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Ependymoma/subependymoma of the 4th ventricle

Brain Tumor | Last Active: Apr 5 10:42am | Replies (61)

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@jcorcoran

@annrmarie and @beckyziegler. First off I want to say my heart and prayers go out to both of you and I want to thank you for sharing. I can only imagine what you are going thru and I hope if my only option in the future is surgery, I deal with it with same strength you have. I had my appointment and both my Neurologist and Neurosurgeon said I should wait 3 months and do anther MRI to check growth. With that being said, my Neurosurgeon also said if it was totally freaking me out and I wanted it out of my head, he would take it out. He said risk of complications was 5-10%. I left there somewhat numb as to what I should do. I have great insurance now which was how I got to be seen at the Mayo but no one know what the future holds. I was hoping to retire in a few more years but I don't know if I should/can with this in my head. I was so worried what MRI in 3 months would show and wished the 3 months would just be done. It then occurred to me that I had several older MRIs of my upper neck from a spinal fusion plate surgery. The plate is at adams apple level and the tumor is pretty low in the brain. I wondered if the MRI had overshoot and possibly showed the tumor. I grabbed the disk I had from 2014 and although I am not a brain surgeon, I thought it showed. I then got a hold of my MRIs from 2005 and 2009 and I thought they also showed them so I sent them to the Mayo. Both the Neurologist and Neurosurgeon complimented me for thinking of this as they both agree the tumor was visible on all MRIs. They also could not believe it was missed in 05 as it was pretty clear. I am actually very glad they missed it as it gave me 14 years that I did not have to worry about it. They said since the 05 MRI was for my neck, the image of the tumor was not as good as they would have liked but it allowed them to estimate it has grown maybe 25% in 14 years. They now want me to come back in 9 months to get a better image and verify their growth estimate. This is obviously a very big relief for me. I still am not sure what the future holds but for now, it looks a little brighter. Your strength is my inspiration and I am very thankful you have shared your stories. I will continue to monitor this sight and hope you keep posting your progress. I will also keep both of you in my heart and prayers.

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Replies to "@annrmarie and @beckyziegler. First off I want to say my heart and prayers go out to..."

I thank you so much for your prayers. It is good to see someone advocate for themselves because I know they can only do what they think with the information they have. I have to agree with them, I'd wait. My surgeon said what I had was slow growing and there is no telling how long it was there. I will continue to pray for you as well. Thanks again.