MVD Diary - Sonia Moore
Preface:
I am a 42-year-old mother of two who has been suffering with Hemifacial Spasm for the past two years. I first noticed the spasms exactly two years ago, almost immediately after the birth of my youngest child. Initially I thought that I was suffering from dental problems because I had neglected to have a tooth pulled and a root canal. So I decided to have the dental work done, hoping it would cure my problem. Alas, to my dismay, there was no change with the problem. So one night I went to a walk-in clinic and the doctor there diagnosed me with Trigeminal Neuralgia and gave me medicine for it.
After that my family and I went on vacation in East Texas for the Thanksgiving holiday and I noticed no change with the spasms despite the medication. So when we returned to West Texas I went to my primary care physician and she recommended I go see a neurologist. When I saw the neurologist he asked if I was suffering with any pain and I told him no. He then told me that I had been prescribed the wrong medication because it wasn’t the fifth nerve that was affected, it was the seventh nerve. He then proceeded to observe me with an eagle eye, which really made the twitches worse and diagnosed me with Hemifacial Spasm. He initially told me that the only cure is brain surgery, which I immediately decided I wanted no parts of and he said that he could help me with Botox injections. After a few rounds of the injections, I knew they weren’t for me. My face looked as if I had suffered from a stroke. The Botox worked well enough but I couldn’t see myself going back every three months for injections. I think the turning point for me was when I was in my sister-in-law’s wedding last December and saw the photos of myself and was horrified at my facial expressions. I decided I would never take another photo again if I had to look like that and, I decided to do something about it. So I did some homework and discovered the Hemifacial Spasm Association and found others who had suffered like I was and I found out about MVD and decided to pursue the operation even though I had initially discounted the idea of brain surgery. I had had enough of the spasms as they were controlling my life. When I mentioned it to my neurologist he recommended against it but I decided to go for it anyway. So I met with a neurosurgeon where I live but I wasn’t comfortable with him as he had only done about 20 MVD's in his entire career and I wanted someone who had more experience so decided to try to get approved to go see Dr. Jannetta. Once my insurance company approved it, everything was in motion and there was no turning back!
Monday September 24, 2007 - Date of Departure, Three Days Before MVD:
I didn’t get much sleep last night, which really isn’t much of a surprise. It was difficult getting my little ones to sleep as well. Although my 2-year-old, Ciara, went to sleep before my gregarious 6-year-old son, Rodney D., every time I looked up he was edging out of the bedroom. I had explained to Rodney D. weeks in advance that Mommy and Daddy were going to Pittsburgh so that Mommy could get her eye fixed. He promised me that he would take care of his little sister. I know that they will be fine with their grandparents but I can’t help but worry, especially about my little one who would wonder where Mommy and Daddy had gone. I just hope everything goes according to plan and we only have to stay a week. Surprisingly I’m not afraid, not even nervous. I guess it’s just because of all of the people I have praying for me and the wonderful people in the HFSA who have helped prepare me for this journey. Our flight from Lubbock, TX to Dallas, TX was bright and early and we left the kiddos at their grandparents and headed for a 7:10 a.m. departure from Lubbock to Dallas/Ft. Worth, TX. We barely had time to make our connecting flight to Pittsburgh, PA. When they announced boarding for the plane to Pittsburgh I couldn’t resist a quick cheer saying "Pittsburgh – yay!!" My husband looked at me like I was crazy. I’m actually more concerned about him than I am about me because he has really worried. And to be honest, wasn’t particularly thrilled about me having brain surgery. Actually, none of my friends or family was too excited about me having the dreaded brain surgery. But once they all realized I was serious and had conducted the research on the procedure and Dr. Jannetta, they were resigned to the fact that I was actually going through with it. They all knew how stubborn I could be and once I had made up my mind to do it there was no going back. The problem is that they don’t understand how the spasms affect me physically and mentally. I am drained all the time and don’t enjoy smiling or looking at people anymore, which goes against everything in my personality. I just want to return to normal and be able to smile again and have pictgures taken of me without cringing. I know that I’m taking a gamble. It’s costing a lot of money, time and effort to get here and I know I run the risk of having the spasms not being stopped. But I figure if one is going to make such a gamble, you might as well go with the best and, by all accounts, Dr. Jannetta is the very best. I’m just blessed that my insurance company approved me having the surgery and to have Dr. Jannetta perform it. For the first time ever I want a doctor to open me up and find something. Right now I feel so confident that this is the right decision for me that I just know my face will be restored to normal. So far the worst part of it has been me having to leave my little ones behind, but at least they have one another. Amazingly, right now the spasms are subsiding and I wonder if they will perform for Dr. Jannetta. I really hope so. I find myself scrunching up my face to make them start just to reconfirm why we are taking this trip that has caused such distress for my parents, husband, family and friends. I just pray the surgery is successful because I’ve been put under a microscope (in more ways than one) and if this fails, it will seem like a total waste of time, effort and money. So, Dr. Jannetta, I’m counting on God to help you fix my smile! The plane is departing. Pittsburgh here we come!
Tuesday September 25, 2007 - Consultation & Final Pre-op Testing, Two days before MVD:
It was another night of very little sleep. I had an 8:30 a.m. appointment to meet the famous Dr. Jannetta and at 4 a.m. I woke up and tossed and turned until our 7 a.m. wakeup call. We made our way to Dr. Jannetta’s office and after filling out all of the usual papers, I was called back. We first met Ann, Dr. Jannetta’s nurse, who was so kind and had answered a lot of my questions via e-mail. Then we met Dr. Sekula, who was very kind and answered a ton of questions for me. My main concern was "Have you ever opened someone up and found nothing?" His resolute answer was "No." My biggest fear was that we had made the trip, spent our money, time and effort and then they would find nothing. I felt comfortable with his conviction. It really makes a difference when you talk to someone who really knows what they are talking about. The doctor was patient and answered all of my questions and explained everything in such a way to me that I felt so comfortable that I had made the right decision to come to Pittsburgh. Later I met Dr. Jannetta, who I could instantly understand why so many people found him warm and engaging. He was extremely personable and such a wonderful person. He was taller than I expected and he was extremely warm, funny and there was no doubt that he knew what he was talking about. I felt so at peace with my decision to come here. My husband also seemed to enjoy meeting Dr. Jannetta. I also asked Dr. Jannetta the question "Have you ever opened someone up and found nothing?" and he gave me the same answer as Dr. Sekula, so I was sure they would find the offending artery or nerve. After that meeting I had to go for a hearing test. I found out that I had some minor hearing loss but not enough to worry about. I later had a test to determine the spread of the spasms with a doctor who cracked me up with his hilarious sense of humor although I hated the test itself. Basically it was where I was shocked and had a needle stuck in my face in an effort to get the spasms to start and wouldn’t you know it they didn’t start until he removed the needle? It was maddening because I thought I would have had tons of spasms with that needle stuck in me, but uh uh…didn’t happen. After that we were clear to go back to the hotel and then I was able to sleep. I know I made the right decision!
Wednesday September 26, 2007 - The Day Before MVD:
I found out my surgery is scheduled for 7 a.m. tomorrow and we have to be at the hospital at 5 a.m. The good thing about being on the schedule that early is that I don’t have time to get nervous. I called and talked to my 6-year-old son and told him that Mommy was going to have surgery tomorrow. He was eager to tell me all about his day. Fortunately he had another good day and so did his baby sister. I miss my children but so far the time away hasn’t been unbearable. My mother-in-law has been awesome and keeps me up to date on everything with my little ones. I’m so glad they have each other. Today my husband and I picked up my prescriptions for pain, nausea and to help me sleep. The Lunesta cost more than the other medications combined, but I wanted to have them on hand just in case I needed them. Tonight the spasms have returned with a vengeance. It’s almost as if they know that the time has come to try to get rid of them for good. I’m eating an early meal and will turn in shortly as I have a 4 a.m. wakeup call. It won’t be long now. I just hope I can get a little bit of sleep, which is highly unlikely. I’m ready to get the show on the road!
Thursday, September 27, 2007 - "MVD Day":
My husband, Rodney, and I got up at 4 a.m. and were at the hospital by 5 a.m. Every thing went like clockwork. I was wheeled to the holding area at 6 a.m. I met the nicest lady named Angel. I told her it was good to have an Angel with you before surgery. I saw Dr. Jannetta who gave me a big hug and marked my neck with a P.J., his initials. He was so comforting and I never was afraid of having the surgery. Later Dr. Sekula came in and was equally reassuring. I watched a long line of patients being wheeled into the holding area. It was clear that the staff knew what they were doing. I met the anesthesiologist and soon was wheeled into OR-7. That’s the last thing I remember until waking up in recovery. I was in recovery for several hours and finally was moved to a room where Rodney met me. He seemed happy to see me. I know he had to have been extremely worried about the surgery and since he was the only one there, he really didn’t have the support of the rest of our family physically being there with him. He had met another man whose wife was also having surgery with Dr. Jannetta. She was suffering from Trigeminal Neuralgia and had her surgery scheduled at the same time as mine, which kind of freaked me out that Dr. Jannetta could be working on two patients doing brain surgery at the same time. Anyway, I’m glad I found that out after the surgery rather than before the surgery. Following surgery Dr. Sekula told me they had located the artery pressing up against the nerve and they moved it. When I was in the room we began the process of no rest so vitals could be checked around the clock. I was walking fine but not crazy about the food.
Friday, September 28, 2007 - The Day After:
The next day Dr. Sekula came and walked me around the hospital floor and then told me I was free to go because I seemed steady on my feet. I feel blessed that I did as well as I did. They took out the IV and I was soon on my way back to the hotel. The next two days are a blur as I slept most of those days.
Sunday, September 30, 2007 - Three Day's Post-Op.:
I feel like Rip Van Winkle as I’ve been doing a lot of sleeping. Today I’m experiencing the "ear fullness" that I had been warned about. Hopefully it will go away soon. I wonder how this will affect our flight tomorrow. Hopefully I will sleep on the plane. I’ve also experienced some nausea that seemed to come out of the blue. I haven’t felt like eating a lot and the little I eat I have a hard time keeping down. One highlight for me today was talking to my children. My baby yelled into the phone "Hi Mama. I love you!" I can’t wait to see my children.
Monday, October 01, 2007 - Four Day's Post-Op.:
I was sick as a horse this morning. I couldn’t hold anything down and really wondered how I was going to be able to make the trip home. Fortunately for me once I got started I did alright. I met with Drs. Jannetta and Sekula and they gave me the all-clear sign. Dr. Jannetta said that the minimal spasms I still had should go away in the next two and a half months or so. So I’m keeping my fingers crossed but I could definitely feel a change in the spasms. They were much better than they were before the surgery. Although my neck was giving me some major problems. I swore my head was going to fall off my neck because it was too heavy for my neck. I found out that they held my neck in place on some kind of hard stand and man, it felt like the worst crick I’ve ever had in my life. I made it to the airport and survived two plane rides without getting sick. I was delirious when I saw my children who were in the car with my mother-in-law. My son almost jumped out of the car, as did my little girl. We were all so excited to be reunited. I was in tears because the long wait was over. However, when I got home I got sick again. Well at least it waited until I got home.
Tuesday, October 02, 2007 - Five Day's Post-Op.:
My parents arrived bright and early this morning. My mother-in-law had stopped by to return Ciara’s car seat so she was able to see them when they arrived. I’m really glad they’re here. I think they just wanted to make sure I was OK.
Tuesday, November 06, 2007 - Six Weeks Post-Op.:
I’m happy to report that I had a great time with my parents, completed my recuperation and have returned to work. I’ve been at work for about two weeks now and have no residual effects from the surgery. My hair has almost completely grown over the small area that they shaved and it’s virtually impossible to see where the incision was. My friends are all amazed at how well I’ve recovered and everyone tells me that they can’t even tell that I have had brain surgery. My spasms are minimal, and are actually controllable. Whenever I feel flutters all I have to do is relax my face and they go away almost as quickly as they came. Dr. Jannetta told me that the spasms would leave in the order that they came. They started in my eye and now that is the only place that they are located. I feel like a million bucks. I’m smiling like crazy and no longer hold my head down for fear of someone seeing my face contorted. I will forever be grateful to Drs. Jannetta and Sekula for returning my smile to me. I know that by the grace of God this was made possible. No more Botox…no more pills...no more worrying about when the spasms are going to attack or for how long! It’s amazing. I’m delighted and feel blessed that my surgery was such a success! For me, it was worth it!January 22, 2008 - Four Months Post-op:
I just finished talking to Dr. Sekula and also my mother and I wanted to let everyone know that I’m officially "SPASM FREE". I told Jack last week about being free of the spasms but I was a little hesitant to make it official because I was afraid they would return. However, I feel safe in saying that I no longer have the spasms and I’m enjoying wearing eye makeup again! I even tested it out with my husband and my children to see if any of them could see the spasms and none of them could. I want to express my gratitude to everyone who supported me as I went through the agonizing prospect of trying to decide if I actually wanted to do something as drastic as “brain surgery” because it was a major step for me as it would be for anyone in that position. I also want to continue to be a part of such a wonderful organization to encourage others who are suffering with spasms because I know the ordeal that people go through with this disorder. I’m just so grateful to know that there is a chance for a cure rather than having to suffer with the spasms and that the success rate is so high. For those who have had the procedure and are still having spasms, please do not give up hope. Sometimes it just takes a little more time for some than others. Again, I thank each and everyone for your support and I’m so happy to say that nearly four months after the procedure I am able to smile again. Please know that I can be of any assistance to you in any way, please do not hesitate to ask!