My Experience with HFS (Hemifacial Spasm)

Hello readers. Today I wanted to write a little more seriously about something I had gone through a few years ago, and how it affected me then, and now. Maybe some of you have gone through this, or maybe you know someone who has, but either way I just wanted to share my experience because it might help someone who is currently struggling and doesn’t know what to do!

Back in 2017 I started noticing the right side of my face, specifically my right eye, having intense spasms. It would close like a wink and tug the corner of my mouth up with it constantly. There was zero relief to this. I had no idea what was going on. I thought maybe it was stress, so I tried relaxing, but the spasms kept happening. Then I did what we all do (when really we shouldn’t) and I turned to Google. What I found from my “research” was that I needed more potassium! Oh! I found my cure, how easy that was.

No. Eating more bananas than normal did not help me in the slightest. Then one night Lea and I were watching Grey’s Anatomy (the early days of the show) and one of the neurosurgeons on there saw a man in the hospital having the same exact spasms as me! He pointed out it was a hemifacial spasm and I knew at that moment that’s what I had. If you don’t know, a “Hemifacial spasm is a nervous system disorder in which the muscles on one side of your face twitch involuntarily. Hemifacial spasm is most often caused by a blood vessel touching or pulsating against a facial nerve. It may also be caused by a facial nerve injury or a tumor. Sometimes there is no known cause. (Mayo Clinic)”. I immediately started looking it up and doing research. I eventually came to the conclusion that this is what I had – no questions about it. After a little over a year of dealing with this humiliating spasm, I was finally going to be free of it. No more people asking me why I’m winking at them. No more having to get relief by half closing my eyes all day. Finally, I was going to get some answers and get rid of this. Or so I thought.

There was no quick solution as I had hoped. I had to keep dealing with the humiliating spasm. I had to keep answering people’s questions about why I’m “winking” at them, and why my eyes are half closed. Appointment after appointment, doctor after doctor, and no relief. I tried medicines, those did not work. The neurologist I had been going to was highly against surgery. She wanted me on those meds forever basically. She was wrong, and I hope she stops giving bad advice.

We eventually did more research and found that Northwestern Medicine, in Chicago, has a great neurosurgeon there who has performed the HFS surgery many times. I finally got an appointment and went to go see him. He warned me, however, that if I go through with the MVD (microvascular decompression) surgery, I may have some hearing loss in my right ear. I decided to go through with it. I didn’t care. MVD surgery is “a surgical procedure to relieve the symptoms (pain, muscle twitching) caused by compression of a nerve by an artery or vein.  (urmc.rochester.edu)”.

We had it all scheduled, thankfully I had it done right before covid, in the later months of 2019. It was an eight hour procedure where they cracked my head open and put an end to my compressed vein. When I woke up I was in horrific pain. It was a nightmare, I couldn’t even open my eyes because they were involuntarily moving back and forth, which was causing a major headache on top of my already throbbing skull. It took me a few days in the hospital for them to stop moving, and I had to practice walking for a couple more days. I didn’t get my balance back for a couple years, and I still am a little off. I lost probably half my hearing in my right ear, just like the doctor said, but it was well worth it. Each day I feel like its getting better and better still. I would say it’s about 85% gone for me. It was a mess in there, apparently, which is why I lost some hearing. If they had done any more in there I think I would have lost all hearing in my right ear.

The doctors and the medical staff did a great job. I won’t ever forget what they did for me. They gave me back my confidence, they gave me back my life. I am in control again and it feels wonderful. If you or someone you know is going through HFS, please refer them to a neurologist who has done MVD before, and be sure to consult with your doctors and do your research! This procedure was great for me, and I am so happy I went through with it.

The whole point of this post is to let you all know that whatever you are going through, big or small, that is getting you down and kind of ruining your life, it will get better! It ALWAYS gets better. Sometimes it takes a while, sometimes it happens right away, but just keep having hope and faith, because your day will come. I promise. I found that praying and talking with God always helps me. He hears us and He helps us. Now whether that’s on His time or our time is the question (hint: its always on His time!).

I hope this helps whoever needed it. I know it helped me. It’s great to get this off my chest (in this case, off my vein!). That’s my pathetic attempt at HFS humor. Anyways, I hope this helps, and have a great day!

Peter

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