MVD Diary - Marianne Kruidenier
In January of 2005, I went to a local neurologist who diagnosed me with HFS right away. His recommendation was anti-seizure medication. I told him that I wanted an MVD, but he thought that was too risky a procedure.
Back at home, I went through the database on the HFSA website of surgeons in California who our members had used. I cross-searched that list with PPO surgeons on my insurance’s website and came up with three candidates for the surgery. I emailed members from the group who had had surgery with these doctors. In the end, I decided on Dr. John Alksne of La Jolla for my MVD. I contacted his office, got a list of testing that needed to be done and set out on my journey.
When I had all my testing back, including a brain MRI, I made an appointment for a consultation with Dr. Alksne. My husband, Jim, and I drove down to La Jolla from Santa Barbara, leaving at 5:00 A.M. and returning at 9:00 P.M. We left our two children, ages 9 and 12, with friends.
We were very impressed with Dr. Alksne. He is a very kind and gentle man, and he is very confident in his work and his abilities. He was sure he could cure me and that everything would go well. He could see the loop in the blood vessel on my MRI, and that convinced him that my problem was fixable. Jim and I left the consultation feeling that we had the best possible surgeon for the job. We stopped in the hospital and registered for the surgery and I had bloodwork done.
Thursday, June 09, 2005 – Day before MVD:
Jim and I leave my parents (in their 80’s, bless their hearts) in charge of the kids and household so we can go down to UCSD for my MVD. My friends are also helping out with the kids. I marvel at the wonderful support I am receiving from everyone and feel so very grateful.
Friday, June 10, 2005 – "MVD-Day":
My surgery is scheduled for noon, with at 10:00 A.M. check-in time. I try to sleep in, but can’t. We end up getting to the hospital at about 8:30 A.M. Out of deference for me, Jim has not eaten since last night either. By 11:30 A.M., I am completely prepped for the surgery and Jim and I are just waiting. I have met with various nurses, the anesthesiologist, Dr. Alksne’s surgical assistant, and Dr. Alksne himself. Dr. Alksne is all smiles and enthusiasm. Jim and I are feeling good, though a bit anxious. I am hoping to spend as little time in the hospital as possible and get on home. My surgery was slightly delayed because the room was not vacated on time. I was moved to a different surgery room, and the surgery lasted for about 3 ½ hours. Dr. Alksne says that he had padded the vein in the MRI and was thinking he was finished. He had his consultant run the test on my face to make sure that there was no more feedback and found that there was still interference somewhere. He then found a tiny blood vessel that was the problem. In all, he padded three areas. I was released from the recovery room at 5:00 P.M. and put in my hospital room. For the next 24 hours, I was given morphine every two hours, as well as Dexamethasone, a steroid for inflammation, and medication for nausea. I was able to sleep for 1-3 hours at a time. I was not in any real pain, but was uncomfortable enough sometimes that I could not sleep. It felt like a headache with a hangover. The real news is that I was cured! I had one or two very slight flutters around my eye, but that is all! It was a miracle! During the surgery, I was strapped to the table and the table was tilted to present my right side. My head was fixed in a frame so that it could not move. In this position, my neck took great offense. With the air tube down my throat while I was turned so, my throat became very sore and swollen, to the point where I had trouble talking and swallowing even water for the first couple of days. My throat being so swollen was a side effect that I had not anticipated. Jim had to translate my vocalizations to the nurses who could not make out what I was saying. I could not hear at all from my right year for three days, but the fluid slowly reabsorbed, and my hearing is fine now.Saturday, June 11, 2005 – 1 Day Post-Op:
With the first 24 hours behind me, I set my sights on going home and did everything I could to look dischargeable. I tried to eat a Popsicle, but threw it up a few minutes later. The on-call doctor came to check on me and told me that he wanted me to get out of bed when I was ready, so I got out of bed a couple of hours later, when I was feeling up to it. I had pretty bad nausea for most of the day and just sipped water. I still could barely articulate words, and the water I sipped tended to want to go up my nose than down my throat. I was on an IV, so there was no danger of being dehydrated, and I was not hungry at all. I sat up in a chair that day, and took two walks with Jim, just down the hall. Dr. Alksne came to check on me. He took the big head bandage off of me, my turban, and said that I was doing well, and not to over do it. (He knew I was eager to get on home.) That night, I slept about two hours at a time. I got up to walk by myself two times. My balance was very good, and I was going to the bathroom by myself. After the first 24 hours, I declined the morphine and took Tylenol instead. I asked for Extra Strength Tylenol, but the nurse said that had not been approved for me, so I took the regular. Ironically, I had Extra Strength Tylenol in my bag, and I did end up taking some on my own a couple of times. I was offered Vikadin, but it had made me nauseous in the past, so I declined it. I did fine on the Tylenol, and by the third morning, they had called Dr. Alksne, and he had okayed the Extra Strength Tylenol.Sunday, June 12, 2005 – 2 Day Post-Op:
I tried to eat scrambled eggs for breakfast, but could not. I nibbled on crackers most of the day, and sipped water and milk. My stomach was still very upset, with a lot of gas. I watched some TV, and Jim read to me throughout the day. We took longer and longer walks around the hospital. Jim helped me take a shower, but I was not allowed to get my hair wet. Even so, it was wonderful. My voice was still a distorted whisper, but I was feeling better and better.Monday, June 13, 2005 – 3 Day Post-Op:
Dr. Alksne’s assistant came to check on me and told me that I could go home today. He took the last bit of gauze off of my incision and told me about the steroid pills I’ll need to take and how to take them. I’ll slowly be weaned off of them, so it’s important to take them according to the schedule. Dr. Alksne came in and said that I looked great, and wouldn’t I like to take a shower and wash my hair before I drive home? (I admit that I do look like Buckwheat with my hair full of Betadine and glue.) I wash my hair and get discharged. I am spasm-free and heading home!A few days later:
The drive home took about four hours, so we were lucky with the traffic. I had to stop once and walk around because I was feeling carsick. It was so wonderful to get home! The kids were angels, and my parent’s saints. I loved getting into my bed and relaxing fully. I still am not able to sleep the whole night through, although I can sleep longer and longer as the days go by. It’s been 17 days since the surgery and I can sleep about 5 hours at a time on a good night. I was able to drive locally after a week, but I have tried not to drive or do much at all, if I can manage it. My voice is strong enough that I can talk on the phone, but I am left out of breath if I try to use my voice too much. I am still careful about what I eat, so that I don’t choke.By the three month mark:
I am doing everything I had done before the surgery, including riding my horse. When I over do it, I start to lose my voice, so that is my warning system to slow down and take a rest. It took about six weeks for my throat to heal from the intubation. My neck still gets sore if I am too physical, especially from lifting too much. I pace myself and generally have a great day. The best part is, I am SPASM FREE!