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Newly diagnosed with Spina Bifida Occulta

Hi everyone, my name's Ria,
On Tuesday 25/6/13 my doctor confirmed that I have Spina Bifida Occulta after my physiotherapist mentioned to me as casual as anything that I had spina bifida as a baby, this was complete surprise as myself and my parents had never been told this.
I've had back problems since I was about ten but my story really starts about 3 years ago when I woke up and felt like I'd twisted my ankle I'd never felt pain like it before I went to the doctors that day and they explained that I had a slipped disk sitting on my sciatic nerve, I was sent for an MRI scan and told everything was clear, it happened again last summer and again I was sent for an MRI scan after having the slipped disk for nearly 3 months but I had to fight to have it done as the doctors didn't believe me but I knew something didn't feel right, again the scan came back clear and the doctor explained 'it was JUST a slipped disk' to me it wasn't, Anyway 3 weeks ago I could feel my disk slipping again so went to the doc and explained hat this was getting ridiculous and I wanted it sorted and surgery had been mentioned before but he said no, later that week I was at work with a very noticeable limp to the point I had patients praying for me haha, I turned and I couldn't move my legs I was still standing but it was like the brain to leg function had gone when I could move them I couldn't left my feet off of the ground and to get up the stairs I had to use my hands to lift my legs up to the next steps :/, so that weekend my parents took me to the hospital as I could barely walk I was admitted and I had an emergency MRI scan done the following day as I couldn't walk without holding onto something or someone, the results they said again were clear so when I went to my physio appt I'm sure you can understand my shock when they said oh you have spina Bifida, my head is spinning still and still don't know quite what to do, where to go, and what this means for my future I'm only 28 after all, but in all of this, having this makes sense to all the aches and pains I've had over the years, struggling to walk as a child, having really bad balance etc.
Anyway that's my story what's yours?


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  • What levels are affected? Can you go to a specialist for this? From what I read, its possible that this isn't the cause of your pain.... so I'd keep searching. I'd definitely go see spine specialist or maybe even two or three to get some answers on what to expect with your specific defects as you age, etc... and if surgery is an option. I'm sorry you are struggling. Hang in there.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
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