The eye doctor wanted to start Botox treatments right away. He offered no real explanation about what the condition involved…his only offering was to begin Botox injections to “manage” it. I scheduled an appointment, but as soon as I got home, I cancelled it. I generally try to stay away from medications unless they are specifically prescribed to “cure” an infection. It concerned me to be doing something that I didn’t really understand yet. I felt like I needed to do a lot of research to learn as much as I could about hemifacial spasms before jumping into any treatment routine. Thank goodness for the internet. Without it, I would never have found this group and been able to educate myself as to what I had and what treatment options were available.

I have to admit that my first visit to the HFSA website did more to unnerve me, than it did to calm and comfort me! It wasn’t until I had read a great deal that I understood HFS and realized that it progresses over time. I was unaware that the “little twitch” would eventually involve the whole side of my face. When I found the HFSA website I had hoped to learn about some non-invasive therapy that would “cure” me. When I read that the only real cure was brain surgery, I was shaken…so shaken that I got tears in my eyes, logged off the site, and stayed away from it for a long while! Meanwhile, the spasms got worse and I eventually decided to try to learn more about what I could do to regain control of my face.

When I went back to the HFSA site in the fall of 2005, I knew that I was ready to really take this thing on…to learn as much as I could so that I could make my own informed decision as to what would be best for me. For months I read every posting religiously. The kindness and generosity of all of those who have shared their own experiences has been an incredible help to me. I will always feel grateful to this group for making this whole process less frightening…and making me feel less alone in dealing with it.

Spring 2006:

I spent months reading every post, every day. I read and reread every MVD diary until I felt a lot more comfortable with the whole notion of “brain surgery”. I began corresponding with many of the HFSA members who shared their own personal experiences and made me see that the surgery was the answer for me. I’ve read it so many times and I know it to be true…”You’ll know when it is the right time”…and, for me, it was.

I went to my family physician, got a referral to a local neurologist, and another referral to a neurosurgeon (Dr. Zager) who is about an hour away from where I live. I would never have found this doctor had it not been for two wonderful (HFSA) women who shared the experiences they had had with him with me. Unlike some of the other surgeons, Dr. Zager only required an MRI with and without contrast as a preliminary test before seeing me. I had these done in Allentown, PA where I live. According to the radiologist here, he didn’t see anything on the films that showed a compression.

 

June 21, 2006 - MVD Consultation:

My husband, Todd, and I drove from Allentown to Philadelphia to meet Dr. Zager. We were both impressed with his background, his experience and his patience in answering all the many questions I had. We were especially appreciative of the attention he paid to all the details of my MRI. He asked if he could have a radiologist at Penn look at my films. He said that he suspected that something he saw could be the place that was causing me problems. After consulting with this other doctor, he confirmed to me what he had suspected. (I think that it is very important to have doctors who are familiar with HFS do the testing and interpret the results. Because this is not a common condition, there are many physicians who are unfamiliar with what they should be looking for.)

After my meeting with Dr. Zager, I did spend about a week mulling over my decision to go for the surgery. Then, I realized that I was ready to do whatever I had to, to rid my face of these uncontrollable spasms. So, I called and scheduled my surgery for August 21st.

 

August 8, 2006:

I had to return to the hospital for a preadmission appointment. I met with the nurse practitioner who gave me a folder of instructions and answered some additional questions I had. Then, I had an EKG and had some blood work done.

 

August 20, 2006 - The Day Before:

Todd and I left Allentown to drive into Philadelphia. We had arranged to meet my son and daughter-in-law (who live in Philly) for an early dinner. After dinner, my other son (who lives in Allentown) surprised me with a call to say that he had arranged a couple of days off work and was coming to see me before the early morning surgery. He stayed with my son and daughter-in-law for two nights so he could be close by.

I had made a reservation for my husband and me to stay that night at the Penn Tower. Since I had to be at the admissions department by 5:45 am, it was a great arrangement for us. The hotel adjoins the hospital with a walkway so it was easy for us…no traffic or parking issues to deal with.

 

Monday, August 21, 2006 – "MVD-Day":

Todd and I arrived at the admissions desk at 5:45 am. I was very thankful for the early scheduling because I hardly slept the night before and couldn’t imagine waiting around all day for a later surgery. We were promptly processed through (it only took about 15 minutes) and told to go to the 4th floor OR waiting area. Within another 15 minutes, my name was called. At this point, it was 6:15 am, I had to say goodbye to my husband and go to where they would prep me for my MVD. Unfortunately, once I left my husband, I had to wait for two hours until they wheeled me into the OR. They weren't ready for me until 8:15 am, the longest 2 hours I’ve ever experienced! It was entirely too much time to think, but once I got there, it all went very quickly. About all I remember was the anesthesiologist telling me to breathe into the mask. The next thing, I knew I was waking up in the recovery room. It was about 12:20 pm. As soon as I began to really awaken, I was thrilled to realize that my spasms seemed to be completely gone! I was experiencing some pretty serious head pain though, so the nurse in recovery administered small doses of morphine to try to help manage it. I was extremely thirsty, but they said it was too soon to drink anything. Instead, I was able to have some ice chips periodically. At 1:00 pm my husband was allowed to visit me briefly.

(Todd later told me that the whole MVD procedure was over in less than 2 1/2 hours. Dr. Zager called him with the news that all had gone well. He found a compression of the vertebral artery at the pons, where the nerves exit the brain stem, and did the necessary padding.)

At about 2:30 pm I was moved to the Neurological ICU. Todd joined me there by 3pm. I was very thirsty and my head ached quite a bit. At 3:15 pm I was given 1 mg of morphine and 650 mg of Tylenol and I was allowed to have a glass of cranberry juice, which tasted incredibly delicious. The pain subsided for a bit, but returned about 4:45 pm. I was offered another shot of morphine, but I decided to try an ice pack and the special pillow that several HFSA members had recommended that I bring from home. It helped a bit.

At about this time, a neurologist came in to check on me. She looked at my eyes, checked to see if I could hear on my HFS side, and she had me lift my arms and legs. After she left, my sons came to visit me. A short time later, my daughter-in-law also came by after work. It was wonderful to be surrounded by my husband, sons, and daughter-in-law. I started to feel much better and thought the worst was behind me. The nurses in the ICU were wonderful. Because cell phones weren’t allowed there (and no phones were in the rooms), they brought a phone in and Todd was able to use a phone card so I could speak with my daughter in Arizona.

Dr. Zager came by to see me. After checking me out, he reiterated that the surgery had gone very well and told me that he’d see me in the morning. At 7:30 pm a nurse gave me more Tylenol. Unfortunately, the neck and head pain I was experiencing had not subsided by 8:30 so she gave me some additional morphine. By 9:15 pm my family left the hospital. My head pain continued to make me uncomfortable.

I had no appetite and ate no solid foods on this day, but I did drink quite a bit of juice throughout the late afternoon and evening.

Medications: Zantac (to prevent ulcers), Steroids (to reduce swelling), heparin (an anticoagulant), insulin (to lower blood sugar raised by the steroids), Tylenol with codeine, and morphine.

 

Tuesday, August 22, 2006 – The Day After:

It was very difficult to sleep last night because I continued to have a significant amount of head pain. I only slept in short spurts and by 4 am I was up for good. When breakfast arrived at 8:30 am, I was only able to manage a couple of spoons of oatmeal.

At 10:00 am, I was taken for a CAT scan. When I arrived back in my room, the catheter was removed. At noon, Dr. Zager stopped by to say that everything looked fine, but he was still waiting for the results of the scan.

I took my first walk after the surgery today. Went around the ICU three times.

Todd spent the day with me and my son and daughter-in-law came to see me in the evening.

I was supposed to be moved out of the ICU today, but there were no beds available, so I spent an extra day in it.

Dinner wasn’t much more appealing than breakfast today. I could only eat a few canned peaches. My son noticed that I wasn’t eating and asked me what I felt like having. I told him that I would love to have an Italian ice and asked if he could bring it by on Wednesday when he came to visit. When he left the hospital, he surprised me by coming right back with the Italian ice. It that was so much more appealing than anything on the tray that the hospital had offered!

By 9:00 pm my headache was throbbing. I had some Tylenol with codeine and finally feel asleep…Unfortunately, it was another difficult night. I couldn’t seem to fall into a pattern of sleeping for more than an hour at a time. This was partially due to all of the head pain, but it was also a result of the degree of care you receive in ICU. The nurses are very attentive and it seemed like someone was constantly checking my blood pressure, temperature, giving me meds, and shots and running little tests on me. Tuesday was definitely worse than the day of my surgery.

 

Wednesday, August 23, 2006 – 2 Days Post-Op:

Today I had a bit of an appetite for the first time since my MVD. I was able to eat some eggs and juice. I continued to take the Tylenol with codeine for my headache.

By noon, my head finally began to feel a bit better. I ate some mashed potatoes at lunchtime.

After lunch, the nurse removed my bandages. This reduced some of the pressure I was feeling around my head. At this point, Dr. Zager came in to check on me. He said that everything looked good and they would be moving me to a regular room. I was fortunate that they gave me a private room. It was much quieter and less hectic than it had been in the ICU.

I got to take a shower and wash my hair today, which felt great!

My son spent the afternoon with me. It was great to have him there. My husband came from work at 4, and my daughter-in-law arrived shortly after that. I was able to eat some of my dinner, which actually tasted pretty good. It was a much better day today.

 

Thursday, August 24, 2006 – 3 Days Post-Op:

Yea! I get to go home today. I am so excited about sleeping in my own bed back at my own house where it will be much more peaceful.

I ate breakfast, went to physical therapy, and returned to my room to find my husband waiting for me to check out of the hospital. It took a while to sign all the papers, but we were able to leave by about noon. Someone at the hospital arranged to have a visiting nurse look in on me for the next couple of weeks at home. My blood pressure at the hospital was consistently higher than it usually is, so it seemed like a good idea to have someone to monitor things.

 

Friday, August 25, 2006 – 4 Days Post-Op:

It was wonderful to be home again. I had a decent night sleep for the first time since my surgery. I still woke up many times, but the peace and quiet of home was very soothing. For some reason, the only difficulty I’d had during the night was that I awoke around 3 am very sweaty. I changed my pajama top and was able to drift off back to sleep.

In the morning, my husband was in the bathroom getting ready to go into work to check on things, since he’d missed so much time there this week. I asked him to stay in the room with me while I took a shower. I had taken a shower on Wednesday at the hospital without a problem. After a short time in the shower, I felt a bit light headed. I immediately turned off the water and told him I was a little dizzy. The next thing I remember was that I was lying on the bathroom floor with my husband yelling my name, trying to revive me. He said that as soon as I told him I felt dizzy, he immediately opened the door of the shower, but I went down so quickly that he couldn’t grab a hold of me. I think that this whole thing was much worse for him than it was for me. He’s a pretty unflappable person, but I do remember him being very upset when I came to. The only thing I was concerned about was endangering my recovery which seemed to be progressing pretty well at that point. My husband called my neurosurgeon’s office. At this point he was saying that he thought we may have to drive back to Philadelphia to have him take a look at me. I SO didn’t want to have to do that! Thank goodness, after asking a few questions, they assured him that it sounded like all was fine. Their only real warning was that he awaken me if I seemed to fall asleep for more that a couple of hours for the next several hours. He decided to spend the day at home with me...just to be safe.

 

Saturday, August 26, 2006 – 5 Days Post-Op:

A visiting nurse here in Allentown came to see me. When she took my blood pressure, I felt like we had an answer as to why I had fainted yesterday. My blood pressure had been consistently high (143/85) the entire time I’d been in the hospital, but now it has gone in the other direction and is quite low (100/60). She was very helpful. If anyone has an opportunity to take advantage of this service, I would highly recommend it.

 

Friday, September 1, 2006 – 11 Days Post-Op:

Today, my husband and I went to Dr. Zager’s office to meet with his nurse practitioner to have my stitches removed. She also took my blood pressure which is finally back to 120/70, my normal reading. Yea! I really feel like I’m returning to my pre MVD status, but now I’m "SPASM FREE"!!!

 

Monday, September 4, 2006 – 2 Weeks Post-Op:

I feel like this past week has been my turn-around in my recovery. My headaches are definitely less severe and, as a result, much less bothersome. The only real residual discomfort I have is the feeling of pressure, or ear-fullness, I’ve read about in other MVD diaries. It isn’t terribly painful, but it certainly is noticeable. I am able to do everything for myself, but I’m doing it much slower that my usual pace.

 

Wednesday, September 20, 2006 – 4 Weeks & 2 Days Post Op:

Today was my one month follow up appointment with Dr. Zager. Still no spasms and I feel like things are returning to “normal”!!!

 

Thursday, September 21, 2006 – 4 Weeks & 3 Days Post Op:

I returned to work today. I work in a preschool with toddlers. It is a very busy classroom and it is pretty demanding physically or I probably would have returned to work a bit sooner.

 

Friday, September 22, 2006 – 4 Weeks & 4 Days Post Op:

After work today I went grocery shopping. While in the store, my eye began to twitch pretty consistently for about 20 minutes. IT FREAKED ME OUT! Especially, since I had had an absolutely calm face since I awoke from my surgery. I tried to relax and after a bit, it did go away.

 

Monday, September 25, 2006 – 5 Weeks Post Op:

I am so happy because I finally feel totally and completely like myself again. After my little scare at the store on Friday, I had no further problem with any movement around my eye. Making everything even better, I felt like the fullness in my ear totally cleared up over the weekend making my head feel much clearer.

 

December 2006:

I feel blessed to continue to be totally spasm free. My only post op problem is related to my incision site. It seems that the plate that was placed over the surgical area shifted the tiniest bit and now there is a very tender area beside it. I have an appointment to see Dr. Zager next month to have him take a look at it.

 

January 2007:

Dr. Zager took a look at my head and said that what I am feeling is a nerve that had risen to the surface of my scalp. He said that it isn’t life threatening (not a tumor, which I was getting a bit concerned about) and other than additional surgery (no thanks!) it was something that I could just learn to live with. Unless I accidentally put any pressure on it, it really isn’t painful for me.

 

July, 2007:

Recently, I was thinking about my one year anniversary approaching. I realized that it was way beyond the time I had expected to send in my diary and I needed to get all my notes together so I could complete it and send it in to Jack.

At this point in my life, I am feeling happy, grateful, and extremely lucky that HFS is no longer dominating my life. I am grateful beyond words to everyone on the HFSA website who has guided me through this difficult journey.

My blessings to all of you.

---

Permission granted the HFSA to post MVD Diary on website.
Sherrie Becker, August 08, 2007

 

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