Haemangioblastoma (Brain stem non cancerous tumour)

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Hi I’m new to this group.  My daughter has had 4 operations to her brain & gamma knife (to reduce the tumour) due to the location they can’t remove the tumour.  This can take up to 18 months before we know gamma knife worked 

however she had one cyst (a reservoir was inserted into her head to drain the cysts) they tried but it hasn’t worked 

she is 28, a healthy mum of 2 children, mis diagnosed as extreme vertigo but after much pushing the MRI showed her diagnosis as a brain tumour emergency operation done.

I wondered if anyone has had this condition. The more they operate the more cysts grow!  She now has 4 cysts.  On steroids 

her life has changed dramatically I hope to hear some positive news of someone gone through the same & survived it ??? 

I hope this reaches someone to get a reply 

kind regards 

  • Hi  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 your daughter has been going through a great deal and it's natural for you to want to read positive stories.

    The online community is divided into different support forums so I'm going to recommend that you join the brain tumour forum where you can ask questions, share experiences and get support from others who have this type of tumour.

    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 daughter's diagnosis and treatment 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.

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