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

[mimib827]

I too have pain and the vise crushing feeling on the left side where the craniotomy was performed. I am starting pain management in a few weeks, I had a tumor rmoved from the left side on the brain stem in 2007 and the nerves are reconnecting as they say and now causing pain and muscle spasms in my neck and cannot move when this happens . Hope this helps

[horselip]

Good luck to you on your upcoming pain management.They did a lot of diagnostic blocks with lidocaine to try and determine what nerve/s are affected. I keep a journal were I write my pain score and anything that can help my docs. If there are any patterns it can really help the pain team to treat you.
Horselip

[beckykirwin]

Hi, I’m 15, I had a craniotomy operation almost two years ago. I had the back of my skull removed and the top vertebrate of my spine removed. I had this operation because I suffered with constant headaches, dizziness, I was always drowsy and the pressure from the fluid around my brain was getting blocked so my head was swelling and making my arms go numb. My neurosurgeon said I needed this operation due to the pressure on my brain.

Now, two years on, I am still getting severe headaches. I can never lie on my back without the feeling of a heavy head and feeling like I am lying on a hard surface with constant pain on my neck and severe headaches. If I was to move too quickly then I would everything goes white and I become very dizzy and sometimes fall back.

I don’t always get headaches but when I do, it feels like someone is constantly pushing on my head or pulling on my shoulders. I am unable to walk far of sit up when I have headaches and sometimes the back of my head swells out the hole. I have a hole the size of a fist and if I or anyone touch it, I feel dizzy, I can’t see straight  and my head feels numb but tingly.

No medication has helped with the pain and my headaches last about 4-5 days but there is constantly an annoying aching pain in my head and neck, not a massive pain but it’s enough for me to always know it’s there.

I still cannot do any sport or PE and as a result of this, I had to sell my horse as I could no longer ride. If I try running, the pain become unbearable, I can’t hop, skip, jog, jump… I can’t really do anything without receiving some pain.

When I walk, I always get a clicking sound at the back of my neck which usually causes my headaches.

There is nothing I want more than to be able to be normal again and go out with my friends without having the risk of falling or something happening to my head. I need to be able to have my life back without always waiting for a headache and constantly lying on the couch. I would love to be able to lie on my back sometimes. Does anyone know anything that could help with the pain?

[horselip]

Hiya, so sorry to hear of this pain that u are having. Did you have decompression surgery for Chiari?

If so, there is a forum here on Medhelp that is very good.

Have you seen any doctors about this more recently? A neurologist who specializes in Chiari or even a pain center might be able to help you. There may be physical therapy or meds, or other procedures that might help.

Hard to get specific without knowing more.
Fell better.
Horselip

[horselip]

Also I forgot to say that.one thing that u said above is that sometimes your brain swells out the craniotomy hole. That might mean that you are still having pressure issues and that can really affect how you feel. There are meds, procedures and special testing that can be done to see if this is an issue or not.