dave37
Junior Member
Posts: 10
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Post by dave37 on Jun 17, 2017 14:50:36 GMT -6
I was diagnosed last year age 61. I had symptoms for about 8 yrs prior. Had partial resection (C7-T3) last November. I also had 30 radiation treatments since the tumor was WHO Grade II and only partial resection was possible because much of the tumor was to interconnected with the nerves to remove. I have had worsening spasticity and alodynia for the past six month (starting getting worse about 5 weeks after the surgery. I have found out since (which the neurosurgeon didn't tell me) that for successful surgery early detection is important. Also found out the surgery in the thoracic area usually results in a higher percentage of complications since the spine is narrow in that area. Most doctors have been very tight lipped about providing information and haven't been much help. The neurosurgeon was well pleased with the surgery but then his quality of life hasn't gone down the toilet since like mine has. I recommend more than one opinion if possible. Important to know is if it is slow growing or fast growning. If it is slow growing you have more time to gather information and consider options.
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dave37
Junior Member
Posts: 10
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Post by dave37 on Jun 17, 2017 14:52:33 GMT -6
Sorry to hear that you have to go through this. Many people have had success with treatment. Most of us on this site are the ones who weren't so lucky.
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Post by feliciafawn on Jun 20, 2017 18:37:12 GMT -6
Unfortunately I had a recurrence this year (which was fully resected.) I was only Ependymoma free for 2 1/2 years, which is a bummer. I had two separate Ependymomas when I was first diagnosed at the end of 2013. They were both fully resected, two surgeries a month apart followed by a month of radiation in March 2014. They were both in the thoracic area but the new tumor was at L4. Still no deficits aside from some numb areas/occasional nerve pain on my right thigh. I am thankful for that
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Post by skipgoebel on Oct 29, 2018 12:07:41 GMT -6
57. first cut in 93'. 5 brain surgeries and dozens of dr.'s since. all over the world too. just "officially" signed on to the board. hello!
skip goebel a.k.a.- 'the labrat that lived' ependymoma originally at medulliary junction (c1-2)
you can find me on google
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Fraziermark67@yahoo.com
Guest
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Post by Fraziermark67@yahoo.com on Feb 11, 2019 18:35:02 GMT -6
I started getting symptoms at the age of 48. Numbness in the fingertips. Then numbness in the hands. It felt like I was wearing gloves. At The age of 53 hands and arms were numb and weak. That's when they did an MRI and found the ependyma tumors.
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