colleeninatl
Registered: 24/10/10
Posts: 1
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| | 24/10/10 at 12:25 PM | Reply with quote | #1 |
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I was born with Spina Bifida in 1975 but my parents and the hospital didn't know it. My parent's started getting worried when I wasn't allowing my weight to be held on my feet when people would stand me up on their lap. So they took me to the family doctor and he suggested Children's Hospital of Philadelphia. They diagnosed SB then and I had a surgery to close the spine at 6 months or so and another at 2 years. I honestly don't know what those surgeries did or why they were needed. I did visit the hospital a lot when I was younger. We would visit Children's Hospital of Philadelphia for yearly visits and therapy and all that. When we moved to Florida when I was 10 that all stopped. I never visited another hospital for anything having to do with SB. I never knew there was a way to "fix" the bladder and bowel issues I do have. That would be great, now that I am working in the professional world. As a teenager I had other surgeries because of infections of blisters I didn't know I had. I also had a tendon lengthening surgery when I was 9 so my left foot wouldn't turn so much. They didn't get around to fixing the right one and that foot still turns to this day if my shoes let it.
Today I have no feeling on the bottoms of my feet, except when the pain is so bad. I have to wear bladder controlling pads so that I can work a 10 hour work day. I was never comfortable with my body and never explored anything intimately until recently.
I just wish I knew more about what SB is doing to my body today and all that I can do to help to make things easier. Can anyone help with suggestions?
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Colleen Covino
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Elliemomma
Registered: 15/09/10
Posts: 2
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| | 28/10/10 at 04:11 AM | Reply with quote | #2 |
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Hi Colleen,
My name is Joanie and I have a daughter that's going to be 4 and she has SB level L4-5 and club feet. she has had 17 surgeries since she was born. She is unable to feel her feet and cathes every 3 hours. Do you know what type of Spina Bifida you have? Here is a place for FREE information its called spina bifida university http://www.spinabifidaassociation.org
and an email for the spinabifida association of Georgia sbag@spinabifidaga.org
I just want to say thank you for reaching out for information about SB. When you were born there wasn't that much info out there and thank goodness the word is getting out. Take care, Joanie
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mimi
Registered: 02/11/10
Posts: 4
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| | 02/11/10 at 09:40 PM | Reply with quote | #3 |
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joanie Does club foot come from sb. I had clubfoot surgery twice when i was little. I also have sb and scolioses and clubfoot. I do not feel alot on my feet only if it is really bad then i feel the pain. I also had surgery for sb.
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kelly valle |
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Elliemomma
Registered: 15/09/10
Posts: 2
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| | 02/11/10 at 11:55 PM | Reply with quote | #4 |
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Mimi, Most of the children born with Spina Bifida do have at least one Club foot, it depends on what type of SB. When my daughter was born her club feet were turned in and down and she has no feeling at all in her feet. We know this because when she was 5 months old. I was changing her and I looked up and she had blood all over her face. She was eating her big toe and feel a thing. My husband also has a form a SB called accolta. When he was born the Dr. didnt know it but did noticed that his arch in his feet looked funny. (he uses lifts now) Husband's Cousin also has SB, the same form as our little one L4-L5 and she uses AFOs for her club feet. Scoliosis does develop over time with SB. I just found a great web site that has Moms with SB and Moms of kids with SB. They have alot of Q&A. It's called Baby center community
Hope to talk again soon
Joanie
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