I had surgery in the right temporal lobe for what was thought to be a tumor. It turned out to be an arterio-venous malformation. This tangle of blood vessels was removed. It was very deep. Right after surgery I had extreme pain that only IV meds could help. When sent home with pain pills, I had to be re-admitted two times because of the unbearable headache. The neurosurgeon and his residents would tell me that it's not supposed to hurt. They looked at me like I was crazy. When I was discharged the last time, the resident said that I didn't belong here with the sick people. So now, after 11 years, I still get post craniotomy headaches. I am sensitive to light, loud noises, even a breeze blowing through my hair in that area. The headaches start with a tightening up of my scalp over the surgical area, and eventually develop into the actual headache. I haven't been able to find any doctor who can help me. I live in the Chicago area. Any ideas, anyone?
It is likely that a nerve was hit and you probably have something like fifth nerve palsy or trigeminal neuralgia (both names are different for the same thing) or a different nerve was hit and it has the same effect.
You have to see a different type of neurologist for nerve pain. There are actually medications that help - they do have side effects so you have to try out several to see which one is the most tolerable. I have it myself and tried a lot of the drugs. I settled on topamax, but a lot of people like gababentin (neurontin) or keppra and there are several others that are mostly epilepsy drugs.
So, there is a forum here that covers trigeminal neuralgia. I would go there and see what advice they have. I would also search in the mean time for docs that treat that as they would be able to treat you - try meds first before you go for drastic surgical methods oh and botox is also an option.
Best of luck and pain is a terrible misery - why did they not send you on to a nerve person before? My ENT identified mine and helped me.
To answer your question, I don't know why I haven't been referred to a specialist who might help. It might be because at that time, in 2001, they didn't believe that pain was a significant problem with brain surgery. Maybe they didn't believe me.
Since then I have read articles from medical experts emphasizing that pain is indeed an important issue to address. And the tone of the articles leads me to believe that it isn't easy to convince many neurosurgeons. I actually followed up with my own neurosurgeon a few years after surgery to ask for help with this, and he totally blew me off. I figure he wouldn't want to admit that he hadn't been as helpful as he should have been.
So I've just been told there is no cure, or help for that matter. And no one suggested that I try looking further into this. I appreciate your suggestions and will try to do more detailed research. It's true that the patient really needs to be her own best advocate and be well informed.
I completely believe you, sadly. Pain is not a quantifiable thing and the docs are not really good with it. Even pain management is rather squidgy to me - I went by was not thrilled that they did not ever really look to source, but rather just tossed pills and things - which made me crazy. I want to eliminate it by finding the reason and working on that, not living in a drugged haze where the docs and everyone else are questioning the meds I am taking.
I use acupuncture to the extent I can - but it is sadly not covered well.
I do hope you can find help - and please do keep us posted on what you did to help and do feel free to post here on your progress or lack of to whine or celebrate!
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