post craniotomy pain (had surgery for refractory epilepsy)

[spitfire2]

I've been dealing with chronic post craniotomy pain for almost 5.5 years now (had left temporal lobectomy for both 13 yrs of refractory epilepsy and an astrocytoma in 8/2007) and have tried almost every option under the sun to deal with the pain.  Other than time, nothing has helped.  My pain is a chronic pressure/squeezing feeling across my forehead and irritation around the center of the C shaped scar on the left side of my head going from my forehead to behind my left ear.  I have two questions: has anyone ever had one or more of their metal plates and screws removed, noticing a reduction in pain?  I wonder sometimes if the soreness I have in the middle of the scar, around a plate, is partly responsible for at least some of the pain I have.  Secondly, has anyone found any relief using medical marijuana for their pain?  You don't have to answer my second suggestion if you don't care to, but any information relating to either or both of my suggestions is much appreciated.  Thanks to everyone!  

PS: for note, I felt it most helpful to put my question here in the epilepsy community vs. chronic pain, since my pain is a result of surgery for epilepsy....the pain section of this website is so broad...

[sarper83]

Hi,
First of, thank you for posting this question!  I had the same surgery 10 years ago and recently have been having pain around the scar and burr holes, and headaches.  No one seems to know what to do with me and I'm not sure if there is anything that can be done.
I tried to make an appointment with neurosurgery just for a look-see but they want me to see a neurologist first.  Best of luck!

[spitfire2]

FOrgot to mention, do you think my pain may be due to nerve entrapment? I hear they are able to do surgery for such issues, if you know the origin of the pain.  I have soreness along part of the scar, as well as squeezing across my forehead and around the eyes.  Is it possible that one or more nerve entrapments may be responsible for this, and how do I find out where they might be?  Trial and error injections along the scar, maybe?  Would that also cause the squeezing feeling I keep mentioning?  It's hard when the pain is over a broad area, although I know nerves have many branches.  IS there a scan I could do, other thank XRay, to follow the nerves?  

There is a doc who operates regarding nerve entrapments, but you have to know exactly where the "problem" is, and I don't.  

Thanks again

[spitfire2]

Thank you so much, really.  I've been wondering if my pressure pain, i.e. that type of squeezing pain across my forehead might be due to some type of nerve compression or nerve entrapment.  It sounds like a good idea to see a neurosurgeron for a second opinion.  Do you think a nerve entrapment along the scar, possibly caused by one of the plates, may be responsible also for the squeezing feeling across my forehead?  

For note, I have tried injections, (supraorbital and infraorbitral, as well as iinjections along the scar) cryoprobe procedures, botox, a trial period regarding implanting two electrodes in my forehead, acupuncture, numerous pain meds, spinal tap, to no avail.  I've been seeking treatments for 5 years now, so it has been some time.  THus my interest in maybe removing a plate, see what happens.  I don't know if it will do anything, since my pain is probably neuropathic in nature, thus my interest in medical M (see initial comment)  I could retry some injections along the scar, but I'm so tired of all this, I don't know what to do.  My pain is also over a broad area, which makes it difficult to pinpoint the "source," so to say.  THanks much, and I'll keep you posted.  If there is anything else you can think of, please let me know.  Johns Hopkins was recommended, so perhaps I'll try them, but I am getting tired of everything, I don't know what to do.  I'm at my wits end, honestly. (Sorry, don't mean to gripe)  THanks again for your well wishes, and let me know of anything new!  

[Arti Sharma, M.D.]

Hi there,
A thorough clinical examination and work up may be necessary for exact diagnosis of your problem. If the pain is caused due to the metal plates and screws you should consult your neurosurgeon he could remove them if they are causing pain but then that will require another surgery.  The common causes of this chronic pain could be either due to meningeal inflammation, nerve compression, nerve entrapment, muscular and meningeal fibrosis etcd.Scar neuroma is another possible cause of this headache. Neuromas form abnormal tissue growth and may lead to nerve entrapment .Local infiltrations or nerve blocks may be of diagnostic and therapeutic value. It is best to see a neurosurgeon and get examined. Do get evaluated. Keep me posted.
Best wishes and regards!