Aa
motor cortex stimulation
I have been diagnosed with central pain syndrome and atypical facial pain, much of which is bilateral, although the left side is often worse (regarding the atypical facial pain.) This all exploded in Feb of 2008, about 6 months after brain surgery on my left side, i.e. a left frontotemporal craniotomy and left temporal lobectomy (many years of refractory epilepsy initiated by a brain tumor.) I have tried everything under the sun for pain relief, but no luck. Only time has helped somewhat. Motor cortex stimulation (MCS) has been suggested. Does anyone who has symptoms similar to mine (central pain syndrome and atypical facial pain) have this implant? Any success? My pain involves constant pressure, tightness/squeezing, some burning/freezing symptoms. The pressure/tightness etc. is often bilateral, worst above and around my eyes, while the burning sensation is on the left side of my face only (surgery was on left side.) Pain meds only make things worse; only sleeping pills, i.e. temazepam, a benzodiazepam, help me. The anticonvulsant Neurontin helps a little, but I hate taking it. I know people have tried the MCS for trigeminal neuralgia (and it has helped them,) but this situation is different (i.e. I don’t have TN, no offense to anyone with TN)
I hope it has greatly helped some people out there with CPS and AFP…..I’m going absolutely crazy, and hoping my luck will change soon. Am 34, dieing to get life going. Thanks so much for reading this post, and hope it has helped some people out there……
I hope it has greatly helped some people out there with CPS and AFP…..I’m going absolutely crazy, and hoping my luck will change soon. Am 34, dieing to get life going. Thanks so much for reading this post, and hope it has helped some people out there……
Hello again!
Thank you so much for the information on CPS! I like the fact that you're "matter of fact." I know it takes time to write it all down, so it's much appreciated. It also means a lot to know you enjoy helping others, and that in doing so you are helping yourself. In any case, inquiring about your well being and how you are managing life is the least I can do, one medhelp member to another!
Yes, I'll second you on clinical experience. I think the best doc is one who has experience as a patient, actually. Since I've been receiving my medical care at two large teaching hospitals for years, I've also met many residents, and it can be interesting. They all seem pretty healthy--not one I've bumped into yet has had surgery of any kind, and I've spoken with many! Interestingly, I often find myself discussing different aspects of epilepsy......from what I've seen (and read,) it's unfortunately only light referenced in medical school, despite being one of the most common neurological diseases.
I've been doing some additional reading about CPS, and have come across information pretty much stating what you've explained here (although not as matter of fact.) CPS is (as you know) also referred to as post stroke pain, but it can of course happen to people who have, for example, MS or even refractory epilepsy (scarring from ictal activity.) I just find it interesting how certain aspects of CPS are clearly reflected in my situation, primarily that symptoms often start months (3-6) months after initial incident (brain is "remodeling" itself, when, as you've stated, neuro plasticity unfortunately is a key factor)
We'll have to touch base about the music--I also play a lot of piano, and love classical music. I enjoy playing pieces from the Romantic era...Schubert's Imprtomptus are some of my absolute favorites.
We'll keep in touch. You've been dealing with so much yourself, 30 years of chronic back pain, I don't know how you've managed.....give you a lot of credit. Colorado is a great place to reside if you enjoy getting some fresh air! You probably know it all already, but If I learn anything new regarding treatment for chronic back pain, I'll let you know. (AA is right up there on my list too, searching for new information.)
All best wishes to you as well! I'll keep you posted on how the MCS works out :)
Thank you so much for the information on CPS! I like the fact that you're "matter of fact." I know it takes time to write it all down, so it's much appreciated. It also means a lot to know you enjoy helping others, and that in doing so you are helping yourself. In any case, inquiring about your well being and how you are managing life is the least I can do, one medhelp member to another!
Yes, I'll second you on clinical experience. I think the best doc is one who has experience as a patient, actually. Since I've been receiving my medical care at two large teaching hospitals for years, I've also met many residents, and it can be interesting. They all seem pretty healthy--not one I've bumped into yet has had surgery of any kind, and I've spoken with many! Interestingly, I often find myself discussing different aspects of epilepsy......from what I've seen (and read,) it's unfortunately only light referenced in medical school, despite being one of the most common neurological diseases.
I've been doing some additional reading about CPS, and have come across information pretty much stating what you've explained here (although not as matter of fact.) CPS is (as you know) also referred to as post stroke pain, but it can of course happen to people who have, for example, MS or even refractory epilepsy (scarring from ictal activity.) I just find it interesting how certain aspects of CPS are clearly reflected in my situation, primarily that symptoms often start months (3-6) months after initial incident (brain is "remodeling" itself, when, as you've stated, neuro plasticity unfortunately is a key factor)
We'll have to touch base about the music--I also play a lot of piano, and love classical music. I enjoy playing pieces from the Romantic era...Schubert's Imprtomptus are some of my absolute favorites.
We'll keep in touch. You've been dealing with so much yourself, 30 years of chronic back pain, I don't know how you've managed.....give you a lot of credit. Colorado is a great place to reside if you enjoy getting some fresh air! You probably know it all already, but If I learn anything new regarding treatment for chronic back pain, I'll let you know. (AA is right up there on my list too, searching for new information.)
All best wishes to you as well! I'll keep you posted on how the MCS works out :)
Clinical practice gives a medical doctor special knowledge that can never be gotten from textbooks or medical papers. For instance, I used to know a lot about what was ailing ranch animals because I visited with them every so often. You get to know what makes them tick, and can usually figure out why they're not feeling so well, from a combination of training and familiarity.
However, my knowledge of treating pain is limited to what I read, and my own clinical experience as a patient, which I believe is quite valid. We are experts in our own pain syndromes. However, I never claim to be an expert in treatment options. I don't even always know what's best for me (and don't claim to know -- I need my doctor)
Clinical experience gives an intuitive feel for a practice and is invaluable. One cannot be a medical doctor without clinical experience. Book work isn't enough. This is why we turn medical students free on unsuspecting patients at a teaching hospital. I am a patient at a university pain center, and enjoy working with residents because I get to teach and learn at the same time.
The details you read about efficacy of barbituates, opiates, and the stim comes directly from clinical experience, and this kind of information will go a long way in helping you get the treatment you need to feel better.
I encourage you to continue to read all you can, and at the same time ask questions of your doctors. You are very bright and I'm confident that you will find the answers to your particular health puzzle.
Central pain -- I'll give you my Reader's Digest version of central pain syndrome. Afferent nerve impulses refer to pain messages traveling from the peripheral nervous system to the brain. The peripheral nerves terminate at a synapse in the spine (an area called the dorsal horn). The pain message then again travels on up to the brain on a nerve fiber as an electrical charge that again synapses, this time in the brain stem. A thrid time nerves carry the signal to the mid-brain, where it is interpreted as a "pain".
In the synapses, nerve impulses are converted from electrical energy to chemical energy. When a pain signal synapses in the dorsal horn, it causes chemical neurotransmitters to be released, which are picked up by fibers that go up the cord to the brain, but the neurotransmitters also invoke signals on other fibers that travel to the other side of the spine (and go up the cord if strong enough), and can also go up or down a few levels, synapse, and go up the cord. This creates what we call referred pain.
Because nerve cells change through a property called neuro-plasticity in the presence of long-term pain signals, the dorsal horn can "short circuit" causing a feedback loop that stays open, sends pain signals up the cord to the brain without having any stimulus from the peripheral nerves. This is the origin of central pain or central spine pain. It's a function of steady pain and neuroplasticity.
It is theorized this 'short circuit' can also occur in the brain stem, where cord signals again synapse, causing a flood of neurotransmitters to invoke pain signals into the mid brain (where they "hurt").
Of course, this is a very simplified description of a process that is quite complex, but essentially, central pain syndrome is a 'short circuit' of nervous tissue causing continuous pain signals to travel to the brain, without the need for peripheral nervous system stimulus. The brain still feels the pain, of course.
Thank you for asking about me. My pain is managed with opiate-based analgesics, both long acting and breakthrough dosing. I've been using opiates for over 30 years, and 24/7 for over 21 years now. (I'm going to donate my body to neuroscience and perhaps we'll learn what half a life of opiate treatment does to a brain.)
I also try to walk everyday, and I live in an area where I have access to good hiking and a lot of sunshine. I also get physical therapy when I need it, and have a toolbox full of cognitive techniques for dealing with pain flares. I play the piano which helps me forget about pain for a while, and listening to music also helps alot.
I also have a very smart and sympathetic wife who listens to me theorize or complain, even though she's heard them thousands of times, but she knows this is another way that I process my pain. Another way I help my own pain is to help people online, like this.
I've told you about the ketamine infusions. Over the past few years I've been introduced to interventional pain treatments like injections and rhyzotomies. The injections can break up chronic muscle spasm, and the nerve destruction treatments help lower the pain of spinal osteoarthritis.
Of course, I'm always looking for new tricks to reduce my pain by a point. Living with pain is a game of inches, or of incremental reductions in pain. If I'm dealing with level 7 pain, and opiates lower it 2 points, reading a mystery novel lowers it another point, laying down another point -- I've got a 4 point reduction, over half, leaving me with a very tolerable level 3 pain.
Best wishes.
However, my knowledge of treating pain is limited to what I read, and my own clinical experience as a patient, which I believe is quite valid. We are experts in our own pain syndromes. However, I never claim to be an expert in treatment options. I don't even always know what's best for me (and don't claim to know -- I need my doctor)
Clinical experience gives an intuitive feel for a practice and is invaluable. One cannot be a medical doctor without clinical experience. Book work isn't enough. This is why we turn medical students free on unsuspecting patients at a teaching hospital. I am a patient at a university pain center, and enjoy working with residents because I get to teach and learn at the same time.
The details you read about efficacy of barbituates, opiates, and the stim comes directly from clinical experience, and this kind of information will go a long way in helping you get the treatment you need to feel better.
I encourage you to continue to read all you can, and at the same time ask questions of your doctors. You are very bright and I'm confident that you will find the answers to your particular health puzzle.
Central pain -- I'll give you my Reader's Digest version of central pain syndrome. Afferent nerve impulses refer to pain messages traveling from the peripheral nervous system to the brain. The peripheral nerves terminate at a synapse in the spine (an area called the dorsal horn). The pain message then again travels on up to the brain on a nerve fiber as an electrical charge that again synapses, this time in the brain stem. A thrid time nerves carry the signal to the mid-brain, where it is interpreted as a "pain".
In the synapses, nerve impulses are converted from electrical energy to chemical energy. When a pain signal synapses in the dorsal horn, it causes chemical neurotransmitters to be released, which are picked up by fibers that go up the cord to the brain, but the neurotransmitters also invoke signals on other fibers that travel to the other side of the spine (and go up the cord if strong enough), and can also go up or down a few levels, synapse, and go up the cord. This creates what we call referred pain.
Because nerve cells change through a property called neuro-plasticity in the presence of long-term pain signals, the dorsal horn can "short circuit" causing a feedback loop that stays open, sends pain signals up the cord to the brain without having any stimulus from the peripheral nerves. This is the origin of central pain or central spine pain. It's a function of steady pain and neuroplasticity.
It is theorized this 'short circuit' can also occur in the brain stem, where cord signals again synapse, causing a flood of neurotransmitters to invoke pain signals into the mid brain (where they "hurt").
Of course, this is a very simplified description of a process that is quite complex, but essentially, central pain syndrome is a 'short circuit' of nervous tissue causing continuous pain signals to travel to the brain, without the need for peripheral nervous system stimulus. The brain still feels the pain, of course.
Thank you for asking about me. My pain is managed with opiate-based analgesics, both long acting and breakthrough dosing. I've been using opiates for over 30 years, and 24/7 for over 21 years now. (I'm going to donate my body to neuroscience and perhaps we'll learn what half a life of opiate treatment does to a brain.)
I also try to walk everyday, and I live in an area where I have access to good hiking and a lot of sunshine. I also get physical therapy when I need it, and have a toolbox full of cognitive techniques for dealing with pain flares. I play the piano which helps me forget about pain for a while, and listening to music also helps alot.
I also have a very smart and sympathetic wife who listens to me theorize or complain, even though she's heard them thousands of times, but she knows this is another way that I process my pain. Another way I help my own pain is to help people online, like this.
I've told you about the ketamine infusions. Over the past few years I've been introduced to interventional pain treatments like injections and rhyzotomies. The injections can break up chronic muscle spasm, and the nerve destruction treatments help lower the pain of spinal osteoarthritis.
Of course, I'm always looking for new tricks to reduce my pain by a point. Living with pain is a game of inches, or of incremental reductions in pain. If I'm dealing with level 7 pain, and opiates lower it 2 points, reading a mystery novel lowers it another point, laying down another point -- I've got a 4 point reduction, over half, leaving me with a very tolerable level 3 pain.
Best wishes.
Hi again,
(Sorry to take a while getting back…finished this morning)
How interesting, a large animal vet! That's an asset, in my opinion. I do think it gives you an insight into a number of medical issues. It’s a pleasure to communicate with someone who is knowledgeable about a range of issues! :)
Wow, chronic spine diease for 30 years! I’m really very sorry to hear it. That's certainly a hell to deal with. How do you manage things painwise?
Thanks for your notes about effexor and other SNRI antidepressants. I did try Cymbalta twice, but got excruciating headaches each time. I’d like to try Effexor. Is there a particular antidepressant that helps a lot with your pain? (in addition to the Ketamine infusion?) I'm going to read up about additional options regarding anti-depressants and pain. I’m not keen about anti-seizure meds.
With the actual pain meds, I actually never liked the idea of taking any of them. I did try a variety of these meds, oxycodone, fentanyl patches, avinza, hydrocodone, the usual, but I always seemed to get adverse reactions, and my pain often worsened. I thus wasn’t many of them for extremely long periods of time (but long enough to know.) Been a while since I last took any of those particular meds (working with other things instead.)
I don't know very much about the ketamine infusion....I'm going to read up about that too. Thanks for the info. It's really interesting you mentioned it--the article I've been reading regarding motor cortex stimulation (by Richard Osenbach, MD, on Medscape, called “Motor Cortex Stimulation for Intractable Pain”) talks a little about ketamine. They say studies have suggested (I’m not taking this for granted) that if you are sensitive to barbiturate or ketamine, but resistant to morphine, you have a greater chance of finding some degree of pain relief with this implant (I fall into this class.)
The article also talks about central and deafferentation pain. They say central pain is related to a primary lesion in the brain, while D pain has to do with “interruption of afferent nerve impulses.” I have more questions about this than I can write here. Some of this I know, but again, I have questions I'm trying to answer. I know much more about epilepsy and seizures ! I hope the MCS can work with both types of pain (central pain syndrome and atypical facial pain) From what I read, I think it may be possible.
Actually, you're right about adhesive arachnoiditis...that's me. It's very frustrating, as I feel like I'm walking on thin ice. I'm pretty worried about doing certain things I never thought about before, or falling again, injuring my back beyond repair (been sore enough already) That could happen so easily, they call it a time bomb waiting to go off. On Thursday I finally received some old medical records from 1997 discussing some selective L3 and L4 epidurals I had at a hospital pain clinic. Two separate injections of Isovue dye were used to visualize things (mylogram)......i.e. I've confirmed whom the culprit is. No mention of the possibility of adhesive arachnoiditis anywhere in the consent form at that time. I recently dug up warnings from the pharma company who produces Isovue (from that year) stating it should NOT be used for intrathecal administration…they mention adverse reactions like death, paralysis, cerebral hemorrhage…and arachnoiditis. I’m just furious. I was only 17 at the time.
Anyway, sorry. Let’s keep in touch—again, I really appreciate your support and advice on everything—it goes a long way. If there are any questions I can help you with, please let me know as well. Thanks!
(Sorry to take a while getting back…finished this morning)
How interesting, a large animal vet! That's an asset, in my opinion. I do think it gives you an insight into a number of medical issues. It’s a pleasure to communicate with someone who is knowledgeable about a range of issues! :)
Wow, chronic spine diease for 30 years! I’m really very sorry to hear it. That's certainly a hell to deal with. How do you manage things painwise?
Thanks for your notes about effexor and other SNRI antidepressants. I did try Cymbalta twice, but got excruciating headaches each time. I’d like to try Effexor. Is there a particular antidepressant that helps a lot with your pain? (in addition to the Ketamine infusion?) I'm going to read up about additional options regarding anti-depressants and pain. I’m not keen about anti-seizure meds.
With the actual pain meds, I actually never liked the idea of taking any of them. I did try a variety of these meds, oxycodone, fentanyl patches, avinza, hydrocodone, the usual, but I always seemed to get adverse reactions, and my pain often worsened. I thus wasn’t many of them for extremely long periods of time (but long enough to know.) Been a while since I last took any of those particular meds (working with other things instead.)
I don't know very much about the ketamine infusion....I'm going to read up about that too. Thanks for the info. It's really interesting you mentioned it--the article I've been reading regarding motor cortex stimulation (by Richard Osenbach, MD, on Medscape, called “Motor Cortex Stimulation for Intractable Pain”) talks a little about ketamine. They say studies have suggested (I’m not taking this for granted) that if you are sensitive to barbiturate or ketamine, but resistant to morphine, you have a greater chance of finding some degree of pain relief with this implant (I fall into this class.)
The article also talks about central and deafferentation pain. They say central pain is related to a primary lesion in the brain, while D pain has to do with “interruption of afferent nerve impulses.” I have more questions about this than I can write here. Some of this I know, but again, I have questions I'm trying to answer. I know much more about epilepsy and seizures ! I hope the MCS can work with both types of pain (central pain syndrome and atypical facial pain) From what I read, I think it may be possible.
Actually, you're right about adhesive arachnoiditis...that's me. It's very frustrating, as I feel like I'm walking on thin ice. I'm pretty worried about doing certain things I never thought about before, or falling again, injuring my back beyond repair (been sore enough already) That could happen so easily, they call it a time bomb waiting to go off. On Thursday I finally received some old medical records from 1997 discussing some selective L3 and L4 epidurals I had at a hospital pain clinic. Two separate injections of Isovue dye were used to visualize things (mylogram)......i.e. I've confirmed whom the culprit is. No mention of the possibility of adhesive arachnoiditis anywhere in the consent form at that time. I recently dug up warnings from the pharma company who produces Isovue (from that year) stating it should NOT be used for intrathecal administration…they mention adverse reactions like death, paralysis, cerebral hemorrhage…and arachnoiditis. I’m just furious. I was only 17 at the time.
Anyway, sorry. Let’s keep in touch—again, I really appreciate your support and advice on everything—it goes a long way. If there are any questions I can help you with, please let me know as well. Thanks!
I am not a medical doctor but have medical training (retired large animal vet), but I have lived with chronic spine disease for over 30 years, Sorry, but have had no experience with brain disease (my central pain is in the spine). fMRI (so-called Fast MRI) is used to study the working brain.
I do try to keep current with pain medicine related to my condition, but I am not as knowledgeable as a practicing neurosurgeon, and it sounds like yours knows his stuff, so I'm going to tell you to listen to him/her.
I'm glad that temazepam is working for you, and yes, Effexor and other SNRI antidepressants are known to be effective for neuropathic pain. The paradoxical effect of opiates may be due to hyperalgesia, which is not well understood, however, one treatment helps me is a ketamine infusion. If you work with a pain clinic, perhaps they have heard of this treatment for hyperalgesia and opiate tolerance. (If not, search PubMed for "ketamine infusion for chronic pain" for recent research.) Also, methadone may be effective for pain where other opiates are not, due to its NMDA antagonist properties. I offer these as suggestions to bring to your pain doc.
I remember a post of yours on arachnoiditis -- I hope that you're not suffering from both conditions.
Best wishes and good luck with the stim. Remember that its success also depends on the programming, so keep trying.
I do try to keep current with pain medicine related to my condition, but I am not as knowledgeable as a practicing neurosurgeon, and it sounds like yours knows his stuff, so I'm going to tell you to listen to him/her.
I'm glad that temazepam is working for you, and yes, Effexor and other SNRI antidepressants are known to be effective for neuropathic pain. The paradoxical effect of opiates may be due to hyperalgesia, which is not well understood, however, one treatment helps me is a ketamine infusion. If you work with a pain clinic, perhaps they have heard of this treatment for hyperalgesia and opiate tolerance. (If not, search PubMed for "ketamine infusion for chronic pain" for recent research.) Also, methadone may be effective for pain where other opiates are not, due to its NMDA antagonist properties. I offer these as suggestions to bring to your pain doc.
I remember a post of yours on arachnoiditis -- I hope that you're not suffering from both conditions.
Best wishes and good luck with the stim. Remember that its success also depends on the programming, so keep trying.
Thank you very much for your positive feedback and support...helps more than I can tell you.
It helps to hear that MCS is a promising area of treatment. Yes, success is dependent on proper placement. I know they use a fMRI to place two sets of 4 electrodes. At least that's what my neurosurg. plans to do. He talks about doing burr holes. Some neurosurgs seem to think a small craniotomy gains better effects (easier to gain right placement of electrodes.) I really don't know what to say on that one. Have you heard any feedback on this? My neurousurgeon is at University of Chicago, and seems pretty familiar with all this. Has his own techniques (like all surgeons, of course)....just hope he's right!
Have you had a fMRI? I've had many MRIs, but never a fMRI. THe neurosg says I'd be asleep...seems kind of odd, since it's a fMRI. Have to look up that one!
I'll have the non-invasive pre-surgical trial called trans cranial magnetic stimulation this week. I hope it is accurate in its predictions...I'm always a little suspicious of those types of tests. At least I can test the MCS before it is implanted permanently.
I've read that if you have some relief with a barbituate, and morphines have not helped, you have a greater chance of some pain relief with MCS. Benzos (a sleeping pill called temazepam) have helped with my pain (not completely, but a fair amount) while pain killers actually make my pain worse. Hope this is an accurate (somewhat) prediction!
Out of curiousity, have you tried the pain med effexor? It's an anti depressant, supposed to be pretty helpful with pain.
Thanks again for your help, very much appreciated. Sorry for a long mail...all the best to you as well!
It helps to hear that MCS is a promising area of treatment. Yes, success is dependent on proper placement. I know they use a fMRI to place two sets of 4 electrodes. At least that's what my neurosurg. plans to do. He talks about doing burr holes. Some neurosurgs seem to think a small craniotomy gains better effects (easier to gain right placement of electrodes.) I really don't know what to say on that one. Have you heard any feedback on this? My neurousurgeon is at University of Chicago, and seems pretty familiar with all this. Has his own techniques (like all surgeons, of course)....just hope he's right!
Have you had a fMRI? I've had many MRIs, but never a fMRI. THe neurosg says I'd be asleep...seems kind of odd, since it's a fMRI. Have to look up that one!
I'll have the non-invasive pre-surgical trial called trans cranial magnetic stimulation this week. I hope it is accurate in its predictions...I'm always a little suspicious of those types of tests. At least I can test the MCS before it is implanted permanently.
I've read that if you have some relief with a barbituate, and morphines have not helped, you have a greater chance of some pain relief with MCS. Benzos (a sleeping pill called temazepam) have helped with my pain (not completely, but a fair amount) while pain killers actually make my pain worse. Hope this is an accurate (somewhat) prediction!
Out of curiousity, have you tried the pain med effexor? It's an anti depressant, supposed to be pretty helpful with pain.
Thanks again for your help, very much appreciated. Sorry for a long mail...all the best to you as well!
Dear Spitfire, I am very sorry to hear of your central pain syndrome. Both brain central pain and cord central pain are difficult to treat and have a poor prognosis with medical treatments.
Treatment with opiates has shown mixed results, but carbamazepine and amitriptyline may help.
Also, if there is a university pain clinic in your area, they may offer specific infusion treatments for your condition.
Mid-brain stimulation therapy is a promising (relatively) new area of treatment. Success is dependent on proper placement of the electrodes, so find an experienced interventional pain doctor, or neurosurgeon to do the procedure.
I'm sorry that I don't have any more suggestions. Best wishes for success with this procedure.
Treatment with opiates has shown mixed results, but carbamazepine and amitriptyline may help.
Also, if there is a university pain clinic in your area, they may offer specific infusion treatments for your condition.
Mid-brain stimulation therapy is a promising (relatively) new area of treatment. Success is dependent on proper placement of the electrodes, so find an experienced interventional pain doctor, or neurosurgeon to do the procedure.
I'm sorry that I don't have any more suggestions. Best wishes for success with this procedure.
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