MVD Diary - Tracey Stangel
October 21, 2004 - Day before surgery:
Had my first meeting with Dr. Kaufmann the day before my surgery. My left side was only slightly in spasm at the time. When he looked at my MRI he was quite surprised to see that there was a vein pushing on my nerve on the right side. There were no visible signs of a compressed nerve on the left side though. He said this was very rare to have it on both sides. When I scrunched up my face my left side would spasm then my right side would also. He told me he wouldn't be surprised if my right side didn't progressively get worse and I would need an MVD on that side as well. He also said he was sure it was HFS (which I was still a little unsure of up until this point because I had seen two different neurologists that had said it was just a reaction from my flu shot and it was not a compressed nerve) He also confirmed that I would be a good candidate for surgery. I then met with the anesthetic department and they went through what to expect before surgery.
October 22, 2004 - "MVD-Day":
I was actually very calm about the surgery. My family was so surprised that I wasn't nervous at all. I think the thing that had actually been worrying me the most was that I would get there and he would tell me that I wasn't a good candidate for surgery. I went at 9:30 AM to pre-op where they had me put on the tight stockings, (which apparently helps with the blood flow) and then they hooked me up to the IV. Around 11:30 AM they moved me upstairs to where I would wait until they were ready for me. I ended up waiting for about an hour and a half because of a delay with the surgery before me.They finally came and got me at about 1:00 PM. When I got to the operating room they started hooking me up to some of the monitoring machines and the next thing I remember was waking up and the Doctor telling me it was over and everything went well.
The nurses kept asking me if I was in pain and I really didn't think I was that bad (I have had hangovers as bad as that). After about an hour I finally said I had a headache so they gave me some Tylenol 3. About a half-hour later the headache was still there and she said that she was going to give me some Demerol because my face was swelling a bit. About an hour later they moved me to a different ward where I spent the night. I had a headache on and off through out the night but it wasn't nearly as bad as I thought it would be. In fact I think the IV was the most painful part of it for me. It was a long night, as I couldn't sleep at all. Every time I would dose off I had that falling sensation and would jump awake. I am sure I probably only had about two hours sleep the whole night.
October 23, 2004 - Day after surgery:
I was very restless by 6:30 am I wanted to get up and walk around. The resident came in and checked on me. My eye had been tearing constantly since I had come out of surgery. The tears would run down my oxygen tube and into my incision and it was driving me crazy. The resident said he wasn't sure why it was tearing so badly but he wasn't overly concerned about it.Finally they came around 9:00 AM and capped the IV and let me get up and walk around. I got up and felt great. I walked to the bathroom and went and answered a phone call. They told me Dr. Kaufmann would be in to see me that day and might okay me to be released from the hospital. He came around 11:00 AM and said that I could go if I wanted or I could stay in the hospital one more night. I was ready to go! He also informed me that the blood vessel that was pushing on the nerve was also entwined around a bone and he could not manipulate it enough because it was interfering with my hearing too much. He did however get it off of the nerve. He said if it still acts up he might be able to correct it on a second MVD, but it might still work.
Around 12:00 PM I got my last dose of antibiotics from the IV and was so happy when they took it out for good. I was then released to go.
When I got to my room at the hospice I slept for about an hour and then my mom and I went in search of a pharmacy to get my prescription filled. When I woke up my eye had finally quit tearing. I was feeling really good at this point so I felt I was up for the walk. It turned out that the nearest pharmacy was about three blocks away and I really wanted the fresh air so I went with her. We ended up going in the wrong direction and it was probably 9 blocks in total. I was a little tired by the time we got back to the room but was so amazed that I was feeling that great and no pain. I slept really well that night.
October 24, 2004:
My sister came and picked us up around 1:00 PM. I was going stir crazy by this point and I said I wanted to go to the mall for a bit, so off we went. I shopped for about an hour and a half and was getting tired so we left to check into our new hotel. We were all so shocked that I was feeling so good. I finally fell asleep about 10:00 PM that night. I didn't sleep that well, as I still felt too wired to sleep. I actually felt like I had more energy now then I did before the surgery. I still have had no spasms although the Dr warned me that it is very likely that I will have them again at least temporarily.
October 25, 2004:
I got up around 8:00 AM. I thought the morning would never come. I kept waking up every couple of hours thinking it was time to get up. Still too restless to sleep. At 9:00 AM I took the shuttle to the hospital and met with Dr. Kaufmann to get the official okay to travel. He said everything looked good and I was free to go. It was an 8-hour drive home and we stopped every couple of hours and stretched but once again I was surprised at how good I felt. I thought for sure that the vibrations in the car would drive me nuts but they never bothered me at all. I finally got home about 8:00 PM. I stayed up until 10:30 that night and finally felt tired enough to go to bed. I still kept waking up wired throughout the night. I am not sure why I am not tired. I am still waiting for the bomb to drop.
October 26, 2004
Again I got up around 8:00 AM as I couldn't stand laying in bed any longer. I stopped by work for a bit and went for coffee with some co-workers and then did a bit of grocery shopping. I was tired by 11:00 AM. Tried to sleep but once again I was too alert to sleep. I am starting to wonder if I am suffering from insomnia. I am absolutely amazed still that I have no pain except where the IV was. My wrist is still very sore. I have a bit of a headache but nothing compared to what my spasms used to give me. I have had a few twinges in my check today but no actual spasms. I am keeping my fingers crossed.
October 27, 2004
I had my first spasms today. They are very mild so I am trying to stay positive about it.
November 02, 2004
Went back to work today after only a week. I couldn't stand being at home any longer. By 2:00pm I was beat and went home. Finally I was tired enough to sleep. I still have had a few spasms on and off throughout the day. I decided that it was probably best if I only worked half days for my first week of work.
November 04, 2004
Today was my third day back at work. It is going okay but I am beat by noon and have to go home and nap for a couple of hours. At least this week I can actually fall asleep. I am sleeping better at night, but headaches seem to be acting up. I ended up taking a Tylenol 3 for the first time in a week.
November 08, 2004
Spasms are back full force on both sides. I am really discouraged now. In fact I think the spasms are worse then they were before the surgery and now my right side seems to be acting up more. I made it through my first full day of work today and am feeling okay. I wasn't nearly as tired as I was last week. However my eyes were spasming so bad I could hardly keep them open. My left eye would seal completely shut for about 5 min at a time, meanwhile my right eye was watering so bad I could hardly keep it open. The flourescent lights make it so much worse. I am hoping it will get better with time. Now I just have to wait and see what happens.I would just like to say that Dr. Kaufmann was an amazing doctor. He and his staff treated me so well and I can not thank them enough. I just wish that everyone who has an MVD could feel as great as I did after mine. Although I am not spasm free currently I am still holding out hope that my spasms will fade away. If I had to do it all over again I would still go through with it. I felt much better than I had anticipated and I figure any chance at getting rid of this is worth a try. I am currently looking into whether or not they can perform an MVD on my other side soon or if I have to wait a year before they will consider it. I hope my diary will help put others that are considering an MVD at ease. Not that everyone feels as good as I did after my surgery but so that people know it can be this simple.