Recurrence of adult 4th ventricle ependymoma
Hello, I am 47 years old. Almost 2 years ago I was diagnosed with a very large (6cm x 6cm) grade 2 PFB ependymoma in my 4th ventricle. I had surgery to remove the tumor. My neurosurgeon said it was a gross total resection, meaning he got it all. I did not have any treatments other than surgery. I have been getting MRI scans of my brain and entire spine every six months.
My latest scan shows a new tumor or regrowth in the same place my tumor was removed from. It is very small, only 5mm currently. My surgeon wants to wait and get a new scan in 3 months to see what the tumor does and how it grows and then talk next steps. Radiation was also mentioned to me as a possibility for stopping or slowing the growth.
I have significant impairments from my tumor removal surgery. The major ones are balance and coordination problems, vision changes, headaches, neck pain, swallowing issues, loss of sensation to my dominant hand fingertips, and muscle spasticity in my left thigh and left back.
I am hoping to connect with others who have had recurrence of a 4th ventricle ependymoma to find out what course of action you took and how things turned out.
Due to the significant problems I have had since surgery I am extremely cautious about doing any radiation or having another surgery if the surgeon is going to try to perform a gross total resection again.
My thoughts are that last time they said they got it all at a cost. To me that cost has completely changed my life in a negative way. Now to find out he didn’t actually get it all and I suffer from all of these problems just makes me angry.
I would have much rather had my surgeon leave a little bit of my tumor and not damage my cranial nerves and other parts of my brain and have to have repeat surgeries to remove most of the tumor as it regrows if it causes me symptoms.
My surgeon is open to doing this now, I just wish he would have given me the option of doing that originally so my life wasn’t so negatively impacted. But what is done is done.
I’m hoping others can share their experiences with recurrence, specifically in the 4th ventricle, and what opinion they chose, and how it has gone for them.
Thank you all for your support.
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