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Post by glennys on Dec 16, 2013 6:17:10 GMT -6
Hello! My name is Glennys, I'm English but I live in Greece with my husband and 10 year old daughter. I'm coming up to celebrating (for want of a better term) the sixth anniversary of the discovery and swift removal of the critter growing in my spine.
I'm constantly told how grateful I should be but somehow it's not always possible to feel that way. I feel it has ruined not only my life but the life of my daughter & my husband who cares for me.
Post-op i did great - recovering the use of my legs in only a few months. My arms are another matter entirely. My left arm is just for decoration these days. I have no sensation in my hands and let feet are a bit dodgy at times too.
A host of other less pleasant issues make me feel like my poor husband has less of a wife and more of a granny.
I still get so angry and I feel so useless. What a role model for my little girl. When I look back to my life before the tumor, that's the person I wanted my little girl to see. I don't feel anyone really understands what it's like, not even the doctors. One even told me I'd feel better if I had another baby!!! I can't even pick up a glass without dropping it for christsake - I didn't know whether to laugh or cry.
Is or has anyone else experienced the same?
I apologize for my first post being a big moan but I'm feeling like there is no end to this and that I'm nothing but a great fat burden on friends and family alike.
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Post by lw on Dec 20, 2013 13:30:35 GMT -6
Hi Glennys,
I can totally empathize with your frustration at not making a full recovery. I had a large SCT re-sected 5 years ago on Sunday, aged 26, and had previously been fit and healthy. I was also unable to walk for a long period of time before I gradually half recovered. Everybody keeps telling me how 'lucky' I am because I don't look disabled on the outside and appear to be 'normal'. Of course I do feel fortunate to a degree because I realize things could be considerably worse but my life has just come to a standstill. I am unable to work (this has been the hardest thing to accept) and unable to live independently without the help of other people. I'm now on medication due to the psychological effects of this condition as well which has made things ten times worse. I also feel like a burden and I hate it because I am only 31. Sometimes it's like I've lost my identity. So I do know how you feel, I think. All we can do is take each day at a time and make the most of the good bits, however few and far between they are.
Anyway, welcome to the forum!
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Post by samuridude on Dec 20, 2013 18:04:55 GMT -6
I still get so angry and I feel so useless. What a role model for my little girl. When I look back to my life before the tumor, that's the person I wanted my little girl to see. I don't feel anyone really understands what it's like, not even the doctors. One even told me I'd feel better if I had another baby!!! I can't even pick up a glass without dropping it for christsake - I didn't know whether to laugh or cry. Why do you think you destroyed your kids and husbands life? Maybe you “changed” their lives, but not destroying. Most of us have been there and done that, a good attitude is better then any medicine. |
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Post by amychristine on Feb 2, 2014 19:44:06 GMT -6
I'm quite scared that I may require surgery in the future. I can only imagine how difficult it must be to manage the pain, stress and emotional turmoil, especially since you have a young daughter. I have a son myself, and I often feel disappointed that I'm not able to do things that I used to be able to do with him (like skiing for example) due to the chronic pain and numbness. When I am depressed or stressed, I reach out to a counselor for help. She helps me channel the negative energy and focus on the things I can control. I also try to be thankful for everything I do have, all the support of my family, etc. It sounds to me like you want to be a perfect mom. So do I! We need to redefine our definition of perfection. We can be role models with our advice and wisdom. Our children judge us based upon the love we share with them. I bet your daughter loves helping you, and she will be shaped into a responsible, thankful young woman because of the experiences she has with you. So, chin up. You can do this!
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Post by ann625 on Mar 30, 2014 16:29:22 GMT -6
Hi Glennys In August of this year, it will be 20 years since I had my tanycytic ependymoma at C2 removed. My daughter was 11 and my son 15. Due to my challenges, both of my children had to grow up faster than they should have. While I wouldn't have chosen to have a SCT, I wouldn't change it either. It has made my family a very close loving unit. Since the initial surgery, I've have 3 disks surgeries and a detethering surgery. It's been very hard, but it's been worth seeing both graduate from college and get married.
The best advise I can give you is to recognize the opportunity you have to show your daughter that she can survive no matter what. That she can love no matter what. Cry when you need to, talk to a councilor,and use this board. It's amazing.
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Post by ann625 on Mar 30, 2014 16:45:19 GMT -6
I had my SCT removed almost 20 years ago. I've had disks removed at C6, T11, L3.,and detethering at C2. I've had shingles 6 times, usually around surgery sites. Has anyone else had shingles?
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