MVD Diary - Pat Berntsen
I have had HFS since 1987, being undiagnosed for 12 years. I had seen several doctors who wrote the spasms off as a nervous personality. They gave me mild sedatives and advice on how to become a less nervous person. Mind you, I was raising four children single handed, so maybe I was a little nervous, but not to that extent.
My spasms continued to get worse and I tried acupuncture and meditation, neither worked. I went to see one more doctor and he sent me to a neurologist who diagnosed HFS. He put me on medication, which did not work and sent me to a neurologist for Botox shots. I was on Botox for 10 years until I found this site and Wilma Bertling.
Sunday, September 22, 2008 – Meeting with Wilma Bertling:
I received a call from Wilma asking to meet with me. She had traveled to Buffalo to have surgery with Dr. Elad Levy. She gave me information and Dr. Levy's e-mail address. I set up an appointment for a consultation with Dr. Levy for October 20 and a surgery date was set for December 9, 2008 was set . I went on vacation and when I got back I found out that my insurance would not cover the surgery. The doctor's staff fought and won that round and I was still able to be scheduled for surgery for December 9, 2008.
Monday, December 8, 2008 – MVD Rescheduled:
I received a call from Dr. Levy's office advising that I would have to reschedule because they did not have an open bed in ICU. Because my son was coming in from Denver, Dr. Levy agreed to perform surgery on a Wednesday, and I was rescheduled for December 10, 2008
Wednesday, December 10, 2008 – "MVD DAY":
My husband and I arrived at the hospital at 6:00 am and were taken to admitting. At 6:30 am we were taken to a room so I could change into the hospital gown and vitals were taken. I had already gotten all my pre-testing done at the hospital ahead of time and had met with a nurse practitionerAt 7:30am I said goodbye to my husband and was wheeled to a room outside the operating room. There I met with the Anesthesiologist. Two IV's were inserted in either arm. Dr. Levy came in and double-checked the side he was operating on. I was then given a sedative and do not remember anything until I awoke in the recovery room, being very cold. I was wrapped from head to foot in warmed blankets.
Some time in the early afternoon I was taken to ICU where my family was waiting. I was no sooner settled in there and they came to take me for a CAT Scan. I think I felt every bump we went over. The pain in my head was excruciating. They gave me Codeine first, then added Lori tab which, when taken every four hours, helped immensely. I was also very nauseous and my equilibrium was way off. They also gave me nausea medication. I had a lot of fluid in my ear and couldn't hear out of it very well. But I knew that my hearing was OK. I was also very happy to report to my husband and family that I thought the "SPASMS WERE GONE".
Thursday, December 11, 2008 – Day 1 Post-Op:
Friday, December 12, 2008 – Day 2 Post-Op:
Saturday, December 13, 2008 – Day 3 Post-Op:
The Doctor came to see me and said I could go home. Another physical therapist came in and said I had to walk before I could leave. So, with help, I made it down the hall. I went home that afternoon.My husband and sonI spoiled me at home for quite a while. My equilibrium continued to bother me. I needed help walking and showering. As the fluid dissipated in my ear though, the problems did also
Friday, December 19, 2008 – Day 9 Post-Op:
I went back to the hospital to have my stitches out. They said everything was fine and I should come back in January 2009 for follow-up with Dr. Levy.
Wednesday, December 24, 2008 – 2 Weeks Post-Op:
Two weeks into recovery I experienced mild palsy on the MVD side. I went to the Doctor who said it was caused by the Botox I had taken for ten years. He said the nerves would heal and they have, and the palsy has disappeared.I met with Laura, the nurse practitioner, one more time and was given a clean bill of health. Although I have experienced some small flutters around my eye and chin area, I believe this operation to be a complete success and anyone that is interested in having the surgery in Buffalo, would be very happy with Dr. Levy. He not only studied with Dr. Jannetta, he also wrote several papers with him. He is also one of the kindest, most considerate doctors I have gone to.
Update as of 11/03/09:
I can happily say that I continue to be spasm free. What a wonderful treat it is to be able to smile again. I have gotten so that I actually like it. I can not thank Jack, Wilma and this group for all of the information and support they have given me.