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Grand Magnate
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Join Date: Oct 2006
Location: Northern Utah
Posts: 3,465
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Grand Magnate
Join Date: Oct 2006
Location: Northern Utah
Posts: 3,465
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Reese, I first wanted to say welcome to Neuro Talk… I noticed you found the Arnold Chiari Malformation and Syringomyelia Forum. I went to Medline Plus to learn a little more about this condition. It must be hard to come to terms with what this might do to your children. I talked to my daughter who is 23 about what is going one with you and she said to tell her that her kids will be ok.
I wanted to just in short tell you I was born with Spina Bifida Occulta. I had three back surgeries in a two year period of time when my son and daughter were 3 and 5 years old. They learned how to take care of me because my husband was what I called my fair weather friend…he was around as long as I wasn’t in pain. I had my fourth surgery when they were both in high school and the fifth one six months ago. My daughter said she learned so much back when she was younger about how to take care of herself when needed which has helped her all her life. They both grew through my pain.
One thing I did was to involve them in everything. This past surgery my daughter was scared that I would die during surgery…she was scared to death. I took her with me to my pre-surgery exam so she could ask the doctor any questions she wanted to. She actually knew the PA so that helped her to relax. After the visit she was ok. She hates hospitals but came to see me every day.
I know there are a lot of questions of the unknown variety going on in your head. Make a list and take it to your doc appointment. I also know how hard it must have been watching your Dad suffer with his MS, my husband, aka, the Olhipie was diagnosed over 23 years ago…you take care and know you and your little family are in my prayers…sorry about going on…
If you need a listening ear...I'm here...hope all goes well with you appointment...
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My best friends live in my computer....
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Suffered with back problems since birth...7 back surgeries to date, the last one being on 5/13/2015. Fibromyalgia, PTSD, Chronic Pain
“Being my sweethearts full-time care partner, I have to remind myself, when some well-meaning friend or relative questions my methods or motives, that I know more than they do because I Live this life 24/7, and they only come for short visits.” Tamiloo
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Gotta love my Olhipie! Dx'd RRMS 1986, SPMS 2004
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Watch my Olhipie Skiing....
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