Re: New to the group and would like to hear stories about others wit

August 10, 2012

,

I had my first (and only) detether surgery in 1994 and ended up in a wheelchair.

I'm okay with that. When the pain came back in 2010, my current NS (at USC)

discouraged another detether. I have bowel and bladder control and that could

change with another surgery. I'm not willing to take that risk. I have

arachnoiditis (sp?) and I can only imagine it's worse after the detether. That

surgery was the most difficult one I've ever had (I've had 21 b/c I have Spina

Bifida) and I'm glad my NS didn't push for it.

And thanks to everyone re: swimming. I'm getting the pool lift on Thursday. Woo

Hoo! I'm SO looking forward to doing my laps and leg exercises again.

Jodi

>I have spina bifida too. I've been fortunate in my ability to deal with the

pain. I started mindful meditation (mindfulness meditation?? something like

that) about four years after my last surgery and by the time my son was born in

2003, I was off pain meds altogether. I started gaining weight because of

marital issues a couple of years ago, and in May I decided to start running.

Never ran before in my life, but I find it to be very enjoyable and it doesn't

bother my legs or back at all. I think never having run, my knees are in much

better shape now so I don't even get any knee pain!

>But it is definitely a good thing to research any doctor and hospital you

choose. But I do suggest if there is any other way to deal with symptoms than

surgery to look into it. Might turn out to be surgery is the only good choice,

but I can't imagine the scar tissue gets any less problematic the more of it

that gathers back there, so I absolutely decided that there is nothing that will

make me go through another. My bladder is gone, forever. A wheelchair doesn't

scare me, and since surgery doesn't necessarily mean an end to pain, I can't see

putting myself through it again. I know people who have had many more than two

surgeries and they still don't rule out more, but for me, I told the last

surgeon (in the recovery room) that they had used up their last chance already.

I am done!

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