[Terra]

Thank you Berry and Harrison for getting back to me. Berry-- its encouraging the Artificial disc replacement helped you to the degree it did. Its very hard to sort out whether my balance difficulties etc are related to the hypofunctioning of my vestibular (ear) aparatus as I now have a complete loss of vestibular function on the right side! so even without a cervical spine issue I'm always going to have a vunerablility even though my brain has had time now to adjust. In other words, the left side inner ear canals are now doing all the work and making up as best they can for the right side not working at all. Amazing this can happen, but for a period of time my world was upside down from my perspective-- I could hardly walk! Most people, including doctors, do not have a clue how much the vestibular (ear) aparatus does for them. Our vestibular system in the ear orients us in space and works 7 times faster then our vision. We get our balance from input from our vision, ear and sensory signals coming up our spine. Cervicogenic (neck) dizziness comes from damage to nerves coming up the spine. When there is damage to the nerves there is a change in callibration for the balance system to draw information and we might specifically get a floaty, tipsy feeling and have brief zingers of intense dizziness when turning the head.

So Berry I'm guessing for you, your vision and ear are likely doing OK it was mainly your spinal nerves needing better callibration. Its interesting though that you'd get the nausea too. I'd like to know and I'll be asking my NS how much of my headaches are due to cervical spine problems and how much post craniotomy headaches.

As far as the post craniotomy headaches. I've doena little research. There are several reasons for the headaches and often there are more then one thing going on. This is what the Interntional Headache Society says:

"The pathogenesis of chronic headache after craniotomy is unclear but may involve meningeal inflammation, nerve entrapment, adhesion of muscle to dura or other mechanisms. Modifications in the operative procedure, including the use of osteoplastic cranioplasty, may lead to a reduction in the incidence of post-craniotomy headache by preventing adhesion of muscle and fascia to the underlying dura."

I recently listened to a lecture about post crani headaches. Many of our headaches can mimic regular types of headaches. The idea is we can have "features" of a migraine or cluster headache or whatever. And of course some people already had a certain type of headache problem before they had surgery, ie they were alwasy a migrainer anyway. There were patients in the audience that suffer from these headaches like us. I too am like you and often wake up with a stabbing sensation or some other altered feeling and once I get up I might or might not be OK. Unfortunately things turned recently and the pain ramps up dramatically. I'd always had a migraine feature since these post crani headaches began but now its different. Its like there is a smoldering fire in the forest at all times waiting to take hold and destoy. For you when you wake up, its like your body is telling you you have a spark or ember or a match striking and once you get up the fire is put out. For me there are hot coals, embers, flickers of flames even lapping up small trees etc. Movement and getting jarred around especailly when I travel by air is like throwing gas on the smoldering fire. So right now the idea behind me taking long acting meds is to keep the smoldering fire from even smoldering and preventing the forest fire. I've just recently finished paying off a $10,000 out-of-pocket bill for the ER visits from this past winter. This was the so-called forest fires that got going and once it got to a certain level I could not stop it myself with the arsenal of meds I had at home. Sure I had antinauseates but that didn't stop it just ike what can happen in a real forest fire situation. My PCP even visited me in the ER and saw me "on fire" himself with a headache and vomitting that would not stop. I was like Linda Blair of Exocist fame! This experience has caused me to do more research myself and lead me to revisit my NS because he knows the most about my altered anatomy and could access my neck as well. I'd been giong around to various otther local doctors fro potencial answers and treatemnts but wasn't getting anywhere. At any rate, many CPCH people in the audience have this head pain going on all the time. This is called "Chronic daily migraine" even though its just sensations we're feeling and for me this is a feature of my chronic post crani headache. I was surprised that there is a type of headache called 'stabs and jabs" which might be what you've got as a feature of your post crni headaches. Food for thought. I've been bothering my doctors to help me figure out if I have adhesions sticking to my dura causing the daily pain. This might be more likely due to abscess and bone infection. Really from what I've found there is very little research regarding chronich post crani headaches. I'm sure this is why its so hard to sort things out. Add the neck thing and you become a pain in the neck to your doctors!

Thanks for adding the osteomyelitis info here. Its hard to find info about cranial osteomyelitis, its more common in other areas like the spine. the bacteria that caused my infection was rare as well making it even more of a challenge. I was on IV antibiotics for at least 9 months. Really all the deficits I'm suffering are related to a cascade of complications making it difficult to overcome one thing without opening another can of worms. I start to get excited that maybe I'm going to be able to move forward, but then whatever I do would have huge risk factors attached. I want to be an active vibrant person, I don't want to lay dormant somewhere.

I'll stop now. Thanks for listening and hoping with me!
Terra