Hi, I'm the new girl in town. I had my first neurosurgeon appointment last week and I'm confused. I have a 2.5 cm meningioma called Hugo but apparently it's perfectly fine and not doing anything. According to the consultant it doesn't cause my symptoms like dizziness, headache, balance issues, sensitivity to smells, comprehension problems, concentration and word finding problems, mood changes,...but he don't know where they come from. However, they will contact a hospital in Birmingham to check if the tumor is suitable for radiotherapy. 🤷♀️ I'm really annoyed because there must be a reason for it. I'm not myself and it interrupt my studies.
Sorry for the rant. X
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BirgitAllport
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Hi - welcome to this lovely group and feel free to rant! I’m no expert, as my meningioma was 7cm when discovered & removed. All I know is that many of the symptoms you describe are common amongst others with m’s (and mine) and most of mine improved significantly once it was removed.
Thank you. I thought I'm losing it. Why do they they the opposite? They should know as doctors. How can I trust them if they don't take our issues serious. I'm glad I asked here. Thanks Andy 😊
Doctors are just ppl- most don’t have a calling- it’s a job to pay off mortgage or whatever . You have to be your own advocate like for most things on life.
Hi, I have a very small meningioma and was offered radiotherapy but the doc offering it to me told up to 10 years later you can have pretty bad pain coming from the tumour as it stops it growing I think she said but only for a number of years. I have to say I said no to the treatment they will MRI me every 6 months and lots of docs checking on me either way. 2 weeks down the line I am glad I said no, the door hasnt been slammed in my face.
A friend suggested I take a notebook and pen and write everything down, follow up on notes/ names/ processes etc and ask ‘ if I was your family, would you be recommending this? What other alternatives are there? I’d also get second and third opinions if necessary.
Seriously don’t understand why ppl think doctors are something special.
Sure some are great but lot of them just did well in high school , have little imagination, lived in uni bubbles of other similar people - some barely have emotional or communications ability that would be acceptable in private sector- so it’s up to you to look out and be your own advocate or have someone go with you- like any meeting, be fucking prepared, ask questions, what outcomes are expected and follow up on them like you would with anything else ! Good luck
Hello, I'm new here, I only joined the forum today. I've been diagnosed with a small meningioma and I'm waiting to see a Neurosurgeon. I'm also experiencing some of the symptoms you mentioned above but I also have numbness down my left arm.
Thank you. I'm glad I'm not alone. I thought I'm loosing my marbles. I don't have numbness but I randomly loosing strength in my left arm and drop things.x
new girl in town it is a must to get a second opinion sometimes a third.. especially when you are dealing with something this srs.... i was misdiagnosed by an idiot of a neurosurgeon who had me doing therapy on my neck... after hearing my symptoms were numbness on my right arm and face with speech problems... thank God my dad mentioned it to his neurosurgeon who guided me and it turned out to be low grade glioma left frontal lobe... ya.. so just do that... very important... all the best
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