Chiari pain

For those of you who’ve never heard of CHIARI Malformation it’s a life long condition tht affects the brain, spinal cord, nervous system. Hell, it affects my entire body. Unimaginable pain. Headaches beyond description, tinnitus, muscle spasms, loss of feeling in arms and legs. The list goes on and on. Is there anyone else who has this condition too?

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Never heard of it, but sounds possible. I’m in pain 24/7. It’s always there. Now and then a I
It’s a little better but most of
The time it’s worse. I’m very weak and ttired. When someone
ask me how I feel I just say hi e ssed. 😊 to be alive. Someone is always worse off than me. Be encouraged. God has a plan for
both of us. I love you and shall pray for us both.

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I do not have Chiari malformation, but do have MS which can have similar symptoms. However, yours sounds much worse than my specific symptoms. I understand that what you have is also much more rare and I suppose harder to treat. 🙏🙏🙏 for strength and healing. I hope you have a great doctor.

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I have not been diagnosed with it, but my daughter (a nurse) thinks I might have it. I have had a migraine-type headache for two and a half years. I have a lot of spinal issues as well. We haven’t found a dr around here that diagnoses it. There is one, but she is looking to retire soon so isn’t taking new patients.

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Ask that doctor for recommendations

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I have one of her colleagues,but he has not been focused on checking for that. If.I remember correctly my daughter mentioned it at one of my first appointments.

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I have never heard of this condition, but spent a couple years trying to figure out what was wrong with me, then kind of gave up, and I wonder if this could be it! Saw multiple doctors in various specialties starting at age 37 in 2014. Did thorough research on my own. Meds for symptoms seem to control things fairly well.

Can the symptoms start that late in life? I’ve dealt off and on with pins and needles, reduced sensation in fingers, joint and muscle pain, lower back problems, chronic feeling of clogged sinuses, migraines with double vision, weakness, dizziness, imbalance/clumsiness, one horrendous episode of sciatica.

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Thank you for sharing your experience with others here. I included a link below to another topic on chiari malformation in the community in case you wanted to connect there as well:

https://community.carezone.com/t/chiari-malformation/80

Take care,

—Ivy
Community Manager

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Yes I have all of that and more after surgery was performed. They took 27mm of my Cerebellum to start dba ground a one inch part of my skull out. To facilitate the flow of spinal fluid they put in what you could liken too a dorm grate. I feel for anyone that has this because it is do hidden from the naked eye. Get the Word out and see a Neurologist if you think you might have a malformation. Ask then first then if need be tell them to look at the bad of your skull at the cerebellum.

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Yes it can I had surgery for it at 49 although my surgery went bad. Before it I could do a lot and was very active now I suffer the headaches and many other things,

I have been living with Chiari and it is a struggle for me to get out of bed everyday. I’ve had constant migraines from the time I was around 7 years old and my legs and arms go numb frequently throughout the day. This is accompanied by extreme neck and back pain and extreme auras. I know I have struggled with finding the right doctors so I hope that you have found the right one because I know how hard it can be dealing with the pain.

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I’m at about 150 dr’s in 5 years and no help yet.