MVD Diary - Jan Griese

Surgery performed by:   Dr. Anthony Kaufmann
Surgical Location:         Health Sciences Centre Hosp., Winnipeg, Manitoba (Canada)
Surgery Date:                 February 06, 2007

Diary prepared by:         Jan Griese
Date diary finalized:       August 09, 2007

 

HISTORY

I suffered from HFS for about 20 years. I have had over 25 Botox treatments, which was a good Band-Aid for me. I was unaware that surgery was an option until I stumbled upon the Hemifacial Spasm Association (HFSA) group. Once I found out about it, I was thrilled to be accepted as a patient by Dr. Kaufmann. I saw a neurosurgeon in my hometown of Hamilton first, but was not comfortable with his lack of experience in this type of surgery.

 

Monday, February 5, 2007 – The Day Before:

 I flew into Winnipeg by myself yesterday and stayed at the Lennox Bell Lodge. My husband will meet me later in the week. It's a little sparse, but comfortable enough and very convenient once you manage to work yourself through the underground tunnels to get to the hospital. I was really glad I didn't have to venture outside because it was 48! I’m not sure what that is in Fahrenheit, but it’s COLD. I met with Dr. Kaufmann and the rest of the staff who were all very reassuring. Even though I've had HFS for over two decades and had at least 25 Botox procedures, Dr. Kaufmann felt I was a good candidate for MVD surgery. I was very relieved because this was a huge decision for me and I was very worried that maybe I had left it for too long!

 

Tuesday, February 6, 2007 - "MVD-Day":

The big day! I was happy that I was having my surgery first thing at 7:30 am. It gave me less time to worry and I was feeling a little anxious. The walk through the tunnels from my room to Admitting was a little rough, yet I was really happy that the big day was finally here! Once again, everyone put me at ease and things happened pretty quickly, so I really didn't have time to think about what I was doing.

I woke up in a step-down area with about 8-9 other patients. Beside me was another person from Ontario, Steven, who had made the journey to Winnipeg for MVD surgery as well. He had his surgery in the afternoon. By suppertime I was feeling pretty good. Ate a bit of chocolate pudding of all things (chocolate will never be the same for me) and that was pretty much the end. I was sick and developed a horrid headache. I had a sinus headache since I got to Winnipeg, maybe due to the cold, maybe the dryness of the hotel and hospital? Tylenol 3 wasn't even touching it. Cold compresses were my only minor relief. The nurses were so kind to me. They tried to keep me comfortable and even though they had to keep asking me the same questions (name, location and date) over and over again, they tried to do it in nice, soft voices, which was very considerate. My husband finally made it out to join me! I basically slept through the visit, but it was nice to have company.

 

Wednesday, February 7, 2007 - The Day After:

No change, still had a bad headache. I couldn't look at food all day. I knew I was sick because even the thought of coffee made me nauseous! There was an unfortunate lady beside me who belted out show tunes sporadically all night, but I believe she had a tumor or a head injury, so I tried really hard not to throw anything at her (forgive me for even thinking that!). She had a lovely voice but the timing was really bad! Oh, "NO SPASMS SO FAR", this makes me happy even though I still feel pretty nauseous and have a horrid headache.

I am told my incision looks great. I am getting medication for pain as well as nausea. I sleep most of the day, other then the nurses checking on me regularly (name, location and date). Once again, I am very grateful for the kindness shown to me by the nurses. I was so worried that they were going to try to make me get up, and I knew I couldn't, but they let me sleep. I woke up to find that a friend I met through the HFSA website had sent greetings and best wishes. Thank you Paula Hiltz from Halifax! That was so nice!

In the evening, Dr. Kaufmann sends me for a CT scan to see if there is a visible reason for the headaches. I appreciate that he is following up on this because I'm getting a little worried and I don't sleep much during the night. Steven, the other fellow from Ontario, gets to leave the hospital today! I'm happy for him, but must admit I wish I were heading for the hotel as well!

 

Thursday, February 8, 2007 - 2 Days Post-Op:

Good news, nothing scary showed up on the CT scan, I just have bad sinuses. I take some nasal spray and continue with the medications for pain. I feel a little better today because I can finally get up and walk to the washroom. Getting out of bed is a huge hurdle for me. I desperately wanted to have a shower and wash my hair but the nurse on duty wanted me to wait one more day! Drats! I was able to eat today and kept everything down so I knew I was getting better. I had a plane ticket home for Saturday and I really hoped to be on that plane. I still feel "NO SPASMS". I can't say enough about how approachable Dr. Kaufmann is. I was obsessed with reading everything I could find before having the surgery, but I still had lots of questions and he never rushed me at all.

 

Friday, February 9, 2007 - 3 Days Post-Op:

I wake up early, around 5:30 or 6:00 am. I have a nice hot shower and wash my hair and I feel 100% percent better today. By the time the Doctors make their rounds at 7:30 am, I have my bag packed and I'm dressed and just wait for the words "you can go"! I can't believe how great I feel. I call my husband at the hotel to wake him up. He's really happy I'm getting out and quickly grabs a cabs to the hospital to pick me up.

We have our last meeting with Dr. Kaufmann and he again goes over what to expect and basically advises me to go with how I feel as far as getting back to my normal lifestyle.

We go to the hotel near the airport (Viscount-Gort) which gives a discount to patients at the Winnipeg Health Science Hospital. I still have a mild headache so we really pretty much just stayed in and relaxed. We ordered dinner in and had a quiet last day in Winnipeg. We find out from the hotel shuttle driver that took us to the airport, that my husband could have asked for free shuttle service to the hospital for visits! The cab fare was around $10.00 each way so that's just a tip for anyone looking for a place to stay if they go to Winnipeg.

 

Saturday February 10, 2007 - 4 Days Post-Op:

Flight home was fine, with no problems at all. Still no spasms and keeping my fingers crossed. Thank you Dr. Kaufmann!


 

March 26, 2007 - 7 Weeks Post-Op:

No spasms at all since I woke up from surgery, and I feel great! I would say I am one of the lucky ones for sure. I’m back to work and life has returned to normal.

 

August 9, 2007 - 6 Months Post-Op:

I would say I am 98% spasm free! If I get extremely fatigued I get the odd little twitch but that’s about it. For some reason red wine also triggers a tiny spasm which I feel, but no one else sees. I occasionally wake up with a headache, which only started happening since the surgery, but otherwise feel great!

Thank you everyone who sent me best wishes and especially to Jack, for bringing us all together. Without you I know I would have not found out about this surgery or had the support I needed to go through with it. I also want to thank everyone who has posted MVD Diaries or information on their experiences with surgery and Botox. Until a year ago, I honestly thought I just had some strange thing wrong with my face. I had no idea that there was anyone else or, that there was such a thing as MVD surgery. Finding this site was truly life altering for me.

Good luck to you all!