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Old 24-02-2014, 10:53 AM
Pina Pina is offline
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Default 20 months after surgery back pain

Hi Everyone,
Its been a while since I've been on this forum but would like to know if anyone else is going through the same thing my daughter is.

20 Months ago Daniella had spinal fusion from T4 to L4 with a curve of 54 degrees. Surgery went very well, she went back to playing basketball after 6 months and generally her health is ok. But we have a big problem. Surgeon told us that after surgery she will be pain free. Well this is not the case at all. She wakes up crying, comes back from school crying and goes to bed crying. All because of severe pain in her lower back. She will be 17 next month and to see her in constant pain breaks my heart.

Long story short we went to see her surgeon on Thursday and he was dumb founded as to why she is in so much pain. He said the only think he can think of is that she only has two vertebrates free of rods or screws so he thinks they are taking all the pressure from bending, turning and holding up her upper body. These two vertebrates are also slightly curved but he did not want to fuse them at the time because then she would have had no flexibility. He now is sending her for an EOS x-ray and a full nuclear medicine bone test to see if the pain is coming from somewhere else.
If these tests come all clear we have to decide whether to re operate and fuse the whole spine (which gives her no flexibility at all) or put her on pain killers for the rest of her life. Its taken me a good 18 months to deal with her emotions from the surgery, all the tests, scarring etc. and now she's back to hating life. I'm an absolute mess and was wondering if anyone is experience such pain?
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Old 26-02-2014, 08:31 AM
Eliz Eliz is offline
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Default Re: 20 months after surgery back pain

That is hard. And also not fair. Teenagers struggle at the best of times.
My son was only fused to L1 and the curve at next vertebra on X-rays concerns me but he is not in pain and surgeon is happy.
I am sure it is going to be difficult to determine cause of pain, will they try ultrasound guided needles to block nerve roots in that area before proceeding to surgery...
Get a few opinions before surgery again won't you, sometimes a fresh pair of eyes is good.
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Old 26-02-2014, 10:24 AM
Pina Pina is offline
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Default Re: 20 months after surgery back pain

Thanks Eliz.

Really going to avoid surgery again. Will definitely get other opinion before deciding what to do.
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Old 26-02-2014, 11:53 AM
jane jane is offline
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Default Re: 20 months after surgery back pain

Hi piņa, Jane here. My daughter was in hospital with your daughter. Sophie had t4 to t12 fusion. luckily she has no pain and is back swimming and is slowly re-building her upper body strength . our sports medicine doctor said that lumbar fusions are more prone to lower back pain in later life than thoracic ones. I really feel for you as I know yours has been a harder journey than ours but I am glad to hear that your daughter is back,playing basketball because I know that is her passion. I do hope that everything works out for you. We both had a wonderful surgeon and I know he will do everything he can for you.
Take care
jane
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Old 26-02-2014, 08:16 PM
Pina Pina is offline
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Default Re: 20 months after surgery back pain

Hi Jane,

So nice to hear from you and so glad your daughter is doing great.
Surgeon was great but he is baffled to why she is in so much pain. He told me she would be pain free after surgery so I'm a little disappointed that he didn't make us aware of lower back pain after lumbar surgery.
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Old 09-03-2014, 10:12 AM
Pippa Pippa is offline
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Default Re: 20 months after surgery back pain

Hey there,
I'm eight months post op and have been suffering severe pain. Like your daughter, the pain is so unbearable I spend most my time crying, and it's hard at school when you're expected to be normal and you can't even sit or stand normally. I'm 15 and I was fused from T4 to L1, I haven't started any physical activity because of the pain but I cycle and occasionally run sometimes. No doctor has really helped us yet with the pain and they just say it's 'muscular and nerve damage' but they aren't doing anything to help it! We got some medication to help me sleep but I'm still in agony during the day. I suggest you go to a pain clinic and see if they can help manage the pain and hopefully she won't need another surgery. Best of luck x
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