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Posts (3)

Oct 21, 2016 · Chiari Malformation type 1 in Brain & Nervous System

Here is an example. A few weeks ago it was about 715 am. I was getting ready for work and coughed. It felt like a rubber band had snapped on or in my heart. It took a couple of minutes then I was able to finish getting ready for work. An hour later I am at work and sneezed. It felt like someone had knuckle punched me on my left shoulder. The pain shot down my arm. Hand was numb and throbbing arm was in severe pain. I was struggling to catch my breath, sweaty, tingling up the back of my neck and head. Fifteen minutes later, my co-worker had me in the er. All basic heart attack test showed no signs of heart attack. This has been going on for a year now. Usually the pain is a little more progressive not as sudden. Always puts me in bed for at least a day or two. Exhausted, weak, crying for no reason.
I did get a hold of Mayo. We are now waiting on getting an appointment with a specialist in Chiari.

Oct 21, 2016 · Chiari Malformation type1, Addison's Disease, Steroid-induced diabetes in Brain & Nervous System

I have had many symptoms of chiari most of my life but just became aware of it in just the last few months of what was causing many of my issues. I had an mri that showed a 10mm “beak like” and a 6mm. I waited for three months to see a neurologist who was rude and dismissive. Now I am in the process of another referral to hopefully someone that has seen and dealt with this before. I too have become a different woman than I used to be. I used to have my grandson for week long stays, now I can barely handle a weekend. I miss a lot of work. I am explosive angry sometimes and have little to no patience anymore. I have lost friends over it and family is too distant to really care. I have terrible memory now, headaches, back aches, my whole body hurts sometimes. Incontinence, irritable bowel, my heart, tingling in my fingers, numbness in my toes. Gagging when I try to swallow to the point that I have to “work” the fluid down. Ears ringing,dizziness. I hate what it is doing but surgery scares me I think even more. Depression is part of this crazy chiari train we are on. I keep telling myself I am worth more this pain, I am not going to let it break me. Good luck. It really is nice to have someone to talk to.

Oct 21, 2016 · Chiari Malformation type 1 in Brain & Nervous System

I just went and seen a neurologist this morning. I have a 10 mm and a 6 mm herniation and he said he didn’t feel it was significant and no big deal. He said I obviously know more than him and was very rude. I am 42 and the chiari started impacting my heart a year ago. I was able to live with all the other symptoms till it started at my heart. I am now in the process of finding a specialist at mayo in Rochester Mn. I would like to do more of a physical therapy type of treatment.