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Yes, I have had my brain stem “swan” removed three times. Started when i was 9 and have been messing with it for 30 years. Have always felt this way. It doesnt help that the dr.’s tell me that my body will not be able to recover from the next resection so it will just have to ‘grow’ me to death. I laugh alot and that seems to be the very best medicine.

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Replies to "Yes, I have had my brain stem "swan" removed three times. Started when i was 9..."

Thank you for your reply…what is a brain stem swan? I feel bad complaining beings you have delt with this since you were 9!!!! WOW!!! You have to be a strong person!!! I wish you the very best with your ordeal!!! What next for you????

I’ve named by tumor the ‘swan’ because it is a schwannoma. What’s next for me ? Nothing…Because the tumor exists in my brain stem and is inoperable the dr.’s tell me that my body will be unable to withstand the trauma of another surgery. So…I gues the ‘swan’ and I will just grow together until…….

Do you have to have regular MRI’s? Did you have your surgeries at the MAYO clinic? Sorry i have a lot of questions…hopefully it will remain the same size for the rest of your life!!! Sounds like you have a positive outlook! I guess you have been dealing with this since you were 9 so it is just part of life. (??)

I am new to the Mayo community. I was diagnosed with a large meningioma on my brain stem in 2004. I had surgery. 7 years later I am having radiation. I would love to meet either in person or online other people who share this type of tumor in the brain. I am in Waterford, MI. I am confused and concerned about the radiation treatment.

I didn’t have the same type of brain tumor as you so, I can’t really answer your question….I am assuming the Mayo clinic is advising you of this radiation? Did they explain to you why? I hope you find the right answers!!!! keep us posted. We all can relate somehow to any brain tumor issue.