My Story

20200122_090953When this whole journey began, I didn’t have a clue what was about to happen. I have had migraines my entire life; I even remember when I was a child, I’d put pillows on top of my head or my arm across my head because my head hurt. Things started changing in the summer of 2013, though. My headaches started getting worse, much worse. I got to the point where I couldn’t even function.  I  had trouble every day. Sometimes the problem wouldn’t go away at all for days and days.  I would go to my doctor, and he’d give me a shot of something, and I’d go home sleep and wake up feeling a little better. Then the next day, it would start all over again.

My husband thought maybe I was just depressed and needed to get out of the house for a little while. So we went for a drive. On this drive, things changed drastically.  My head started hurting even worse, then I couldn’t see, and my hearing was just like a roaring. My husband took me to the ER immediately. While we were there, they did a CT, and when the doctor came back to talk to us, he told us I had a tumor and that I would need to have an MRI and follow up with my family physician.

So I had the MRI and then went to my doctor. Dr. White told me that I had not 1 but 2 brain tumors and that if I had to have them, they were in a perfect place. He reassured me that it was going to be ok and told me not to go home and worry. Thankfully he is someone that my family and I have known for a long time, and he knows how I am. The odd thing is I didn’t worry or freak out.  Not like I usually do. I mean, it was shocking, and it was annoying… I feel like the Lord gave me a peace about it.

Our next step was to see the neurosurgeon he looked at the MRI and told me that I had two tumors and that they were called Meningiomas. Meningiomas are tumors that are in the lining around your brain.  He said that we would do another MRI in 3 months, and then he sent me to see a neurologist.  She tried to help me with pain management and sleep issues. I saw her every month for three months. My symptoms only got worse.

The headaches didn’t ease up at all, and I started getting dizzy. I also began feeling like the floor was just being pulled out from under me.  I had to have someone with me when I walked because I lost my balance so quickly.  I looked like I was doing Michael Jackson, Thriller dance a lot of times.  I’d throw my hands out in front of me.  It was kind of a running joke with my family. Especially if I were out in public, we’d start acting like I was sometimes dancing. My daughter would do it too.  I love my family. I would seriously begin to forget things, and I’d say I have brain tumors. What’s your excuse.  LOL Ok, back to the story.

I had the second MRI, and we went back to my neurosurgeon.  This time he talked to us for 2 hours. The tumors had grown.  That was a scary thing to hear.  He also let us see the scans when we saw the tumors. It made the whole thing. I don’t know it was something about seeing my brain and then the black spots on top of my emotion… it was just shocking to see. He gave us the option to have the surgery or to go home and think about it. We decided to go back and talk about it before decided. This was a big decision, and we wanted to speak first. It didn’t take long though we decided that night. I wanted those things out of my head. So we set up the date to have the surgery for the end of December. I had to see my family doctor one more time before I had to have the surgery, and he prayed over me right there in the office. What a blessing.  All my family and friends were praying too.  I just felt so much love from so many people.

On the day of surgery, when I was in the OR, the nurses prayed over me also. The type of surgery that they did was called a craniotomy. They had to cut the top of my skull off and put it back on after they took the tumors out.  The tumors were more significant than what the doctor thought they were.  It ended up weakening my entire right side. I couldn’t move my right leg or foot. It was because the tumors pushed into my brain more than he thought.

I have a connective tissue disease called Ehlers-Danlos Syndrome. It affects all the connective tissue in your body, which is the soft tissue.  It affects all my joints, my stomach, my skin, and apparently, it changed the way the tumors looked in my brain.  I’ve done some research on my own, and it appears that people with EDS (Ehlers-Danlos Syndrome) are more prone to get meningiomas, which kind of explained why I had them.

I was in the ICU for a day and a half then in a regular room for four days.  I had physical therapy every day I was in the fitting room, and I could walk by the time I left.  When I got home, I hurt, but it was from the surgery, not the other pain.

If you have to have brain surgery, there are a few things I can tell you that will help.  First, when you go home from the hospital, have sunglasses. Second and eye mask or a cold washcloth over your eyes helped alleviate a lot of my pain. Third, have a soft pillow, maybe even a travel pillow.  It helps take the pressure off your head.  It isn’t easy, and the pain doesn’t go away quickly. I think two weeks after my surgery was probably the worst. Then it slowly started getting better.

Three months after surgery, I was feeling quite a bit better. I did still have problems with my foot and leg, and I always do today, but it is much better.  Time…  It takes a long time to start feeling better. Don’t think it won’t ever get better because it will.  Brain surgery isn’t like any other surgery.  When air hits your brain, it does something to it.  It takes longer to heal and longer to feel better than most medicines.

I am almost two years out, and I still have times of fatigue, and I still have migraines, but the migraines are just migraines. It isn’t anything like before.  My life is so much better and is only getting better day by day!  I couldn’t have done this without the Lord and the support of my family and friends.  If you or someone you know is going through anything like this, and you want to talk to someone, I’m here.  You can message me on here or email me at misokie629@gmail.com. I’d be happy to help any way I can.  Thank you for taking the time to read my story.

~Lori

Published by Misokie

I am 50, I have had a lot of health problems so that will probably be a part of my blog. I am going to blog about my life, I'll probably review items I buy from Amazon just because I buy from Amazon a lot because I don't get out a lot. lol I will also be talking about learning graphi design. One of my favorite things!! This should be fun!!!

3 thoughts on “My Story

  1. What a truly brave story to share. How scary! And yet you had all the confidence in the world God would protect you! I’m so glad you are healing more and more all the time. We don’t realize the gift of our health until it’s gone!

    Like

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