Hard Things

One morning I woke up and decided to have brain surgery. True story.

I don't always blog about the unpleasant parts of my life--particularly when it comes to my own troubles. People on Facebook who update me on every single aspect of their lives including their headaches or menstrual cramps or hangnails kind of drive me nuts. Sometimes it's best if you keep some complaints to yourself. Then there are posts that involve updates on bigger stuff--really serious illnesses or struggles that people are having. I have mixed feelings about those. One the one hand, I'm never sure if a social networking site is the best platform for those kinds of things. On the other hand, having a whole bunch of people praying for you sure can't hurt. A friend of mine put up a post about some scary health issues her daughter was having and within a few minutes she had 30 comments from people sending their love and support and prayers.

I'm not one of those people though. And this problem isn't one I feel I can put into a short little status update without feeling like I'm begging for sympathy or attention from everyone. So why blog about it? I'm not sure. Maybe because writing helps. Maybe because I think only one person reads my blog (hi Alison!). Maybe because I really do want people to know what I'm dealing with and that in spite of my trying to post all the fun and happy parts of life, which I love most, sometimes life is really, really hard. So here it is:

A little over ten years ago, I noticed a teeny tiny spot under my left eye that was twitching incessantly. It was pretty mild and sometimes annoying if I thought about it much, but it wasn't a huge bother. I mentioned it to my doctor once and she thought it was most likely stress related. It finally did go away but would return for brief periods every few weeks or so. Then about three years ago, I noticed my entire eye was twitching; top and bottom lid. That was really, really annoying. Then I noticed it was spreading up into my eyebrow and down into my cheek. So I made another appointment with my doctor. This one said the same thing--stress and fatigue most likely were the cause of Blepharospasm. I went home and immediately Googled "Blepharospasm". It didn't seem to fit with what I had happening. And then on one site at the bottom, I saw a link for something called Hemifacial Spasm and read the description of that. And I knew that's what I had. I intended to research it more fully to try to find out all I could about what caused it and how to get rid of it, but I was at a particularly busy time then and never got back to it. And a few days later, my symptoms let up again and returned to the milder come and go every so often form I was used to. So I just went on my merry way and tried not to worry about it.

I had another bout last fall that was more bothersome than usual, and I mentioned it at another doctor's appointment when I went in for a sick visit. Again, he chalked it up to stress and didn't seem at all concerned with it. Shortly afterward it disappeared again and I actually had a solid few months with NO twitching at all.

And then, last spring, it started again. But this time it was worse than ever. I noticed that when I closed my eyes (as in to go to sleep), my entire left side of my face would go into major spasms. It began waking me up in the night and making it so hard to go to sleep again. During the day, my eye would often wink at people all on its own! I began to notice that every time I blinked my eyes closed, the side of my mouth would pull up just a bit.

I can't really describe what that feels like. It would be almost funny if it weren't so terrifying to feel like you have no control over your facial expressions. This time I looked up Hemifacial Spasm and became convinced that's what I had. I went back to the doctor. I requested a different doctor in the practice, thinking maybe he'd take me more seriously. Guess what he told me? Yep. Stress less, sleep more. I told him what I thought I had and I could tell he thought I was making it up! So I asked him for a referral to a neurologist and he said no. He really thought if I tried some relaxation exercises and slept more, my problems would be solved. He said to come back in three weeks and if I was still having problems, then he would give me my referral.

So I tried to take his advice. I really hoped he was right. It isn't like I wanted to have a progressively worsening neurological condition. And then one morning I woke up with the worst migraine of my entire life. I managed to get the kids off to school, cancelled my visiting teaching appointment, and crawled into bed, wondering if I would be completely blind when I woke up. It was like I was looking though a long black tunnel and everything at the end was tiny and bright. I was dizzy and the pain in my head was crushing. I was completely incapacitated for most of the day and then horribly weak for the rest of it. I've always been prone to migraines and tend to have a couple of them per year, although every few years I seem to have a period of a few weeks where I get them more frequently.

The next day I was fine though and felt great again, except for the stupid twitchy eye. But two days later, I was hit with another migraine. Not nearly as bad this time and it was odd in that the headache part wasn't too awful, but once again, my vision was horribly affected. It was sort of like looking at the world through TV static. It lasted about an hour and then went away. These continued to happen every few days and we dubbed them "eyegraines" since most of the time my vision was terribly affected followed by the headache. It started to really get me down since it made it difficult to know if I would be able to follow through with my plans. I was so worried about Spencer's spring field trip because I knew I would be riding a school bus for several hours with noisy kids and then walking around in the bright sun and heat for the rest of the time--all headache triggers! Luckily, I was spared that day. The other distressing symptom was the dizzy spells. I had a bout of them last fall and winter too and the doctor had me try a procedure where I laid accross my bed with my head off of the end and then had me turn my head from one side to the next. Strangely enough that seemed to help, so I tried it again this time. Once again, it seemed to help, though I had to repeat it nearly every day.

So with all these new symptoms, I went to Google again. Bad idea. Google told me, based on these symptoms that I had MS or a brain tumor. Nice, right?

I went into my next doctor appointment and told him about all the new stuff and this time he didn't hesitate to give me my referral. Not only that, he said we should do an MRI. So, now I was actually freaking out that I may really have something serious. Apparently no one else did though because it was a full agonizing eight weeks until I could get in to see the neurologist.

Finally the day arrived. He listened to me. He looked at a video I had taken of my face in spasm since it didn't seem to want to act up for the doctors. And he said: the migraines are just migraines. Like I said, I have a history of them and will most likely continue to get them every so often. The dizziness is caused by Benign Paroxismal Positional Vertigo which many refer to as "ear rocks". Basically I have some sort of calcium deposits or some such thing in my inner ears that when they get knocked out of position, cause extreme dizziness. And the treatment for it is exactly what my doctor had me do with the laying across my bed and turning my head. I guess it somehow repositions those deposits and gets them back in place. And the twitching and spasms ("please say stress, please say stress") is indeed Hemifacial Spasm.

And what is Hemifacial Spasm you ask? It is a condition in which an artery or in some cases ateries have become elongated or enlarged and are pressing on my facial nerve. It begins mildly but as the protective whatchamacallit around the nerve is worn away, the twitching and spams come more frequently and severely. It will not go away on its own. In fact, it will continue to progress until my face will be in spasm nearly constantly. This will mean that my eye will be nearly closed all the time and my mouth will be drawn up into some sort of freakish half smile. So what can be done? Medications can help for a time. I actually have been taking one that initially was so helpful, I thought I'd found my answer. Unfortunately, the effectiveness wears off pretty quickly, and my symptoms returned after only a couple of months. The option which my neurologist highly recommends is Botox injections. He was the first to tell me however, that the side effects of these injections can make your face droopy on that side and cause people to question whether you've had a stroke. The effectiveness of the injections tends to wear off as well requiring more frequent visits using more of the Botox, and causing more of the droopiness. And the kicker is, it only masks the symptoms but doesn't take away the sensation of the spasms which in my case is what is keeping me awake at night. I knew immediately that this was a course that I wanted nothing to do with. And I knew from my research that there was another option but I had to bring it up. "What about surgery?" I asked. He told me he advised completely against the idea. He said it is too risky and only effective in about 70 percent of cases with a high risk of side effects like stroke, deafness, etc. I had done my research and knew that he was exaggerating a bit on the numbers, but I let it slide and asked if any of his patients had ever done it. He said one of them had and grudgingly admitted that it had been successful. But he was quick to restate that he absolutely advises against surgery. (Some of that may be genuine concern, probably a lot has to do with him not wanting to be involved in a lawsuit should I choose surgery and have it not work out, and I'm sure even more has to do with the fact that he can make a boatload off of giving patients the Botox injections!)

Anyway, I left his office completely depressed and with a prescription to try out which I mentioned really helped initially. Once I got past the first few weeks, I went back to the computer and began reading all I could on the Hemifacial Spasm Association website. This is a site where people who have the condition can share their experiences and it has a whole section of diaries of people who opted for surgery and those who have done Botox. The Botox ones were largely negative--most people say it was awful, especially the longer they do it. The surgeries were largely positive--most people say they would do it again, even though it was hard and even though some of them did have some complications like hearing loss in the affected ear.

And as my own condition continued to worsen, I began praying. At first for this to just be taken away from me--miracles can happen! But I know that so many of the challenges we have are given to us for a reason and that we learn and are stronger as a result of them. So then I began praying about what I should do. I would convince myself that I wanted the surgery, then I would have a relatively calm day or two and convince myself that I should wait till it became more severe. And then I'd have a rough day and decide I wanted the surgery immediately! Back and forth and back and forth until one morning, after a hard night, in the quiet before dragging myself out of bed, I just knew. I knew that even though I may still have some better days, that the worse ones always come back. I knew that they will continue to come back worse and worse until eventually there won't be any mild days. And I knew that surgery might be the miracle I have been praying for. Or maybe it won't. Maybe I'll have more challenges as a result. But I felt an overwhelming feeling that I should do the surgery. And I haven't changed my mind yet--even though I am more scared to do this than I have ever been in my whole life.

Then Kalen and I went to the temple one day and I went with a prayer that I could feel more calm about my decision. I already knew it was what I should do, but I wanted to feel more peaceful about the unknown instead of so much fear. And I did. That was the confirmation I needed to stick to my decision.

I found a surgeon who was listed on the Hemifacial Spasm website who is actually located just south of Detroit.  I e-mailed him with some of my questions and concerns and he wrote back and addressed a lot of them. This particular surgeon is in partnership with the guy who pioneered the surgery and has a 96% success rate (so slightly better than my neurologist had reported...). He said the risks that the neurologist mentioned are possible but low. The biggest is about an 8% chance that I could lose some or all of my hearing in my left ear since the auditory nerve is right next to the facial nerve. Other risks include about a 1-3% chance of Bell's Palsy (temporary facial paralysis), about the same percent chance of infection due to a spinal fluid leak, a less than1% chance of stroke, and also some risk of complications with the anesthesia. So not pleasant, but not as high as my neurologist says either.  He also said that it's better to do it before the condition becomes too severe and that Botox can make the surgery less of a success, so it's good that I didn't opt for that.

A couple of weeks ago I went in for an EMG.  I hope you never have to have one.  It isn't very pleasant.  Basically they hooked a bunch of electrodes up to my face and then gave me a series of electric shocks to get what they call "lateral spread" which indicates that I do indeed have hemifacial spasm.  And that did happen,so that was the good news.  But then they tested my "normal" side and they also got a lateral spread on that side which might indicate either that I also am developing this on my right side too which does occur in 11% of cases and which will require a second surgery down the road at some point OR the surgeon said it is possible that I'm getting some sort of echo effect.  He said they see it sometimes in epileptic patients where their unaffected side will show epileptic activity even though it's actually fine.  Almost like the brain wants to just have things be symmetrical or something.  But they have only recently begun testing the non-affected side during this test for hemifacial spasm, so it's unclear which issue I am facing.  I'm definitely hoping for the latter.  I really don't want to have to go through this all over again.  But I guess I'll cross that bridge when I come to it.

Anyway, I just had my appointment with my local doctor where I had to have labwork and a physical to make sure that I can be cleared for surgery.  I passed.  Surgery will be on June 20th.   That's in like 8 days in case you were wondering. 

I'm trying hard not to panic.  I do still feel like I'm making the right choice for me.  But it is so scary not knowing how this is going to go and if I'll have complications or new issues to deal with.  But what is scarier is that I DO know what will happen if I don't do the surgery.  So this is a risk that I have to be willing to take even not knowing how it will all play out.  I just hope I can say it was worth it when all is said and done.