MVD Diary - Bev Terry
July 05, 2004
: My MVD is in two days on the 7th. I am nervous. On my first MVD I did not have the time to think about the surgery as it was scheduled so quickly. This time I not only had ample amount of notice of my schedule date, I had the time to explore the Internet and found the Hemifacial Spasm Association (HFSA).I spent a lot of time researching, reading memberąs diaries, experiences with MVD, Botox and medications. I almost became consumed going on the Internet every evening. I e-mailed notes to some members and they graciously e-mailed back. Today I received an e-mail from Luly Andrade of San Diego telling me she lived near me and would like to meet me. I e-mailed back saying I would love to meet her after I'm on the road to recovery. It will be great to talk to someone in person about HFS. I never would have found her if I hadn't found the HFSA.
July 06, 2004:
I had my nails done this morning, went to the bank and store as part of my last minute organization. My husband, Lee, and I met with the doctors at 1:30 PM. They answered all my questions and were pleased that I came in with a lot of prior knowledge on the subject of HFS. I feel confident that the surgery will go well tomorrow. I check in at 9:50 AM, an odd time. My surgery time is approximately 3:00 PM. It could take 1 to 3 hours depending on what they find in there. I will be in the hospital 1 to 2 days. Certainly shorter than the 6 days I was in the last time.Today I am feeling really good about my decision to have the second MVD, and I am not nervous. After the Doctor appointment I bought some magazines and books to keep me occupied while I am recuperating in the hospital and at home.
July 07, 2004 - MVD Day:
I feel I canąt get to the hospital fast enough. My check in time is 9:50 AM. My husband and I arrived at the check in desk about 9:30 AM. To my surprise they called me at 9:40 AM. I filled out the necessary paper work and we were escorted to the surgery prep area. They gave me the usual directions to get undressed and what my husband was to do with my belongings and where he would be waiting for me and meeting with the surgeons half way through my surgery for an update.I met with the anesthesiologist, he was comforting and explained his whole process. He asked if I was nervous and would like something to relax. At first I said no, then said, "Why not?" The nurses gave me a relaxing medication through my IV. I sat and talked to my husband and read a magazine. About 2:00 PM the nurse gave me another injection of a relaxant. At 2:30 PM the nurse and orderly came to take me to the operating room. I donąt remember anything after I kissed my husband good bye and he wished me good luck until I woke up about 7:00 PM. I remember him saying the doctors said that the operation was successful and was confirmed with the monitoring.
July 08, 2004:
At 2:00 AM I was in despair as I felt flutters just under my eye. By the time my husband came back that morning, I was in full spasm and also had double vision. The Doctor came in this morning and saw that my spasms were still there. He was almost speechless. He told me for the short term to wait and see, the interior swelling will go down, and my face muscle should relax. For the long term, I may have to have a third MVD. If that were the case, the surgery would be more intense and I would defiantly lose my hearing on the HFS side (right). I am depressed and nauseous. I remained nauseous for the rest of the day. I did not eat. I slept a lot.July 09, 2004:
Spasms are still there and constant as well as the double vision. What could I say or do but to continue to be nauseous, sleepy and depressed. My husband said my spasms are more prevalent then he has ever noticed. He had been sitting on my HFS side all this time and I was not able to hide the spasms by moving my head down, covering my HFS side with my hand, and turning my head. The only thing I ate today was sherbet and Jell-O. I took a shower today and washed my hair which made me feel better. It took a long time as I was moving in slow motion. The nurses made me do some walking. They suggested it may help alleviate some of the nausea. It did a little bit.July 10, 2004:
Saturday and I got to go home. Spasms and double vision still present. A different Doctor came in today as mine was at a conference. I knew this in advance. He also told me to be patient. I actually took a couple of bites of a bagel and drank some tea. I was home by noon. It felt good to be in my own bed. My head felt fine, no soreness in the incision area. It did not bother me when I slept on the incision nor did the staples bother me. My husband made sure I was offered food to eat and drinks. I ate lots of Jell-O, crackers and ice cream and drank water and Seven-Up. I tried some soup for dinner. Probably ate about a cup with crackers. I slept well that night. I have not been taking any medication other than extra strength Tylenol (2 before I went to sleep for the night).July 11, 2004:
Sunday and Iąm feeling pretty good. Spasms and double vision still present but not as intense. I had some toast for breakfast. I continued to eat the Jell-O, crackers, ice cream and soup when I was hungry. I pretty much slept and roamed around the house when I was awake.July 12, 2004:
About 12:45 PM my husband asked if I would be all right while he went on a couple of errands. I assured him I would be. He was gone for 15 minutes when I had to use the bathroom. I thought great, at least I wonąt be constipated. To my surprise I thought I was going to die. I have never had such pain or eliminated so much in my life. I could barely move with cold sweats and hanging on to a towel rack to keep me from falling over with pain. This situation lasted with intensity for one horrific hour. My husband came home and witnessed what I was going through. Needless to say I ended up I the emergency room with gastroenteritis (dysentery) and dehydration. That little jaunt to the emergency room was an unpleasant eight hours before I went home. The medications cured the problem.July 13 - 15, 2004:
Spasms and double vision getting less frequent.July 16 - 19, 2004:
Low and behold, "NO SPASMS", no double vision. I am almost in denial that the spasms are not present. I keep waiting for them to reappear.July 20, 2004:
: Post op. doctor visitation. I reported to the doctor that I am "SPASM FREE". He was very pleased. He took the staples out. That did not hurt at all. After all, the surface nerves in the area are temporarily insensitive. My balance is still a little off and I am positive I lost more hearing. I will have a post auditory test in about three weeks. If not hearing fully is a problem it can be corrected with a hearing aid. At this point I probably would not investigate getting a hearing aid if I were not a teacher (special ed.) and have someone talking at me continuously. Some of those vocalizations are not clear or are very soft spoken. I teach students with moderate to severe special needs.August 09, 2004:
I must say I am feeling great, driving, eating, sleeping, smiling, socializing and my energy level is returning to normal.August 16, 2004:
I had my post op hearing test. Yes, I have lost a lot of hearing above and beyond what I lost during the first MVD. Both tonal and clarity have decreased. That creates a different set of problems. I need the loudness for the clarity which the hearing device may not be able to address. I will go back to my classroom and see (hear) how the environment works for me. I will then make a decision as to whether to experiment with the aid for my right ear.I am still spasm free. Hearing loss or not I would do it again knowing the 8th cranial nerve would be severed.
I want to thank all those that wished me well, answered questions or just gave me information I needed through their own writings. I was pleased to meet a very gracious lady, Luly Andrade, who lives here in San Diego. We spent a lovely morning together talking about HFS and our experiences. It was mutual that we felt it would have been comforting to know that we were so close we could have supported each other in dealing with HFS.
This is such a valuable site for people suffering with this HFS condition. Mostly, it is comforting to know that I am not alone. I have had this condition on and off for 31 years. My first MVD was somewhat successful. With the new advances the second MVD was successful thus far. I would recommend the surgery to anyone with this condition. It never gets better, only gets worse over time. Please feel free to contact me with any questions.