Jul 12, 2012 - 12:40 pm
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