands. Kassam was little concerned that it had only been 7 months since my last Botox injections but said as long as they could get a lateral spread it shouldn't be a problem. He informed me that the spasm side of my face wouldn't look the same after surgery because I already had some tonus developed. From this office visit we proceeded to the rest of my day of tests - hearing, hospital admission & registration, blood work, chest x-ray, EKG, interview with a PA in anesthesiology, BSEP, and finally a lateral spread test. For the lateral spread test they put electrodes on my forehead and chin and then placed an electric probe on my temple. I'm not sure what was supposed to show up on the screen but the first two times they attempted it, it didn't show what they wanted. I had this panicky feeling that I wasn't going to be able to have the surgery. The technicians finally called in a neuro physiologist, who said they'd have to turn up the voltage to see if they could get a spread and ask if I was willing to undergo the discomfort. I told them to go for it because I had no intention of going home without surgery. Well, the test was quite uncomfortable, but when I heard them say "We got it" I was overjoyed.
Wednesday, May 9, 2001
Wednesday was a free day and we enjoyed exploring Pittsburgh. Ginger from Dr Kassam's office called to say my surgery was scheduled for 7:30 AM on Thursday, the first of the day. We were to be there by 6:00 AM so we went to bed early again that night.
Thursday, May 10, 2001, "MVD-Day":
Thursday we left for the hospital bright and early - went to admissions, then to a room where I changed into a hospital gown and my husband was shown to a surgical waiting room. I couldn't believe how relaxed I felt and was just anxious to get on the other side of my surgery. They then took me to a prep room where an anesthesiologist resident started my IVs then rolled me into the OR. The clock on the wall said 7:30 as he was putting a mask over my face. The next thing I remember was Dr. Kassam asking me to raise my eyebrows and smile, which I could do without twitching. But I have to confess at that point I really didn't care if I was twitching or not. I was definitely in the basic survival mode. I got sick in recovery and they gave me something to relieve that. I also took the pain medication whenever it was offered. I was taken to ICU and the next 24 hours are just a blur in my mind now. I remember a very dry mouth, stiff neck, headache, my low back and legs were hurting (don't know what that was about) BUT I WASN'T IN SPASM ANY LONGER! I sucked on ice cubes and continued to take the pain medicine when offered.
Friday, May 11, 2001, The Day After:
I remember the first meal tray they brought me the next day was Salisbury steak with broccoli and cauliflower and the smell made me really nauseous and my husband had to take the tray out. Anything solid that I put in my mouth seemed to swell up and I couldn't swallow it. Drs. K & H visited me and said everything seemed to be going as it should. Sometime later that evening they brought Janie Frye into the room as my roommate. She is also a member of the support group and had just had her surgery. We were both too traumatized to talk much at that point but my husband told me she was there. Several hours later (about 10:30 PM) they moved me to a private room on another floor. There was a lot more room and the bed was much softer.
Saturday, May 12, 2001, Two Days Post-op:
By Saturday morning things were starting to look brighter. The nurse came in and removed the Foley catheter and the remaining IV lines. At this point my pain was being kept under control by 2 small codeine pills and an occasional Tylenol. I was given permission to take a shower from the neck down and put on one of my own nightgowns. What a luxury not to have my tail feathers flapping in the wind in those silly hospital gowns. Once or twice my husband walked with me up and down the halls, which exhausted me but ultimately gave me more energy. My appetite remained poor and about the only thing that went down well was fruit. Dr. K visited in the afternoon and when I told him I was experiencing a little vertigo he said that was just "a sign the fish bowl was refilling and it should diminish soon", which it did.
Sunday, May 13, 2001, Three Days Post-op:
I opted to stay in the hospital an extra day and was released before noon on Sunday. Our daughter had flown in from Colorado the night before to stay with me for the following week, allowing my husband to get back home to attend to business. Before we left the hospital we all walked down the hall to visit with Janie Frye, who looked great and was feeling similar to what I was.
Monday, May 14, - Wednesday, May 16, 2001, Days 4-6 Post-op:
Week two consisted mainly of resting in our hotel room, eating a little, watching lots of TV, and taking short shuttle trips to various areas of Pittsburgh for lunch and short walks. (Now I know what it will be like to be in a nursing home someday because my whole day evolved around "What am I going to eat?" and "Where can the shuttle take me?") My appetite was still poor and my nighttime sleep patterns were interrupted with wild dreams and periods of wakefulness. When I looked into the mirror I could see that my HFS side did, in fact, look slightly different than the other side. But now that I could move both sides together again it wouldn't be noticeable to anyone other than me.
Thursday, May 17, 2001, Seven Days Post-op:
On Thursday of this week we went back to Presby Hospital for Lois to remove my sutures (which looked fine) and have a hearing test (which showed slightly diminished hearing in my non-surgical ear).
Friday, May 18, 2001, Eight Days Post-op:
The following morning we boarded a flight for Colorado and my fears of having pain in my ears during the flight proved to be unfounded. I did take an Actifed before leaving Pittsburgh but am not sure it was necessary. The flight was uneventful and I was grateful and very tired when we finally got home. I found each day I was staying up for longer periods of time and sleeping less during the day. I tried to take 2-3 short walks outside each day but had to wear sunglasses because the sun made me a little sick to my stomach.
Week Three
At 17 days (week three) post op from my MVD my pain consisted of a slight headache when I overdid on activity and a slight pulling in the incision area. Most days I didn't even need to take Tylenol. I wasn't noticing the ear fullness much anymore unless I was in a very noisy environment and that bothered me a bit. The facial lopsidedness seemed to be evening out as I was getting used to using both sides of my face together again. My appetite was (unfortunately) picking up and I could almost face all kinds of food again. My voice still had a raspy warble -- especially when I got tired. I took short walks each day, followed by a rest period, but was no longer sleeping for long periods during the day, which improved my night time sleep. I had one matter of concern during this week. When I closed my eyes to rest I felt an intermittent pulling in the outer quadrant of my lower eyelid on my previously affected side. I got quite upset the first day I noticed it (12th day post op) but it didn't seem to get any worse. It didn't occur when I chewed or talked -- just when I closed my eyes and once in a while when I was reading. Upon talking to Lois about this flutter she assured me that Dr. Kassam said it was nothing to worry about - so I stopped worrying! Other than that, I was just low on energy, some days being worse than others. I'm an avid gardener and was chomping at the bit to get outside and start planting things. But I decided to be good for another week and then try to start doing some normal things again. The sunlight still seemed to bother me -- making me dizzy and shaky -- so I wore sunglasses and a hat when I went outdoors. I started driving on my 14th day post op but was very careful because I still had a slightly stiff neck under my incision and couldn't turn my head completely to that side.
From Week Four on:
By four weeks post op I gratefully remained SPASM FREE. I still noticed a slight flutter in my lower eyelid once in a while but was confident this was something that would correct itself with time. My hearing seemed to be much improved -- the slight congestion in my non-surgical ear was nearly gone. I felt fortunate that I hadn't had bell's palsy, vertigo, diminished hearing or any of the other post op complications that could have occurred. I still had a slight bit of residual facial weakness on my former HFS side, brought on by the tonus, but no one else could notice it. My stiff neck and incision soreness were nearly gone and I was getting full range of motion back in my neck. Appetite and sleeping habits were back to normal. I hadn't had any pain, to speak of, since my 2nd week post-op. My energy level still had a ways to go. If I did too much one day I paid for it the next. I still needed to get off my feet a couple times a day for about 15 minutes at a time. I was slowly slipping back into my normal life and feeling better each week.
Summary:
I still can't believe that it's all behind me and I'm actually SPASM FREE. Yesterday I smiled and winked at someone and the wink was on purpose! I was so excited after I did it that I called my husband and told him what a wonderful experience it was. The smallest things are becoming big pleasures to me once again. My husband asked me if I was sorry I didn't have the surgery done years ago instead of suffering with HFS for so long. I had to truthfully answer that I didn't think I could have done it any other way because working up the nerve to have the surgery was a gradual process. If my HFS hadn't progressed so rapidly the past 18 months I'd probably still be procrastinating on the surgery decision. But once I made the decision things really fell into place and I knew I was on the right road. I'll be forever grateful to Dr Kassam and Dr Horowitz for their skill, knowledge and enthusiasm and to Dr Jannetta for spending a lifetime perfecting such a surgery and passing that knowledge on for patients to benefit from in the future. I'll also never forget the support groups for being there for me. I know I couldn't have gone through the surgery without your helpful information and encouragement.To summarize my surgical experience, I think my first 48 hours after surgery were a little tougher than I anticipated and the post-op recovery period was surprisingly easier. The more time that passes finds the memory of the time immediately following surgery fading and I'm sure someday I won't recall much about it at all.