MVD Diary - Paula Hiltz

Surgery performed by:    Dr. Anthony Kaufmann
Surgical Location:          Health Sciences Centre Hosp., Winnipeg, Manitoba (Canada)
Surgery Date:                 November 15, 2006

Diary prepared by:         Paula Hiltz
Date diary finalized:       January 12, 2007

 

Monday, October 30, 2006 - First Step:

 I received a call from Doctor Kaufmann’s office informing me that they have a date for my consultation and surgery, two weeks from now! Panic begins to set in - should I go now or wait for the new year. If I go now will I be ok to entertain our family over the Holidays? After much debating, my husband and myself decided it was time to go. Things like “do it now” means less worry time, better travel weather in November versus January or February.

The wheels are now set in motion for a visit to Winnipeg. I was able to get plane reservations, but hotel reservations were much more complicated, as hotels in Winnipeg appeared to be booked. We were finally able to get four days at a hotel with the promise that they would get me another day as soon as one becomes available. In the meantime we booked Lennox Lodge for the other two nights we needed. It turned out the shortage of rooms was due to the Grey Cup game that was being held in Winnipeg on the weekend following my surgery.

 

Monday, November 13 2006 - Day of Arrival

 We arrived at Winnipeg airport at 3:30PM, from Halifax through Montreal and took the shuttle to the hotel. Picked up a few snacks and things for our room from the store that was only about 3 minutes away. (We had a fridge, which was great) We walked around the City Center and had dinner. We came back to the hotel and set up our laptop. It was interesting that the hotel room had a computer in it, which we could have used had we not brought our own.

 

Tuesday, November 14, 2006 - Consultation:

 At 8:30AM we left the Best Western for the hospital, about a 15-minute cab ride. Our first objective when we got there was to get our coffee fix. We then went to Dr Kaufmann’s office, where Norman redirected us to registration. It was here we were asked to provide our Nova Scotia MSI card. Then we headed back to Dr Kaufmann’s office for our consultation.

While waiting in Dr. Kaufmann’s office we met Andrew MacCarthy, a fellow HFSA member, and his wife Julie from Ontario. Andrew was scheduled for his surgery on November 15th in the morning and I was scheduled for the afternoon. We both knew we had a big day ahead of us.

My husband and I met with Dr Kaufmann, who was so nice and easy to talk to. He explained the procedure, including all the possible problems that could arise. We asked a lot of questions and he took his time and answered them in terms that were easy to understand.

We left Dr Kaufmann’s office feeling confident that we had the most qualified Doctor in Canada to do the surgery. We both had concerns about possible problems that might occur but were confident that if anyone could overcome these, Dr Kaufmann could. We knew he had to review all possible medical risks. These percentages bothered us, I knew that I had to take the risk but my husband Gordon was particularly concerned as it was really the first time they had been spelled out for him in great detail.

While in Dr. Kaufmann’s office we met Janice Nesbitt, his nurse, who I had talked to many times over the phone. She is bubbly and full of enthusiasm and very reassuring just like she was on the phone. She was confident that I was in the best hands and knew I would be just fine! She will be calling me in two weeks and again in two months but if I have any problems I could call at any time.

When we were leaving the office we wanted to know where the University library was located so Gordon could send out E-mails to friends at home who wanted to know my status. We asked Norman in Dr Kaufmann’s office where the library was located, he kindly walked us over to the University. That was super as the Winnipeg Health Science Center Complex is huge.

We had lunch at the Pedway Restaurant in the university complex. It was a pretty good place to eat. After lunch we had to meet with the Anesthesiologist. Here I first talked with a nurse who asked me many questions, then the Anesthesiologist came in and asked more questions. We were soon finished with all the appointments and details. When I was leaving I asked one of the nurses why no one ever questions why we were from Nova Scotia and having surgery in Winnipeg. Her answer was you are having surgery with Dr Kaufmann and people come from all over Canada, and many other places outside of Canada.

The rest of the day we played tourist around downtown Winnipeg. To my surprise, I was allowed to eat supper even though I was having surgery the next day. So we ate at a nice Italian restaurant in the City Center Complex, five minutes walking distance from the Hotel. I was not allowed to eat after midnight. That night I did not have too bad a night sleep considering what I was facing the next day.

 

Wednesday, November 15 2006 - "MVD Day:

 We arrived at the hospital at 10:15 AM to register. We were then directed to the third floor and at 10:35 I was asked to dress in the hospital DREAMWEAR!! This is it! I was getting a little nervous but the whole time I was totally confident that I would be fine! Around 11:10 I received an IV and then had to put on special hosiery that were really tight and stretched the full length of my legs. This helps the circulation in your legs, as they then attach another device over these stocking which keeps the blood circulating.

I was taken from the third floor about 12:30 PM, where Gordon had to go to the waiting area. He got off at the 5th floor while I went to the 7th floor. While I was waiting, the nurses from Dr Kaufmann’s team came by to talk with me. Then the anesthesiologist came by explained they were running late but it would only be a little while longer. I can remember lying here wondering if I was doing the right thing. I must have had to disturb one of the nurses at least 3 times as I had to go to the washroom. I needed help getting there as I had an IV to take with me. When I got to the washroom I really did not have to go, I guess it was just nerves. About 1:45 PM I remember being rolled into the OR, which looked smaller than I expected. They asked if I was ready and from here on I don’t remember anything.

After the surgery Dr Kaufmann came to see Gordon in the waiting room, while I was in recovery at that time. Dr Kaufmann told Gordon everything went well in surgery, no complications and no surprises, which of course was great news for Gordon and I. But of course I was unaware of anything at this time. They were able to move the nerve, and insert the Teflon pads, to prevent the nerve from returning to its previous location. He also explained to Gordon that they had done a test which indicated a good sign that the spasms will disappear in time.

Gordon made phone calls to family and friends, then sent emails to others. When he came to visit me, apparently I was groggy haha, not a surprise I guess. The nurses and staff kept asking me where I was, my name, how bad my headaches were. I told them my headache was 2 on a scale of 10, most unusual for someone who gets really bad headaches. Before leaving me to return to the hotel about 7:00PM, Gordon stopped to talk with Andrew and Julie who were right next door to me.

 

Thursday, November 16 2006 - 1 Day Post-Op:

 All through the night the staff kept waking me and asking me my name, where I was and how bad were my headaches. I was in a fog. As I remember it, this seemed odd to keep asking the same questions, because I knew I had answered these questions many times. Obviously I did not sleep well. I woke with a headache plus I was hungry so I guess that was a good sign.


Paula Hiltz incision 1 Day Post Op

Gordon came to visit at 8:30 AM and Dr Kaufmann came a little later. Dr. Kaufmann explained that the surgery went well. The spasms at this point are still there, but they are much milder. Dr Kaufmann said they could actually disappear for a few days but to not be surprised if they come back. He felt confident that they would gradually disappear for good. He told us we could go back to the hotel if I wanted, and in fact encouraged it. He said I could take my painkillers there as well as in the hospital and there are fewer germs at the hotel. No special precautions other than not a big shopping day, as I may get tired and have a headache! He also said I could wash my hair on Friday and use the hair dryer. I can pretty much do anything but not to over do it. That sounded good to me.

As I was getting ready to leave, I got a phone call from my Boss. He was shocked that I was able to get up to answer the phone and more shocked when I told him I was headed back to the hotel. I too am still amazed that I'm feeling this good.

Gordon and I went to lunch at the Pedway restaurant in the university complex before leaving for the hotel. After lunch we went back to the hotel where I took two Advil and slept. For a person who regularly gets migraine headaches, so far I was not having bad headaches. I was still surprised at how good I was feeling. After all, I had brain surgery. At suppertime we went to the hotel dining room, went for a little walk to the store about 3 minutes away. It was hailing out and the sidewalks were getting icy. Fortunately we were able to walk under an overhang so I was not in danger of slipping.

 

Friday, November 17, 2006 - 2 Days Post-Op:

 Got up, showered and washed my hair/ I had trouble sleeping due to stuffed nose. Got dressed and we were too early for our 11:00AM appointment so we went to Tim’s in the University Complex. This was in a unique, large glassed in area and we felt like we were sitting outside.

We then met with Dr Kaufmann and he said we could leave Winnipeg tomorrow. I still am shocked at how well I am doing… I was so excited about the surgery being over that I forgot to ask some questions about what I can and cannot do although Gordon said he did not give me any restrictions except to take it easy. Dr Kaufmann said the spasms will gradually disappear and not to worry about them. We sat and chatted with him for a bit and he did answer many other questions. He is a very special doctor, caring, knowledgeable, understanding and an expert in his field. Anyone who goes to him is in good hands and should not worry!

 

Saturday, November 18, 2006 - 3 Days Post-Op:

 We left for the Airport, flew to Toronto and were picked up by our daughter. I had no problems flying. We spent two days visiting and playing with our grandson. I found I did get tired so I had a couple of naps during the day and also took Advil as needed. Spasms are fairly mild and a lot less frequent, although when one occurs I get concerned they will return with a vengeance.

 

Monday, November 20, 2006 - 5 Days Post-Op:

 Got up bright and early. We left with our daughter and grandson to take him to day care, and had a tour of his school before heading to the airport. We arrived back in Halifax at 1:00PM. Again, I had no problem flying and was still feeling pretty good. Drove out to Seaforth to pick up our dog Bailey. She was kind of dirty but happy to see us. We got home about 3:30PM.

It was so good to be home. Over the last few days I have taken about three Advil a day to prevent the pain as I did not want any headaches while away from home, but today I only took two. Felt pretty good, my throat is kind of scratchy, probably from the tubes down my throat during surgery! Spasms are very mild, very different than before surgery.

 

Tuesday, November 21, 2006 - 6 Days Post-Op:

 So I am feeling pretty good from surgery but I woke up this AM with a really bad sore throat. Janice at Dr Kaufmann’s office suggested I see my doctor as I may have picked up an infection. Still having very mild spasms, did not take any Advil today.

 

Wednesday, November 22, 2006 - 1 Week Post-Op:

 Went to Doctor for my sore throat and he did a throat swab as he won't prescribe an antibiotic until a bacterial infection is confirmed. Some spasms, eye actually closed today!! I did not like that of course. I only took one Advil today.

 

Thursday, November 23, 2006 - 8 Days Post-Op:

 Stitches tender, spasms milder. Took only 1 Advil today. Spasm more noticeable today but only when I eat. Tonight I did notice them in the cheek and eye but much, much milder than before surgery.

 

Friday, November 24, 2006 - 9 Days Post-Op:

 Still had spasms, although mild. Headache near the stitches. Took an Advil tonight.

 

Saturday, November 25, 2006 - 10 Days Post-Op:

 Busy day today, first major outing since surgery. We went to a friends 60th Birthday, no nap today and went to bed at 10:00PM. Spasms very mild, more like a flutter. My sore throat has developed into a cold and Gordon also has an awful cold. Must have got it on the flight to Winnipeg where we were sitting right next to the exit door and it was so cold.

 

Sunday, November 26, 2006 - 11 Days Post-Op:

 Slept 12 hours, very rare for me. No Advil today.

 

Monday, November 27, 2006 - 12 Days Post-Op:

 Spasms today in mouth area and cheeks acted up. Gordon's cold is now Pneumonia. I am coughing like crazy even though my throat swab came back negative. I am worried about my spasm and Teflon pads because of all the coughing.

 

Tuesday, November 28, 2006 - 13 Days Post-Op:

 Went to Doctor now he says I have bronchitis, so I am on antibiotics. My spasms seem more like a very tiny flutter.

 

Wednesday, November 29, 2006 – 2 Weeks Post-Op:

 Woke up coughing myself silly due to bronchitis, but the good news is spasms seem to be gone today.

 

Wednesday, December 13, 2006 – 28 Days Post-Op:

 I had a bad night, my eye lid had these tiny twitches, more like a flutter, most of the evening and while I was trying to sleep.

 

Thursday, December 14, 2006 – 1 Month Post-Op:

 Woke up with a headache, no wonder, I guess I did not sleep well worrying that the spasm were returning.

 

Monday, December 18, 2006 – 1 Month, 3 days Post-Op:

 I am feeling good, my headaches are rare, practically non existent. This is strange for one who gets headaches regularly. Spasms are rare and the ones I get are more a slight flutter and these too are becoming less frequent. They also go away as quickly as they come. So life is good.

 

Monday, January 10, 2007 – 2 Months Post-Op:

 Since surgery, any spasms I had have been extremely mild, nothing like what I had before surgery. Since the middle of December 2006 I notice an occasional slight eyelid flutter, lasting for a second, then poof, gone! Since late December I have not even had the flutters. So, I am delighted to say that I am "SPASM FREE"! This is such a good feeling!!! The best part is laughing, smiling, knowing you can chat with anyone, being confident your face is normal. This is such a relief.

Thanks to the Hemifacial Spasm Association (HFSA) for being there. Thanks to Jack O’Donnell for all his work on the website and looking after all the emails. Special Thanks to Dr. Anthony Kaufmann, Winnipeg Health Science Center Winnipeg, Manitoba for being our HFS expert in Canada. It is so comforting to have Dr. Kaufmann in Canada. Not only should we be happy with his expertise but also because he is a really nice Doctor. What a fantastic combination, I cannot say enough.

Permission granted the HFSA to post MVD Diary on website.
Paula Hiltz, January 14, 2007

 

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