MVD Diary - Sue Davis
HISTORY
My HFS started in March 2001 with a slight twitch under my right eye. Within 6 months, the twitch moved to my eyelid and within 18 months the spasms progressed to my cheek and eventually to my lip.
Two years after the symptoms started, I mentioned the symptoms to my eye doctor. He sent me to an eye specialist who diagnosed it as HFS. Between October 2004 and March 2005, I had a series of three Botox® treatments. The treatments seemed to help the spasms somewhat and caused no side effects.
In July 2005, I decided to find a specialist in Chicago to help me manage this condition. I found a Neurologist that specializes in HFS. He started me on Neurontin (300 mg/ 3 X daily) which proved to be too much. I went to twice a day for a year, then to once a day until my surgery. He also gave me Botox® injections every three months from September 2005 until January 2007. There were two instances where the Botox® seemed to help the spasms, but for the most part, the side effects got worse. After my first treatment, my eye closed for a month! I am a teacher and had to wear dark glasses during this time! I also began to have the appearance of a stroke victim and my mouth was pulled down. For whatever reason, this doctor said I was not a candidate for surgery. I didn’t question him because surgery didn’t sound like something I wanted to pursue anyway.
In February 2007, I found this wonderful website. I began to read everything I could and was amazed at the number of people who had taken the surgical route! After signing up, Jack was kind enough to send me a list of individuals from Illinois with their email addresses. I read their profiles and noticed several of them had had their surgery with Dr. Gail Rosseau in Chicago. And so my MVD journey begins!
February 28, 2007:
March 2007:
I spoke to both my school principal and superintendent about my condition and surgery. I requested, and was granted, a family medical leave from April 26th through the end of the school year.
April 6, 2007:
After continuing to research as much as possible, I returned to see Dr. Rosseau with more questions and so she could meet my husband, Tom, who had not been with me the at the first appointment. This time, we went to the Chicago location, which is where the surgery would take place. After the appointment, we asked for a tour of the hospital. The entire 7th floor is devoted to the care of surgical patients. It contains both the ICU and the regular patient rooms as well as the physical and occupational therapy departments. This is a small hospital that specializes in brain, spinal, and orthopedic surgeries. Their staff is trained to care specifically for these types of surgical patients.
April 9, 2007:
I had all my pre-surgical testing at the Morris Hospital in Morris, IL (USA)
April 16, 2007:
I had an appointment with my family practitioner and received clearance for surgery.
April 26 - 29, 2007:
We took a weekend trip to North Carolina to visit some close friends. The hospital called my cell phone on the 27th with instructions for Monday the 30th.
Monday, April 30, 2007 - "MVD-Day":
We were up at 3:30 a.m. and left for Chicago at 4:30a.m. I was due to check in at 6:00 a.m. Traffic was kind to us and we arrived on time. We watched the sun rise, it was going to be a beautiful day.Check-in was very organized and uneventful. Within a half hour, I was out of my clothes and into a lovely hospital gown. The nurse assigned to put in the line for my IV had trouble finding veins in either arm, let the bruising begin. Finally a pre-op nurse came in and said they would do that upstairs. My husband and I had some time to quietly reflect before they came to take me. He had tears in his eyes, we were both afraid of the unknown. In 28 years of marriage, I have only seen him cry on 3 occasions.
At 7:45 a.m., I was prepped for surgery. The nurse placed the IV line into the back of my left hand with very little difficulty. It wasn’t long before the Anesthesiologist worked his magic and I was off to la-la land! The remaining notes from this day are from my husband.
At 9:00, Tom received the first update from the surgeon, that the procedure had begun and was expected to last 3 hours. At 9:45 a.m., he heard from her that the MVD had begun. At 12:20 p.m., Dr. Rosseau met with Tom and our two sons and reported that the operation went well and I was doing just fine. She explained that she had found an artery that had wedged itself between facial nerve VII and auditory nerve VII. She initially put in 5 pads, but removed them and when the monitoring of my facial nerve showed no response. This could have led to facial droop. I had told her I wanted my face to look normal again. She put in 2 larger pads and one smaller pad. She told me later that while in the recovery room, I told her that I was not having spasms. I don't remember that, but do vaguely remember hearing her voice. I was very glad to know I was out of surgery! The recovery room was pretty much a fog!
I was in an ICU room by 2:00 p.m. I was really happy to see my family. They all looked exhausted and relieved. The boys were anxious to go...I think they’d had enough! Not to mention seeing their mom with her head all bandaged!
I was out of it most of the afternoon. My husband diligently fed me ice chips and made sure I was comfortable. I was in a private room with a great view of Chicago, but couldn’t turn my head to see it! There was a nice chair in the room that turned into a cot and Tom took catnaps between the ice chip feedings most of the night.
During the night, I was interrupted several times for the usual tests... the nurse would have me follow her finger with my eyes, push my feet against her hands, etc. Every time I did the finger movement test, I got the dry heaves. The world was still in a complete fog!
Tuesday, May 1, 2007 - "The Day After":
5:00 a.m. wake-up call! Time for the finger movement test again and the dry heaves. But, I was rewarded with a sponge bath and that felt really good. My bed sheets got changed while I was still in it! That was a new one!8:00 a.m. ~ breakfast time...light cuisine of tea, yellow Jell-o and I am not sure what else. My stomach was still doing cartwheels and my world was still a fog. I ate very little, but knew I would have to start eating something soon to start regaining my strength. 9:00 a.m. ~ Dr. Rosseau and a few others came in to see me. She asked how I was doing and I said fine. Next words were for my husband to get the bucket and I lost my yellow Jell-o in front of the surgeon and her staff! How embarrassing. Guess I wasn’t so fine after all! They all jumped right in and kept passing me the bucket until I was through. Ugh...this was the part I had dreaded the most.
Finally to the visit, I hadn’t really noticed any spasms. I also mentioned the world seemed to be in such a fog. It was hard to find a comfortable spot to lay my head so sleeping was in the form of catnaps! I felt a lot of pressure on my skull. Dr. Rosseau was pleased with my progress.
The physical therapist stopped by and asked me if I wanted to try to get out of bed. I said not yet, and asked her to come back later. She came back at lunchtime and by then, I was feeling better. The nurse had given me something for the nausea and it was passing. I tried to eat a little something for lunch, but the liquid lunch was not very appealing either, so I ate very little. At least the Jell-o was a different color!
The physical therapist took me for a little walk from the bed to the chair. It felt good to sit up. The occupational therapist stopped by and had me copy a picture. My art skills have never been very strong, but I guess I got a passing grade. The psychologist stopped by for a chat as well. A speech therapist was there, too. I was exhausted after all these nice people had been to see me!
The catheter came out around 3:00 p.m.. From then on, I was forced to get out of bed because I had to use the bathroom every half hour for the next 6 hours! The nurses finally decreased my IV fluids and I only had to go every 2 hours or so. I also noticed my ear seemed to get that full feeling that so many MVD patients speak of.
Around 4:00 p.m., I was moved to a regular room. We were hoping for another single, so Tom could stay again. They put up a cot for him and let him stay anyway. Later that afternoon, I got a wonderful roommate who had just had sciatic nerve surgery. I had a decent night’s sleep that night between trips to the bathroom. I finally asked the nurse if they had done enough follow the finger tests because it still made me nauseous. She said fine.
Wednesday, May 2, 2007 - 2 Days Post-op:
After a light breakfast, the physical therapist arrived and with her help and Tom’s, I went for a walk down the hall. Boy did I feel drunk and I’m sure I looked just as bad. The bandage had come off my head yesterday morning, but even after combing my hair, it was way worse than bed head! The orthopedic patients probably wondered what was walking their halls! The brain patients understood! Being a Physical Education teacher and a person who likes exercise, I could see I was going to be out of my routine for awhile!Food started tasting better and even though I didn’t eat a lot today, I did eat. The IV was also disconnected this afternoon, which was a relief. I didn’t have to drag that cart with me everywhere.
Thursday, May 3, 2007 - 3 Days Post-op:
I had sent my husband home last night. We live a little over an hour away, but in Chicago traffic, the trip can be a major one. This morning, I got to walk down the hall to the shower. I got rid of the hospital gown and put on some pajamas, which made me feel better.I took a total of 5 walks today and food is looking better. I did notice what appeared to be a slight spasm on my cheek. They were infrequent and much less intense than they had been before the surgery. I took that as a positive sign.
Dr. Rosseau called to check on me throughout the day and was pleased with my progress. I mentioned the loopiness and she said it might take as long as 2 weeks to go away. At 5:00 p.m., Dr. Rosseau called and asked if I wanted to go home tonight instead of waiting until morning. I said sure, and by 6:00 p.m., I was discharged and we were on our way. Riding in a car being as loopy as I was and in Chicago rush hour traffic, I was extremely glad to get to the exit for our small town. We stopped at the pharmacy and picked up a couple of prescriptions and headed home. What a great feeling to get home!
Friday, May 4, 2007 - 4 Days Post-Op & my 50th birthday:
I was up every couple of hours last night. It was hard to find a comfortable position for my head on the pillow. My loopiness continues. It is getting easier to get up from the bed or chair. The florist arrived three different times with plants and flowers. She finally asked what was going on with me because I am the one from the school district who calls to order flowers for everyone else!
Follow-up - 1 Week Post-Op:
I had a horrible experience with constipation, which we got resolved. I hadn’t gone for a week. Good thing I hadn’t scheduled that date to have my sutures removed! I was still very loopy and had slight headaches, but just took extra strength Tylenol for them.We started walking the trails along the I & M canal near our house. Didn’t walk the neighborhood because I didn’t want my students to see how unsteady I was. I still have a lot of pressure on my skull.
Thursday, May 10, 2007 - 10 Days Post-OP:
I returned to Chicago to have my sutures removed. Riding in the car and being loopy was still a challenge. Dr. Rosseau says the loopiness and pressure are normal. She shared a copy of the surgical report with me.
3 Weeks Post-Op:
The spasms have returned to the pre-surgery frequency and intensity, however, they are happening at different times than before. At my one month post-op visit with the doctor, this puzzled her, as it also did me. All testing yielded normal results. However, I realize that some patients take up to 18 months to become spasm-free and that is what I am now hoping for. The loopiness finally went away and Tom is letting me drive short distances. He says it is like having our boys in driver’s education again! It is great to be more independent.With each week that passes, I have become stronger. I have returned to my exercise routine at the fitness center although I have lightened the weights I lift. I am back to walking 2-3 miles. I have returned to the golf course without too much interruption to my game. I have a lot more energy and my body tells me when it is time for a nap. I still have pressure on my skull, but it is a lot less.
This has been a really interesting experience. I am grateful for all the love and support I have received from my family, friends, students, school community, and members of the HFSA. My face is also looking a lot more like it was prior to my Botox® and HFS days.
I have the utmost respect and praise for my surgeon, her team, and the hospital staff. They were all terrific and I highly recommend them.
It was great to meet a couple of HFSA members in person that live within an hour of me. We discovered we all had our MVD’s on the same side (right)! Several members have been in contact with me individually and have been a wonderful support.
Hopefully when Jack checks in with me for my one year anniversary, I will be able to report that I am spasm free!