Hi all,
It's a long story, but thanks in advance for reading.
I've never talked to others in a forum such as this, because I feel as though I might not fit into the cancer category. I don't have cancer but I have a brain tumour that I've had since birth. I don't have the same struggles as those with other tumours or cancer, so I've felt like I'm somewhere in-between not ill or sick enough to get help where I may have needed it, but not well enough to do thing others can do. I hope that people here won't judge me.
All my life I have lived with a brain tumour on my brain stem, it has always been inoperable and over time they determined that it was calcified, but has the potential to become cancerous maybe ... they just really weren't sure. My family was told I would die at age 3, I had a make-a-wish to Disney and everything. Tada I didn't die. I was monitored yearly with MRI's until 13 and then not as often because there was no change.
Fast forward to 34, I have my first MRI scan in nearly a decade and the tumour is 3mm bigger and cysts have formed. So they want to wait to see if they cause anything to worsen, and scan me again a year later.
That scan determined they have grown and now I have palsy of the vocal cord, right eye and increased muscle weakness.
They schedule surgery to drain the cysts. No shunt just drain back into the brain.
That was 2 months ago now, and i'm still recovering. I have a large scar that fills with brain fluid regularly and I'm not sure if it's getting too big or how long it takes for that to go away and heal. I struggle with prolonged activities and wonder when i'll ever go back to work.
Anyway, I was hoping to find someone with a similar surgical experience that might be able have some advice, because sometimes doctors don't have the answer.
Thanks again for reading
Peach Grown x
Hi Peach Grown and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like you've had a long and difficult journey so I can understand you wanting to find others who have been on a similar path to you.
As the online community is divided into different support forums I'm going to recommend that you join the brain tumour forum which is a great place to ask questions and share experiences with others who have a similar diagnosis to you.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
