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robinahoney
@robinahoney

Posts: 1
Joined: Oct 24, 2016

Really worried

Posted by @robinahoney, Oct 24, 2016

Hello I’ve had headaches for 3 months now with no respite at all , 6weeks ago I had a clear ct scan , now I can’t bend ,strain, laugh etc without it becoming worse, I forget words , and have a drooping eye and face every other day ! Been on every drug going, and none have helped !yesterday I was given an injection of sumatriptan, which left me in severe agony the worst headache I have ever had ! Started me on steroids today , I’m waiting for an MRI now with a routine 6week wait , I know everyone who has a headache thinks they have a brain tumour, but I’m worried and wondered if anybody had the same sort of story as me ty x

REPLY

Hi Robina, I can imagine you’re worried. This must be very concerning for you.
It sounds like you’ve had many tests with long wait periods in between. Might it be time for a second opinion? If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.

In the meantime, let me bring other members into this conversation who may be able to offer their thoughts. Please meet @robinjenkins70 @cynaburst @dmedina71 and @shellsk24.

Robina, what explanations have the doctors given you thus far?

This sounds horrible. Our experience was that when my daughter had her MRI and they saw something concerning, they called us that day-actually within a couple of hours of our leaving the appt. If you wait 6 weeks to find out MRI results, its likely not a brain tumor-but something is causing the pain. Could be hydrocephalus-which is fluid build up in your ventricles. That was actually the reason for my daughters headaches and not the tumor. Her tumor is blocking a ventricle causing the fluid build up. I hope you get information soon. If you can get to the Mayo Clinic, I’d suggest going that route before you wait 6 wks. Bless you!!!

I also had hydrocephalus from a brain tumor. It did cause unbelievably terrible headaches. They were like a vise tightening on my head.
I hope you get an answer soon. Where are you located?

@robinahoney Any update? My husband had terrible headaches, which turned out to be a pituitary tumor resting on his optic nerve. Noone could find out why the headaches until he went to the eye doctor, and he discovered the tumor. Praying you find relief soon!

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