Good Afternoon Everyone,

I have been reading up a lot lately about both Tethered Spinal Cord and Spina Bifida and how the 2 are linked but i still have a lot of questions and concerns so thought it might help to talk to people that have been in the same or similar position to me.

I am 29 and have just been diagnosed with Spina Bifida and a tethered spinal cord. I was born with this but it has only just been detected. When i was young i had one foot on my left size 1/2 a size smaller than the other and was noticably more weak on the left size, i also cant movemy left foot in the same way as the right - for example i cant bend my toes down. This was apparant but didnt give me any real issues. Once i got to my early teens my lower back started playing up and my mum noticed i had a lump at the base of my spine by the coccyx right where my birthmark is, it was painful to touch and very spongy. I went to the doctors and was given exercises but told not to worry. This went on with numerous visits to the doctors over 3 years. I then finally due to my persistence was sent to a physio which did no good if anything it got worse so i gave up and thought it was something i would just have to live with.

Last year at 28 i started having trouble passing my bowels meaning i was constipated a lot of the time, i knew there was something wrong but didnt think it had anything to do with my back. The doctor did an **** examination and sent me to see a specialist, three weeks later i was at the Ridgeway Hospital in Wroughton seeing a specialist, he did an exam and said that my muscles were very weak, he asked if i had injured my back, this is when i told him the symptoms i have had for my whole life and he examined me and booked me in for an MRI scan the following day (joy of a private hospital). I went in for the MRI on my lower back which was very painful as i cant lie flat on my back at the best of times but this was initially for 1/2 hour. When i came out they advised me that they had found something they wanted to look into further and i was to go back the following day for another MRI but this time on the rest of my back and shoulders. I did this and was back in with the specialist a week later to discuss their findings.

This is when i was advised i had a torn disc, a tethered spinal cord and spina bifida accuta all in the same area of my back. To say i was shocked is an understatement i honestly didnt think they would find anything as i had been made to believe my back pain was normal. He said he was going to speak to a surgeon he knew that specialised in tethering and would get me an appointment with him.

About 2 months later i was booked in at the Frenchay Hospital in Bristol with an Ian Pople, specialist in neurosurgery. I was anxious as i didnt want another **** examination but he didnt need to do one, he looked at my scans, did a couple of reflex tests, spent a lot of time playing with my left foot and told me straight there and then that i needed an operation to fix this. He was very good, straightforward, direct and honest. It will be a big operation meaning 6-7 days in hospital and 3-4 where i cant move but it has to be done = no way around it.

I was finally glad to know that i was in capable hands and that i wasnt dreaming the pain i was in. I had my pre-op in July this year and am now waiting on a hospital appointment for the operation. More than likely be in December.

My symptoms in the last 3 weeks have gotten worse, my lower back pain is constant and no pain killers help, i have started to get numbness in my left thigh and tingling in my left foot, i also have little warning about needed a wee.

I have called the hospital and made them aware of this. I am worried that the longer i wait for the op the worse my symptoms will get and then the likely hood of them being fixed will be reduced?!

I have read a lot about this lately as its not something many people have heard of and therefore there isnt the support network you would get with other ailments but im hoping someone on here has had the operation and can tell me truthfully what to expect afterwards. There are a lot of mixed reviews some say they have never felt better (though not many) and others say they have had the op a few times, it keeps tethering and its the worst pain they have ever experienced.

The only cases i have come accross are either very young children (this seems to be who they have done the case studies on) or people much older than myself 50+

Any information, help, advise or support would be greatly appreciated

Thank you for taking the time to read this - sorry if it goes on a bit.

Natalie