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16 yr old daughter still having severe pain at incision site 6 weeks after MVD surgery

My daughter had MVD surgery 6 weeks ago, but she is still having terrible pain around her incision site. We made a trip back to the neurosurgeon a couple weeks ago and he said everything was fine and that she is just taking a while to heal. They cut her Hydrocodone from 10/500 down to 5/325 and the lower dosage isn't helping her at all. PLEASE NOTE*** I understand the risks of dependency. I closely monitor her dosage and she does NOT abuse her medication. In fact, she's sick of taking pills, period! But what am I supposed to do when she's in severe pain??? Why should she have to suffer just because she's a slow healer??? She is still in an enormous amount of pain and it is all stemming from the incision area. The incision itself is healing beautifully, but the pain won't let up. I am trying to get her back on the Hydrocodone 10/500 pills because I can't stand seeing her suffer. She and I have both been up the entire night because her pain has made it impossible to sleep. I eventually told her to double up on the 5/325 pills and she FINALLY fell asleep after 2 hours. Does anyone have any idea about what could be going on? Why is she still in so much pain 6 weeks after the surgery??? The TN pain is gone, thank God, but now we are dealing with another type of pain. Does it ever end????

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Permalink Reply by ravenm on March 26, 2012 at 8:42pm

Yes, it is brain surgery and it hurts. I had to trade off on pain meds and ice packs at the incision site to keep the pain manageble. 3 1/2 months out I got a site infection flare up that finally revealed so leftover crap at the incion site. Once removed it starte to heal properly, but it still is itchy and sometime (usually) annoying, I have been off the opiates for a few months, but I stayed on them until I was ready to get off. I don't think they really prepare you for the post surgery pain. My Dr. was like " Oh sure,2 weeks and you should be back to work". Uh, no. Try 6 weeks and I still have bad days. Talk to your Dr. about switching meds. I had to switch to Topamax to deal with the headaches I got post surgery. But for me it has stopped the crazy headaches I got post surgery.

Permalink Reply by ravenm on March 26, 2012 at 8:48pm

BTW, I have the "brain plate" feeling on my MVD side too. I did not get the bone plug replaced. I had a mesh covering with a synthetic resin to cover the hole. Because I use safety glasses, head sets, and headlights at work it feels like it has set into an uneven lump behind my ear and wearing glasses etc can still cause some discomfort. Hope your daughter is finding some relief.