Colloid Cyst community resources
The information on this page has been put together by our community for people living with a Colloid Cyst. It has been designed to signpost you to support and services that other members of our community have found helpful.
We plan for this page to grow over time, so if you have anything that you would like to share on here, please get in touch: email@example.com
The challenges of living with a Colloid Cyst
“Getting a brain tumour diagnosis does change you and your outlook on life, so don’t try to be the same person as you were before but embrace your new world and the challenges that face you.”
“A big thing is behaviour and personality changes – emotions. I didn’t understand how much those things would change. I could have used warnings and resources for that.”
“I’m told that my headaches aren’t related to my cysts. That’s hard to process and seems confusing to me.”
“It’s the same diagnosis and symptoms, but apparently, they’re ‘not related’. I’m told the cyst was an ‘incidental finding’ despite being in response to headaches.”
“The word ‘cyst’ groups so many things together that are very different. It’s not about what it is, it’s about what it does. It’s important to know how about the third ventricle, how cysts on the brain are formed and classified. The consequences and significance of saying ‘harmless cyst’ is huge.”
Getting support and information
“My specialists have been great Mr Laurence Watkins, Consultant Neurosurgeon, NHNN and Mr Harshal Ingale, Neurosurgeon, QMC Nottingham”
“brainstrust has supported me greatly. After applying for my brainbox, Molly reached out to me to introduce herself as the support specialist that covers my area and has since been a big support.”
“Support groups would have been helpful and being signposted to brainstrust. It is useful to hear others’ stories.”
“There is no right or wrong way to deal with a diagnosis, but my advice would be to take some time to yourself before diving into the world of other people’s experiences until your initial emotions have settled down and you are ready to deal with that side of things. Spend time initially understanding what is going on for you and how you would like to deal with your own journey before seeking stories of other people’s progress – as all our journeys will be different and it is best not to scare yourself with ‘what ifs’ and comparisons to other patients.”
“I didn’t have much information at first. I found the Facebook groups the most helpful. They were supportive too.”
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