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!
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.
Thank you!
Jan
There are still other medications to try - more in that class - and botox and other things to try. I hope you can find help.
Thank you! I have been on both neurontin and Topamax but neither has helped. But it helps to know that there are different kinds of neurologists to check with. I will keep searching. Thanks again.
Jan
Ack... I thought there was a forum - either it is gone or my brain is (equal chances there LOL)...
I would also ask around or look in the health pages in neurology as well? But do keep us posted.
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.