June 19, 2007 I had my EKG and CXR completed. I sent my family doctor and Botox® doctor the necessary medical/Botox history forms for them to fill out and return to Dr. Kaufmann’s office. My blood work would be completed as soon as I have a confirmed surgery date. My MRI was done on August 21, 2007 and couriered the MRI CD to Andrea Kinnear in Dr. Kaufmann’s office. They have received all pertinent information to proceed with my surgery.

August 24, 2007 I received a call from Andrea Kinnear in Dr. Kaufmann’s office confirming my surgery date of October 2, 2007 at 9:30 a.m. I have waited so long for this confirmation; it was difficult to put into words how I felt. I was instructed to be in Winnipeg on October 1, 2007 for my consultation with Dr. Kaufmann. September 4, 2007 I booked reservations at the Best Western Charterhouse Hotel in Winnipeg. September 5, 2007 I received an email from Andrea Kinnear in Dr. Kaufmann’s office to reschedule my surgery; the anesthetist would not be available on October 2, 2007. My rescheduled date was September 27, 2007 at 9:30 a.m. I called Andrea and confirmed I would be there on September 26, 2007 at 8:30 a.m. to meet with Dr. Kaufmann. Called the Best Western Hotel and changed my reservations. My husband is planning on flying out the day of my surgery. September 22, 2007, the Explorer is packed and we are ready to leave early tomorrow morning.

At 5:30 a.m., September 23, 2007 my friends and I left on our 1500 mile drive to Winnipeg; stayed overnight in Terrace Bay, Ontario; arrived in Winnipeg at 5:00 p.m. on September 24, 2007. Located the Best Western Hotel, checked in, freshened up and out for dinner. September 25, 2007 – we did a trial run to the hospital. The hospital is a 10 minute drive from the hotel.

 

Wednesday, September 26, 2007 - Consultation – Dr. Kaufmann:

My spasms are extremely severe this morning. We left the hotel room around 7:30 a.m. and headed to the hospital for my 8:30 a.m. consultation with Dr. Kaufmann. I checked in at the reception desk and shortly there after Dr. Kaufmann came into the room. Dr. Kaufmann informed me that following surgery the spasms may return after a couple of days and diminish from there. The hospital duration depends on the person; there was a risk of Bells Palsy. I was given specific instructions if I developed Bells Palsy (usually shows up 10-14 days post-op). There could possibly still be weakness in the muscles around my eye because of the length of time I had HFS and received Botox injections. We had our picture taken together. Dr. Kaufmann made me feel at ease. He is such a pleasant and down to earth person. I expressed my concern over the flutters I have been experiencing in my non affected left side. He told me we would deal with that after my right side MVD surgery. I shook Dr Kaufmann’s hand and he said he would see me in the morning. I felt confident and not at all nervous concerning my surgery. I realized I was in the best possible hands. My friends and I had lunch and walked around the hospital taking pictures with the bear statues.

My next appointment was at 1:30 p.m. at PAC (Pre-Admission Clinic). I gave the receptionist my OHIP medical card # and registered with the hospital. I was instructed to proceed to another area of the department where a nurse weighed me; took my blood pressure and asked other health related questions. We discussed the surgery and asked if I had any other questions. The nurse gave me an "adult surgery instruction pamphlet" i.e. no eating after midnight, what personal items to take to the hospital; etc. She informed me that when I wake up in recovery I will have oxygen on and to breathe deeply. When Dr. Kaufmann feels I am ready to leave the recovery room I will be taken to the 5^th floor A Wing, Step-Down Unit (I.C.U.). I am to report to admitting tomorrow morning (September 27^th) at 7:30 a.m. Next, the anesthetist (Dr. Girard) came into the room and asked, if I take any medications? No; any known allergies? No. He asked me to open my mouth and looked inside to check for any obstructions that may impede the intubation. He explained how they would insert a breathing tube between my vocal chords and into my lungs. There was the possibility that my front caps could be broken off during the insertion of the tube. I thought great, how rough are they? This caused me great concern. I am worried about my caps breaking off, but not worried that I am going to have brain surgery tomorrow. He informed me that he would not be my anesthetist during my surgery, it would be another doctor. At 3:00 p.m. my appointments were completed. I am all set to get the surgery behind me.

At 5:30 p.m. my cell phone rang, it was Agnes from the Admitting Department informing me that my surgery for tomorrow morning was cancelled due to a shortage of beds. All this preparation for tomorrow and now it is not going to happen. She told me to call tomorrow morning and they should have a reschedule date for me. We ate dinner, back to the hotel room, emailed Janice concerning the cancellation. Janice emailed me back in a very short time and informed me that neither she nor Dr. Kaufmann was aware of the cancellation. She would speak with Dr Kaufmann in the morning. I would like to know as soon as possible when it will be rescheduled for; I wanted to inform the hotel, family, friends and HFSA. I am too far away to go back home; then return to Winnipeg for surgery; I am not leaving Winnipeg without my surgery…I am here for the long haul. I sent emails to the support group, family and friends informing them that my surgery for tomorrow was cancelled. My family and friends are more upset about my cancellation than I am. I believe things happen for a reason. After all I chose to wait nearly 21 years for my surgery; I will not stress over another few days. I finally went to bed at 2:00 a.m. and had difficulty sleeping for any length of time as the spasms are completely out of control.

 

Thursday, September 27, 2007 - Supposed to be my MVD date:

I awoke early from 3 hours sleep, anxiously waiting to hear from Janice. Janice called around noon and informed me that my surgery was rescheduled for Tuesday, October 2, 2007 (how ironic, that was my original surgery date) at 7:30 a.m., and to be in Admitting by 5:45 a.m. Janice explained there was a shortage of beds in the ICU. They will not schedule surgeries if there is a shortage of beds. That sounded great to me, they were being responsible not to jeopardize the health of their patients. I asked Janice to mark DO NOT CANCEL" on my file. Down to the front desk at the hotel and explained my situation to them. They reduced the room rate from $95.00/day to $75.00/day and give me a microwave and fridge for the room. We have another 5 days to wait for my surgery. What to do? I had a brain wave (pardon the pun); I decided I would drive my friends to Yorkton, Saskatchewan as they had never seen the Canadian Prairies. In order to pass some time I spent an hour in the fitness room at the hotel.

 

Saturday, September 29, 2007:

We left for Yorkton, Saskatchewan on Saturday morning at 6:30 a.m. and arrived back at the hotel in Winnipeg at 9:00 p.m. (550 miles return)

 

Monday, October 1, 2007:

I tried to rest; being that I am a very active (hyper) person; that did not happen. The phone rang most of the day, from my friends and family, wishing me all the best. I spent a considerable amount of time on the computer, reading my emails, especially from the wonderful support group and working out in the fitness room. I had a few butterflies in my stomach this afternoon, which surprised me. I hope to get some sleep tonight…if I don’t they will have to use minimal anesthetic for my surgery.

 

Tuesday, October 2, 2007 - "MVD Day":

I had very little sleep last night. Awake at 3:30 a.m., showered and washed my hair (no make-up, no hair gel, what a sight!!!). We left for the hospital at 5:00 a.m. and arrived in Admitting at 5:10 a.m. At 5:58 a.m. I was instructed to go to the 3^rd floor – MS3. I changed into a hospital gown and was assigned to a bed in a cubicle. Blood pressure taken, 120/72 "text book". Next I was given special thigh high leg stockings to put on to promote circulation and prevent blood clots; my left arm was wrapped in a warm glove; this makes it easier to insert the needles. At 6:25 a.m. the nurse inserted a needle into my hand to start an intravenous. There were three bags of fluids; one was a steroid, one to prevent nausea and an antibiotic. My friends were instructed to go to the waiting area SICU (Surgical Intensive Care Unit). At 7:10 a.m. the nurse asked a gentleman and I to follow her to the adult pre-op on the 7^th floor. Any of the medical shows I had watched; patients were always wheeled into the operating room on a gurney. Don’t always believe what you see on TV; I walked into the room. The waiting area was adjacent to the operating theatres. The area was dimly lit with a row of Lazy Boy chairs, there were also beds with patients waiting for surgery. A nurse checked my fluid levels and blood pressure. The anesthetist introduced himself; asked me health related questions and informed me I would be going into Operating Theatre 3 shortly. I have to tell you that I am very nearsighted (my friends have my glasses), I was concerned I may trip on something going into the operating room. The nurse asked me to follow her into the operating room; that presented a problem because of my eyesight. I followed the sound of her voice. At 7:20 a.m. I walked into Operating Theatre #3; I was amazed at how large and cold the room was. I was instructed to climb onto the operating table. The table was equally as cold as the room. I was hooked up to a monitor and my blood pressure taken again. The anesthetist was very friendly and made me feel at ease. I reminded him not to break off my caps when he was inserting the breathing tube. The atmosphere in the operating room was very relaxed. The nurse on duty had worked in the operating room for 32 years. Dr. Kaufmann had been a resident doctor with her. I felt very relaxed with the staff. I am still not the least bit scared; still very upbeat and positive.

When I came out of surgery Dr. Kaufmann went to see my friends to tell them how the surgery went. He told them once he got into my brain – there was more pressure on the nerve than he had expected. He can usually move the nerve; in this case he could not. The nerve had a couple of kinks in it, the channel between the 7^th and 8^th nerve was too close – no place to elevate the pressure – no place to reposition the blood vessel. He told my friends that in this case – there possibly would be delayed swelling in 10 days or so because of the extreme pressure on the facial nerve. My vitals during the surgery were good. My facial nerve was relaxed at the end of the operation – a good sign. I would probably be out of the hospital within 2-3 days. He instructed them to go to the 2^nd floor recovery room at 1:00 p.m. He needs to wait and see if there were more problems. (The above notes were taken by my friends)

I woke up in the recovery room approximately 12:00 p.m.; the pain in my head felt like I had been hit by a Mac Truck. I checked the right side of my face; I could smile; close my eyes and there were "NO SPASMS". I cannot explain how happy I was. I was on top of the world. So what, I have a sore head…that will go away eventually. And oh yes my caps were intact. I also had a huge bite mark on my upper lip. I was given a shot of morphine. I was asked several times my name, where I was and what date is it? I drank several glasses of water and ice chips to ensure I did not get a sore throat from the intubation. At 1:15 p.m. I was taken to GA5 ICU, the nurse hooked up an air pump to my stockings. They felt so good…just like a massage. I am still drinking water, sucking on ice chips and throat lozenges. I did not have a sore throat and I did not want one. My friends were allowed into the ICU to visit; to check how I was doing; as they were in constant contact with my husband and family. At 1:25 p.m. I was given codeine for the pain in my head. The nurse asked me to hold up my arms and legs, and I did so without any trouble. (The nurses will be taking my vitals every 2 hours until 2:00 a.m. and every 4 hours after that time). At 4:15 p.m. I was given an anti nausea pill and codeine (intravenously) for my headache. I was encouraged to uses the puffer machine for my lungs. By 5:00 p.m. I had raised the indicator on the puffer past the required level. At 6:24 p.m. Resident B. Hassouneh came in to see me. I had to raise my eyebrows, blow up my cheeks, stick my tongue out, raise my shoulders and turn my head side to side. He did not ask me to smile as that came naturally. The doctor noticed my right eyebrow was higher than my left…this is normal and should disappear in time. By now I am really hungry; I ate soup, milk, mixed vegetables and salmon. At 6:00 p.m. I was given Tylenol for my headache. It was very noisy and bright in ICU. Every two hours they would ask me; my name, where I was and what day it was? I am seven hours out of surgery and I have not slept as yet.

 

Wednesday, October 3, 2007 – 1 Day Post-Op:

I had two hours sleep last night. I was given Tylenol and codeine during the night for my headache. The staff in I.C.U. were wonderful caring individuals. I still have a headache; although it is not as bad as yesterday. My head hurts where the Mayfield head clamp was placed during my surgery. The nurses remarked how I did not sleep much. This morning they removed the catheter, oxygen and drip. Free of all the gadgets; I ate all my breakfast; now I have to go to the washroom. I sat on the side of the bed; my head felt as if it was going to fall off my shoulders. The nurse told me I tried to get up too quickly, to take it slowly. Within 10 minutes I walked to the washroom and called my husband on my cell phone. 9:00 a.m. I was given 2 Tylenol for my headache. The nurse told me I could have Tylenol every three hours, just ask. 9:10 a.m. a nurse came in to inquire if I would participate in an assessment swallowing study. At 9:25 a.m. Dr. Kaufmann came in; I questioned him about my surgery (my friends did not get all the facts straight), as I needed to know. My husband (in panic mode) was in Ontario waiting for his flight to Winnipeg. A bridging vein was coagulated and divided. He stretched one of the offending arteries that was severely compressed, padded each end of this particular artery with Teflon. There was an extra loop of vessel situated between the 7^th and 8^th cranial nerves. The 7th nerve was severely kinked and too close to the 8^th nerve, no room to do any adjusting there. There were several other blood vessels that he padded with Teflon. I do have some facial weakness and the right lower portion of my lip may always be numb. (due to the 14 years of Botox injections). I thanked Dr. Kaufmann for giving me back my smile. I am smiling from ear to ear, which I have not done in years. My headaches are not as severe now. There were no spasms when Dr. Kaufmann closed the incision, warned me to be prepared as they could come back and diminish over time. He told me when I return home; if I have any facial problems; go to my own doctor; Dr. Kaufmann would like to be updated of this at any time. Facial weakness could last 2 months as the nerve was badly compressed. I told him my headaches were not severe anymore, he recommended I take regular Tylenol as needed. Dr. Kaufmann told me I can get up and move now. I noticed that my right eye is not dry anymore; no more TearGel. 12:15 I tried to sleep, but that did not happen. Ate lunch and dressed into my own PJ’s. At 4:00 p.m. moved to A 518 just down the hall from ICU. My friends took me outside in a wheelchair to get some fresh air. 5:30 p.m. Resident B. Hassouneh came in to see me and check me over. I am now on Advil only, for my headache. I am really happy with that as I am only 1 day post-op. Dr. Kaufmann came in to see me at 6:00 p.m.; told me I could shower and wash my hair in the morning. Yes, I can hardly wait. I will be discharged tomorrow (Thursday, October 4, 2007). My data will be sent to my doctor, with a prescription for steroids in case I get facial paralysis.

 

Thursday, October 4, 2007 2 Days Post-Op:

I did not sleep much again last night. I was so excited that I could have a shower at 6:00 a.m. and wash my hair. It took me a long time to have my shower and wash my hair. I was almost afraid of hurting the incision. I felt human again. This is the first time I put on my mascara since my surgery; what a difference…NO SPASMS…and the mascara did not smear all over my cheek and eyelid. I exercised my neck constantly to ensure the muscles did not tense up. Dr. Kaufmann came in about 7:30 a.m. to check on how I was doing. I had to close my eyes, smile and turn my head from side to side. He told me again that the spasms could come back at any time. He discussed CSF Leak, Facial Paralysis, how I felt, how the headaches were. He did say that my lower lip area may always be numb. If I had any questions or concerns to call his pager number or call Janice. His office would contact me in 2 weeks, 2 months and again once a year after that. He looked at my stitches and said he could remove them; I said no, I would let them dissolve or have my family doctor take them out. He told me to massage the incision and the area around it with a mild cream, this would desensitize the area. He said I was ready to be discharged. I was extremely worried about developing a CSF leak or Bell’s Palsy; but remained positive. I questioned him on my left side HFS, he told me to see how it progresses, go to Dr. Kraft for Botox, if need be. I could make the decision for surgery as it progresses. He told me he would prepare my discharge papers and fill out a prescription for Tylenol # 3, if I needed them. It was not necessary for me to visit his office the next day. I was good to go home. I thanked him for everything he had done to make my life so much better. My husband and I left the hospital at 10:30 a.m.; stopped at Shoppers Drug Mart and back to the hotel to rest, of course I was not tired, I started to pack my suitcases for the drive home.

 

Saturday, October 6, 2007 – 4 Days Post-Op:

We left Winnipeg for our home in Ontario at 7:30 a.m. We had decided we would take a few days, so that I did not get tired. I must admit it is not that comfortable driving with a headache. We stayed in Thunder Bay, Ontario on Saturday night and Sault Ste. Marie, Ontario on Sunday night. There were times during the drive that I wished I had flown home. My small pillow did come in handy, to hold my head in place. I had a headache and my stitches were pulling. We arrived home on Monday, October 8, 2007 at 8:00 p.m.

 

Tuesday, October 9, 2007 – 1 Week Post-Op:

Prior to leaving for Winnipeg, I had made an appointment with my family doctor. She could not believe her eyes when she saw me. I was one week post-op and doing wonderful. She checked my incision and remarked "the incision is the sign of an excellent surgeon" We discussed my concerns about my risk of Bell’s Palsy; she recommended I take Advil every 6 hours until October 17, 2007.

 

Friday, October 12, 2007 – 10 Day's Post-Op:

I went to my family doctor and asked her to remove some of the stitches as they were itchy. I had already removed a couple of the loose ones myself. I drove an hour to my husbands work and had lunch. I went to my hairdresser and had my hair trimmed. Everyone keeps telling me to take it easy; that is a difficult thing for me to do.

 

 

Tuesday, October 16, 2007 – 2 Week's Post-Op:

I am happy today has arrived…I did not develop Bells Palsy which I was extremely worried about. I drove to King City, Ontario and met Gwen Cameron for lunch. I was feeling terrific. Every so often I get a slight headache. I am still Spasm Free on the MVD side; the left side I am still experiencing twitches under my eye and upper cheek area.

 

 

 

Friday, November 2, 2007 - 1 Month Post-Op:

I am feeling super. I am still Spasm Free. 100% of the feeling has returned to my lower lip area. The muscle strength in my right eye has increased. I never experienced any fatigue. The marks on my head from the Mayfield headclamp are still not fully healed. My headaches are gone. I notice sometimes when I bend down and stand up quickly I get a little light headed. I had to train myself to do it slowly. The incision site is completely healed; the scar is barely noticeable.

Through this journey, I only had headaches for a few weeks; controlled by Advil. I had no sore neck, no ringing in my ears, no fatigue, no infection, no Bells Palsy or CSF leak. I remained positive at all times. I was both physically, mentally and emotional prepared for a positive outcome.

I would like to thank all the members of the HFSA support group for being there for me; before, during and after surgery. The knowledge I have received from the group during the past 5 years could never be obtained from any doctor/physician. Personal experiences are history for other members. My goal in life is to give back to the members of the group what was given to me, SUPPORT and INFORMATION.

I have to thank Dr. A. Kaufmann; if it were not for him making the decision to be an expert in the field of MVD surgery, there would be many Canadians still suffering with this terrible demon. I knew going into surgery I was in the best possible hands with the most experienced MVD surgeon in Canada. Though my surgery was tedious for him, he performed my surgery like an expert. My risks were high due to the length of time I had HFS and prolonged use of Botox. His use of Intraoperative Monitoring was very important during my surgery; as there were several arteries and vessels which needed to be padded; my 7^th and 8^th nerve were too close to make any adjustment, without IOM; one could easily be missed. I came out of surgery and beat the odds; for which I am truly thankful. Dr. Kaufmann is not only a skilled surgeon and knowledgeable physician but also a very pleasant, warm and considerate person.

I thank God for everyday I am "SPASM FREE". I myself will take one day at a time; and be accepting if the spasms return. It is all part and parcel of this journey.

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For details of my Botox® use see my Personal Botox® Experience.

For details of my HFS experience leading up to my MVD see my Personal HFS History.

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Permission granted the HFSA to post MVD Diary on website.
June Walker, April 5, 2008

 

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