Chiari Malformation type 1

@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.

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.

@macw I had my surgery at the Mayo Clinic Rochester Campus 7 1/2 yrs ago. My neurosurgeon and my entire medical team were and continue to be phenomenal!!! I consider them part of my family!!! ❤️❤️ I look forward to seeing my medical team every year for my annual checkup!!

Sending prayers to you for peace and comfort during this time. Praying your daughter has a speedy and successful surgery. 🙏🏻

Hi guys,
I haven’t been diagnosed with chiari, but may or may not have a syrinx, and a possibility of syringomyelia which can be caused by chiari.

If anyone else has been diagnosed with syringomyelia, please respond as I’m at a loss and unsure if I even have it.

I lifted a box two months ago and pain occurred straight away in my chest that moved to my back, and is now mainly in shoulders.
I know syringomyelia occurs gradually, so I’m unsure of if I have it as symptoms occurred straight away.

I’ve been doing physio, which has helped, so the pain is getting better not worse.
Pain isn’t in my back anymore, mainly shoulder blade area.

If anyone can help or give advice, that’d be appreciated.
Thank you.

I’m also 20, and am really scared that I’ll be in pain for the rest of my life.

@agee3003 you need to make an appointment with a neurologist for an examination and discussion of your symptoms. After that they may make the decision of having a head and full spine MRI.

I would start journaling each and every day what your daily activities you did, how you feel physically and even what you eat. This will be very helpful in remembering things when you do see the dr. Also it helps you to determine if some activities increase your issues.

my neuro wants me to have surgery , fossa decompression, I have put it off for over a year or more as I didnt think the risks were worth it , things have gotten worse, headaches /dizzy etc but I still fear the risks.

@tisme I guess it really would depend on how debilitating your headaches are. I have suffered with headaches and dizziness since I was nine years old. I wasn’t diagnosed with Chiari 1 until I was 36. My headaches however have improved over the last year when my rheumatologist put me on hydroxychloroquine and methotrexate for another condition that I have, which has relieved some of the fluid buildup from my chiari. I have chosen not to have surgery and have a 15 mm herniation. I have been to two neurologists, one saying I needed surgery, the other thinks I don’t need surgery. The neurosurgeon told me not to come back unless I make up my mind. That was 10 years ago. I still haven’t had surgery. I hope you find the answer for your headache. I wish you luck in your journey.