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chronic post craniotomy pain

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Old 07-01-2011, 12:54 PM   #1
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Join Date: Jan 2011
Location: Warrensburg,NY US
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kel61 HB Userkel61 HB Userkel61 HB User
chronic post craniotomy pain

Hi all,
My name is Kelley and I am new to this particular board. I have been posting on the stroke board because my husband had a stroke back in Nov 2010.
Anyway, after his stroke he had to have a craniotomy performed to relieve pressure caused by brain swelling.
They didn't have to actually remove a piece of his skull, thank God, but they cut in to his skull and put in what they called a "hinge" to allow for further swelling. I don't know the technical term for the procedure.

It has been 8 mos and he is still experiencing horrible pain at the incision site. What he describes as a burning stabbing pain like he is being cut open. It hurts almost all of the time but is excruciating after a sneeze or cough or if he bends over or strains in any way.

Do any of you have any experience with this? Any ideas what might help relieve the pain? Doctors are pretty much clueless as they are with most stroke related pains and issues.
So far he has only tried amitryptiline for nerve pain, which did no good at all, and now he was just started on Neurontin. Too soon to tell if that will help at all.

Is it even normal to have such pain this long after a craniotomy???

This pain is horrible, more than a little annoying and I really think it is holding him back from doing more therapy and getting his life back. Strokes and their effects are bad enough without dealing with this on top of it.


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