Craniopharyngioma: How do you cope with the head pain?

Posted by shaarkirah @shaarkirah, Jan 25 9:33pm

Hi everyone
I was first diagnosed in 2011.
After 5 days of severe headpain.
I was quickly diagnosed and swiftly operated on the same year.
The Tumor grew back rapidly, and another operation in 2012, Then in 2016, 2020, and 2024.
That's 5 operations, and this damn thing keeps coming back.
My main beef with this is the *HEADPAIN* I have had , 24hours a day 7 days a week now for over thirteen years.
The only thing that changes is the severity of the pain, after this last op the average pain level sits at about a 6, before the op the average daily level was at an 8.
I was wondering if anyone else suffered with this severe headpain.
And I say headpain because I had migraine when I was in my early 20s and I'm over 60 now, but this headpain is 10x worse than a migraine.
I even contemplated suicide a few years ago because of the pain.
I am on strong painkillers plus all the other meds. And sometimes even the strong painkillers don't work and that's when I end up in hospital for tramadol shots.
Who else suffers like this and what do you do for it
Thank you.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 7 5:29pm

@shaarkirah, I expanded the title of your discussion to reflect your question. I'm also tagging @catty4 @susieq8 @rubyjane and others who have experience with craniopharyngioma.

I can't imagine dealing with such strong head pain and pain killers. Do the tramadol shots in the hospital help? How long does relief last? What, if anything, helps distract from the pain?

riggonian | @riggonian | Feb 9 8:41am

I don’t know that I have any answers for the type of pain you are describing. At the far end of the spectrum is a pain clinic. It is possible that you have already investigated this. I had a successful transphenoidal resection of a large craniopharyngioma in the year 2000. The only other thing I would do is recommend contacting the neurosurgeon who performed my surgery to see if he had any thoughts or contacts. His name is Edward R. Laws. He is one of the best authorities on pituitary tumors in the country.