I’m sorry for all of the silly questions, but after the NL visit yesterday, I’m starting to second guess some things. I know I’ve read on here or somewhere before that chiari headaches can be centrally located, on the side, or behind the eye (or at least I think I did!), besides the ‘normal’ back of the head pain. My headaches radiate toward the back, eventually, but most often start around my right side of my head and behind my eye. NL says chiari headaches are only in the back of your head, and my headaches are not chiari related. Just going to check and see how many of you have only back of the head headaches vs other places. Maybe these aren’t chiari headaches if it only hurts in the back, bc mine definitely aren’t contained to that region!
Mine are most often on the right side, that is why I demanded an MRI b/c they were in one place more than any other. I do have a lot of lower head and neck pain also.
My headache pre- decompression was primarily the whole right side of my head, face, and jaw. On occasion it would flip to the left. Since the decompression that typical headache has completely changed. The pain is much less and more diffuse around my whole head. With Chiari there are so many variables. When there is crowding at the foramen magnum ALL of the tissues in that area are crowded - lt and rt side nerves, veins, and arteries. Unless the area is opened up how would anyone know exactly which structures are compressed? It makes sence to me that the pain is different from patient to patient. NLs are good for a lot of things, but generally speaking they are not the best to deferre to on Chiari (i agree with Razzle). I would take everything he/she says with grain of salt and find a neurosurgeon who SPECIALIZES in Chiari.
Jenn
I often had headaches behind my eyes. I thought I had a perpetual sinus issue! Some headaches were in the back of my head. Other times it seemed like my whole scalp hurt. Since having surgery I rarely have headaches of the type I had before. I get what I assume are normal headaches when I'm dehydrated or having a tense day and they are fairly easily resolved.
Laken,
Razzle hit the nail on the head. (not a helpful analogy but...) NL are usually useless. They do not see enough of patients with Chiari to know what they are talking about. Bless their hearts (not really) but they don't know, understand and in most cases care what we go through. A Chiari headache can be anywhere. It kind of makes sense that it would just be near the area of obstruction but it doesn't because the pressure that builds up in your skull can cause awful pain anywhere. Mine actually starts in my arm. My arm gets sore then it moves to my jaw and face then behind my eye and then all over if I dont have something to help it. I take Zomig and it really helps. It's a migraine med but it works with my Chiari.
It's hard to find doctors to listen and help. I gave up on NL's I found a wonderful PC that listens and works with me and helps me. It took many visits to many doctors and a lot of doctors telling me I wasn't feeling what I was feeling to find her. Unfortunately it's exhausting and often times humiliating trying to find someone to help you but you need to try and find a doctor who either knows about Chiari or who will work with you and help you. In the mean time we are here for you.
Wendy