To detether or not (serious stuff)

This is a serious post, prompted by an e-mail that I received from a lovely lady in America. In fact the whole story of the e-mail itself is quite amazing as I received the e-mail through a mutual friend (on one of the forums) as this lady has the same 3 medical conditions as myself – spina bifida, scoliosis and diastematomyelia (split spinal cord). When I worked out the odds of that happening (not including the actual ‘meeting’ over the Internet), it worked out that the chances of us both having the combination of those same (rare) conditions were something like 1 in 20 million*. Astounding!

Anyway, she is thinking about surgery at the moment and we discussed the subject of de-tethering. Now just in case you don’t feel like wading through the archives – tethering is where your spinal cord gets ‘stuck’ to the tissues or bones of your spine. The cord is meant to hang freely within the bones of your spine so if it doesn’t, there can be all sorts of problems and symptoms such as back pain, scoliosis, weakness, bladder problems and loss of sensation have all been reported. In the case of children, surgery is nearly always offered as a low risk option with a really good outcome and therefore pretty much always worth doing. It is more complicated for adults, especially (but not exclusively) those with other considerations, such as spina bifida and diastematomyelia and of course, any risks rise with age. So, what do you do, if your tethering was not detected before adulthood? It makes the decision very difficult, that’s what. My orthopaedic consultant referred me to a neurologist and in my case his recommendation was to leave well alone. He considered it to be more trouble to do than it might be worth, particularly with the increased risks and I was inclined to agree with him. However, if I were younger and didn’t have any other complications, I would definitely have considered it as a worthwhile option. After all, a tethered cord is another thing that can affect your quality of life as you get older.

So, if you are in this situation what do you do – well, I guess you need to consider what problems/symptoms you have that can be put down to the tethered cord (as opposed to anything else) and then ask yourself if you are used to them and know how to deal with them, and what the likelihood of them getting worse is. Any operation at all carries a risk, especially one on your spine and once you are an adult the improvements are not as big as when you are a child (sadly nerve damage isn’t normally inclined to repair itself once the damage has already been done). The best advice is to see a neurosurgeon, but think carefully – this surgery isn’t necessarily going to be an instant cure to all your problems – all you can do is keep your fingers crossed!

*Actually, it’s a fib – hubby actually did the maths – I needed a calculator but smarty pants did it in his head!

Oh yes, and on the links page you will find links to pages about this subject, including a great personal story.