MVD Diary - Steve Wolters
HISTORY:
I started having an eye twitch in 1978. For 16 years I've seen various doctors and all of them said it was related to stress. I had counseling to help with stress, but it did nothing for the spasms. By this time my right eye would go shut and be difficult to open, this would last for 10-15 seconds. In 1994 I was remodeling, I was a plumber, at Black Hills Regional Eye Institute and Kent, the maintenance man there, said “you know they can fix that for you here”. That was the first I heard of Botox®.
June 1994:
December 2005:
Find a pamphlet from the Benign Essential Blepharospasm Association (BEBRF). It described the difference between Blepharospasms and Hemifacial Spasm. I had an appointment for Botox® on 12/19/05 and I asked the doctor if I had Hemifacial Spasm and he said yes. That was my last Botox® shot and I started looking into MVD surgery.
April 2006:
Consultation with Dr. Asfora in Sioux Falls, SD (USA). Find out he only does one MVD per year for HFS with a 70% success rate. Decide to look for another surgeon and appeal to go “out of network” with the insurance company.
May 2006:
Consultation with Dr. Seljeskog in Rapid City, SD (USA), he refers me to Dr. Stephen J. Haines at the University of Minnesota. Dr. Seljeskog also takes care of the appeal to the insurance company.
June 21, 2006:
MVD Consultation with Dr. Stephen J. Haines. He says I’m a candidate for surgery and surgery is scheduled for August 21, 2006.
August 8 and 15, 2006 - Pre-surgery Testing:
Have history, physical and lab work done by my Primary Care Physician in Rapid City, MN (USA), everything looks good for surgery.
August 19, 2006 - Day of Departure:
Fly to Minneapolis, MN and stay with my brother, Tom, in Red Wing, MN (USA).
August 21, 2006: "MVD-Day":
Get up at 3:30 AM (I actually had a good nights sleep) to get ready and drive the hour to Minneapolis, MN (USA). Arrive at hospital at 5:30 AM. I am the first surgery of the day. I am visited by Jenny, who explains that she'll be monitoring the facial and hearing nerves during the MVD. Then Kathy the CRNA comes in and explains her role and puts in the central line. I'm then visited by the 2 interns that will be assisting in surgery, check my eye movement by following their fingers with my eyes and other body movements, shoulders, toes, hands, etc. Dr. Haines is the last to visit, he asks if I have any questions and I don’t. He gives me one last chance to back out. I want to get on with it. CRNA Kathy comes at 7:25 AM and takes me to surgery. I was only awake a short time in the Operating Room and remember there was a lot of people and equipment in there.At 1:30 PM I wake up in PACU and the nurse is saying “you’re feeling much better and you’re going to your room". I had been there 1 ½ hours and that was the first thing I remember.
Get to room, it’s called step-down meaning between ICU and a regular room, where I'm closely monitored. I am suffering from nausea and have a real anxious feeling. Take some deep breaths and it helps. My brother and sister-in-law are there and tell me Dr. Haines told them everything went well. I have an incision in my belly where they took some fat to put in the hole in my skull under the titanium mesh. I am "SPASM FREE". I am in and out of sleep and getting nauseated. I have 3 very sore spots on my head and figure out it is from a halo used to hold my head still in surgery. I have compression devices on my legs to prevent blood clots until I can get up and move around. My blood pressure is high 160/95. At supper I can not even look at food as it makes me sick. All through the night I am checked every hour. Nurse asks me my name, where I am, and the date so I don’t get any real sleep.
August 22, 2006: The Day After:
Still nauseated. Nurse come to remove catheter and says I will move to a regular room. Catheter has a kink in it so they can not let the air out of the balloon that holds it in. So 2 nurses and myself are looking at this thing and they finally figure it out and remove it. Somewhat of an embarrassing and humbling experience, but at this point I just want the thing out. I have to move to the room next door and decide to walk. It was like learning to walk again, very dizzy and weak. I had a very firm hold on the nurse. Try to eat some Jell-O and apple juice, still can’t keep it down, can only handle ice chips. Short time after the catheter is out, the nurse says I have to urinate and it burns when I do. Nurse does a bladder scan and tells me I need to urinate more or she’ll put the catheter back in. Soon I have that mastered and the burning sensation quits. Occupational and Physical Therapy come and get me up to walk or stagger, but I am able to go down the hallway and even do some stairs. I walk 3 or 4 more times that day with my brother when he comes. Dr. Haines, Dr. Kelly and Christina (Dr. Haines PA) come to visit about 5:30 PM and say I am doing fine. Dr. Haines says the Jell-O color matches the terror threat level. I eat a very small amount of Jell-O that day. By the end of the day I can get up and move around on my own.
August 23, 2006: Day 2 Post-op:
Still nauseated. Blood pressure still high 150/90 but a little better. I’m told I will be going home (to my brother’s) but need one more IV that will take about 4 hours to go in. I get instructions that I can be on a regular diet, activity as tolerated, shower tomorrow. So I have a bath in a bag, not quite like a real shower. We stop at the pharmacy and get Percocet for pain, stool softener and constipation medicine. I am able to walk out of the hospital. It is great to get outside and smell some fresh air. On the ride home (1 hour to my brother’s) I am on the verge of getting sick but do not. I am able to eat some chicken noodle soup and applesauce and drink some fruit juice, it tastes very good. Get some headaches but the Percocet keeps them under control. I get to sleep in a real bed it feels good but it is hard to get comfortable because my head and neck hurt.
August 24, 2006: Day 3 Post-op:
Feeling much better and I got to take a shower, boy did that feel good. I am able to eat more and do not get sick. I take a walk about 1/2 mile. I may have over done it and come back and take a long nap.
August 25 to 29, 2006: Days 4-8 post-op:
Continue to feel much better every day, eat, exercise and stay awake more. I am weaning myself off the Percocet.
August 30, 2006 - Day 9 post-op:
Make the trip back to the clinic to have my stitches removed. I am able to ride in the car without feeling sick. Dr. Haines is pleased with my progress and tells me that Ibuprofen should take care of my headaches, and it has. Dr. Haines says I do not have to come back for my 1 month check-up if I don’t have problems. That’s good because I live 600 miles away. That afternoon I flew home to Rapid City, MN (USA). I had a friend pick me up at the airport and carry my bags.
August 31 to September 15, 2006:
I have been recovering at home, walking about 4-8 miles a day. My ear has a slight “full” feeling, the incision site is pretty well healed, and the incision on my stomach is a little bothersome. My sense of smell is more sensitive and my M&M cookies don’t taste right. I think I am doing very well, 4 weeks out of surgery. I’ve gotten some little chores done around home, painting, light cleaning, etc. I am going back to work on September 18, 2006.
September 16 to December 4, 2006:
I have continued spasm free, the headaches I had right after surgery are gone and my taste is back to normal. I have some slight numbness at the top of my right ear, but other than that, I feel great. After 28 years I am "SPASM FREE" and it's GREAT. Thank you to every one in the HFSA. Your support is so wonderful.