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September 16, 2015

My Story

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When this whole journey began, I didn’t have a clue what was about to happen. I have had migraines my whole 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 a headache every day. Sometimes the headache 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 very good 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 just feel like the Lord gave me a peace about it.

Our next step was to go see the neurosurgeon he looked at the MRI and told me that I had 2 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 with sleep issues. I saw her every month for 3 months. My symptoms only got worse.

The headaches didn’t really 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 easily.  I looked like I was doing the 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 was out in public.  We’d just start acting like I was dancing sometimes my daughter would do it too.  I love my family.  Being able to joke about stuff that was really serious helps.  I would start forgetting 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 actually saw the tumors. It really made the whole thing real. I don’t know it was something about seeing my brain and then the black spots on top of my brain… 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 home and talk about it before decided. This was a big decision and we wanted to talk 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 go 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.

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 bigger 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 basically the soft tissue.  It affects all my joints, my stomach, my skin and apparently it affected 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.

 

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Yes, that really is the top of my head. Yuck!

I was in the ICU for a day and a half then in a regular room for 4 days.  I had physical therapy everyday I was in the regular 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 cool 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 2 weeks after my surgery was probably the worst. Then it slowly started getting better.

 

3 months after surgery I was feeling quite a bit better. I did still have problems with my foot and leg and I still 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 surgeries.

I am almost 2 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 without 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 misokie@mail.com. I’d be happy to help anyway I can.  Thank you for taking the time to read my story.

~Lori

5 Comments on “My Story

lilzoom
September 23, 2015 at 12:38 pm

Thank you so much for sharing

Reply
Rose
September 26, 2015 at 1:03 pm

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!

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misokie
October 6, 2015 at 12:06 am

God’s peace is greater than explanation. 🙂

Reply
Allison
November 21, 2015 at 5:20 pm

Amazing story! Praise God for the strength he gave you to go through this and be able to share your story with others to encourage!

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Profile photo of Lori Ward
Lori Ward
November 21, 2015 at 5:25 pm

Thank you, Allison! I do give God all the Glory! ❤

Reply

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