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Old 10-22-2010, 10:34 PM #1
preasure6492 preasure6492 is offline
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Default 17 year old headache out of control

So this girl has been suffering from mirgraines and all sorts of headaches for the last three years. She was diagnosed with Chiari and had a decompression surgery march 20, 2008. Her head aches seemed to go away for three months. She was obviously in alot of pain, but the headaches went down. Then her pain started going up from 4 to 5 then up to 6 out of 10. Then the doctor took another spinal tap to see where her pressure was at.

She had was at a 26(do not remember what they measure that in) I also do not remember what level it should be at, but I remember like 7-15 or something like that. The doctor said she had pseudotumor cerebri. They checked her eyes and nothing was wrong in there.( doctor said swelling behind eyes can cause her to go blind) So they put in a VP shunt. goes from base of her spinal cord to her stomach.

Asian she was getting better as she was healing from surgery, but once she was actually getting rid of some pain from the incisions, then her headaches gradually got worse. They realized the shunt settings kept gettin changed. They thought that she was playing with magnets, but could not figure out why it would keep changing. After about 10 months they decided to go "revise" the shunt. Her head did not really get that much better, but this would hold the settings in one spot.

now we have been still having issues for months. her average pain level kept going up untill now she is at a 9 to a 10. She is not even funtionable. She has been admitted, and been on 4mg of morphene a hour pluss dolodin and they can not get her below a 8 1/2.

The MRI looks good, her blood vessles look good, nothing looks out of normal. so they did another spinal tap. she was at a 23. again way too high. so now we are back to stage one. Why is the shunt not working. they are going to be testing it on monday (3day). They may remove it replace it or do something with it. we are not too sure.

Does anyone have any knoledge to imput on this that i may bring to doctor? all her blood has been tested for the ussual stuff and then some. I feel that there is something going on here more than this shunt issue. Because she got better after decompression and then got bad, same story after her shunt was put it. Its like her having pain was masking the head ache or something. I just do not know anymore. no medicine helps, is that becasue it is a nerve issue also, or because of her tollorance from being on it for so long?

Thanks for any imput. We could use as much help as possible!!!!!
chris
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Old 06-19-2011, 03:49 PM #2
res5562965 res5562965 is offline
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res5562965 res5562965 is offline
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I had the vp shunt put in first to move the spinal fluid out of my head. Then I had the Chiari decompression surgery and had absolutely no problems with this surgery and it really helped with the remaining headaches. However, I have had 8 surgeries beginning 11/2010 to 10/16/2011. All kinds of things can go wrong with the shunt, including the following that I have experienced: shunt placement in wrong part of brain, shunt malfunctions, tube in abdomen became coiled and I ended up with infection in brain, shunt failure. The biggest problem was the shunt coiled in my abdomen which caused infection and I stayed in the hospital with an external shunt for 19 days to get rid of the infection. The reason I think this is so important is because each time I went to neurologist they always do a CT of head. If they had done a CT of abdomen they would have seen the shunt in abdomen coiled and fluid was not moving and ended up as an infection. Hopefully this is not the case. But, from now on if I have a problems and the CT of head shows normal flow, I will insist on CT of abdomen.
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