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...
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.
I have had terrible problems sleeping since my surgery and have a slight focussing problem with my right eye. 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!
I'm very sorry to hear about everything you're going through, and everything you've been through. Sounds like its been a real hell, so you have my sympathy. Sorry to hear it.
You are so right when you say that neurosurgeons ignore the long term impacts--some of which are "unexpected"--of neurosurgery, esp. a craniotomy, which does damage a lot of nerves. I've been asking the same questions you have, or similar, at least. I had brain surgery (and a craniotomy, of course, like you) back in Aug 0f 2007 to remove part of my left temporal lobe (left temporal lobectomy) to address both years of refractory epilepsy and a low grade astrocytoma. And like you, I have also dealt with chronic pain, which has at times been hell on earth. I do have some burning on the left side of my face (my left cheek) but also terrible pressure feelings/tightness/squeezing across my entire forehead, around my eyes, and around my head, left side mostly, of course. It definitely gets worse when it's cold out, especially here in Chicago where it's a raw type of winter cold. Without doubt it's neuropathic pain, although I wonder if there is any relation to a possible increase in intracranial pressure, who knows. I haven't gotten any "magic diagnosis" other than neuropathic post craniotomy pain/headaches, although I just refer to it as head/facial pain. But anyway, I've been trying many options, and haven't really found a fantastic solution yet. I'm still searching, of course. Life has been on hold and I'm fed up with everything. I'm sorry I don't have any fantastic answers to your questions, and that our pain symptoms are slightly different, although somewhat similar also, but I want you to know you're not alone. There are suggestions that tegretol, a seizure med, may help--they say it can help w/neuropathic pain--but I"m not keen on that idea. (have you tried it, by chance?) As you mentioned, seizure meds are hell. I've been on a number of different ones for over 17 yrs, tegretol being one, so I know. Other people say medical marijuana can help, who knows. The sleeping pill temazepam can help somewhat with pain for me, actually, although it's not a miracle cure. (a low does during the day) Don't know if that may help you. If I learn anything new, I'll let you know. Drop me a note if you find any miracle cure, or new info. Best regards to you--
Thank you for your comments its always a great help when someone else has an idea of what you are going through. In my initial stages 1-2 years after surgery I certainly felt tightness, squeezing and pressure feeling on the right hand side of my head until the sponataneous shooting (electric shock) and piercing and boring which can also be continous.
Pain after Neurosurgery is such a neglected thing its always "oh it will get better with time." I think pain can be induced in many ways in Neurosurgery mine and yours involved the cutting of one the big chewing muscles. If this out of kilter you are likely to be in a lot of pain my chewing muscles have grown massively since my op and maybe this might be a good thing for you to do is to go see a physiotherapist to look at your musculature. I'm afraid in Neurosurgery whilst things aren't destroyed a lot can be aggrevated and the one thing I would advise anyone who has had Neurosurgery who is having persistent pain get it looked at because if there is something slightly wrong on the side of your surgery it hurts! I imagine that it is like a cascade effect I did have an MRI in 09 and everything seemed ok. The trouble is there is no way to detect whether something like a muscle or nerve is disturbed. Like you I have seen Maxillary facial, pain specialist, Opthamologist, Neurosurgeon, Neurology and many other dr's about my pain the only thing they seem to have is to chuck some nasty chemical into the mix that as far as a clinician is concerned "lets get it to a good level."
My current maxillary facial surgeon seems a lot more clued up indeed she is telling me that patients who have had Neurosurgery are coming in their droves. I hope for the benefit of us and many others she continues to try and find out why this seems to be the case.
I think my advice to anyone who has had a craniotomy and those especially involving the side of the head is to see a Physiotherapist.
For the past 4-5 years since surgery as much I have a University degree in Neuroscience and am now studying for a masters in translational neuroimaging its been hard work to get this!
One of the complications as previously mentioned is muscular imbalance in the chewing muscles, although my jaw seems ok on x-ray I learnt the other day from my physio that the jaw is really stiff!
You learn a lot from a physio and why I am likely to have had a lot of pain for the last 4-5 years. All the things one is advised to do with a jaw problem I have been doing that for the last 4-5 years! In the case of someone who has had neurosurgery a Physio is probably better prepared than anyone to advise you how to take the strain off your muscles. My theory and it could be nonsense if all these poor postures that I once did before the operation puts strain on muscles for some with a jaw problem then I am probably putting pressure on the nerves that might have been disturbed. With Neurosurgery you unfortunately have a lot of things disturbed muscles, nerves and tissues - unfortunately this damage had to be done to get to the small birth defect in my brain that at one stage was making having a normal life impossible. I once had so many seizures and the medication I had was so debilitating and it never controlled my seizures.
In the 1-2 years following Neurosurgery you feel so relieved that the surgery was a success and any residual headaches you have you take no notice of. Your mindset is "well i've had Neurosurgery things will get better with time" so everyone tells you! I think the best thing is to ensure that you are fully checked over before you go into the real world particularly after Neurosurgery.
These days a lot of people are just so obsessed with the cognitive changes after someone has Neurosurgery. Well instead of trying to assess all this with all these so called Neuro-psychological testing methods try and find out what exactly is causing them, the same with the pain that me and many others who have had Neurosurgery experience.
Thankfully my operation didn't go deep into the brain but my Neurologist insisted that I had all this Psycho babble testing! At long last and this is particularly prevelant with my Maxillary-facial surgeon who tells me that she is looking into why she is seeing so many patients with facial pain/headaches after Neurosurgery. There is some recent literature on it aswell you will never make anything perfect but you can at least try to...
Doing everyday things I can imagine will put strain on the things that were disturbed from neurosurgery and you simply don't realise this because you learn to live with it after being unwell for so long! I can imagine because of this pain it makes it harder for my eyes to work properly!
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