I've just seen my neurologist and she said my mri scan showed that I have chiari and said mine is "symptom free". Well I've suffered from mild to crazy headaches from my teens and they have been getting more frequent and worse. I've always before this been told what I have is migraine and/or tension headaches and since before I got my scan results I believed that was the case. Now that I've read about chiari all my aches seem like they've been explained! So what would you say, does this sound like my aches are chiari related?
My aches are at the back of my head or behind my eyes. They can feel like a knife been pushed trough my brain. Or like hard pressure at the back off neck. They can be mild or be so bad I can't move and start to vomit, which is horrible since that makes it worse. In a good month I have like 5-8 days of pain (painkiller needing pain) and in a bad month I get like 15. Usually it starts at night or maybe in the afternoon. Many mornings I wake up with a headache that can go away when I get up. Or it might not. Also there are head positions I avoid like doing push-ups or slouching on the sofa, they always make it worse or can start a long achy period. Also while in pain movingly head at all makes the pain shoot trough the roof.. Other symptoms I don't know if I have.. I've been really dizzy but my blood pressure is low so it can be that. Stress seems to make my aches more frequent. Also i have a feeling a slight pressure almost every Morning.
I am certainly no expert, but it sounds like the symptoms are Chiari. I attributed my dizziness/lightheadedness to my low BP as well. Then I was diagnosed. I feel like I am in the beginning of my journey, but if you disagree with the neurologist, see if you can get a second opinion with a neurosurgeon. Take your MRI with you. 
I totally agree that you need to see a neurosurgeon. Four days before I had my emergency decompression, the neurologist told me that chiari was just something you are born with and had to learn to live with. The neurologist I have seen since tell me to go back to my neurosurgeon but at least they are being honest that they don't know what to do with me. :-)
Hi, I was also told that my CM is "symptom free", it was a "finding"....well the symptoms just kept coming so the NS ordered another MRI with the CSF flow study and the results came back that my flow was completely diminished so that explained everything. Hope you get some relief soon.
Please go and see a Neurosurgeon who specializes in Chiari. A neurologist is not an expert in Chiari. Headaches are caused by Chiari, that is one of the main symptoms.
I think you should go and see another Neurosurgeon remember not all of them know about Chiari, the one that saw me at the hospital told me not to worry I was born with that deformity so he decided to do a C2 and C3 block to control the neck pain and the headaches. Needless to say that I left the hospital with the same neck pains and headaches so I went to see another NS and he seems to know a little more about Chiari he’s suggest for me to have physical therapy to strengthen my cervical and medication for my pains and to reevaluate me after the physical therapy. I to have those same symptoms I was just diagnosis with Chiari because I was getting these weird headaches in back of my head with numbness also with neck pain that would go down my shoulder and inside my eye socket. I sometimes think I’m going crazy I’m 53 years old I’ve kept myself in good physical health but have notice that my memory is not doing so well apart from my balance. I hope this will help you, your not alone we all have to keep searching for the right doctor. dizzyt.
Yes, you definitely need to see a Neurosurgeon, but make sure it’s one who commonly deals with Chiari. A neurologist is most likely to tell you its just common headaches, and they’re better just to help medicate you.
Luckily my NS specialized in Chiari and as soon as he saw my MRI the first thing he said was I needed surgery, that was the only thing that would relieve my symptoms.
Are your headaches just stabbing pains or are they pressure headaches with stabbing pains?
My symptoms before my decompression surgery were extreme pressure headaches- I felt like my head was going to literally explode- I just wanted to drill a hole in my head to release it. It was the worst in the morning when I woke up- I would scream from the pain. After a few hours it would dull down to where I could at least move, but it was accompanied by vomiting a lot because it was so bad. And it was mostly isolated to the back of my head, but could also feel the pressure behind my eyes.
I had horrible dizzy spells where I would collapse on whatever I was next to and I couldn’t walk or see.
I had a lot of vision problems- double vision, blurred vision, vision disturbances like seeing spots.
My ears would ring or my hearing would go out in one ear for a short time.
I also had a lot of pressure in my neck and stabbing pains.
Plus numbness and tingling in my arms and hands. Sometimes pins and needles, sometimes extremely painful.
Do any of these sound like your symptoms? If so, its definitely Chiari related, and don’t let anyone tell you otherwise. My primary doctor tried to tell me it wasn’t, but as soon as I told my NS he didn’t even have to think about it.
After my decompression and leak repair surgeries, I’m still having slight pressure headaches (nothing like before surgery) but I still have increased intercrainial pressure as my spinal taps have revealed and my NS is considering a shunt, but I have to have one more spinal tap to make sure its necessary.
I’m sorry this was long, but I wanted to share what my symptoms were so hopefully youcan relate and know what to talk to your NS about.
If you find a good NS, they will listen and help relieve you of this. Its very debilitating and eventually will ruin your life. It did for me anyway, it took a year before I finally got to see my NS, and by that time I really had no life because of the headaches.
Best of luck to you!