Chiari Malformation type 1

I’m going to add some frustrations with my finally being diagnosed with Chiari I. I have had headaches and nausea since age 8 or 9, mostly in the early hours after awakening ( my parents were told I was faking) I have had symptoms of dizziness since age 10. (She doesn’t want to go to school, again faking). Had a hard time learning at school (dual process disability). At 19 I started having the Chiari headaches in the back of my head when I laughed, strained, turned my head too fast, or in major stress. (Never heard of that). Age 20, I started having jaw clenching so severe my jaw locked up and I couldn’t open more than an inch for days til it relaxed. (You’re too old to play games). Later diagnosed TMJ. My dizziness progressed and double vision became an on and off again symptom age 24. (You work night shift. You must be sleeping with your arm over your face and don’t realize it). Age 25, I’m all over the place emotionally and had my first panic/anxiety attack. I was sent to psychiatrics. (6 total - I was noncompliant ). I was not happy being diagnosed with yes or no questions. I had access to the MS5 diagnostic book. I showed the 6th doctor the similarities between bipolar and adhd which overlap. He tested me in an unconventional way and then declared I could not be bipolar. Now I stop seeing the doctor and go on with my symptoms in silence. Age 33, my sister gets diagnosed with Chiari malformation by her neurologist and describes her symptoms after she had a car accident. Same as what I’ve been living with!! I went to the doctor who laughed at me. Age 36, I’m now living in Pennsylvania near my sister for 2 years My symptoms seem to progress. My migraines become worse. Cluster headaches begin along with heart palpitations, and other symptoms worsen with arthritis, and asthma becomes frequently associated with bronchitis. I’m diagnosed as a hypochondriac. I was sent to the cardiologist for the first time at age 38. I told him I think my issues are related to undiagnosed Chiari. He said no. I told him it’s familial. He said no. I said please rule it out, and I’ll stop and do whatever you want. 3 days later I was called and apologized to by my primary and the cardiologist. (15 mm herniation). I quit working in 2010 and that helped with my symptoms. However, things that I found through the course of my life on my own. I don’t sleep on my back, helps with my breathing. I sleep with a feather pillow in a non allergenic pillow cover, helps with neck stiffness and some headaches. I stopped eating processed foods and that helped with inflammation and my cluster headaches are less frequent, My dry eyes improved but it’s too late to help arthritis. I have 2 autoimmune processes along with poly arthritis involving neck, lower back, bilateral hands and knees, and right shoulder. So life is tough. There is so much more but I’ve written a book already. I’ve decided for me no surgery but it’s not the answer for everyone.

I was diagnosed with the Chiari back in 2005 and I was already having problems with my right arm and hand. I had so many mris and scans and finally was sent to the doctor that told me what was wrong. I had no idea what this dr was talking about until he told me I was born with it which really made me wonder why it had never been found. Anyway I was really scared to have surgery around my brain but when I ask what would happen and when he told my I would eventually lose the use of my arms and just the thought of never being able to hug my daughter or granddaughters was unbearable I scheduled the surgery. It went fine. I went back in two weeks everything looked good cane back home and the next day I noticed a little bulge in the sight but just figured it was where they had taken the staples out. Well over the next week or two ur got bigger than a orange so I go to my family doctor. He looks at it says he could drain it but wanted my surgeron to look at it. So he calls my surgeron and they tell me to come straight there. So we head there once in the room I don't see the doctor but his intern. She states there us a problem but I needed another mri before they could do anything. So I have the mri now know this thing is getting bigger everyday. Finally they call,me tell me I needed another surgery because the bulge was filling up with spinal fluid. So here I go back to surgery really scared this time and for the 1st time since the 1st surgery I saw the doctor and he finally looked and his only statement was, You do have a problem. Then he turned and walked away. He did get the problem fixed but I still have severe pain at the base of my skull to the point it effects everything I do it feels like my head is to heavy for my neck to hold up. Its worst 0n the left side but I've had 2 more neck surgeries to fix the disc and all but I only hurt at the base 0f my skull down the sight of that one surgery. Could something else be wrong or is this pain normal and something I've got to live with for the rest of my life because I am no some of the strongest pain meds and they just dull it enough so I just get through the day. I didn't hurt like this before the surgery. But when I told this crazy dr he just said there was nothing else he could do but he would make me a appointment to see a psychiatrist. It was like he did his job got his money and washed his hands of me. So all the other dr ive been to just say its scar tissue. But I'm seeing a new pain management dr who is running all kinds of test to find. Out what is really going on. So wish me luck because I hurt before the surgery but this pain is something im finding harder and harder to live with. It now runs my life if I can even call it a life. But will keep u posted as to out come but in meantime if anyone else has this or had these problems any advice as to what I can or need to do to get some relief please let me know. Good luck with your Chiari Anorwalk. Will be praying for you.