Surgery Update

Here's the jist...I'm writing this as our neighbor's house is on fire and there are several fire trucks here. So many other people are struggling with big things and I am again reminded just how blessed I am. Things have been hard for the last two days, but it could be worse. The first few hours after surgery I cried quite a bit and thought...HOW MUCH MORE is going to be taken away from me? But, I finally decided that there could be good things from it all.



Here's the short version: I remembered too much of the surgery. It was immensely painful and the worst trigeminal neuralgia pains weren't taken care of as we all had hoped. I also realize there is a good chance I won't be able to do the other side's TN surgery. I may have these pains forever and nothing to help it.

Truth--> A lot has been taken away from me with my MS and occipital and trigeminal neuralgia. I don't go out much. I have to be careful about opening my mouth too big by eating, singing, or laughing. If you know anything about me, you know I love to laugh. Sometimes I can't handle my little daughter kissing me, brushing my hair, lying on my head or face at night, or brushing my teeth. I still do it all, but struggle through it. I put a lot of hope into the surgery and figured it would be fine. I was told that I wouldn't remember the surgery, the recovery would be no biggie (just some soreness at the incision point), and I could eat right after. I was hoping I could soon go off the heavy medications I'm on for the pain. They are getting less and less effective and the side effects are getting worse.  Twitching, memory issues, worse fatigue, more dizziness, vision issues, etc. I went from traveling the world, teaching 4th graders, laughing my guts out, socializing a ton, and dreaming big. I now can barely travel to church and back without issues. I had academic scholarships, graduated with a 4.0 GPA in my Master's program, and could multitask and speed read like a boss. Now I struggle with the simplest recall and struggle holding onto new memories unless it has a strong emotional or pain tie. Half the time I have to read something multiple times or can't see enough to read at all. I hold back on laughing, socializing, or building new friendships. I was hopeful that parts of me could come back after these surgeries. But, the opposite is my new reality. I try not to complain, aim to find the silver lining in every dark cloud, and keep hope and faith alive. But, I struggled immensely the past day and a half in these areas.

Yesterday morning I was at the hospital at 5:30 a.m. for my rhizotomy or radio frequency lesioning of my right trigeminal nerve (specifically V1 and V3). I have problems on BOTH sides of my face in ALL THREE branches of the trigeminal nerve. It's very rare and mine is caused by my MS tearing down the myelin sheath. It's harder to treat, but we were quite hopeful. The morning of the surgery I learned that V1 is the hardest to reach. I also learned there are a few MS patients who endure the surgery and it only helps for a few days. I had been told that I wouldn't remember the surgery and the recovery was no biggie. I could expect a bit of soreness at the incision point, but nothing more than that. As I understood it, they use a hollow needle, go in by the mouth, enter through a tiny opening in the skull, and use heat to cause a lesion to numb the nerve a bit. This causes the brain and nerve to stop firing and communicating. It is temporary and both sides would have to be repeated every 1-2 years. In my research, I thought killing the nerve is where you get facial numbness and trouble chewing or swallowing, not this one. Maybe I misunderstood...I still don't know.

I went into surgery quite happy, hopeful, and calm. But, towards the end, I was too awake. They put you under to an extent, go in with the needle, ask you if they got the right spot, and then put you back under with more anesthesia. I don't know if it was because the surgery took too long or if they just hadn't given me enough anesthesia, but I remember the end of my surgery too well. I was crying and screaming as they were moving the needle. They finally stopped and I was moved to the rolling bed. My body kept twitching in pain and I kept moaning, hoping it would stop. I was wheeled down the hall, they parked the bed, and I looked at the clock-10:00 a.m. 2 hours. I kept telling them it had hurt. They misunderstood me and asked what was hurting. I told them that the SURGERY hurt too much. They looked a bit horrified as they realized I was too awake and remembered it. The neurosurgeon tapped my forehead and I told him I felt it. No numbness. It didn't work on my worst part, V1. He seemed bummed. He left and I had a horrible trigeminal & occipital neuralgia attack on my right side. They gave me a pain medication and I asked to leave. I had only been out of surgery for 5 minutes, so they said they had to monitor me longer. 5 minutes later they asked about nausea. I was feeling nauseous from too much pain, so they gave me that and I again asked if I could leave. I just wanted to leave and sleep somewhere comfortable. I started crying because I realized the surgery didn't work on my worst part. The neurosurgeon met with my husband and said they tried twice to get to V1, but it didn't look like it worked. The nurse told him I might remember a bit too much of the surgery. I got out of the bed and wheeled away at 10:40. The nurse had said they medication usually knocks people out, but "nothing puts you to sleep it seems." My other surgeries have been the same--I push through so much on a daily basis that I can function despite severe fatigue, dizziness, nausea, light headedness, and drowsiness. However, I didn't remember my other surgeries IN the operating room except for my C-section. That was a happy moment. This one...not so much.

The numbness in my face is intense. It's kind of like when you get numbed at the dentist, but more severe and covers much of my face and head. There's a tightness and swelling, with a bit of daggers and burning on my lips if I laugh or talk. I slur my speech and can barely taste anything. I drool and struggle chewing, swallowing, brushing my teeth, eating, etc even more than before. I was born without a real sense of smell, but having half of my nose and most of my tongue and mouth numb makes things much more difficult. I feel like part of my head is in a vice, even more than before the surgery. I don't know if the nerve was killed (these issues were specific to a dead nerve in my research) or if my body is just in shock and if any of it will lessen. I still have stabbing pains-oddly enough, even in my numb parts of my face. There is a dull pain that is deeper now and some stabbing pains. It's funny to have a numb jaw, ear, some of my head, up to almost my eye. I think it may have been good that they didn't get V1, because if you get V1 and V2, there can be permanent vision and/or cornea problems. I decided I don't think I want a numb eye. It feels as though they got V2, V3, and almost half of the back of my head and ear, although not enough for the occipital neuralgia (hoping it was a bleed over effect). I realize that if this is how I'll be for the next few years (or even forever), there is no way we can do the left side. My worst pain on my left is in my mouth (V3), which funny enough is where I have to chew now. I feel like I traded one bad situation for another. I also have had some incredible headaches that seem to be worse than before and more constant. When all was said and done, I think I'm glad they got V2 and V3.

Silver Lining: Maybe now I'll lose weight.
Maybe some of the numbness will subside.
I didn't wake up blind.
My house isn't burning down (theirs isn't either---It doesn't look too severe, thank goodness).

My beautiful grandmother had a tumor, they cut the nerve, and her eye dried up, so they took it. I kept reminding myself that I'm glad they have come so much further medically. She lost a part of herself and still lived a wonderful life. Maybe I'm losing more of myself, but hopefully it's just temporary. I've gone 3 years with these pains, so what's another 2....or 20? I've lived almost 2 decades with my other diseases and still lived a lot of great dreams.

As I felt like bugs were crawling on my head, itchy, swollen, tight, numb, stabbing pains, burning lips, loss of taste, etc, I remembered that people had reached out to me in December & January. I was able to get a massage to help with some of my neck and shoulder pain, family is watching my daughter so I can rest, my hubby and I got to see a movie and eat out for our 5th anniversary a few days before, and I have felt more "normal" lately. We've been miraculously taken care of in so many ways I didn't think were possible. So, I'm going to assume I'll be taken care of, maybe even miraculously, with these trials too. Maybe I won't, but I'll miraculously have enough strength to endure. I'm not forgotten and for whatever reason, this is my journey. I don't know what next week, next year, or the next decade will look like. But, I do know that I have incredible people in my life. Prayers, love, and help have caused me to keep going and to hold on for dear life. Everyone who has sent messages, letters, gift cards, prayers, and help when I didn't know how we'd survive January/February have carried me through some really dark times. I cannot thank all of you enough.

I meet with the neurosurgeon again in a few weeks. We will see how I'm doing. I'll try to update here, because it's easier to explain once. Sorry that it's not very personal. Again, thank you so much for the prayers. I think they were led in the surgical room and maybe eventually I'll get the left side done and it will be an even better experience. Who knows. Bonus: no aneurysm occurred, no blindness, and at least part of it is numb, so half of it sort of worked. Kind of. ish. I'll take what I can get these days.