Chronic post-craniotomy pain/headaches?

I had a craniotomy a year ago (April 2009) to remove a brain tumor; it was a middle fossa approach on the right side.  Following the expected post-op pain and headaches, I've been shocked to find that I continue having stunningly severe pain on the operative side.  That side of my head ALWAYS hurts--it's like a dull pain, not enough to really bother me (but I have a VERY high pain threshold), just enough so I'm always aware of it.

But with no rhyme or reason I'll sporadically get CRUSHINGLY bad headaches that originate at the craniotomy site.  I mean absolutely incapacitating--and for ME, that's saying a lot!  I end up having to take 2-3 hydrocodones (10/325 or 10/500) over the course of a few hours just to take the edge off. I have to lie down, on my left side, and just be still.  It feels like my head--on the right side--is being crushed in a vice.

At 10 months post-op I had another brain MRI and it was perfect--no sign of the tumor recurring, and no sign of anything else that could account for the headaches.  So my neurosurgeon and internist can only tell me that it's unusual for post-craniotomy pain/headaches to go on this long.

Anyone else been through this?  Any ideas if it'll ever stop?! Any thoughts on any of this? :)

[rumpled]

They may have hit a nerve - there are a lot of nerves around, and if they rubbed one (and they are not always in the same place for everyone), it may be that you are having nerve issues. Folks with Fifth nerve issues - or Trigeminal neuralgia sound the same - even throw up with the pain.

There are some meds like neurotin and stuff that they throw at you to dull the pain and that you can take daily as a control method - have you tried that? Have you posted on neurology forum?

[yum_chocolate]

It's just so sporadic!  I can go days--even weeks--without one, then have a KILLER headache, then go days or weeks again without one.  If caused by nerve issues, it seems like it would be constant, right?

The tumor was on the eighth cranial nerve and involved the vestibular nerve; the latter was removed.  The facial nerve was disturbed during surgery; it was monitored throughout surgery, and so even though I'm still dealing with [improving] facial paralysis, we know that the facial nerve was not severed or permanently damaged.

Does this extra info shed any new light?  And, no, I've not posted on the neurology forum.  Also, I can't take Neurontin--I had a VERY bad experience with it a few years ago.

[rumpled]

Yes, nerve pain can come and go. So sporadic makes sense. They need to identify the nerve, if it is that, and do something about it (wrap it in teflon or do something) so the pain ends. If it was severed, as you said, you would be droopy.

There are other meds in the class besides neurontin - but yeah, neurontin is not the most pleasant med...

Try the neurology forum and the doc expert forum and see if they have any better ideas. Have you tried acupuncture?

[spitfire2]

Have you been able to find any answers to your questions regarding chronic post craniotomy pain?  Heard of any recommended pain center  to go to?  
I underwent a craniotomy for both intractable epilepsy and a brain tumor back in Aug. 2007, and am still dealing with chronic pain, day in and day out.  Pressure pain on the side of my head and across my entire forehead. Have tried acupuncture, all types of injections, pain meds, various alternative treatments, but no rip roaring success.  Had surgery at Mayo, went back to address this pain, but no luck.  Also different places here in the chicago area (RUSH), but not much progress.  Have you had any luck?  Found any pain center which has been able to help you?  I think I'll have to travel out east to find a decent place.  Just hoping I won't lose my sanity soon....this damned pain is killing me!
I hope you have been able to find some answers yourself.  Good luck, and thanks for any info.

[UrBlondii]

I had brain surgery for my epilepsy and my tumors in 2003 (when i was eight). Since then, I have had migraines that just keep getting worse and worse as I get older. Mine too is on the right side. It is still swollen, kind of. They say nothing is wrong and it is just scar tissue, but that too as I get older gets bigger.. I also have to sleep on the left side of my face, because for some reason my scar and just my whole head, inside and out, hurt so bad. I have taken so many midol and tried other things. but nothing seems to solve my problem. I THINK I know what you are going through. Except I cant tolerate pain. :(. I am happy to know somebody is experiencing the same things as me (not happy happy, but you know, like maybe if so many people have the same-to-similar problem, somebody will find a solution).

[horselip]

Hiya all-
I have post surgical head pain too. We even know which nerves are acting up. Anyway I rec that you think about going to a pain management center like I do. They've helped me to find a medication regime that is working very well for me. Also there is hope of having the nerve ablated, or a portion of it, in the future. They use radio frequency to kill it! Stanford Pain Management is a center of excellence and they use a multidisciplinary approach!
http://paincenter.stanford.edu/

[spitfire2]

I'm sorry you still have so much pain: maybe we should both, as horselip says below, try Stanford pain center.  Having refractory seizures is really hard, I know.  Especially when you also have a brain tumor(s).  Mine was misdiagnosed for years.  I had a left temporal lobectomy, and have some soreness along the scar, but have terrible pressure and tightness across my forehead.  It's different from a migraine....just wish it would go away!  

I'm really sorry about all your suffering, though, especially considering you are so young!  (I was 27 when I had the surgery) Are you sure you have migraines?  And have you been to any specific pain centers which deal with the post craniotomy pain?  I had migraines the first 6 months after surgery, but they went away, although I still have this terrible squeezing/tight feeling, terribly painful, and different from migraine.  Headache clinics aren't really too impressive, as they deal so much simply with mirgraines vs. post surgical pain.  I hope you are able to soon find some answers to your pain: you have suffered for too long.  All the best to you--
spitfire2