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Post by ependymoma23 on Feb 17, 2012 22:00:04 GMT -6
I found out march 13th 2011 that I had a c2-c6 ependymoma.. chemo & radiation wasnt a option. So I had a 15 hour surgery to remove it and woke up to the devestation of not moving or feeling neck down .... After intense acute rehab in Lincoln Nebraska I went from a SIP and puff wheelchairs to walking ... I had to relearn everything with myself and son
My arms are very limited, my left arm doesn't move, I stil dont feel chest down but I'm super positive I have severe nerve damage as well
I feel super lost and feel like I'm the only one like me. It's hard to relate
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Post by ependymoma23 on Feb 17, 2012 22:01:42 GMT -6
I also had a C3-t2 fusion and disectomy in October because my head was weighing down having head drop
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Post by Lady of Faith on Feb 28, 2012 16:14:50 GMT -6
I am sorry you have the need to be here, but glad you found us. Please post in the general forum as most everyone checks there first. I promise you, you are not alone.
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Post by kathyb on Feb 28, 2012 23:47:06 GMT -6
I had my ependymoma removed 2-23-2011. It has and will be a long road. I really don't know if there are any words that can help. I will come hang out on this board when I need hope and support. So, you are not alone, there are all of us out here giving you words of encouragement.
My husband would bring my son, who was 5, to the hospital to feed me. He would tell people, I have to go feed my mom. She is like a baby and can't feed herself. Still makes me cry. One of the girls in his first grade class this year brought in a photo of her mother who recently died of breast cancer, I kept holding back the tears and telling myself I was so glad I could be volunteering today in his class. I get out of bed for him, that's what makes me go these days.
Can now feed myself, pee, walk. Forearms and hands on fire. Numb, tingling shoulders down. Constipated. Have hope b/c I finally broke down and made an apt w/ surg to discuss pain mgt devices. Hoping to get off all these meds! People say I look great and I tell them it is a defense mechanism....
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Post by kezmc3 on Mar 13, 2012 8:19:47 GMT -6
Hi, Just wanted to say you've done amazingly well to get where you are today. My story is similiar to yours. I had a C2-C4 intramedullary ependymoma removed and I too woke up paralysed from the neck down. I had to learn to walk again, and I am still numb from the upper waist down.
I know to well how you feel. It seems to me that no one really understands until they have been through it themselves, thats extremelly difficult when its as rare as it is, thats why I'm so glad to find this forum. I would be interested to see what your other symptoms are (if any)? If you don't mind? xx
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