MVD Diary - Marty Rivers
Tuesday, November 6, 2001
I am looking through the college catalog for Winter 2002 semester. I cannot find any classes that I need to suit my schedule. I am 51 years old, work afternoons, and I am looking forward to finally completing a degree in History after dropping back into college four years ago. I am taking 10 credit hours this semester. The reading has become increasingly difficult because the entire right side of my face goes into spasms often. Many times I am reading with one eye closed. Sleep has become more difficult as I wake up numerous times in the night not breathing. When I spasm, which happens often at night, it cuts off my air as well as hearing in my right ear. Of course my sight is impaired during the spasm too, often when I am driving. I do not like to drive at night. It is on this day that I decide it is time. I call Henry Ford Hospital and make an appointment to discuss MVD surgery.
Monday, November 26, 2001
Today is the day that I have my appointment with Dr. Ghaus Malik to discuss my MVD surgery. I am no stranger to this hospital or this department. I last spoke with Dr. Malik in November 1999. I was a candidate for surgery then, as my Botox treatments had quit working completely by then and I had had my last ones six months prior. I elected not to have the surgery back then, Christmas was coming and I told him I would reconsider it after the holidays. I do not have many questions on this day since I had discussed this same surgery two years prior, and I have read nearly every post at the MGH/Harvard Trigeminal Neuralgia/Hemifacial Spasm Unit website. This wonderful website has posts from people with facial spasms and TN, with archives dating back to 1995. My wife and I ask the usual questions though, such as the dangers of the surgery, recovery time and what to expect post-op. Then we set the date for surgery. He wants to do it around December 15. Again I tell him after the holidays, but this time we set the date for January 17. I note that it is the day before our 27th wedding anniversary.
Wednesday, December 26, 2001
At 5:00am this morning we pack our van and our two Labrador Retrievers and one Dachshund and hit the road. We are taking our first real vacation in four years. We have rented a small beach house in Panama City, Florida. We planned this since August and I really want to go, especially knowing that surgery is looming just around the calendar. We will be back on January 2nd since I have to return to work.
Monday, January 6, 2002
Today I told my immediate family about my decision to have the surgery. This consists of my mother and two sisters. I waited until after the holidays because they are all worriers and I didn’t want to spoil Christmas with this news. My sisters are both very religious and one of them starts a prayer group for me while the other lights a candle in church. I am not a very religious person but at my age and facing this surgery I need everyone pulling for me.
Tuesday, January 8, 2002
I see Dr. Malik today for a pre-op check and visit with the anesthesiologist. I get my folder of things to do and what to expect post-op.
Wednesday, January 9, 2002
Today as I am cruising the Internet, looking for more information on Dr. Malik and my MVD procedure, I find the Hemifacial Spasm Association and join. It is great to find and read about other people with HFS and how they are dealing with it. I relate immediately to many of the posts and I am learning some things that I do not know and more questions that I should ask my doctor. We are going to do a lot of shopping this week, extra food, paper goods, dog food, medicines and anything else that we might need to carry us through the surgery date plus recovery.
Monday, January 14, 2002
The doctor’s nurse calls today and tells me that my surgery must be postponed. She gives me alternate dates of January 24 or January 31. I select the 24th. I am hoping that the weather stays clear. It is a 24-mile trip from our house to the hospital in downtown Detroit.
Wednesday, January 23, 2002
Time has sure gone by quickly. I haven’t really thought much about the surgery. Today I begin my sick leave from work. I stop at work and fill out all the paperwork and call the insurance company. I hand deliver all the paperwork from my employer to the hospital. I especially want everything in order in case something goes wrong. This whole process takes me about five hours. Tonight at 11:30pm I get a call from my elderly next-door neighbor. Her husband is very sick and we take him to the hospital. He is admitted with pneumonia. I am thinking how ironic it is that I am spending the night before my surgery in another hospital emergency room. I finally get to bed about 1:00am and sleep surprisingly well.
Thursday, January 24, 2002
I arrive at the hospital at 9:30am and report to the surgical ward. My family is already there and seems much more nervous than me. By 10:00am I am in my surgical gown being prepared. They have to suture an IV in my wrist as well as one in my neck. The wrist one hurts a bit and there is a lot of blood. Finally I say goodbye to the family and am whisked off to surgery. I am told later that it took 6-½ hours and went well. I remember very little post-op except for vomiting, lots of pain during the night, no liquids and ice chips that I had to really beg for. The order was no liquids but HA my tongue said different. Lots of pain medication and life was a blur for a while.
Friday, January 25, 2002
I got transferred from ICU to a room late today. They had to take the sutures from my neck first and they left the IV in my arm but did not hook anything to it. My pain medications are now Tylenol 3. I remembering asking the nurse what time and what day it was. Things were still a bit of a blur until about noon. As soon as I got to my room that night I was able to pull myself into a chair. I slept in the chair most of the night, finding it more comfortable than laying in the bed on the wound. I hope to talk to the doctors in the morning since they said I could possibly go home on Sunday. Despite all the pain and other discomforts I could feel, for the first time in fourteen years, NO SPASMS at all in my face. My hearing is good too. I am so thankful that I have come this far.
Saturday, January 26, 2002
The nurse has offered me a choice between eggs & hash browns and cold cereal. Food is the last thing on my mind. I am surprised that I can have anything I want to eat. I eat Rice Crispies & milk, some apple juice and a muffin and leave the banana on my plate. Around 11:00am two of my doctors come to visit. All is going great. I ask if I could leave the hospital today and they tell me it is up to Dr. Malik, but he does not like to discharge patients too early. I ask them to please try. My wife, mother, sister and brother-in-law arrive for a visit. While they are there I eat a light lunch and get word that I can be discharged. Hurray! My brother-in-law rounds up a wheel chair and within ½ hr. I am at the front of the hospital getting into the van. My wife is driving back to our house and my mother will stay for a few days to help out. I have no bandage on the wound, just stitches, and am taking Tylenol 3 and Valium for any pain.
Sunday, January 27, 2002 through Thursday, January 31, 2002
Spending my days relaxing, eating normally. I go from the recliner to the bed to the chair, sleeping when I want to or just sitting around. My eyes ache and I am unable to watch TV or do any reading. This morning (01/31/02) I have gotten tremendous pressure in my head and am using an icepack. It helps but this is a weird type of pressure headache that won’t go away. On Thursday we get our first really big snow of the year, along with rain. It is a really heavy snow of about five inches. I am so lucky though because late in the afternoon I hear one of my Labs barking at the gate. There is a group of kids looking for work shoveling snow. I pay them and about ten minutes later all the snow is off the walks, drive and deck. I have my hockey cap on and walk around the drive a bit. It feels so good to be outside.
Friday, February 1, 2002
I call the doctor and he switches my medication to Darvocet and Valium. By the end to the day the headaches are under control. I venture out of the house today and my wife drives me to a Petco store. I still am tiring easily.
Saturday, February 2, 2002
It is nine days post surgery. This afternoon as I bent over I felt something funny happen to my face. Almost like someone turned on a switch. I can no longer raise my right eyebrow or move the right side of my face, although I still have feeling there. It is the start; I am told, of Bells Palsy.
Monday, February 4, 2002
Today I go to the doctor to get my stitches removed. He seems confident that the Bells Palsy will eventually clear up. I am being put on a ten-day regimen of Prednisone (a steroid), which sometimes will help clear up inflammation around the nerve. I start out with 60MG on the first day and by the end of the ten-day period I am down to 10MG. I am now officially cleared to drive. Still no spasms and now I can read and watch TV in comfort and more important to me my sleep has not been disrupted by the facial spasms.
Tuesday, February 5, 2002 through Wednesday February 13, 2002
I continue the Prednisone treatment and am feeling stronger and sleeping less each day. I am almost totally off any pain medication except for an occasional Darvocet. I am getting out of the house when I feel better and have no problem driving.
Thursday, February 14, 2002 through Tuesday, February 19 2002
I woke up on Thursday with a headache on the front part of my head. It has gotten worse Friday and Saturday. My face feels sore on the right side, by my jaw and eye. On Monday I left a message with Dr. Malik's office. Headaches come and go, mainly when I wake up and are very debilitating. I am taking pain medications again. Waiting for a call back from the nurse. I don’t know if this is something new or a normal part of the healing process. There has been no change yet in the Bells Palsy, but thankfully I am still spasm free. The nurse calls back late Tuesday afternoon and asks many questions. She suspects that since the headaches are in the front that it could be a possible sinus infection. She is going to have a doctor call me in the morning.
Wednesday, February 20, 2002
I am awake now at 1:00 A.M. writing this. Thankfully, there is no headache at all, just much stiffness and soreness on the right side of my face. I look in the mirror. There are still no signs of spasm. I hope that all of this is a sign of healing!