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I posted originally as my daughter she 20 has had GB removed 26/1/17. But suffering severe pain increasing all the time. You all wrote back which helped us get pushing for referral to a specialist in London.
Well that happened on Thursday & he confirmed it does look like Oddi Disfunction & issues with the bile ducts.
They took lots of bloods and she goes in Monday for the MRI ERCP scan.
Her pain is now daily & really is on the increase, she has lost a lot of weight, if she manages any small amount of food it comes back out very quickly, then it's just bile, ranges between yellow & green & the pain starts dead centre of her chest most of the time, the around where the GB was, then a band around the full centrycore right around her back, often into her shoulder blades, her legs are often as if they don't belong to her especially when she is woken up in the night with it.
Pain relief is not working now unless it's in A&E by iv.
The specialist has said the scan will lead the way forward and she is clearly suffering horrendous amyof pain with no quality of life right now so everything is as an emergency for the tests, slight complications due to her linx implant so full checks & authorities had to agree the scan due to the magnetic implant, but that was all done Friday ready for Monday.
So when the specialist is back from holiday in 2 weeks he will have all the results waityfor him & decision time.
He advised there are injections called botulinum toxin specially to stop the spasms & this can sometimes stave off the episodes for 5/8 months, but again you don't know until tried.
If she can't have that and the scan shows she needs the op then he will do that.
Hoping not but either way, while your body is playing up, diet is vital to help yourself ease the pain, won't stop it but can ease it a bit.
I wanted to let you all know where she is at, as you have been amazing with your support and helpful tips.
Will keep you posted wishing you all well and speedy recoveries, let's not forget SOD is not the normal pathway just the unlucky few. But hopefully the details will help others think if they need to push for more information about what's going on with them if pain is increasing.
And it might not be that yet, but I will confirm either way asap.
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