Long Term Pain Post Craniotomy?

Hey all!
I had craniotomy to have a brain tumor (astrocytoma) removed from my right temporal lobe two years ago.

Since my surgery in June of 2010, I have had consistent, but not completely constant pains and aches in my temporal muscle and have had nerve burning and pain near my incision site. The pains are occasionally sharp and sudden, almost like brain freeze or charlie horse in my scalp, and other times the pain and discomfort lasts for hours and is a constant, incessant burning ache in the entire area of my temporal muscle but centralized in a spot just above my ear where my incision site passes over.
My neurosurgeon just last week removed one of my titanium pins to try and help alleviate the pains, but I sadly have been experiencing familiar pains in the same areas as before. My hope is that I'm having these pains currently because of the healing incision of the removal of the pin, but I just don't know anymore.

Did anyone else have long term pains after a temporal lobectomy or other brain surgeries?
I'm not looking for a diagnosis, I just want to know what to ask about the next time I see my doctor.

[rumpled]

There are a lot of nerves in the face and scalp. I know in other incisions I have elsewhere, I had a lot of residual pain for quite a long time - sort of like lightening bolts hitting around the site. They did eventually go away but I am on nerve meds.

I know that after a while - and it took a long while - for the pains to go away completely.

Now you have had another surgery - so another set of swelling and healing... have you tried any "local" ways to help such as a warm compress or cool compress? Have they tried some of the nerve meds - gabapentin, topamax, keppra and the like?

[r0xmyface0ff]

I've been on gabapentin, carbamazepine, amitriptyline, and i was just on a short stint of 1000mg Keppra post op. I am really sensitive to the CNS side effects of all the medications, so I haven't been taking any. The amitriptyline was particularly bad! it made my arms feel like pins and needles for two days straight!

I know I posted on here before when they thought it was a neuroma causing pain, but then my surgeon back tracked and said he didn't think the neurologist was right so he suggested they take out the pins.
I'm healing well from that procedure, and the surgery itself only took 15 minutes!

It's just disheartening to go through surgery again thinking it was going to fix everything...when everything hurts the same as it always has.

[rumpled]

I got a nerve hit in my surgery to correct an infection - so I take topamax - it makes me stupid, but I deal with it. I tried the others and the side effects were intolerable - so agree about the side effects.

It is a shame that just removing the pin(s) did not help... have they thought about botox? I know my doc considered that for me for a while but it would have effected my eye, so it was not an option.

[TOM765]

Hello everyone i'm new to this forum 4 years ago I had Neurosurgery to remove an encephalocele from my right temporal lobe, thankfully I have had no seizures whatsoever and I no longer have to endure the debilitating side effects of my medication.  Since this operation I have had problems with facial pain/headaches these can be of variable type.  After 4 years I think I may have come up for the description of this type of pain.  It tends to be worse if I am doing a lot of close up work or if its a cold or hot day.  I have recently given a maxillary facial surgeon a detailed account as shown below...

START

Strong persistent tingling in the right hand side of my face.
Spontaneous electric shocks in the right hand side of my face also present at times are a spontaneous piercing and boring pain.  This pain can also be of a burning type.  Constant piercing and boring pain that varies in its intensity and can be at the same time accompanied by electric shocks.  Piercing and boring can be spontaneous.

END

I have had terrible problems sleeping since my surgery and have a slight focussing problem with my right eye and i'm now thinking that the pain i've been in has caused this.  As a result of the surgery I have an aspect of muscular instability of my chewing muscles and the key question I have is for anyone who has had a craniotomy for whatever condition is this type and characteristic of pain similar to yours?  I have recently seen a maxillary facial surgeon and it looks as though I have had symptoms of facial migraine and neuropathic pain.  If any muscles used in chewing have been cut off in any Neurosurgery make sure you get physiotherapy straight away because it really hurts and these dysfunctions can be made worse during potentially stressful times.  I think with Neurosurgery a lot unfortunately gets disturbed and in my opinion this gets overlooked in the long term.  Its seems as though only over the last few years that pain is an acknowledged effect from Neurosurgery!  

[rumpled]

Sounds like you have the fifth nerve issue - or trigeminal neuralgia (hope I spelled that right).

There is a class of meds that can work - or they can do botox (if it does not numb the eye) or even surgery on the nerve so there are options. It does happen to some of us. I hope you can find a solution to your pain.

[TOM765]

My advice to anyone who has Neurosurgery is to see a physiotherapist.  Learn from them how to not inadvertantly put stress and strain on all that is disturbed in Neurosurgery.  Make sure that the surgeon examines the motility of your facial  muscles especially at the site of the incision or close to.  The key feature if any nerves are damaged is numbness, thankully I don't have this I can imagine that my muscles are irritating my nerves.  Also regarding my vision I think that my problem might be something called visual stress if you have difficulty with reading then use a coloured overlay to help you it has helped me enormously and I won't hopefully have any more visits to an Opthamologist.  

[rumpled]

Thanks for the good advice. I hope you continue to improve.

[DieselTech]

I had a bacterial abscess removed from the left temporal lobe. I had three of them scattered throughout my brain but time was short and that was the largest and best case choice for reducing pressure. that was the end of October 2008. I have had nearly constant pain from a mild sting to feeling like I am hit in the face with a brick every time my heart beats. Have been feeling like a lab rat since then. Nearly every drug has been tried, some of which made me become extremely violent even at the lowest doses. I do not condone the use of Xanax but it has helped tremendously over the past two years. The only issue I have with this med is that trying to lower the dose brings on withdrawal that brings me to my knees begging for help. The withdrawal from this drug feels just a little worse than what it "fixed" only I am a little more stupid now. My memory is all there but I think in pictures and have difficulty finding the words to explain anything in real time. As bad as that sounds things are actually much better. I am only in urgent care every 5-7 months now. Once the pain starts I have to be put forced to sleep. lack of sleep is what causes most of my headaches and when the pain keeps me from sleeping, it is all down hill from there. I have found the point at which I must go to urgent care. They knock me out for a few hours then wake me up and inject me with dilaudid or morphine. I have come to the conclusion that I am in this for the duration but will never quit the battle. Always ask questions. Never let anyone try to tell you there is nothing more that can be done.

[horselip]

I truly believe that post craniotomy pain is fairly widespread. And that every case is different. It helps to advocate for yourself too.

I suffer from pain too, but from transphenoidal surgery. I've been working with a pain center that has helped somewhat. I underwent a radio frequency ablation  (RFA) to one branch of the trigeminal nerve. That procedure has helped me some. I am about to under the diagnostics for another RFA May 6th and I am hopeful.

Trigeminal neuralgia and neuropathies are truly debilitating. But the good news is that there are some things that do help depending on the type that you have. Tidies suck when you've got a nerve close to the eye though as the treatments an cause damage to that area!

Horselip

[rumpled]

I also got hit with the facial nerve pain. I was lucky to hit an ok balance with topamax, but I also investigated botox (have you?) and other things. I also use acupuncture which I frankly did not believe in and used as a last ditch oh well and have been going for years now.

I tried pain mmgt but I just hate all those pills and side effects - the topamax has enough!