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Spina Bifida - October 19th 2009, 01:57 AM

Hey all, it's Chloe. I've been very busy lately and I will post an update on me soon for those who know and care about me.

Well, I have a boyfriend and he is so wonderful. Thing is, he has Spina Bifida. That does not make me love him less, I just want to know more about it. I tried google and it only confused me. He is 20 years old so I do not need to know about children with Spina Bifida. What I do know is that he has trouble walking and had a shunt. But if you could shine some light onto this, that'd be great. Oh and I also came across a suggested search about life expectancy for people with Spina Bifida, so if you could shine some light on that too, that'd be great also. If anyone on here has Spina Bifida, please share your personal experiences. I want to know what to expect and all that. Thank you, I appreciate all of you!!
   
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Re: Spina Bifida - October 20th 2009, 01:08 PM

PLEASE respond????

The life expectancy is scaring me as I think he is the one for me....

Please shine some light on this subject........
   
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Re: Spina Bifida - October 20th 2009, 03:21 PM

Quote:
Originally Posted by NikkiChloe View Post
What I do know is that he has trouble walking and had a shunt. But if you could shine some light onto this, that'd be great.
I couldn't find much but I found this info about walking difficulties and shunts.

Quote:
Mobility symptoms
The brain controls all of the muscles in the body with the nerves that run through the spinal cord. Any damage to the nerves can result in problems controlling the muscles.
Most children with spina bifida will experience some degree of paralysis in their lower limbs. If a child with spina bifida is partially paralysed, they may need to use leg braces or canes to help with walking. In cases where a child is totally paralysed, they will require a wheelchair.
Paralysis can also cause other, associated problems. For example, as the muscles in the legs are not being regularly used, they can become severely weakened. As the muscles support the bones, this weakness can affect bone development, resulting in:
dislocated joints,
misshapen bones, and
abnormal curvature of the spine (scoliosis).

Physical therapy
Physical therapy is one of the most important ways to help your child to manage their condition and gain as much independence as possible. The main aim of physical therapy for spina bifida is to prevent the child’s leg muscles from weakening.
The physiotherapist will teach your child a number of physical exercises that they can carry out every day to strengthen their leg muscles. Special leg braces may also be used to help strengthen your child’s leg muscles.
Quote:
Treating hydrocephalus
If your child has hydrocephalus (excess fluid on the brain), the surgeon will install a shunt during surgery. A shunt is a thin tube that is implanted in the brain. The shunt will drain away any excess fluid to another part of the body, usually the abdomen.
Once the shunt has been installed, your child should not require any further surgery for hydrocephalus. However, occasionally the shunt can become blocked and shunt repair surgery is required. See the Complications section for more information about shunt malfunction and shunt repair surgery.
source: http://www.nhs.uk/Conditions/Spina-b...roduction.aspx

Quote:
Originally Posted by NikkiChloe View Post
Oh and I also came across a suggested search about life expectancy for people with Spina Bifida, so if you could shine some light on that too, that'd be great also. If anyone on here has Spina Bifida, please share your personal experiences. I want to know what to expect and all that. Thank you, I appreciate all of you!!
Quote:
Do people with spina bifida and hydrocephalus have a reduced life expectancy?
The conditions in themselves do not reduce life expectancy, but health issues such as shunt blockages, kidney damage may do so. A person with these conditions can have regular check-ups to hopefully pick up such problems at an early stage.
source: http://www.antenataltesting.info/con...d/ntd_faq.html
   
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Re: Spina Bifida - October 28th 2009, 11:07 AM

Hi Chloe My best friend Marissa has spina bifida too. I know for her she has very difficult walking long distances due to the problems in her spine caused by this disease. She also has a shunt and says sometimes they have to be replaced every so often. Thats basically all I know hope it helps


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Re: Spina Bifida - October 28th 2009, 10:51 PM

Hunny please don't be scared by Life expectancies. Really it's different for everyone.

My brother doesn't have Spina Bifida but he has Muscular Dystrophy, and If you look on most sites the outcome isn't good. (usually mid -late teens) but my brother is almost 18 and healthier than most boys with the disease.

The best thing you can do is TALK with you're boyfriend. After all he is the only one who knows how it is affecting HIM.
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