I was recently diagnosed with Chiari, although looking back over my life I see where I have had events many times. My main symptom is headaches. I actually have two questions: 1. My headaches cause severe pain in the corners of my eyes and also the top of my head hurts and feels like it has ice on it. I wondered if anyone else has this. 2. My neurosurgeon recommends surgery; however, I feel my symptoms are not as severe as many other people and I should just try to deal with them. I was recently involved in an accident that caused this flare up of symptoms. I am 62 years old and fear the symptoms will grow worse. Any recommendations on pros and cons of having surgery?
Obviously I don’t know everything that is going on but those don’t sound like chiari headaches or at the very least headache that would be coming from the outer brain stem. If it is from your accident , it takes MONTHS for the swelling to go down. What kind of surgery is he talking about?
The Decompression surgery and then also some surgery on my neck for a narrowed canal. I have a fluid build up behind my eyes that apparently causes the pain in the corner of my eyes. I know I am not explaining myself very well as I am still not familiar with all the medical terms. I have had headaches for years and no one could find a cause. A little over a year ago I had slurred speech with my headache and some disorientation. They of course suspected TIA and after many tests said it was “visual migraines” although none of my symptoms fit. I also spent 18 months not driving about 20 years ago with “spells” of dizziness and falling to the ground. No one could find a cause… even went so far as to claim it may be mental. I now know it was the Chiari because my head feels now exactly as it did then. These past experiences are why I fear things will grow worse.
The headaches sound like the headaches I had when I had Meningitis. That Ice feeling on the top of your head was so bad when I had Meningitis. Do you have swelling in your brain as a result of your car accident? Did you get a concussion? Chiari headaches tend to originate in the back of your head along the base of your skull and move forward to the back of the eyes with a ton of pressure like you have a vice or tournaquet around your head - at least that is what mine were like before surgery. Surgery was very successful for me but incredibly painful with some major setbacks. It was the best decision I made to go forward with surgery. I would recommend seeing a Chiari Specialist to rule anything out. Did the accident cause the Chiari?
Thanks for the information runnergerl. The accident did not cause the Chiari. I had been referred to the Chiari
specialist prior to the accident by my orthopedic surgeon. However, the confirmation of the Chiari explained a
lot of things that has happened to me in my life as I explained earlier. I feel like the accident triggered the Chiari to “act up”.
The accident was actually a 500 pound motorized bed that was in our RV failed and that bed fell about 18 inches
straight down onto the top of my head and fractured T-1. It has been down hill since then. The “ice” is only occasional.
I do have the back of the head pain and pressure, behind the eyes, and top of my head feels like someone is sitting on it.
If I do any type of lifting or exert myself much during the day I get really bad headaches and I feel like I can’t think
straight. It has really started to interfere with my life.
I know my neurosurgeon had told me that anyone who has had head trauma may only be systematic to the Chiairi. I’ve had two head traumas in the past. But runner girl is right,by making sure you see a specialist.
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You know your body best and if your instincts tell you it is Chiari, speak up and make sure you are heard. Definitely look for a Neurosurgeon that specializes in Chiari. It is so important. I hope you find relief and a Dr. that will listen and take the steps necessary to find relief for you.
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