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Post by carlysmom on Feb 23, 2014 21:33:55 GMT -6
Hi-My daughter is 20 and was diagnosed last march with stage 2-3 ependymoma with astrocytic tendancies. It was explained to us that typically they begin in the brain for pediatric patients and the spine in older adults. Early 20's is pretty rare. She's dealing with radiation side effects currently. Fortunately the last MRI showed some shrinking and no further progression although there was damage to the spinal cord and she is currently in a wheelchair and going to regular physical therapy to regain as much as she can. Our radiation oncologist was Dr. Nadia Laack at Mayo in Rochester MN. She is fantastic and has done research specifically on ependymomas. I cannot say enough good things about Mayo and their entire staff. Best of luck to you Felecia!
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eye
New Member
Posts: 2 
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Post by eye on Mar 4, 2014 22:37:47 GMT -6
Hi there I just turned 30 in January and I was just diagnosed with an Intramedullary Ependymoma at C1 in my spinal cord. I have no real symptoms other than some minor pain in my left shin, shoulder and neck - treatment for that was always just massage therapy. My tumor was found by fluke when my 1 year old was playing behind me on our couch and lost his balance, he grabbed my hair to brace himself which yanked my neck to the side causing a huge shock-like feeling in my head, I had tingling in my face and chin. I went to the ER because I was in a lot of pain. The Doctor there referred me to a neurologist who scheduled an MRI just as a safety precaution. Results came back that it was a tumor hitting my nerves when my son jolted my neck to the side. If it wasn't for my son's little accident, who know's when we would have found the tumor. I am in Toronto Canada and plan to get Surgery done at Toronto Western Hospital.
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Post by von on Mar 17, 2014 17:28:43 GMT -6
I'm 34, I've had tumor at least 10 years though based on symptoms. I'd put onset between age 20 and 24. Pain started in 03 or 04. I started having weakness in legs in 06, but neurologist said it was just a bulging disk that it'd probably clear up on its own. Because of that diagnosis (EMG no MRI), I figured it'd just get better. The disks were bulging because of the massive tumor.
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Post by pringleman on Mar 23, 2014 6:20:51 GMT -6
Nearly 47, and looking like I will make it now.
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Post by karen on Mar 24, 2014 9:33:56 GMT -6
I am 31 and just had my second surgery. . . . I had my first surgery for an ependymoma when I was 21, but I would say I was having some symptoms that began in high school.
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drex
Junior Member
Posts: 14
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Post by drex on Apr 6, 2014 19:01:35 GMT -6
I'm 27 now but was diagnosed last year at 26. I think I've had it since I was a kid as my right side has some mild motor issues and I've always had worse balance on my right side, this was despite being a figure skater with very good balance!
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Post by 625Ann on Apr 13, 2014 13:46:51 GMT -6
I was 38. I'm 57 now.
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lilsuthrnangel
New Member
Winning may not anything but when you are battling Cancer it means Everything!
Posts: 1
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Post by lilsuthrnangel on May 14, 2014 12:46:50 GMT -6
Hello Everyone! I am new here. I am 53 years old. I was first diagnosed with intramedullary ependymoma spinal cord cancer in May 1985 at the age of 23. The tumor was located at T8 thru T11. I was having severe pain in my back and numbness in my legs. Also I would loose control of my bowels and bladder. I had surgery in May 1985 and was given 6 moths to live. I am about to reach my 29th year as a survivor.
My diagnosis came before the MRI was approved for medical use because the school that had the MRI machine was kind enough to do an MRI on me for teaching purposes. I was very fortunate to be their "guinea pig". I have not met anyone else with this type of cancer until I came across this group today. It has been a long, lonely road and I hope to learn more about myself and this journey as well as help others when I can. 
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Post by pringleman on May 14, 2014 22:58:14 GMT -6
Welcome aboard our Merry Ship,
Think you must be promoted Captain as you have led the way. Yours is a great story which people heading out on the journey need to hear.
How is your spine going now? T8-T11 suggests double laminectamy. Pins and needles and numbness over time? Improvement.
Sorry battery is dying. Got to go.
PG
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Post by pringleman on May 15, 2014 7:30:43 GMT -6
Welcome aboard our Merry Ship,
Think you must be promoted Captain as you have led the way. Yours is a great story which people heading out on the journey need to hear.
How is your spine going now? T8-T11 suggests double laminectamy. Pins and needles and numbness over time? Improvement.
Sorry battery is dying. Got to go.
PG
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