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Chiari Malformation type 1

Brain & Nervous System | Last Active: Apr 6, 2023 | Replies (146)

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@nancy82415

@resawaller I did not have to make the decision to have surgery. My Chiari and Syrinx were so large I was told it was not a matter of IF but WHEN I would end up in a wheelchair. Would of lost all use of my extremities. So there was no decision to be made. Surgery was my only option. Surgery needed to be done - sooner rather than later. So less than three weeks after talking to the surgeon I was scheduled for surgery.

I did not have headaches, but I was dealing with so much pressure inside my head that I never knew I had. Before surgery I was working 40 hrs a week and coming home exhausted. I was depressed as I just not was feeling right and could not put my finger on to what was wrong. I had to push myself each and everyday. I could not find joy or happiness in anything. Fun things were a chore. I was not myself. I was having balance issues. I would need to brace myself when I sneezed as it felt like my head was going to explode. I was absolutely miserable. I NEVER want to feel that way again. I will do everything in my power to not let that happen.

I was at the point where I felt I could no longer live like this. Surgery was the best thing that happened to me. As soon as I was coherent after surgery I noticed a difference. I was light headed in a good way. This is when I realized I was going thru life, for who knows how long, with such pressure in my head. I did a 180 in how I felt. I was feeling the best that I have felt in years and continue to be four years later. I now celebrate two birthdays. The day I was born and the day I had surgery!

I was the rare patient that I had no pain after surgery. All I had was an airhead headache due to the opening of my dura and was nauseous. I was warned a couple of times, before surgery, that I would be in pain. Yes, the will give me pain meds, but it would not completely take the pain away. Even knowing this I was ready to have the surgery.

If ever I would need surgery again, I would do it in a heartbeat. Even knowing that I probably would have pain the next time. Just like a parent having that first child, sleeping thru the night and is always happy. Then they have that second child who is the total opposite.

I pushed myself to not think about what was actually going to be done in surgery. I wasn’t going to be doing the surgery. I prayed and asked for prayers from my family, friends and church members. I asked that they pray that I would be at peace before, during and after surgery. All the prayers were answered.

My advice would be to listen to your heart and your doctor. My family members were not walking in my shoes so they had no clue what I was dealing with day in and day out. My family was scared for me, but they knew this was serious and I would not get any better if I did nothing. I would only get worse. Surgery is done to stop the progression of the condition. My 88 yr old mother was crying when I said my good byes before surgery. She was worried and scared, but I told her that I wasn’t worried or scared and she should not be either. GOD was with me. I imagined myself in surgery with GOD on one side of the surgeon and my deceased Dad on the other side and holding my hand. I had so much faith and trust in both GOD and my neurosurgeon, that I had no reason to worry.

May GOD be with you during this difficult time. May you find strength and comfort.

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Replies to "@resawaller I did not have to make the decision to have surgery. My Chiari and Syrinx..."

Thank you for this. My daughter is scheduled for decompression surgery at Mayo the end of this month. It has been an incredibly scary time for me.