MVD Diary - Joseph Lai
HISTORY
My Hemifacial Spasm started in Spring 2000 with my left eyelid. Initially, it was just a slight flutter, but when I try to read in front of people, I get nervous and the fluttering becomes twitches. It was in early 2001 that I had a MRI and was diagnosed with HFS by my neurologist. Initially, my doctor recommended that I just wait and see, as my spasms were mild. Well, I was able to learn to live with the spasms for a number of years, but as time went by, my spasm slowly progressed to my mouth and cheek. Then in 2004 I started experiencing clamps/tonus on the left side of the face with my eye closing for a few seconds and my spasms were increasing in both frequency and intensity.
It was at this time, November 2004, I tried Botox. I found that Botox worked for 3-4 months but my wife said I had no facial expression on the left side of my face and it seems funny when I tried to smile. We both felt uncomfortable with the long-term effects of the Botox. So, thereafter, I did not have any more Botox.
During the next 2 years my spasms had gotten so bad that I couldn’t handle it anymore. I needed to get it fixed, but didn’t know where to go. It was at this time that I started to search for a support group on the Internet. I thank God that I found this wonderful group. I read all I could about the disorder and the experiences of other members of how they deal with their spasms. It was at this support group that I learned about MVD surgery and through the members’ MVD Diary I was able to find hope in curing my HFS.
Initially, my wife and I wanted to find a doctor in Toronto, Canada, to carry out the MVD surgery. My neurologist referred me a neurosurgeon in Sunnybrook Hospital, Toronto. During my consultation in November 2006, the neurosurgeon couldn’t answer my question of how many MVD surgeries he had performed. This didn’t instill confidence for my wife and I. It was during this period of decision that Paula Hiltz of Halifax, Nova Scotia, sent me an e-mail and suggested that I "get the best most experienced doctor and make sure that the doctor has the interoperative monitoring equipment.” I believe it was divine intervention that Paula sent me an e-mail at just the right time, because we can see that God wanted me to go to Winnipeg and have the surgery by Dr. Kaufmann. After contacting Dr. Kaufmann in early January 2007, I was set for surgery on May 8, 2007. Below is my account of my MVD experience.
Sunday, May 6, 2007 – Day of Arrival:
Arrived at Winnipeg airport at 10:30 p.m. and Raymond, a friend of our sisters at my church in Richmond Hill, picked up my wife and I. It was short ride to Lennox Bell Lodge, the place where we will be staying for the next 5 days. The Lodge was not the best. Future HFS members having surgery in Winnipeg, may want to consider other hotels with shuttle services to the hospital. I’m sure Janice or Andrea (Dr. Kaufmann’s assistants) can help in this regard. The Lodge, however, was very convenient in going back and forth between the hospital and the Lodge.
Monday, May 7, 2007 – The Day Before:
This is the 1st full day of my journey in Winnipeg and hopefully it will lead to the return to a Spasm Free life. Didn’t sleep to well and woke up at 8:00 a.m. It was during my morning devotion time that God spoke to my wife and I, and affirmed that "because of his immeasurable love for us that he will give us strength through the power of the Holy Spirit" (Ephesians 3:14-19). This passage gave great comfort to both my wife and I, and knowing God is in control and he will lead every step.It was a warm sunny day and we had breakfast in the General Hospital cafeteria, where there is a Tim Hortons. After breakfast we went to Dr. Kaufmann’s office, but was told I had to first get registered at the Admittance Office. Met with Dr. Kaufmann and he looks like the picture on his web page; but now seeing him in person, he is taller. Dr. Kaufmann is a very nice doctor and easy to talk to. He explained that from my MRI, I have a lager blood vessel pressing against my 7th cranial nerve and some smaller branches as well. This is the likely cause of my HFS. He said further, because of this, a large dent on the nerve is likely and that there is a higher possibility that I might experience post surgery Bells Palsy. This condition usually goes away in a few weeks.
Then we had lunch at the Pedway. The food was not too bad; had a lot of choices. But beware; the café closes at 2:30 p.m.
At 1:00 p.m. I met with the anesthesia doctor and every thing was in order except I have to re-do my EKG because the one I took in Toronto didn’t show too well. I also asked the doctor if only having a light dinner/meal the day before surgery would it help to reduce my nausea after surgery? He said it will likely help and it did.
After all the tests and questions were done, my wife and I became tourists in Winnipeg. Thanks to our brothers and sisters in our church in Richmond Hill, they made arrangements with their friends in Winnipeg to help us while we were there. Well, that afternoon three wonderful angels drove us to a grocery store to help us buy some bottled water and fruits, and showed us around town. That evening we had a wonderful dinner at a Chinese restaurant called Kim Koon Garden, which was much better then the hospital food.
Tuesday, May 8, 2007 - "MVD-Day":
This is the day! Both my wife and I slept pretty well considering that I’m going to have major brain surgery. Perhaps, we both have this inner peace and know who is in charge – God.Went to the Admitting Office at 9:30 a.m. and signed all the forms. Then went up stairs to room MS3 to change and get ready for the surgery. But when I got there, I was told all surgeries were on-hold as there were no beds available. What, how can this be? At this point my wife and I prayed and put our trust in God’s hands. God wouldn’t have me come all this way to Winnipeg and have the surgery postponed at the last moment. Well, the nurse had me change and get ready just in case the operation was a go. At 11:00 a.m., another nurse came around and said I was a go for my surgery while there were other people still waiting. Believe it or not, I walked into the pre-operation wait area instead of being wheeled in a bed or a wheel chair. This is a new extension of the hospital and while I was waiting 2 nurses came by and asked me a lot of questions that they already have the answers for, but they wanted to double check. Then at 11:45 a.m. they wheeled me into Operating Room. We traveled through a long corridor that was very bright and had cleaning stations on both side. Being a new wing, the Operating Room is big with equipment everywhere. With music playing in the background, a nurse put a blood pressure IV into my waist and electro-pads all over my body. At about 12:15 p.m., another nurse asked me to breathe into this mask and after several minutes of deep breath I was out.
Next thing I heard was Dr. Kaufmann saying to me “Mr. Lai, everything went well.” I asked him what time it was and he responded by saying “it's 4:00 p.m.” He also said that he would go outside and tell my wife that I’m okay and the surgery went very well. I then dosed off. When I woke-up again later on, I quickly checked if I was spasm free. I didn’t feel any movement on my face. Oh what a wonderful feeling. Next I check if I could hear from my left hear, yes, I could hear. Considering I just had a brain surgery, I was feeling pretty good, with no major pain or headache, just a little nausea and the nurse gave me something for that.
At 6:00 p.m. they took me to the “step-down” ward and there I saw my wife and our friend. I was so excited to see my wife that I kept on talking. Later on my wife said I was so hyper and not my usual self. It must have been my reaction to the general anaesthesia.
Wednesday, May 9 2007 - The Day After:
Didn’t sleep to well with all the tubes and wires and the nurse waking me up every 2 hours and asking for my name, what date it was and where I was. At 6:00 a.m. the nurse took out my blood pressure indicator, IV, the catheter and the heart monitor. It was good to have the tubes and wires out. My head was beginning to hurt and my neck stiffening up. Took a couple of regular Tylenol, which helped to ease the pain. Sat at the edge of the bed for awhile and felt light-headed. Didn’t walk until my wife came at 8:30 a.m. It felt good to walk, but I was weak. Had breakfast; it was good, as I have not eaten for more then 36 hours.Dr. Kaufmann came around at 11:30 a.m. and explained that the surgery went very well. He found a lager blood vessel offending the nerve as shown on my MRI, and when he lifted the artery off the nerve, the nerve “stopped firing” and the spasms stopped as well. Because the artery has been sitting on the nerve for so long, there was a dent on the nerve. Then he put Teflon pads between the nerve and the artery. There were also some lateral spreads of the arteries offending the nerve at the back, which Dr. Kaufmann also put some Teflon pads as well. Dr. Kaufmann said everything looks good and that I may be discharged in the afternoon, if I wanted to. I was discharged at 3:30 p.m. and went back to Lennox Bell to rest and sleep. I was taking 2 Tylenol every 4-6 hours for my headaches.
Thursday, May 10 2007 - 2 Days Post-Op:
In rhe middle of the night I developed a fever. Didn’t have a thermometer, but I guess it must have been over 100 degrees F because I was cold and then hot. Took some more Tylenol to fight the fever until morning at which time I called Dr. Kaufmann and explained to him my condition. He was concerned enough to have me see him at 12:00 noon before he leaves for Toronto that afternoon. By the time I saw Dr. Kaufmann, my fever had subsided. He checked me out and everything seems to be okay. He said that some patients develop a fever after surgery. As long as it is not a high fever and it does not prolong, I should be fine and that I can fly back to Toronto on Friday. In the morning, I noticed some fluttering under my HFS eye and Dr. Kaufmann also noticed that during my examination. Dr. Kaufmann said this is normal after a few days of the surgery and it might take a few months before the spasm goes away completely. What a big disappointment, I was spasm free for 2 days and now the spasms are back. I was hoping the spasm is just a small flutter and will not develop into any major spasms.. That afternoon, I took 2 extra strength Tylenol and Gravol as I was feeling a bit of nausea. Slept for 5-hours and woke up much better. However, my fever reappeared in the evening so, I was taking 2 extra strength Tylenol every 4 hours.
Friday, May 11 2007 - 3 Days Post-Op:
Fever was gone in the middle of the night and I had a good sleep. The twitching of the eye and cheek were more noticeable, but it was much milder and less frequent then before I had the surgery. This is what Dr. Kaufmann said happens with most HFS patients; but gradually, it would go away in time. I’m not to worry as I have put my trust in God to take care of everything, and He has done that thus far.Our friend Raymond was kind to pick us up and drive us to the airport. But not before having lunch in a Chinese restaurant. My wife and I left Winnipeg at 3:15 p.m. and arrived in Toronto at 6:20 p.m. During that night my fever came back at 99 degrees F. Took some Tylenol for the fever and headaches and went to bed.
Saturday, May 12 2007 - 4 Days Post-Op:
Fever was gone during the night. Woke-up pretty good with a slight headache, but it got worse as the day went by. It seems the headaches have to do with the pain I got when they put this halo on my head to keep my head steady during the surgery. The pins from the halo caused more pain than the incision. Took some Tylenol in the evening for the headaches and pain but I had no fever, which is good news. Felt tried all day long and had a nap in the afternoon. Still having spasms off & on.
Sunday, May 13 2007 - 5 Days Post-Op:
Today is Mother’s Day and my wife is very tired from taking care of me and preparing all the home cooked meals for me so that I might have healthy food for a speedy recovery. She is not only a wonderful mom, but a great wife as well.Woke up with a headache and head pain, but bearable, so, I tried not taking any Tylenol. Still having some mild spasms. Didn’t have much energy to do anything else; just took things easy and slept.
Tuesday, May 15 2007 - 7 Days Post-Op:
Still having slight headaches and pain from the halo. The spasms seem to be less in both frequency and intensity.
Friday, May 18 2007 - 10 Days Post-Op:
Went out for the first time since coming back to Toronto. Had lunch with my sister and my wife, and then went shopping in a local mall. Felt pretty good, but still a little weak. Still having slight head pain and some mild spasm. So far no signs of Bells Palsy. Hope it will stays that way.
May 22 2007 - 2 Weeks Post-Op:
Still having slight pain from the halo pins on my head. But today the spasms seem to be a little more active and stronger with slight pulling on the corner of the mouth. Hoping and praying that this will not get worse.
1 Month Post-Op:
The headaches and halo pains are gone and my strength is coming back. Feel pretty good. Plan to return to work on June 18. Unfortunately, I am still experiencing spasms. Most of the time it is mild, but once in a while it is quite strong and pulls on the cheek and month.
2 Months Post-Op:
I am still experiencing mild spasms but it seems to be diminishing. Sometimes I have total control of my facial movements, like smiling and then opening my eyes wide open. But I do notice that when I am exited or stressed, my spasms act up a bit more; like my eye wants to shut for a split second and my cheek moves a bit more.
3 Months Post-Op:
Today is August 8, 2007, exactly 3 months since I had surgery. My energy is fully back and I'm feeling pretty good. I noticed for the past 2 weeks my spasms seem to be diminishing. They seem much milder and less frequent. Hoping that one morning when I wake-up I will have no more spasms. Until than I just have to be patient and rely on God’s timing to heal me completely.
9 Months Post-Op:
The day has finally arrived. Today is February 6, 2008, and I can now say that I am "SPASM FREE". I had my MVD surgery on May 8, 2007 in Winnipeg, Canada, by Dr. Kaufmann. I was spasm free for 2 days after the surgery, but than slight spasms came back. The spasms were much milder and less frequent then before I had the surgery. I would guess at that time, I was about 80% spasm free. Dr. Kaufmann said the spasms will go away in about 3 to 6 months. Well, the spasms did gradually decreased, and slowly overtime. The mild spasms turned into infrequent fluttering under my spasm eye. It was last Christmas I noticed that I was not experiencing any fluttering, and when I did the squinting test on my face, I did not feel any fluttering or sensations on the spasm side of my face. But I wanted to be sure before declaring myself spasm free. So I waited for a month and now I’m very happy to say “I am Spasm Free”. Oh, what a wonderful feeling to have a normal face again and to be able to smile without hiding my face. To other HFS members whom had MVD surgery but not spasm free yet, I say have hope and faith, and be patient because some of us takes longer time to become spasm free. It took me about 9 months to become spasm free.
CONCLUSION:
Without the HFSA, Dr. Kaufmann, and the help & support of family and friends, I would not have had the MVD surgery and be where I am today. I would like to express my gratitude and thanks to the members of the HFSA, Dr. Kaufmann & his staff, and my church friends in Winnipeg and Toronto.