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Post by feliciafawn on Feb 2, 2014 6:26:18 GMT -6
I was diagnosed with a spinal cord ependymoma about 2 months ago. I'm 24 years old and I feel like this is very early in my life to be having to go through something like this. I was curious as to what everyone's age is? I'm not sure what the median age for this kind of illness is.
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Post by lw on Feb 2, 2014 7:15:13 GMT -6
Hi Felicia,
I'm 31 now, but I was diagnosed at the age of 26 after losing the use of my legs. My first symptom (chest and back pain) began when I was 17, although I had no idea at the time what it was. I also felt too young to be going through such a major health crisis. I don't think age is a factor with SCTs unlike some illnesses. I was surprised to find parents with young children on the boards here, as well as elderly people in their 60's and 70's. Age also seems to be irrelevant to recovery which is interesting. My tumour is a neurofibroma and I've read that people are typically diagnosed between 20 and 40. I'm not sure if those figures differ depending on the type of tumour.
I'm sorry to hear you find yourself in this position. It sucks whatever your age. But you do have us!! Welcome to the forum.
Leah
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Post by amychristine on Feb 2, 2014 19:13:59 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.
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Post by redaquadeb on Feb 3, 2014 16:04:03 GMT -6
HI. I'm 54 and was diagnosed 3 years ago this coming August with an intramedullary ependymoma @ C2, encroaching on C1. My NS, Dr. Borges, is also at MGH. I like him a lot, and he is working with me during my "watchful waiting" stage, and will operate on me when the time is "right." Amychristine, can I ask who your NS is, please?
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Post by jewlsmurray on Feb 4, 2014 11:52:34 GMT -6
I was diagnosed last August at the age of 39 with an intramedullary ependymoma from my c4-t1. I had surgery at the beginning of September and although I have sensory deficits from the neck down, especially in my arms/hands, and nerve pain in arms/hands, I feel blessed that my outcome was not worse. I really think I was at a good age to have to go through having my tumor removed. The younger you are, the faster you heal, and my kids (4 boys) were old enough to help out. When I was in the hospital I had a good friend whose daughter-in-law was also there, who had leukemia and was 8 months pregnant. There was a point they didn't think mom and baby would make it and it made me realize sometimes life sucks, but there is always someone who is going through something worse than you. I made it through, and mom and baby did too. I think the worse thing about SCT are that they make you second guess everything. Should I have surgery or not? If I have surgery when? Do I have the right doctor? What if I would have known sooner? Best thing about SCT is it makes you realize what truly is important and who you can count on. It's also given me more of a tell it like it is, no bs, don't sweat the small stuff, I can say no attitude. Some might think of that as the + or -.
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Post by dolphintale on Feb 5, 2014 20:25:16 GMT -6
I am 59 and was diagnosed a year ago....what was thought to be chordoma was in fact a hemangioma c2/c3....nerves had to be removed with the hemangioma so now the right side of the back of neck, jaw and ear are numb...I have some speech deficit. However, I feel very fortunate considering what I thought I was facing at first. I have my first 6 month MRI after surgery on April 1...I also go in September for an MRI for my lumbar area because when testing for the first they also found two nodules in my spinal cord in the lumbar area...have immense pain at times which makes it very difficult for me to walk sometime....not sure if it's from the nodules or the fact that I also have severe degenerative disease in the area...at this point just in a "wait and watch" for the lumbar area. Am thankful though because I am able to work everyday...I definitely agree with jewlsmurray...I don't sweat the small stuff anymore. Prior to all this I was a workaholic and felt I needed to do everything....now I pace myself and realize that it's okay for me not to do everything...it sounds weird but I feel I have more freedom in choosing what I want to do instead of what I need to do.
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Post by kurtymac on Feb 13, 2014 18:33:39 GMT -6
26 grrr
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Post by Bird on Feb 16, 2014 3:21:02 GMT -6
I messed up my reply the first time - sorry, new to this board. I'm 49 and just had my tumors with cysts removed a few weeks ago. amychristine, I would suggest a 2nd opinion from John Chi at Brigham and Women's. I'm sure you did your homework when selecting your surgeon, but Dr. Chi is truly amazing and the best of the best, in my opinion. Here's his CV, if you're interested. He's apparently known as the "go to guy" for anything tricky, unusual or scary. www.operationbackbone.com/documents/John%20Chi%20CV.pdfHe just removed an atypical ependymoma from me (C6-T1) and while it is not an easy recovery and I will be receiving OT and PT for quite a while, I have no regrets about proceeding with the surgery. The ependymoma was apparently attached to the spinal cord in several places (not readily seen in the MRIs I'd had taken) so my symptoms would have only grown worse while eventual tumor removal would have become even more difficult. Every periodical, journal and abstract that I've read suggest tumor removal as soon as the patient is symptomatic, but of course I don't know your situation. I don't know if Dr. Chi could help you or not, but why not get a 2nd opinion? I trust him completely. Also, the ICU care was PHENOMENAL.
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Post by funnywalk on Feb 19, 2014 9:48:12 GMT -6
Hi kids! And Felicia... I am one of those -er - elderly patients. So not complaining about being diagnosed aged 65 - though they did say I could have been born with this, and it makes sense of my poor balance and lack of co-ordination when I was younger. I feel lucky, though, to have had kids and a career and a good enough life span. SCTs unfortunately strike at any age, and it's no consolation to know that we are a very small, very select group. Hope you, Felicia, have a long, active and happy life ahead of you. Hope your ependymoma can be removed. They are about the most cooperative tumours to have, I am told.
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Post by leks on Feb 19, 2014 12:22:17 GMT -6
34 here...
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