Thanks Merlin. I did get her in to see the neurosurgeon who diagnosed her 28 years ago. I've been trying for 2 months. They finally listened to me. She is having an MRI Tuesday to show from Brain Stem to Cervical Spine. Once that is complete I pray we get some better answers than we've been given.
I guess every person is different after revision so my question about adjustment time was off base. The neuro who performed her last revision kept telling me she'll adjust, just give it time. But didn't give her any sort of possible time frame. He also told her you don't have Dandy Walker, without an MRI evaluation. The Neuro we recently saw said you can't see her cyst without completing an MRI so now I'm questioning the one who recently revised her shunt. You're right the neuro community is very small so we are at their mercy. They don't really know the pain levels in people nor the weird feelings they have in their bodies so they just want to put a bandaid on the problem rather than helping find and truly fix the problem.
Thanks for responding back. I'll let you know how things go after the MRI and the follow up appointment with the neuro.

Sharon


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Oohhhh hell, I could not agree more with this statement. The amount of 'fun and games' I've with these so called 'medical professionals' annoys me to the extreme. It was once said to me "we know, we understand pain" but understanding and having to manage such pain are two totally different things. I also had a nurse ask me to give her a pain rating out of 10. I said 15, as I lay on a bed clutching my head in agony post surgery. "Ohh it can't be that bad" she said. So I told her to lay on the floor and I'd kick her in the head. "There's no need to be so offensive" she told me, to which I replied "Then stop making stupid bloody statements when you can see that I'm in agony".
As for the 'weird feelings', I have a plethora of these from tingles to sweats to numbness etc and when Dr's can't name or label the cause they use a fallback position of "It must be you..." ie its psychological "...here take a tablet"
I have in the past openly questioned drs about the surgeries being the cause, but I'd STRONGLY recommend not doing this as they become instantly defensive.
Conflicting diagnosis' are not unusual. I presently have a neurologist who I have seen 8 times and have been given 5 different diagnosis' by him. It was explained to me by a fellow patient like this: They treat the body like a manmade machine, where they 'fix' an individual component. Broken component, replace the component. But this ain't a replaceable component, so they treat known symptoms (where they can) then blame the machine when the fix doesn't work.
I do truly hope/wish/pray that all goes well with your daughters appointment, that the scan is completed. And that they can find a cause and solution. But please don't lose heart if they can not (I make that sound easy. HA. It is not) but keep trying to find answers for yourselves

Merl1n