MVD Diary - Andy Jamison

Surgery performed by:   Dr Kim Burchiel
Surgical Location:         Oregon Health & Science University, Portland, OR (USA) Surgery Date:                              March 23, 2005

Diary prepared by:         Andy Jamison
Date diary finalized:       May 02, 2005

 

Tuesday, March 22, 2005 - Day before:

Went to Oregon Health & Science University (OHSU) for a series of tests and meetings. My mother and sister arrived this past Sunday to be here as support through the procedure. We went to the hospital together at 9:00 for a final MRI. Went as expected, claustrophobic as ever but the team did a great job of keeping me comfortable. Next stop was a meeting with Dr. Burchiel. His office was exceptionally busy and after waiting quite awhile I ended up meeting with his nurse practitioner, Jane. She was wonderful on giving an A-Z list of expectations for all stages of the procedure, and a rehash of information obtained from my previous meeting with Dr Burchiel. It was great to hear her repeat so much of the same information that I had already learned about here on the HFSA website. It made me feel so great to be a part of "our group". This website truly prepared me for this surgery in a way that I don’t think would have otherwise been possible. Some of the information was discouraging and hard to hear, but I was also thankful to be told the entire story and "all" possible side effects, etc, no surprises! Next stop was a quick meeting with the anesthesiology dept. They did a blood work-up and asked me a series of questions that I felt like I had already answered at least 6 times in the previous week, but I obliged them.

Had a nice meal with my family, going against the anesthesiologists advice of eating light and early...I ate late and heavy! I knew tomorrow morning was going to be a long fasting period before surgery. Went home for a very reflective evening alone. Though I am greatly blessed with family and amazing friends that have supported me through this, I felt a strange sense of feeling very alone. It was also very difficult filling out the Oregon Advance Directive Law paperwork (my wishes in case of something going wrong),but I knew it was essential. Sleep did not come easy this night.

Wednesday, March 23, 2005 - “MVD Day”:

Arrived at the hospital for the 9:30 check-in ready to tackle anyone I saw carrying a cup of coffee. It is exceptionally cruel of them to have a Starbucks on the same floor as pre-op, knowing that people are fasting! I considered this their first act of sadism of the day. I was called in almost immediately. I have to admit I was very, very nervous, but the entire team at OHSU was wonderful and caring, I really got the feeling they understood how I felt. I let them know that I had huge paranoia of them doing the wrong procedure. The previous day, everyone I met with started their questioning, saying I was there for trigeminal neuralgia (even the Nurse Practitioner). They assured me that it was on the procedure orders for hemifacial spasm. I am sure I seemed like the skittish patient, but I didn't want them messing with the wrong nerve, and I let them know it! The nurse even wrote in big letters on my left shoulder "YES". I got a laugh from that. I said "see you later" to my family and was taken into the O.R. about noon. Never in my life did I want a cup of coffee and a Big Mac more. They were awesome in explaining every detail of what was happening, but it seemed within 5-10 minutes I was out. Four hours later I slowly awoke in recovery. An incredible nurse named Lindsey stayed with me the entire 2 1/2 hours I was in there. I was surprisingly very comfortable but very concerned about my vision. I could not focus on anything, my eyes seemed to be locked in a permanent dance. Dr Burchiel came in to visit and seemed very pleased, even though my face was still twitching. He felt confident that my vision problem was temporary and a result of things being shifted around. My case was apparently one of the more complicated he has had, I had two VEINS clamped onto the nerve so they had to release the two, one vein was cut out and one Teflon insert was implanted between the other and my nerve. He said there was some more action in there than normal and my body was reacting to that. I thought it was interesting that in my case it was veins and not an artery. I was taken for a CAT scan and then to a private ICU room for the night. My family were taken aback a bit by the hole in my forehead! So was I, apparently it was from the device used to hold my head in place for surgery. Munched on ice chips and settled in for a fitful nights sleep, trying to ignore the twitching still in my face....

Thursday, March 24, 2005 - Day 1 Post Op:

Woke up starving which I thought was a good sign. Breakfast came early and I had no problem downing two pancakes, a bowl of Cheerios, juice and finally coffee! I felt very lucky to have eaten, I was consistently waiting for the awful nausea that I had heard so much about, but it wasn't happening. My self-proclaimed "evil nurse" Terry took amazing care of me and she was anything but evil, until.....the time came to remove my bladder catheter. That was the most horrible 3 seconds of my life and immediately brought on the nausea. She shot something into my IV and it seemed to relieve the nausea almost immediately but it also slipped me into a wonderful two hour nap. I awoke feeling pretty good, no nausea and the pain in my head was tolerable. I was taken to a regular room and started to feel human, except for the vision. It was nowhere near as bad as in post-op but I was having fairly severe double vision especially looking up and towards the right. None of the doctors seemed too concerned so I tried to let it go. The twitching was still occurring, but by the end of the day, I consciously noticed an incredible improvement, 75-80% spasm-free! Appetite had diminished but still did not have nausea too bad. Dr Burchiel wanted to keep me at the hospital due to my vision issues. I was able to do a little shaky post-surgery shuffle around the ward and use the restroom alone. I was shocked when I first saw myself though in the restroom, I was not prepared for the amount of swelling. My head truly had ballooned on the left side, pushing my ear perpendicular to my head. I looked like a sad, very pale Mr. Potato Head. My neck and throat were also extremely swelled up, making me look like I had mumps. My throat muscles were extremely painful and I tried to do mini stretch exercises to get some relief. I accepted the hydrocodine, but I really think it was more for my neck muscles than my head. Sleep was also very fitful that night.

Friday, March 25, 2005 - Day 2 Post Op:

Still very swollen, and feeling like I have been hit by a train. I’m also very achy and shaky on my feet and my vision had not gotten any better. Appetite had not really come back. I tried not to get too discouraged. The great thing was that I still spent the day at least 80% spasm-free! I had faith that my body was just taking a little more time to recover from the trauma of surgery. Took a few shuffles around the ward to try and build up some strength, I was just so tired all the time. Dr Burchiel came to visit and again did not seem overly concerned about my vision, so I tried not to be either. But because I still had very strong double vision, they decided to keep me overnight again which was honestly fine with me because of the train collision feeling I was still going through. Pain was not so bad, but again seemed to be the worst in my neck muscles and the incision site was itchy and tender.



Saturday, March 26, 2005 - Day 3 Post-Op:

A little better today, more of a feeling of being hit by a truck rather than a train. The swelling reduced significantly overnight, though was still there to some degree. They said I was free to go home if I wanted. My mother and sister had to fly back to Virginia first thing this morning, so a buddy came to pick me up. He said I should think twice about leaving. I still wasn’t feeling well, and I had finally gotten the "full ear" feeling in my left ear. This seemed to be playing havoc with my equilibrium because I was very unsteady during my morning shuffle around the ward. He did not want me to go home. We talked to a doctor who had me do the follow my finger thing in front of my eyes, and I honestly couldn’t even find his finger part of the time. But he concurred with everyone else that it was just a temporary set back from the trauma of surgery. I told my friend I wanted out, and was released. Felt great to be home and with my pets again. I am lucky to have two very intuitive cats and a Labrador whose sole mission is to make me smile. I was very tired though, and the full ear thing was driving me crazy. The best way to describe it is that it's identical (for me anyway) to what my ears experience when descending in an airplane only this doesn’t clear up, it's constant. A group of buddies came over to welcome me home, but it was a bit too much to take and I had to give them the boot, but it was great to have a really good nights sleep in my own bed. Started a conscious effort to lay off the pain pills due to the constipation. Thrilled to say that despite my persistent double vision, the spasm is up to about 90% gone! Whoo hoo!

Sunday, March 27, 2005 - Day 4 Post-Op:

Well, the nausea finally arrived. I woke up at about 6 after sleeping very soundly. I felt extremely nauseous, the worst since the surgery. I took a couple of sips of water and that triggered an awful bout of vomiting. This is a very unpleasant experience to go through when your body is already so fragile. Thankfully I felt much better when it was all over, but it didn't take long for the nausea to return, but without any action. I spent the majority of Sunday in bed, eating and drinking very lightly. Unfortunately the nausea got the worst of me again that evening and sent me to the bathroom in a super-shuffle, thank goodness for socks and wood floors. That was the last of it though for the night and I was able to relax the remainder of the evening. Overall still feeling very weak, no appetite and the full ear feeling remains, but what does not remain is the spasm! Feeling 90-95% spasm free today! Only minor little quivers around my mouth or eye every now and then.

Monday, March 28, 2005 - Day 5 Post-Op:

Finally had my first real bowel movement. If I can offer anyone that’s considering MVD advice, take your stool softeners, and use Milk of Magnesia immediately. The constipation was one of the worst effects of this whole thing. Feeling a little more energetic today. Did quite a bit of shuffling around the house, careful to hug the walls and stick close to the furniture. Its strange, I seem to get little bouts of dizziness when sitting down, but when standing, I don’t get dizzy, just toddle off kilter here and there. I can’t walk to the bathroom without doing a little jazzbox move along the way. Pain is virtually gone in my head and neck, worst complaint is the full ear thing, which I'm just going to hve to ride out as it seems its here to stay for awhile. Unfortunately, sudden sharp pains deep in my ear have come along with it, but the incision site is healing very nicely. Took an amazing full shower for the first time! My friends got me a little plastic chair to sit on in the shower so I don’t keel over. Felt amazing to wash my hair and gingerly mop up my incision a bit. Today was a good day, still just very tired, nausea is under control due to a prescription called in from the surgeons office (promethazine), appetite is still not great, itchy incision, vision still off, but.....drum roll please.....I WAS 100% SPASM-FREE ALL DAY!.

Tuesday, March 29, 2005 - Day 6 Post-Op:

Basically a duplicate of Monday. Friends ask if I feel better. I think a better thing for me to say is I feel "different". Some things get better, some stay the same, and some new little weird things creep in too. All part of the recovery process. A group of people from my work came to visit, and again, I didn't have the strength to entertain for long, but it was nice to see them and hear about the outside world. Today I remained...100% spasm free! It’s an amazing feeling, after 4 years not to think about them..

Wednesday, March 30, 2005 - Day 7 Post-Op:

I honestly can’t believe its a week already. Ventured from the house today for the first time and had breakfast out with friends. It was great, though tiring. Looking at some other peoples diaries I feel somewhat discouraged because it seems that some people are up and almost back to normal with a few days. Well, a week later, I feel anything but normal, but definitely on my way. I am trying not to be down on myself for not feeling up to par. I remind myself that we all have our own 1) hfs experience 2) MVD 3) recovery period. I guess some of us just need more time. Today, I remain spasm-free and I pray it will stay that way. My vision is much, much better, but not still 100% normal. I am still very weak, and very unsteady on my feet and still queasy. I am quite dizzy after staring at the computer for this long. I am determined to try and eat more as I hate to say that I have probably lost at least 10 pounds this past week, something I did not want to happen. However, with all these little things still lingering, I am going to continue to give myself the time to heal. I have to remind myself hourly that this is "my" recovery and to listen to my body and not push it. Work will still be there when I am 100% better. I am extremely happy with my MVD surgery and highly recommend it to anyone that is considering it. I have faith my vision and ear will get back to normal, and all these things are a miniscule price to pay for being spasm free. Thank you all on this site for your support. We are truly beyond lucky to have this resource. I never would have been able to make my final decision on the surgery without it, and I am 100% satisfied that I did!

Thursday, April 7, 2005 - Day 15 Post-Op:

I went back to see my surgeon, Dr Burchiel, for my two week follow up visit. He assured me that everything I was experiencing was to be expected and not to be concerned. In our friend Jack's words...PATIENCE! I am getting better though, allowing my body (and mind) to go through the process. A little over two weeks after surgery and I still feel like I am "living under water". That's the best way I can express it. Everything is still in slow motion. Still bumping into things, but I can definitely say I am walking with more confidence and strength and stamina are on the rise.
So at this point...we just let nature take its course. Over the past week, I am only prepared to say that I am approximately 95% spasm free. My face gives the indication that it wants to spasm, I get little flutters... but it can't seem to actually do it, and that is more than okay with me! Dr. Burchiel seems to think that I can achieve 100% spasm free within a short time, and he thinks because of my situation, a second MVD won't ever have to take place. I am so grateful to both him and, of course, our incredible website here.

Monday, May 2, 2005 - Day 40 Post-Op:

I had a good run but over the past week the spasms have been back more frequently, and just today, it feels like I never had the operation at all. It's very depressing but I can only hope that it is just part of the process of the nerve healing and before long it will be completely at rest. I will try to remain patient, but this past week and today in particular has definitely set me back emotionally. I will keep you all posted.

Permission granted the HFSA to post MVD Diary on website.
Andy Jamison, May 02, 2005

 

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