This may not be the best day for me to write this post since it's a pretty bad day and I'm feeling pretty negative about this whole thing. I thought about not writing it at all but since this blog has become basically my journal, I decided just once I would talk about this issue.
After I had my surgery to correct the issues I was having with Hemifacial Spasm, I mentioned that I was still having a few residual twitches. That actually continued off and on over the next months. I mentioned it to the surgeon who said it is very common for the nerves to take a long time to repair themselves after years of irritation and not to worry about it because he felt confident that it would eventually diminish and finally go away completely.
It didn't. In fact, as I approached the year mark of surgery last June, I noticed that the twitching was actually becoming more frequent and more noticeable. I mentioned it again to Dr. Casey who finally expressed some concern and admitted that it could be a problem. So he wanted me to get another EMG of the face (aka extreme torture). The guy who did it before was no longer in state so it took some time to locate another neurologist who could do it. Finally I was able to schedule an appointment with a doctor in Kalamazoo in August. It was right at the beginning of the visits from the family but I took the afternoon and went over. The test was absolute agony. In addition to the shocks to both sides of my face, they used a needle inserted in various spots to get a more accurate reading. It was awful. And the results were even more awful.
Before the test, the doctor expressed his concern about putting me through it when it didn't appear that I was having any symptoms and I looked normal to him. But I told him I wanted an answer one way or another and since this was the only way to get it, I was willing to do it.
At one point during the test, the doctor actually took out his phone to take a video of the results he was getting, saying he couldn't believe what he was seeing. He actually said "based on this test, I can't believe your face is as calm as it is. These numbers are off the charts." (Yeah, comforting right?)
So basically, the spasms are back. And both sides remain affected. For whatever reason, my right side is much, much less symptomatic. I only have occasional twitching and a slightly drooping eyelid on that side. My left side, the side that I had surgery on, is the one with most of the spasms.
I left the appointment calmly. I washed the goop off my face in the restroom and went out to the car where I called Kalen to tell him the news. And that was when I completely broke down. I can't remember the last time I have sobbed so hard. And I can't describe how awful this news was to me after going through so much with that surgery in hopes to put this behind me. I don't know how long I sat there trying to pull myself together enough to drive home. But finally I did.
I knew I needed to put on a happy face for the family reunion. It actually was the perfect distraction while I waited for the results to be sent to the neurosurgeon to review. Being surrounded by family was the perfect diversion.
When I checked in with the surgeon he said he still hadn't gotten the EMG report. And about that time I got a call from the doctor who did the EMG asking me to come back to repeat a portion of the test that hadn't worked right. And by "a portion of the test", I think he meant "most of the test" because I went back and endured another hour or more of needles and shocks.
And still the surgeon didn't get the report. There were fax issues and computer issues involved but basically it was weeks before he got it to review. And when he finally did, he concurred that the condition has returned. In consulting with some other colleagues, they think that I may be one of the rarest of the rare who have bilateral hemifacial spasms and that they are likely originating from deeper in my brainstem. So what that means is not only do I have the condition on both sides of my face, but the source of the spasms is possibly in a location that would make my condition inoperable.
Unless a new miracle is developed (yes, please!) my only real treatment option is Botox injections into the location of the twitches. I'm holding off as long as I can because the injections, while usually effective at first, tend to require more Botox and more frequent injections over the years and can cause my face to become weak and droopy. Nice huh? I can go from having a face in spasms to looking like a stroke victim.
Right now the twitching is still not super noticeable to others unless I point it out. Which I don't. But I am alarmed at the rapidity with which it is progressing. After that first year with only minor twitching here and there, I am now having daily and near constant twitching of some part of my face or other. There are spots in the crease of my eye, my eyebrow, the side of my nose, my upper lip and just below my lower lip and also my outer cheek just below my eye that are all affected now. At the risk of sounding melodramatic, each new twitch seems to send me into the depths of despair all over again. I'm sure it seems a bit crazy to be grieving like this over a twitchy face when there are other people with bigger and much harder burdens to deal with in the world. I know that. I know that there is always someone out there who has things worse. But for me, this is awful. For me, I would give just about anything to not have to deal with this. And for me, this is the biggest burden.
I know it isn't noticeable now. But it will be one day. I know I am not disfigured by it now. But I will be one day. I know I can still carry on a normal conversation with someone now without worrying too much about what my face looks like to them. But one day people may be uncomfortable speaking to me because of what my face is doing. Or I will be uncomfortable speaking to them because of my fear of what they are thinking because of what my face is doing. Anytime I look too far in the future, I wonder how bad I will be at that point.
I've heard it said that if we were all to put our trials in a big pile, we would look at what everyone else is dealing with and take ours back. But I'm pretty sure that I could probably find something else in that pile that I would rather deal with!
I know we are given challenges to overcome in this life and I know things can be difficult. I am trying really hard to keep sight of the bigger picture. I'm trying hard to learn something from this experience. And I am hoping, always hoping for a miracle. I keep hoping that there will be a new procedure developed that will cure it or that any number of the priesthood blessings I have been given will be the one where I finally have a promised healing. I read stories of Christ healing people in the scriptures and in my mind I can see a day where He will put His hands on my face and I will finally be free of this. I know that can happen someday. But I was watching a little YouTube clip today where a mother was talking about her daughter passing away from cancer. People had told her daughter that she was a fighter and that she was strong and would be the miracle who would beat that terrible disease. But the daughter said to them that the real miracle isn't beating the disease. The real miracle is being able to yield to the will of the Lord no matter what the outcome may be.
I know I need to accept this and learn how to deal with it. I truly believe that before this life I agreed to take on the trials that I have had and will continue to have. I need to have hope in the future while being able to count my blessings in the present. And I really am blessed. I have a wonderful husband and five beautiful and amazing children who bring me so much joy. I have the gospel of Jesus Christ. Jesus, who understands like no one else what I am going through.
The same day that I learned for sure that this condition had returned, I came across a quote by Thomas S. Monson that said of the Savior: "He will lift you and guide you. He will not always take your afflictions from you, but He will comfort you with love through whatever storm you face."
Today has been a really, really hard day. I know I will have many more and possibly even harder days than I can even imagine. But I know that I am not alone in this struggle. I just need to remind myself of that pretty much every step of the way--or every twitch of the day in my case. :)
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