MVD Diary - Maddy Benson

Surgery performed by:    Dr. Peter J. Jannetta
Surgical Location:          Allegheny General Hospital, Pittsburgh, PA (USA)
Surgery Date:                 October 04, 2006

Diary prepared by:         Maddy Benson
Date diary finalized:       October 31, 2007

 

My Story

After a year of procrastinating, I am finally gathering my computer notes and writing my diary. The reason this has taken me so long is that I had such an uneventful surgical experience, my trip to Pittsburgh was far more enjoyable then I had expected it to be, my recovery went well, and I just wanted the happy ending of becoming "spasm free". Although the happy ending hasn't happened as yet, I want to share my story with others who may be contemplating surgery.

Around 2002 I first developed a slight tug in my upper lip followed by an eye that was way too ’big’ after staring at a computer screen for long periods of time. At first I thought it was just eyestrain. Not long after that, I started having twitching that eventually turned to spasms and finally constant tightness in my cheek and a whacking in my ear. By way of the Internet, I found the HFSA site. In the list of members, I found another Vermonter whom I E-mailed. Homer Wesolowski wrote back to me with the best advice he could have given me..... 'So, you have HFS, it's not a disease and it isn't going to kill you. You can live with it, choose to have Botox or have a surgical procedure to fix it'. It was such good advice and it enabled me to move forward knowing that surgery was my choice when ready.

In the beginning of 2006, I decided it was time. It was beginning to be too troublesome and stressful. For me, the risk of surgery was finally now worth the chance of becoming spasm free. I decided to make the call to Dr. Jannetta’s office. Making that initial phone call and commitment was the most difficult part for me. When I finally did make the call, I was connected to the voice mail of Ann Wilkinson, the Nurse Coordinator in Dr. Jannetta's office. The next day, while sitting at my desk working, the phone rang and Allegheny General came up on my caller ID. My stomach lurched as I answered. "Hi Maddy, this is Ann in Dr. Jannetta’s office...". Ann was real, Pittsburgh was real, and surgery in my future was now real. I can't say enough about all Ann did for me in making me feel connected and comfortable. I could go on and on, but will just say, she is great. My insurance, the needed pre-op tests, information about places to stay and directions to the hospital, Ann put it all together for me.

The day I received my surgical date, I realized I was giddy and excited. I thought I would be a nervous wreck. Throughout the whole process, from the beginning to the end, I was so surprisingly relaxed and ready that it was unbelievable.

I busied myself during the next several weeks catching up on my workload and tying up loose ends. We live approximately 600 miles (12 hours) from Pittsburgh and decided to drive rather than fly. In addition to clothes and the usual, a benefit of driving allowed me to pack comfort items such as framed photos of our kids, candles, laptop, cards, reading material, our own pillows and the best thing was a down filled mattress pad which we threw on our hotel bed. Our home bed is just awesome and nothing traveling has ever compared. I am a bit like the princess and the pea when it comes to beds!

The day before we left, we attended a first birthday party for our youngest grandson, and both my grown boys (not very demonstrative) gave me big, emotional, choked up hugs and told me they loved me. I jokingly remarked to my husband when we left, "...Isn’t that something, I have to have "brain surgery" to have that priceless moment with my kids". The moment is bookmarked in my heart forever.

 

Sunday, October 01, 2006 - Date of Departure:

 After a big breakfast, my husband, Roy, and I hit the road for Pennsylvania. The foliage was beautiful and we enjoyed our drive. As soon as we located the Quality Suites on Monday, we found our room and turned it quickly into "home" including putting the candles in the fireplace. Quality Suites is very accommodating, the staff very helpful and we enjoyed our stay there. We highly recommend it and it ended up around $75 a day. We made a practice run to the hospital (did I mention we are country folks?), found a store to stock the kitchen, sat in the sun and went out to dinner.

Although I never announced on the site that I was having surgery (superstitious perhaps, it‘s my father‘s gift to me) I was aware that a woman from Michigan was scheduled for the same date as I. When I was going into the lobby at Quality Suites I passed a woman in the doorway that I immediately knew had HFS. I got a better look at her husband as he held the door for me.

 

Tuesday, October 03, 2006 - Appointment with Surgeon & Pre-surgery Testing:

Today we went to the hospital for the last test and my appointment with Dr. Jannetta. In the waiting room, I recognized the man from the hotel lobby. We introduced ourselves to him with an explanation of how we knew who he was, and soon we got to meet his wife. When I think back on our adventure, it wouldn‘t have been the same without Carol and Wade Davis. We became immediate friends and had such enjoyable moments. To share this whole experience and support each other was very special.

My husband and I had our meeting with Dr. Jannetta and Dr. Sekula. We had few questions due to the knowledge gathered over the years from this site. Dr. Jannetta went over the usual basics. I knew the risks and that there were no guarantees. We chatted mostly about New England and he told us some stories of his family vacationing in NH. We loved him as everyone does.

Before leaving the hospital, I was asked if I would be willing to change my surgery to Wednesday as Thursday was getting overbooked. It took me by surprise and unnerved me a bit but I agree and I am good. We went back to our rooms, sat in the sun awhile, figured out a light dinner and chatted with Carol and Wade. They have great faith and surely more pull then I, so very glad they were on my team and saying prayers for me.

 

Wednesday, October 04, 2006 - "MVD-Day":

The big day. Up early, beating the traffic, and we arrived at the hospital in plenty of time. We had to wait and I was a little nervous, but nothing like I would have thought. We finally went to the surgical "lineup" area. The nurse in charge was all confused and hyper, but I'm good. They do the necessary weighing and blood pressure and I receive my gown. Roy is given my clothes and glasses which was dreadful for me, as I'm very nearsighted and a contact lens wearer. I hate not seeing.

At this point I am still doing good. While waiting, my husband read my chart and remarked that I have put on a little weight! Thanks Honey, and yes, I am sure I have. Then he told me 247 lbs. Now, I am NOT good. He immediately leaves to find the nurse, as this is NOT my chart.

Although it felt like a long wait, it wasn’t. When they finally came to wheel me to the surgical unit, I bookmarked another moment in my heart. My husband lost his sturdy demeanor and I realized just how hard this was on him. We are here alone, and if anything should go wrong…..

The surgery prep area was busy, I received my IV lines and just waited. Never was I anymore than just jittery. Being nearsighted, I was able to watch the wall clock by making tiny little peepholes through my fists and holding them to my eyes like binoculars. This is the way I amused myself from here on out until I got my glasses back. If I got a bit too worried, I just told myself, soon I will be asleep and immediately I will wake up and it will be over. I had the easy part. And that is just the way it happened. When they finally wheeled me to the surgical room, I was asleep before my bed stopped moving.

In what seemed like the very next second, I was awake, alert, my bed was again moving and Drs. Jannetta and Sekula were walking along beside it and talking to me. I asked what time it was and it was 1:30 PM. Wow, that was late…. Dr. Jannetta explained that my "surgery was complicated, the artery was wrapped around my facial nerve, they padded several areas and the monitor still showed activity, so they looked for a long time before finding a compression well hidden near my brainstem. After padding that, the monitor was quiet and stayed quiet for 10 minutes so they were able to close".

Dr Jannetta was off to talk to my husband as he was afraid he must be very worried. It had been about 6 hours since he had last seen me. Roy later told me that he couldn’t get any information about what was going on during all that time from anyone. It was a long, long wait for him and he was worn out.

The recovery room was very bright and noisy! I would have preferred dim lights and quiet. I had very little nausea and some discomfort that seemed to come from the clamp "wound" on my forehead. If I mentioned feeling a bit yucky, they would throw a cotton ball with a bit of alcohol on it in my oxygen mask and it would pass. My stressed out husband finally got to poke his head in to see me in recovery for a few seconds then they scooted him back out. At 5:30 PM, I was taken to a room. Roy spent the night with me for which I am so grateful and would highly, highly recommend. The next day, he hung out with me, took care of me and watched me sleep a lot. By early evening, I felt pretty well and sent him back to our hotel for a long shower and good night's sleep. He sure earned it!!

The only glitch in this whole experience was the hospital stay. I may have just drawn the short straw, but when I say someone should stay it is because you may not get any care once back to a room. I’m not going to elaborate on it but it was poor and hopefully not representative of the hospital’s usual quality of care. It was tremendously lacking! And again, have someone with you if you possibly, possibly can. My husband will always be my hero for sleeping on the couch and staying with me until I could fend for myself.

 

Friday, October 06, 2006, Two Days Post-op:

Carol (surgery on Thursday) and I both headed back to the Quality Suites. Both Carol and I snoozed a lot over the weekend. We managed to get some fresh air and hung out in the picnic area in our jams with the warm sun on our faces. Chats and phone calls back and forth, comparing notes and naps passed the time.

 

Monday, October 09, 2006 - Five Days Post-Op:

We took a car trip around Pittsburgh with Carol & Wade. Another sunny, beautiful day. The guys, who both love hunting, took a walk through a sporting goods store, and Carol and I hung out in the sun and chatted. We had lunch together then went back to Quality Suites where Kathy Lyles and her husband Will, from Texas, were to arrive in the late afternoon for her surgery on the 12th. Kathy and I have e-mailed for several years comparing symptoms and frustrations. We both decided we needed surgery around the same time. Kathy was able to schedule her trip so that we could have a chance to meet which was very special. We all had a good visit and Carol and I shared our surgical experiences with Kathy. As we were all planning to leave the next morning, we cleaned out our kitchens and delivered some food and drinks to Kathy and Will’s suite. We wished her the best, exchanged hugs and headed back to pack and spend our last night.


 

Tuesday, October 10, 2006 - Six Days Post-Op & Day of Departure for Home:

 We pick up our final items, throw them in the car, grab breakfast at the Quality Suites and leave for our final visit with Dr. Jannetta. We were all excited to head back home. Carol and I are calling each other from the car to see how we are doing with traffic. They beat us. It was here that we met Mary Ann Glasco from Florida, wished her good luck and asked her to keep in touch (she does!) (See Carol Davis’ diary for photos). After our appointments with hugs and photos with Dr. Jannetta, we walked back to the parking garage and said good-byes with promises to keep in touch and hopes of getting together again, which we are talking about for next spring in Florida.

We left Pittsburgh at about 10:00 AM. Once again, the sun is bright and the foliage just beautiful. My husband made me a comfy bed in the back of our jeep. The down mattress pad was folded in two and I had my own pillow. The trip went so well with riding a couple hours, stopping to walk a bit then sleeping a couple hours. We were less than 2 hours from home when I got pretty tired, but I really wanted my bed!! We stopped for some food, and then pushed on. It was really good to crawl into our own bed again!

 

Update as of 10/04/07:

 About 3 weeks post-op I announced that I was spasm free. Shortly after the announcement, I had the scary “facial droop”. It resolved very quickly and was back to normal within 3 weeks. However, when the droop resolved, the spasms came back. It has been a very tough year, the constant monitoring of the twitches and spasms and the many, many ups and downs. When the spasms returned slowly and different, I thought it would all be okay, but it seems I am going the "wrong" way here. Hope is a wonderful thing, but there comes a time when it is better to face facts, accept the situation and move on. At 11 months, I stopped believing this was ever going to improve without another surgery. When it gets to be too much, we will talk again about another surgery. I most likely will have to do this again some day.