MVD Diary - Barb Bartz
Monday, March 29, 2004:
The alarm went off at 2:45 a.m. Today’s the day we (my husband Bob and I) leave for the U.S. After a quick shower, the phone rings. It is the taxi driver we arranged with Avis taxi service, informing us he was waiting outside our house. We leave the house around 3:30 a.m. I am amazed at how many vehicles are out and about at this hour of the morning. Manila is truly a city that never sleeps. About ¾ of the way to the airport, I panic and wonder if I packed my green notebook, which contains all the information pertaining to my MVD. So we stop at the next gas station and I quick check my carry on bag. It is still there, right where I put it. It must be last minute nerves. We get back in the taxi and arrive at the airport about 3 hours before our flight.Getting through the airport is fairly routine and uneventful. So is the plane ride to the U.S. I am able to sleep on most of the flight. We were able to see 3 new airports on this trip. The first part of the flight was about 4 hours to Nagoya, Japan. It was a fairly short layover- just enough time to take two laps around the airport and stretch my legs. Then it was back on the plane for the long 13-hour trip to Detroit. From Detroit, it was just a short 1-hour flight to Pittsburgh.
We arrived in Pittsburgh at 2:30 p.m. on the same day we left (I’m still trying to figure that one out- it’s because we crossed the international dateline somewhere over the Pacific Ocean). Our friend, David Sholl, was there waiting to pick us up at the airport. We had not seen David for about 14 years, so we had a lot of catching up to do. He drove us to Deb Magness’s home, which is where we stayed for the next 10 days. After dinner, we started feeling tired and finally headed off to bed around 9 p.m.
March 30, 2004:
I was able to sleep until 5 a.m. or so. Jet lag usually wakes me up in the wee hours of the morning, so being able to sleep past five is doing well. Today was the day to meet with Dr. Jannetta. We were using David’s car during our stay in Pittsburgh. Deb left us with detailed directions on how to get to Allegheny General Hospital. Our appointment was for 1:00 pm. We got a little lost, but made it to the hospital in time. However, even though I remembered my green notebook, I forgot to bring my chest x-ray and MRA films. So Bob had to go back to the house and get them. While waiting for Bob to return, Kathy Evan (Dr. J’s nurse) came to the lobby and took me back to one of the rooms. Dr. Jannetta was still out of town, so I met with Dr. Ken Casey for about 45 minutes. I was very impressed with Dr. Casey. I found him both extremely knowledgeable and entertaining. He asked me several questions, and then I was able to ask him all of my questions. My favorite answer was when I asked him if I would have a catheter when I woke up from surgery. He said, “I don’t like catheters. We don’t do catheters. (Unless the patient is not able to urinate on their own after surgery).” That made my day, since I hated the thought of having a catheter in addition to all the other things associated with the surgery.
Tuesday evening, we met Marcia Licata (HFSA member from Pittsburgh) for dinner at Olive Garden. What a neat time we had. Olive Garden is one of my favorite restaurants and it was so neat to talk with Marcia and hear all about her surgery. Time went quickly and I am so glad we had the opportunity to get together. It also helped us stay awake and not go to bed too early.
March 31, 2004:
I woke up around 3:30 a.m. to go to the bathroom. However, I noticed a bit of burning at the end of my urination. I turned the overhead light on and looked at the toilet tissue and it had a slight pink tinge to it. Oh no, I thought. I hope I’m not getting a urinary tract infection! I went downstairs, found some cranraspberry juice and drank about 24 ounces and went back to bed. When I got up 1/12 hours later to go to the bathroom, the water in the toilet was tinged pink. Yep- I definitely have a UTI! Would I be able to go ahead and have the surgery the next day? I didn’t even want to think about it. I waited until 8 a.m. to call Kathy. She told me to come to the hospital right away and have a urinalysisWe arrived at the hospital around 8:30 a.m. After waiting at the lab area for about 20 minutes, my name was called and I went in and answered several questions for the registration person. (Had to get all that information in the computer!) When I went to have the urinalysis done, it was a bit confusing. The specimen jar said something like “Clear stream”, so I asked the nurse if I had to do a mid stream sample or just go. She said, “Just go”, but when I went into the bathroom there was this long set of instructions on the wall for “clear stream”. As I was reading the instructions and trying to figure out what to do, I looked down and realized the toilet bowl was filling up with murky gray stuff (I didn’t want to even think about where it was coming from- all I wanted to do was finish up and get out of there!) Fortunately, I opened the bathroom door just as the toilet bowl filled up to the rim. I said to the nurse, “I’m finished, but I think there is a problem with the toilet.” She took a peek and said, “Oh, no- not again.” I walked back to the waiting area, looked at my husband, Bob, and started laughing. Then I told him what happened. It just all seemed so comical at the time. Like- what else can go wrong? You have to either laugh or cry.
After the lab work, I headed off to get my EMG and NCV done. The person doing the testing took one look at me and said, “I would be very surprised if it was not HFS. I’m certain that it is.” The tests confirmed his observations. The testing didn’t take long and I didn’t think it hurt much.
I went back home and waited for Dr. J’s office to call. I finally called them at 1:00 p.m. and they still didn’t have the results from the urinalysis. Kathy called at 2:00 p.m. and said I needed to go on antibiotics. She did not say anything about having to postpone the surgery and I didn’t ask. I was able to pick up the antibiotic at a drug store just around the corner from where we were staying. I called the hospital around 3 p.m. and found out my surgery was scheduled for 7:30 a.m. and I needed to be at the hospital by 5:15 a.m. That was good news, since I didn’t want to be waiting around half the morning before going into surgery. I also made a call to Darlene Frederick, another HFSA member from Michigan. We had a nice phone visit. Later, we met up with our friends, the Sholls, for an early dinner. Then it was back home and to bed early.
April 1, 2004- “MVD Day”:
We were up bright and early and off to the hospital by 5:00 a.m. It’s amazing how quickly one can get ready in the morning when you don’t have to eat, fix your hair or put on makeup. There were lots of people in the registration waiting area. We took a seat and waited for about 15-20 minutes. I was told to bring my insurance card and an ID. After meeting with the registration person, I was also asked for my SS number, which I hadn’t brought with me. Fortunately, I remembered the first 5 digits and that was good enough for him.I was then called back to a room to dress for the surgery. It was like a regular hospital room and I changed into a hospital gown. Then I had to have another urinalysis. In addition they took some blood, took my temperature, took my blood pressure and had me put on these surgical socks. Rick, Dr. Jannetta’s physician assistant, came in to see if I had any questions and explain what would happen next. Then I got on a gurney and was wheeled down to the surgical area. It was at this point that I said goodbye to Bob. I was not at all nervous and felt quite at peace with the whole process. They put the gurney in a large room that had my name already on the wall above the bed. My neck was marked on the HFS side with a magic marker. (That was very reassuring). Then the anesthesiologist came in to explain what she would be doing and started the IV’s. At the same time, Dr. Jannetta and Dr. Casey came by to say hi and see how I was doing. It was my first time to meet Dr. Jannetta. I remember them leaving, but don’t remember anything after that until I woke up after surgery.
My first recollection was sort of waking up with a nurse nearby. When he saw me awake, he went and got my husband, Bob. Bob said he had talked to Dr. Jannetta, and that the surgery went well. They found an artery compressing the 7th nerve in two places. They also found a vein sandwiched between the artery and the nerve. So they cauterized the vein and padded the artery. My face seemed calmer when I woke up and I was very thankful that I had no hearing loss. Then they wheeled me down to the Neurological Intensive Care Unit (NICU). I was placed in a corner, which was nice because it was not quite so noisy. For the rest of the day and evening I slept off and on. Bob came in to visit me during visitor hours, which are quite limited in NICU. But I was really too tired to talk much.
The nursing staff in NICU was great. I was hooked up to a couple of IV’s which made turning in bed difficult. The nurse said I could lie on either side. A few times, I experienced vertigo when trying to lie on the HFS side. It immediately subsided when I would turn on my back. I had very little pain. The incision felt sore at times, but the whole HFS side of the back of my head was numb. I think that was actually a blessing, because it helped me not feel the pain as much. (Later, Rick told me the numbness was caused by the nerves in the skin which are cut during the surgery, and that it would take up to 2 months for the numbness to wear off.) I did take pain medication for the first 10 days after surgery, but never felt the pain was worse than a 3 or 4 (on a scale of 1-10). I did not have any nausea the first day.
April 2, 2004 - Day 1 Post Op:
I was not allowed to eat anything while in NICU. The nurses wouldn’t even give me ice chips until half way through the night. My lips got very dry, so I asked them to put some Vaseline on them and that helped. Around 7:30 a.m., I started feeling nauseated. I don’t know if the ice chips from a few hours earlier caused it or the vertigo when I turned on my side a few times during the night. I finally quit fighting the nausea and told the nurse I was sick. He brought one of those emesis basins. Thankfully, I was sick for only a second and that was the only nausea I had for the rest of the day.Dr. Jannetta and Dr. Casey also came by in the morning for a visit. Unfortunately, they arrived about 20 minutes after I was given pain medication, so I was feeling pretty out of it and I apologized to them for not being able to think very clearly. Of course they understood what that was all about. I was having some spasms, but they were better than before the surgery. Dr. J. said I appeared to be doing well. He needed to leave that afternoon for a funeral in Texas, but said that Dr. Casey would check in on me the following morning.
I didn’t get transferred to a regular room until after lunch. When I arrived, there was a clear liquid tray on my bed stand. I tried to eat the sherbet and the broth but nothing tasted good. I wasn’t able to eat anything sweet until about a week after the surgery. Sweets tasted way too sweet or something- not at all appetizing. I decided to wait until dinner to see how a regular meal would go. In the afternoon, I called for the nurse and told her I needed to go to the bathroom. So that was my first attempt at sitting up and walking. I sat up on the side of the bed and didn’t get dizzy. After sitting there for about a minute, I stood up and walked with assistance to the bathroom. My legs felt a little shaky, but otherwise it went okay.
Dinner arrived and I felt kind of hungry. I ate the fish and some of the baked potato and vegetable. After dinner, I told Bob I wanted to go for a walk. I knew the sooner I started eating and the sooner I started walking, the sooner I would be released from the hospital. We walked out the door and down to the waiting area. I sat down for a while and then walked back to the room. It wasn’t much of a distance, but at least I was up and about. I was able to remove the surgical stockings that evening before going to bed. That was a relief, because they were getting quite uncomfortable. I slept off and on throughout the night.
April 3, 2004 - Day 2 Post Op:
I was awakened around 6:30 a.m. by Dr. Casey. He asked how I was feeling. I was feeling pretty good and he said I could go home. That was a bit of a surprise. At first I was happy. Then I wondered how I would do at home without the nursing staff. He took off the bandage on the incision and said it looked good and that I should shower and wash my hair before leaving. He also told me my follow-up appointment was scheduled for Wednesday, April 7th. That was a bit of a problem, because the follow-up appointments are usually scheduled on Tuesdays so our tickets were scheduled to fly to Minnesota early Wednesday morning. However, we were later able to get our Northwest flight changed to Wednesday afternoon without paying a penalty since it was due to medical reasons.The nurse came in and helped me shower. She washed my hair, since I was afraid to touch anything around the incision. The back of my head was still numb, which made my head feel larger than it was. I was amazed that I could just pour water and shampoo over the incision. The nurse called Bob and he arrived around 9:00 a.m. In half an hour, I was dressed and heading for home.
I did manage to take a short walk outside later that day. The weather was really nice, so I walked to the end of the block and back assisted by Bob. It felt good to get some fresh air. It also felt good to be out of the hospital and able to eat favorite foods whenever I wanted. I didn’t have much of an appetite, but tried to eat some protein and complex carbs at each meal. Sweets still tasted pretty bad.
April 4 - 6, 2004- Days 3 - 5 Post-Op:
All of these days were kind of the same. I took lots of naps. I also continued to take pain medication during the day, and Tylenol PM at night to help me sleep. The pain I experienced was around the incision area. I didn’t really have any headaches during this time. The weather wasn’t conducive to walking, but I did manage to get outside on Tuesday. My appetite didn’t really return until April 6th. That evening we ventured out for a meal with our friends, the Sholls. We met them at a Chinese restaurant and the food really tasted good for the first time since the surgery. I did notice that I felt a little lightheaded while at the mall. I think this may have been due to the pain medication.
April 7, 2004
I arrived at the clinic for my 10:00 appointment. Dr. Casey was out of town, but I met with Dr. Jannetta and Rick. I continued to experience some spasms. Dr. Jannetta asked me how I was doing. I said that I felt better. He said, “I don’t want you to feel better, I want you to be better.” He said it could take up to 3 months for the spasms to completely disappear. In some cases, it could be longer, but he was confident that the spasms would completely subside with time. He said they would disappear in the neck area first, then the face and lastly around the eye. After taking some pictures with Dr. Jannetta and Rick, I went to say goodbye to Kathy Evan and Melissa (administrative person who handles the insurance issues). Kathy told me to let them know how things were going through email. She requested I send them some digital pictures in 3 weeks before I headed back to the Philippines.Later that afternoon, I flew back to Minnesota. I took Actifed for the plane ride and didn’t experience any problems with my ears. After spending the night at a friend’s home, we drove to my parents’ home the next day. It was a four-hour car ride and it went much better than I expected. At this point I was feeling pretty good energy wise.
April 8 - 15, 2004
I am amazed at my recovery. Although I am taking a long nap every afternoon, I am feeling really good. The weather in Minnesota is cold, so I am not able to get out and walk as much as I would like. The spasms seemed to get worse over Easter weekend. Then for the next several days they were better. I guess they just are not going to leave without a fight. I am still taking pain medication occasionally when my incision hurts.
April 16 - 22, 2004
My energy level is really good. I take about a one-hour nap in the afternoons. I discontinued the pain medication after 10 days and am now using ibuprofen when needed. I caught a nasty cold around day 12 post op. My spasms are worse, especially when coughing. I am wondering if my cold is having a negative effect on the spasms. The cold continues and I am due to leave for the Philippines. I finally go to the doctor and get an antibiotic and cough medication.
April 23, 2004 - Three weeks post-op
The trip back to Manila is long and more difficult than expected. Even though I am taking antibiotics and Actifed, the two landings in Japan and Manila cause pressure to build in my ears and it is quite painful. I am thankful it seems to affect the non-HFS ear more than the HFS ear. Don’t know if that really matters. Getting over jetlag and a cold at the same time is no fun. Spasms seem to be worse, so I decide to just sleep when I’m tired. It will take longer to get over jetlag, but will probably be better for my recovery in the long run.
April 29, 2004 - Final post (One month post-op) - Three weeks post-op
At this point, the spasms seem very cyclical. Some days are good. Other days are not so good. I was feeling a bit frustrated and disappointed by the apparent lack of progress, so I wrote an email to Robin Clark who had a similar recovery after her MVD surgery (it took 3 months for her spasms to disappear). She wrote a very encouraging response, saying that the cyclical nature of the spasms after surgery is normal. I found this reassuring and am now concentrating on getting enough rest and not focusing on the spasms. I continue to remain positive and hopeful that the spasms will be completely gone in another 2 months. I will update my journal when I reach spasm free status.