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Post by pringleman on May 15, 2014 7:42:32 GMT -6
Doh! Seems like it did post in the dying stages. Sorry about that chief.
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cc
New Member
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Post by cc on Jun 7, 2014 21:00:52 GMT -6
I am 46 yo and though common with kids ependymoma obviously occur with adults of all ages most common in 30-40's I have read
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Post by Lyd on Jul 28, 2014 13:05:52 GMT -6
I was 24 years old when I was diagnosed with ependymoma, thoracic area. I am 61 years old now. It was surgically removed in 1977; no radiation, and no recurrence.
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Post by John G on Nov 21, 2015 16:01:01 GMT -6
I'm 57, had symptoms that were tolerable (at least for me) for about 12 years, but intense pain and depression from lack of sleep finally drove me to get past getting handed B&W drawings of back exercises and get an MRI which revealed ependymoma (not confirmed yet), had my lammy and resection on L2&L3 three days ago. I feel lucky with the death and heart issues my entire family has experienced that my tumor has been relatively straightforward with good prospects for recovery. Sending positive thoughts out to all of you. : )
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Post by kathyb on Apr 13, 2016 12:51:55 GMT -6
Was 41, now 47. I know it had been there a long time b/c in retrospect, I had issues. Chalked it up to being pregnant, clumsy, getting older, stress, etc....; My huge tumor had a 3% growth rate, so I figure for it to get so big, it was there a long time. Lots of hand tingling, numbness and dropping things when pregnant at 36, thought it was being an older parent. I would like to know how long it takes these tumors to grow! Ependymoma C2/3-C6/7 February 2010
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kcarr
New Member
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Post by kcarr on Jul 2, 2016 9:03:44 GMT -6
I'm 57, had symptoms that were tolerable (at least for me) for about 12 years, but intense pain and depression from lack of sleep finally drove me to get past getting handed B&W drawings of back exercises and get an MRI which revealed ependymoma (not confirmed yet), had my lammy and resection on L2&L3 three days ago. I feel lucky with the death and heart issues my entire family has experienced that my tumor has been relatively straightforward with good prospects for recovery. Sending positive thoughts out to all of you. : ) Hi! I'm 53 and was diagnosed 6 years ago with an intramedullary ependymoma (most likely) in the conus medullaris, at around L1. It has not grown in any measurable way, but causes many problems....doctors (and tumor boards) recommend monitoring and no surgery or radiation due to the risky location. I was wondering about your tumor since it was in approximate area....was yours intramedullary? (inside cord). Can you tell me more about it and who and where you had the surgery? Glad to hear you're doing well and hope it has remained so.
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Post by steveinillinois on Oct 13, 2016 14:58:23 GMT -6
Am 62 now. At age 51 I was diagnosed with an intramedullary ependymoma which was 100% resected two weeks after diagnosis. Been disabled ever since.
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Post by moomoo on Jan 22, 2017 9:36:16 GMT -6
I was 36 when I had my tumor removed - I am now 54 (& female) - There were two women who had their tumors removed that same week (24 Aug 1999 at Beth Israel Medical Center, NYC) I believe one was 24 years and the other about 22 - 23? years old. Dr Fred Epstein performed the surgery on all of us and I would like to know if anyone out there had the same surgery by Dr. Epstein. Dr. Epstein wanted me to start a support group but I did not and regret it - I would have liked to have kept in touch with the people I met when I was in the hospital. Thanks for this forum - I felt alone in the "wilderness" until now.
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Post by metallicsheen on Jun 15, 2017 15:50:30 GMT -6
I'm 41 and was diagnosed 10 months ago with an intramedullary cervical cord ependymoma (C3/C4). I was dumbfounded with the news! I feel too young as well. This diagnosis is so SCARY, especially since most doctors look at me like DEAD MAN WALKING. My only hope is that the tumor doesn't grow. My neurosurgeon at Mass General Hospital recommends that we monitor it since surgery at this point would leave me in a worse condition than I'm in now. On good days, I try to be grateful that I can walk, talk, breathe and experience life with my family. On bad days, I spend the entire day in my robe feeling sorry for myself. Hi! How did the doctors know that it's an ependymoma? Did they do biopsy? I am 29 and an intramedullary spinal cord tumor was seen on my MRI at C4 region. The doctors are not sure what it is since it would be very risky to biopsy/remove it.
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Post by metallicsheen on Jun 15, 2017 15:54:04 GMT -6
Am 62 now. At age 51 I was diagnosed with an intramedullary ependymoma which was 100% resected two weeks after diagnosis. Been disabled ever since. What do you mean disabled? Sorry to hear that. I would really like to know since I have juat been diagnosed with an intramedullary spinal cord tumor. And I'm only 29..
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