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Brain Tumour Concerns

Pazza
Posts: 4
Joined: Apr 2012

I am really concerned at how I have been treated since my diagnosis of a ‘low grade’ glioma.

I had an MRI in January to investigate hearing loss, which incidentally found what they think is a ‘low grade’ glioma. I was told by an ENT consultant that I had a large mass on the ‘left side’ of my brain (glioma or anything about the finding or how to deal with it was never mentioned). I was told I would be refered to see a neurosurgeon. I waited for 3 months, no appointment, info or anything other than knowing ‘a large mass was found on my brain’. I had to eventually obtain my scans on a disc, with a bit of hassle, then take them with me to see a neurosurgeon privately and pay £300, which to be honest I couldnt afford but I felt I had no choice as no one was assisting me or giving me an appointment. I saw the neurosurgeon, he agreed that it was a low grade glioma 2cm x 2.5cm in my parietal lobe and said he would treat it conservatively, and I was told I would get a scan in another 3 months, which would be 6 months from the previous scans. I have now had another scan, the tumour they have said is stable although I can see that it has grown to 2.5cm x 2.5cm, is brighter and there is another ischemic lesion measuring 0.7cm (I obtained my scans aqain). I have just been told over the phone after trying to find out if I have an appointment, that my N/S was just going to send me a letter, not even see me and say that it is stable so keep watching, don’t know how long for this time, don’t have the letter. Is this normal? I have not discussed any approach or my wishes or been given any information or support whatsoever. I had a number or symptoms appearing recently and saw my GP who refered me to a neurologist, he knew I had a brain tumour, but said that the symptoms I had were just caused my stress and were migraines and told me to take asprin. I find this strange that I have never had migraines before and suddenly get them when I have a brain tumour, he said that the symptoms were not related to my tumour. I have been under extreme stress before when my daughter was in hospital with a ruptured spleen and I thought I woould lose her but never suffered from headaches, couldnt sleep and lost 1 1/2 stone in a few weeks but no symptoms like I have just now. My symptoms are – Nippy headaches(wake up with them or brought on by movement, also worse when bending) with additional sharp pain in one eye and at the top of my head. Feeling very hot like my temp isnt regulated properly, very blurry vision, seeing balls of fire in my peripheral vision, dizziness and vertigo type symptoms. I now suffer from travel sickness which I didnt before. Can anyone advise if this IS symptoms of my tumour and if this is the usual approach they have experienced, with given no appointments/follow up etc? Many thanks for your help. Pammie x

Tubbs
Posts: 51
Joined: Jul 2009

To put it bluntly, this is b.s. YOU are the person with the concern...if you think something's not right, listen to yourself and have it checked out.

By all means, you should get a second opinion from a different neurologist. Sounds like you're in the U.K. and Idon't know how the system works there, but I would suggest you do whatever you can do in your power to get an appointment. Here in the states, you often have to yell, stomp your feet, etc. to get something done at times. You need to do the same thing. Just get it done and don't back down until you have an answer you are satisfied with.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

You need to take charge, even if that means being a pain in the butt at the doctors office. Keep calling them, do not wait for them to call you. I have had the same issues with my daughters first NO, pcp, etc. I moved her to a new hosp and cancer center after demamding her records and it was a whole new world. Caring and honestly concerned. Do some research and go with your gut.

umcrn
Posts: 22
Joined: Jun 2012

yes I agree! Start hounding the doctors! Your symptoms sound like the ones I had for MONTHS before my tumor was found because my primary kept telling me I just had migraines.
I would wake up with awful headaches and they would last anywhere from hours to days. I had nausea and vomiting, blackouts if I stood up to fast, progressive vision problems and eventually pain situated directly behind my right eye and right eye swelling/buldging. To be honest, when I finally got myself into a neurologist on my own, I was not surprised in the least when he said I had a brain tumor (after MRI of course), it was the only thing that made sense to me after everything I had been going through.

Definitely fight with the doctors to get in and be seen, get another MRI if you think you need it and change doctors if you have to! You need to feel you can trust your medical team. Good luck!

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