Insula Glioma

[sandy129]

Hi, I am a 41 year old female with a "benign" Insula Glioma.  It is 9+centimeters by 3+.  It cannot be operated on(or I am not willing to take the risk associated with.) I saw the neurosurgeon yesterday and he says I am 100% neurologically fine (I disagree and I'm trying to find a neurologist who can see me before the end of June.) My question is- I have had a headache for more than a month, it lead to finding the tumor. The neurosurgeon says these terrible headaches are coincidence.  How can I have a golf ball in head and a doctor tell me that is not the cause of this headache that has made my so miserable?  I was so sure finding the tumor meant curing the headache and now I have a headache and a tumor.  I see my Primary tomorrow and she is willing to help, but I don't know what to do? I may have a few years but this headache is so bad, I don't know what to do.  Any ideas?  

[rumpled]

I agree - find another surgeon or research new techniques. You may have to travel though.
The headache is not a coincidence - even small tumors cause them.

[sandy129]

Thank you Jennifer.  I will follow that link from the surgery thread and keep trying to find someone who can help with the headache.

[testdeprived]

this post makes me  mad because both a neurologist and a robertwoods johgnson neuro surgeon told me the same thing. im pretty sure golimas are more serious than what i have so if mine is causing me pain i cant imagine whats going on with yours. i cant imagine how these doctors get their working degrees. i pray that we both find a doctor who will isten to us.

[sandy129]

Hi, well the headache is still there.  I have tried sumatriptam (the migraine meds) and now low dose steroids for the last three days(10 day course).  I spent hours yesterday with ice on my head and taking oxcycodone. My oncologist swears he can and will help me and asked me to call him to today after being on the steroids for the weekend and let him know if the they are helping.  I wanted so much to spend time with my kids and get my life in order in these few weeks i had before radiation and the time is wasted with this headache. I had every intention of not wasting a minute and now those minutes are about headaches and drugs. Trying to be strong but feeling down. It simply has to get better soon.

[sandy129]

I just wanted to correct my first post, my tumor is 4+cent by 3+cent. I dont know where I got the 9 cent. sorry.

[rumpled]

I hope you can find something to get the headaches under control.
Of course, the steroids will bring about new side effects if you have to increase those.

There is no editing here but glad that the tumor is smaller.

[sandy129]

HI I know it's been a long time but it's been six months and my scans show no growth, so I have put off the radiation and the oral chemo. They can't get a biopsy but they are calling it a II. Dana Farber and Mass General say different things about treatment ideas. I still suffer terribly from headaches and take lots of pain meds and see people who try to help me. I am angry a lot but I try hard not to be. I eat well. No meat, lots of healthy stuff. I work hard to focus on my kids and my time here. It's all good. I will find a good place.
sandy129

[rumpled]

Have you thought about perhaps acupuncture or biofeedback for pain? Pills after a while get to not work and then have a lot of side effects...
Are you seeing a pain management doc?

[sandy129]

yes, I am in a pain clinic and a headache clinic. Everyone has ideas, and none of them agree.  I am looking into acupuncture but it's not covered by insurance.

[rumpled]

Yes, I pay for acupuncture even though it is not covered as it helps me a lot and I do not like pills.