ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: stoneaxe on January 02, 2009, 04:02:21 am
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I've been getting sharp spikes of pain that seem to originate from my tumor(left ear) and shoot across my head...seemingly up and out from the right side of my forehead typically. I had radiosurgery for my AN 4.5 years ago and they've been happening 2-3 times/week sometimes a lot more ever since. They started about a month or two post op. Anybody else having similar issues? I had proton beam radiosurgery done.
The reason I ask is because I had a recent visit with my neuro and he said he didn't think they were caused by the tumor or surgery, that they were likely muscular. I'm beginning to think he's a hack. This is the 1st he's ever mentioned that they might not be related to the tumor and i'm pretty positive they are.
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Hi there,
Plenty of folks on this site have headache stories to tell--they'll chime in soon enough. Sounds like you might want to consider a new doc? Also, I've been wondering, your signature says that your tumor was 6mm before treatment and is now 11mm. Is that correct? If so, are you watching it and considering future treatment? Great picture, btw.
Marci
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I was wondering about that too, Marci...
K
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Stoneaxe,
I too experience the sharp pain spikes you have described. I would have to agree with you, your neuro might be a hack. I too was seeing a hack and he couldn't understand why I was experiencing so much pain. The ENT I was seeing was also useless. From what I understand neurosurgeons only operate, they do not treat symptoms or pain. I am on lots of drugs like you, neurontin, toradal, effexor and ativan. I have been off on disability since April of 2008 because of the sharp pain spikes, headaches, ear pain, facial pain and concentration issues. I also was on topamax for awhile with little or no relief. I work for a Credit Union. When dealing with peoples money one needs to be alert, pain free and refreshed. Fatigue is most debilitating when combined with headaches, facial pain, sharp pain spikes and chronic sinuses congestion.
There are many wonderful caring doctors out there, seek a second opinion or third. There are many experts here on this forum who have helped me. Continue to post, inquire, comment and ask questions. I personally think we on this forum have more knowledge than any doctor, since we are living day to day with this.
Anne Marie
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Stoneaxe:
I had sharp spikes of pain on my AN side for a couple weeks immediately following CyberKnife treatment. They would only last a few seconds and happen about once a day, but they were alarming. I'm quite certain it was related to my treatment, as I'd never experienced anything like that before getting CK. Thankfully, the sharp pains went away after a couple weeks. A number of people on this board have reported similar pains following radiosurgery.
Based on what you said about your doctor in your post, if it were me I'd get another doctor. Or at least try another one on for size and see if they seem more informed.
Best wishes,
Tumbleweed
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Actually I should clarify. This is my neurologist not neurosurgeon. I've been seeing him about two years and have had a mixed opinion about him. In some ways he has seemed very good...then he does something like this that makes me think he just doesn't really get it. I hate the thought of starting to look for yet another Doc.
I always figured the spikes were part of the package. I've mentioned them numerous times to various Docs and always just gotten that attitude. One of the difficult things dealing with this has been the attitude of some doctors. You explain what you're going through and then get the third degree as if they don't believe you.
I'm not on many drugs yardtick....the docs have sure tried to push them at times but after almost getting hooked on hydrocodone for the headaches I said enough was enough. I want my head as clear as it can be and the drugs don't help there. I'm on a minimal dose of topomax 75mg..just enough to make the headaches manageable.
Yeah...after 3.5 years of no growth my March MRI had jumped up to 11mm....not happy....the last one was the same..still at 11mm. I have another scheduled for March....I'm back on a 6 month schedule.
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I always figured the spikes were part of the package.
Not true; I never had spikes.
As far as the doctor change goes, despite the fact that it's time-consuming and not a necessarily pleasant thing to do, IMO you need to do it.
Although you are currently watching & waiting, if and when you get to the point where you decide on further treatment, you need a doctor or doctors that you have confidence in to treat you.
Jan
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i occassionally (not too often) get the sharp pains. from all my researching, it seems like it's some kind of neuralgia, probably from damage or stretching of nerves in the tumor area. my neurologist said many unexplained sensations happen after the nerves are damaged. i heard about taking neurontin for it, but i don't feel mine are debilitating enough. i feel for you. patti