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spina bifida pain docotrs words what can i do about this??

so i found out a few years ago that i have spina bifida, i can't remember the details on what the paper said, but i told my doctor at that given time that i was always in pain, alot of pain laying on my backl hurt i was always uncomfortable, and everything and if i did any form of heavy lifting, i'd be in trouble for days afterwards i am only 27 years old i'll be 28 on may 15th 2019, and i am at a loss i have moved address and i have been thinking about going back to the doctors and finding out what can be donehe also said there is a sergury i could have but i can't remember what it was, i don't really like doctors i have a big dis trust with them and i think there lying half the time and i don't mean to be rude to them but i have had it a few times where the doctor has lied to me, about other situations, i just need some form of support where i can keep updated with everything like a blog or something so i don't forget and where other people can have there input nothing like facebook or twitter just something to help me in a way so i can always say well here's the paperwork here's the details blah blah blah... so however so i moved and i've been experienceing \alot of pain again and it's constant when i go to bed when i wake up or when i'm in work standing up all day and all night doing 10 hours shifts sometimes longer. i just really need a supportive group where i can information from other people and get advice on what to do where to go all this is based is based in the uk, i'm was going to go back to the doctors and get another x-ray and do an MRI SCAN too this time possibly i know it costs money but i really think i should do it since i'm having so many issues and other issues, but everytime i go to the docotrs i go with 10 problems and only one of them gets fixed. i just need to be able to mention all of them, and get each one sorted out one after the other.
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20803600 tn?1546262537
COMMUNITY LEADER
If I were you, I would look for a surgeon specializing in spina bifida. Spina bifida can occur in many forms, some severe, some very minor.  Pain can or can not be related to spina bifida.
You were diagnosed with spina bifida from an xray? That's rather unusual. It normally takes an MRI and perhaps CT scan to properly diagnose spina bifida.
Before considering surgery, you want to make sure you have the proper diagnosis, learn everything you can about both your condition, other possible treatment options, and possible risks and complications of having surgery or not.
One thing to keep in mind is that spine surgery can and often does not relieve pain. In fact, many of us have had increased pain for years after undergoing surgery.
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