Here is my story. One of the moderators just let me know I have symptoms of GN. After looking into it (I can’t find much on it), it seems like this is EXACTLY what I have. Now I feel hope and like I am armed to go to the next specialist (an ENT that specializes in nerves) on 9/26/14. If you have had this same experience with my symptoms, please let me know or guide me to a place to learn more…I’m brand new here and trying to navigate around. I’m sorry if you have recently read this in another discussion- I am desperate for any answers!
I am a 37 year old female and:
March 2013 I went to an urgent care after hours after I could no longer stand the deep, constant, dull pain deep in my ear. I was diagnosed with an ear infection and put on 2 weeks of antibiotics (I am highly allergic to almost all antibiotics, so this was very disturbing to me). When the pain did not get any better after the 2 weeks of antibiotics, I went back to the same urgent care doctor. I was told I still had an ear infection…took 2 more weeks of antibiotics and now steroids. After the pain did not go away, I went to my PCP. He also diagnosed me with an ear infection. The next day (March 2013) I went to an ENT who said I never had an infection, it was diagnosed as TMJ.
Fast forward to 8/2014. Pain is unbearable and I can’t take it anymore. Made an appt. with an Oral Surgeon to look into TMJ further to try and stop the ear pain. I had an MRI and the oral surgeon recommended surgery. I HAD SURGERY on my jaw on 8/19/2014. THE PAIN IS WORSE! The pain went from a dull, deep, near constant pain to a sharp, stabbing (like a fork is deep in my ear), sometimes burning, sometimes pain radiates to my jaw (I am still recovering from surgery). I have now been referred to another ENT that specializes in the nerves of the ear, but can’t get in until 9/26/2014.
The pain was so incredibly bad that I walked into my PCP (a new one, since the last misdiagnosed ear infection) last Friday and begged for help. She put me on prednisone, neurotin, and Rx pain pills. I have since weaned off the pred, am taking 600 mg neurotin/day and trying my best not to have to take the pain pills (I have to drive and can’t take them until I am back home).
I am trying to determine if I am suffering from GN. I don’t fit the same symptoms as TN, but some on ATN seem spot on, and GN seems like a real diagnosis. I do not have migraines, just jabbing, horrible pain in my ear…deep in my head. I would like to do research and try to find the right doctor to rule it in or out, so I do not have to keep bouncing between specialist and have SURGERY and still NO relief! Help, please, if this sounds familiar. Thank you in advance!
Sounds like what happened to me! It was amazing how I had a mysterious ear infection with no signs of any infection. After 2 weeks of the pred. I finally stopped taking it. Good luck with the research I have done everything to find anything out! But the whole migraine thing is frustrating because there is a difference between that and feeling like a steak knife is just hanging out in the side of your head. Its the craziest thing at least to me it is.
Honestly this group is one of your best resources it’s like we are all banded together with this horrible thing.
My apologies between the gabapentin (sp) pain and morphine I basically have no memory so I can’t quite remember where I was going with this or if you asked a question. But from what little bit I remember your story sounds like mine as well as the others. Good luck to you. Hopefully somebody responds in a proper way but if anything I would like to say thanks for sharing im having a hard time coping with this and being able to talk about it to someone who knows it helps.
I have suffered for 15 years and was just diagnosed last month. So many doctors, some much spent money (over 6,000 this year alone). Very story… Very similar to yours. I have tried many meds to no avail. The only relief I ever get is from vicodin and that is starting to lose effectiveness.
My recommendation is to find a neurologist that specializes in neuralgia issues. I finally did and I have surgery next week to have the nerve snipped that tells my brain there is pain.
I do not qualify for MVD surgery as my artery loop is too deep in my ear and I could go deaf from that surgery.
I’m in have bilateral GN & TN. An ENT initially diagnosed me. I now have a neurosurgeon handling it all. The ear pain is very difficult to treat with meds for me. My doc says only a MVD will work for my ear pain. I’m seeing him tomorrow to say let’s get this party started. I fear the cold, my ears have always been sensitive, but now it’s indescribable. But you know what I’m talking about…
Geniculate Neuralgia (aka "Nervus Intermedius"Neuralgia) is thought to be caused by vascular compression of a nerve branch between the 6th and 7th cranial nerves. The stabbing pain deep in the ear is the most frequent and characteristic presenting symptom, particularly when there are no indicators of infection process in elevated white blood cell count. Sadly, it is also common for dental specialists and even ENTs to miss the diagnosis in favor of TMJ Disorder -- without evidence of debris in the joint or locking up.
Several suggestions:
(1) Talk with your PCP about doing a basic genomics test to assess whether you have genetic factors which cause you to be resistant to the action of anti-seizure meds. There is a simple one involving only a saliva test, that may reveal genetic factors which are known to be related to medication resistance in several mainstream drugs, including pain relievers and the anti-seizure meds used in Epilepsy (of which Neurontin is one).
(2) Talk to our PCP about gradually raising your Neurontin dose levels. 600 mg/day is quite low for most people dealing with neuralgia. If you can't tolerate Neurontin at higher doses, Trileptal may be better tolerated. Another option is one of the trycyclic antidepressants such as Amitriptyline and Nortriptyline.
(3) Consult the doctor finder at Ben's Friends, linked as one of the sub-tabs from our "Doctors" tab in the menu above. The doctors are listed by medical disorder and by US state or (overseas) country and province. Find a neurosurgeon by calling or contacting them, who has successfully done MVD for GN. One in the US that I know has done so is Ken Casey near Michigan. I'm pretty sure Mark Linskey at University of California Irvine also does this variant. Linskey can be found on Facebook.There's a surgeon at Great Neck on Long Island (name escapes me at this hour), as well.
Also check the "find a doctor" sub-tab which is specific to TN doctors and hospitals.
MVD for GN is not a trivial operation because the nerve contact is relatively deep near the brain stem. But the nerve isn't actually "in" the ear.
THANK YOU!!! I was told by my PCP that I can take 300/mg 3 times a day of the neurotin, if 2 times a day isn't working. It makes me so sleepy, but I will start taking 900mg instead of 600mg. I haven't been able to tell if it has helped, but I'll up the dose and see if that makes a difference. I'm guessing others have had that help them? I live in SC, but at this point am willing to do whatever it takes to get rid of this pain. I just sent an email to the ENT nerve specialist I am going to see at the end of the month to see if he is familiar with GN. He is a top doc at MUSC, so I'm hopeful he will be knowledgeable. I asked him to refer me to someone else, so not to waste our time, if he is not educated in GN. I would like to at least be able to rule it in or out. Hopefully he will respond to my email, since I would be a new patient with him, I'm doubtful. Thank you for the info, I will also start researching the doctors on this site. This has almost been a miracle for me, finding this group online. I really feel strongly that GN is what I have going on. It helps that I can see other people have had frustrating, debilitating pain that is very difficult to describe. I know my family is sick of me complaining and then I keep hearing, "Don't get hooked on pain pills". I'm taking all measures not to, even skipping days and opting for pain (if bearable). It's getting old trying to explain myself. I feel like I'm stuck in the house, because I'm nervous my ear is going to start hurting somewhere, and I'll have to take a pill (then can't drive). This is affecting every single aspect of my life.
freespiritDanielle, your story is similar to mine but the time frame is different. I too have tmj. I am post op tmj surgery since 1986. I did have atypical facial pain before and after the surgery however the deep constant screwdriver ear pain went away. I had a repair of my own menicus and it was for the most part successful but it changed my bite and opening from 44 mm to 28 mm. Splints and then braces solved the bite problem. Then the atypical facial pain went into remission for almost 20 years. Just brief episodes like a ceiling fan blowing on my face would flare it up. I also had cervical spasm, first disc herniation was at c5-c6 which is not unusual for a tmj patient because of the way we posture our heads in a forward head position. This can tighten the muscles and cause you to lose the curve of your cervical spine which looks like whiplash. Facial pain can come from the neck too.
Your ear pain in the beginning does remind me of the same ear pain I had and a dx of tmj was most likely correct except you do not say screwdriver drilling pain so I am wondering what tests the oral surgeon did to dx a problem with the tmj joint. I hope your surgeon was able to tell you where the meniscus was in your jaw joint. My facial pain was worse after that surgery but the ear pain did go away unlike yours which now I believe sounds like GN. Stabbing pain is GN. I see you are going to an ENT that studies the nerves of the ear. I too went to an ENT and the nerves he studies were all about hearing loss, not the cranial nerves that cause GN. And he ruled out hearing loss and sent me back to my neuro to get a dx for GN. He does surgery on nerves related to the ear and hearing but the nerves to GN as in the intermediate nerve are cranial nerves which he said was brain surgery. But mine is atypical. It did start with stabbing and jaw pain while chewing but most of my ear pain is ear ache and ear lobe pain. It does spread outward from my ear to my cheek, upper lip and jawline and strangely I also have a bitter taste in my mouth that can get really intense. That is the glossoph...nerve and it can be involved with GN.
I am not a candidate for surgery. You may be. There is a great youtube video showing this surgery and they do isolate the 5th cranial nerve too I believe. My ENT told me the 5th is involved, 2 more much lower 9th, 10th or 11th and the intermediate nerve is cut. Google geniculate neuralgia surgery youtube. And the place to go to is UMPC, UPMC? in Pittsburgh.
I am so furious that even today serious issues with the cranial nerves can be aggravated from tmj surgery. My ENT was so informative about GN and ATN even though he could not do surgery on the nerves. He told me the tmj joint is only 1 or 2 mm away from the 5th cranial nerve. I am 58 now, had this surgery when I was 28 and I think I am riddled with arthritis. I am getting botox 3 to 4 times a year in the muscles that cause tmj, ON and neck pain. Ear pain can come from c2-c3. Also rhizotomy once a year at that level and c3-c6 have helped me. Find a good neuro and try meds. It may take awhile to find a combination that helps. I got lucky having amitryptiline added for severe sciatica to my gabapentin and baclofen that I was already taking at low dosages and the symptoms are mild to moderate. But.....I had back surgery, failed with nerve injury and my pain doc added time-released morphine to my percocet and that has kept the flare ups in control too.
I am unsure you will get an answer from this ENT. Call and find out if he does surgery for GN or surgery for cranial nerves. You need to see a neurosurgeon. It is brain surgery, not inner ear surgery that an ENT does mostly. MRI, 3-D MRI is the best test but I was told GN can't be seen on mri, it is a clinical dx, even TN is a clinical dx but surgeons want a positive MRI for that one. I would hate to see you wait to see an ENT that does not treat cranial nerves. I did the same and was very disappointed. But he was so nice and informative. I have since seen a neurosurgeon recommended from this site that simply told me anything invasive, even rhizotomy which my neuro suggested would make me worse. Sometimes true TN MVD's and GN MVD's are not without risks of ongoing more severe pain. My tmj surgery really messed me up with other issues but the horrible screwdriver pain went away.
I hope you get some answers. If the ENT can not help you then he or she should refer you to a neurosurgeon. I see "RED" was the moderator that helped you. He helped me too. I doubt an email will work but still call and ask if he does cranial brain surgery. You may need to rule out an ear problem. You are describing yours as jabbing pain deep in the ear which I think is GN. Stabbing pain is nerve pain. Some neuros and neurosurgeons want to hear electric shock like stabbing pain to dx cranial neuralgias. Even my sciatica is shock-like all the way down my leg from a nerve injury. I hope you have not sustained nerve injury from the tmj surgery. I did all my searching and going to one doc after another in 2013 for my ATN and atypical GN, The only treatment I may try is PNS, nerve stimulation which is implanted under the skin.
That sounds very, very familiar. Alarmingly. I've been at it now for about seven and a half years. You likely have GN or GPN. Both will give you terrible ear pain. Mine is relentless. One form of GPN presents as ear alone. It's very hard to distinguish between the two. You might want to email US neurosurgeon Michael Horowitz. He is very good with GN.
I'd be most happy to talk and hold hands should you wish to have a private dialogue if you want to friend me and chat.
My symptoms started with right-side ear pain for five and a half years. I then developed some throat and lacerating chest wall pain. In the last eight months my ears have become bilateral. I've dealt with all the same crap you've been through, including misdiagnosis TMJ, teeth ripped out, injections into jaw and on and on and on it went. I really feel for you.
I've just gone to another neurologist, hoping she was familiar with GN, as I have had all the symptoms for over two years, plus TN for seven. But turns out she has had one patient who moved right after diagnosis. What is wrong with the neurologists I'm going to, they all seem unfamiliar with it or are unwilling to diagnose it. An ice pick to the ear drum that can drop you to your knees. Plus I've had three occasions where I had multiple stabs in front of the ear, that were so bad, I started drooling, bitter taste in my mouth, my nose rain, I can't tell if I'm crying or eye watering AGONIZING.
invisible, I have had to educate my neurologist about GN. And thank God he has no ego and will open a book to study the nerves. He does botox for me which he originally started for neck pain. I had ATN then which had been in remission for almost 20 years. I also have a history of tmj and have had surgery for that joint. Ear ache pain, deep screwdriver pain comes with that one. About a year into the ATN I started to get stabbing ear pain, deep earache, and this all started with jaw pain especially on chewing. Another strange symptom was bitter taste in my mouth. That one no one could really give me a response on but I did find it in several research studies and blogs of others with it who also had GN. My stabbing pain resided after my neuro started to use botox in my scalp on the muscles that are related to tmj and ON. Nerves can not be injected with botox, only muscles. It took over 2 1/2 years to find a medication combination I could tolerate that had some effect on this pain. I am atypical GN and surgery was not offered to me from a neurosurgeon at a teaching hospital recommended on this site. Yours however has the stabbing ice pick and I think the stabs in front of the ear may be the tmj joint. There is a good you.tube surgery on geniculate neuralgia, just google it. There are at least 2 very good neurosurgeons mentioned on this site, one is from UMPC or UPMC in Pittsburgh, the other I can't recall. Interestingly cranial nerve 5, 2 lower ones and the intermediate nerve is sometimes cut. A very good ENT I saw told me the tmj joint is only 1mm away from CN 5.
I would suggest moist heat on the ear and jaw area when you get the stabs in front of the ear. But I think you are a surgery candidate. They do like to get positive MRI's. Make sure you get a 3-D MRI. You will most likely have to have your ears ruled out and possibly tmj too. My biggest clue that told me I had a form of GN was the bitter taste in my mouth and that was the first symptom I started to have before the ATN and atypical GN. Use rinses for dry mouth. I found cayenne pepper added to foods was helpful sometimes.
Everyone is different regarding a response to medications. I failed on tegretol, lyrica and cymbalta. I can tolerate low dosages of baclofen, gabapentin and amytriptiline. It was by accident adding the amytriptiline for other new pain I was having from failed back surgery that surprisingly 3 months later had an effect on the ATN and GN. I also use a hand held stimulator recommended on this site. I put it on the TN trigger points and sometimes it can arrest a bad flare up.
I will search for the literature I copied that notes bitter taste sometimes accompanying GN.
I hope you have a good neuro that won't mind being reeducated on GN. It is very rare. Sharon
invisible, I have attached files of 4 sites that describe GN with the bitter taste and drooling too. Also the MVD for GN. I just backed up a few responses on this page and I have already responded on this page.
You are not alone or invisible as far as this support group is concerned. You will be greeted with empathy and lots of knowledge. I traveled the whole circuit of docs for this thing, the neuro, ENT and neurosurgeon. I did not see someone for tmj again which I may still try but I ran into huge problems with my back.
I also forgot to mention I am looking into PNS for the ATN. Not sure if GN can be treated with this. I have a long search of doctors within a 100 mile radius to call but most probably do spinal cord stimulation. If all else fails, I was directed to a site for Saint Judes, www.sjm.com, patients, nerve stimulation, enter zip and you will get a list of doctors in your area that are doing PNS, not all, some just do SCS. Good luck to you, I wish you the very best. It is a journey to find all the answers. Sharon
I hope surgery went well. When you get the chance, will you update me on your progress? I still have so much to look into, but I have a MRI scheduled with and with out contrast of my brain on 10/10/14, followed by an appt with my neurosurgeon. I have to wait to find out what he decides, but want to get as much knowledge about my options as possible, before hand. I hope you are recovering well. Thank you for responding to my post and telling me your story.
Best Wishes,
Danielle
Tamara Mccourt said:
I have suffered for 15 years and was just diagnosed last month. So many doctors, some much spent money (over 6,000 this year alone). Very story… Very similar to yours. I have tried many meds to no avail. The only relief I ever get is from vicodin and that is starting to lose effectiveness.
My recommendation is to find a neurologist that specializes in neuralgia issues. I finally did and I have surgery next week to have the nerve snipped that tells my brain there is pain.
I do not qualify for MVD surgery as my artery loop is too deep in my ear and I could go deaf from that surgery.
Red,
Thank you so much for your advice and the information. I actually looked up doctors in my area, based on your suggestion from this site. I found one near me that wasn’t on this site, but you armed me with the right questions to ask. I actually emailed a neurosurgeon at MUSC, in Charleston, SC…Dr. Patel. He replied immediatley (the Oral Surgeon that did surgery on me 8/19/14 said he didn’t know why my pain was worse and wanted to refer me back to an ENT and NEVER REFERED ME, even after calling his office daily).
With the help of this forum and you, I realized I needed a neurosurgeon. I met with him 2 days ago and have a MRI with and without contrast of my brain scheduled, followed by an appt with the neurosurgeon. Finally someone is paying attention. He feels strongly that I have GN. The same day, I met with the speacilaty ENT and he confirmed everything from my ear, hearing, throat, nasil cavities, vocal chords, etc are all healthy.
The NS gave me Lyrica instead of neurotin. I will start taking that tomorrow. I’m now looking up what my options are if indeed, they do find a compressed vein/nerve. Whew this is hard to accept, but so thankful I found this group and diagnosed myself and contacted a doctor that can help.
Would you happen to know what the common steps are after finding out you need surgery? Which surgery should I try as a first resort and what happens after that?
THANK YOU SO MUCH FOR YOUR TIME AND THE INFORMATION!!! It really means a lot to me that so many people responded in such a short time. It gave me so much emotional and mental relief!
Richard A. “Red” Lawhern said:
Geniculate Neuralgia (aka "Nervus Intermedius"Neuralgia) is thought to be caused by vascular compression of a nerve branch between the 6th and 7th cranial nerves. The stabbing pain deep in the ear is the most frequent and characteristic presenting symptom, particularly when there are no indicators of infection process in elevated white blood cell count. Sadly, it is also common for dental specialists and even ENTs to miss the diagnosis in favor of TMJ Disorder – without evidence of debris in the joint or locking up.
Several suggestions:
(1) Talk with your PCP about doing a basic genomics test to assess whether you have genetic factors which cause you to be resistant to the action of anti-seizure meds. There is a simple one involving only a saliva test, that may reveal genetic factors which are known to be related to medication resistance in several mainstream drugs, including pain relievers and the anti-seizure meds used in Epilepsy (of which Neurontin is one).
(2) Talk to our PCP about gradually raising your Neurontin dose levels. 600 mg/day is quite low for most people dealing with neuralgia. If you can’t tolerate Neurontin at higher doses, Trileptal may be better tolerated. Another option is one of the trycyclic antidepressants such as Amitriptyline and Nortriptyline.
(3) Consult the doctor finder at Ben’s Friends, linked as one of the sub-tabs from our “Doctors” tab in the menu above. The doctors are listed by medical disorder and by US state or (overseas) country and province. Find a neurosurgeon by calling or contacting them, who has successfully done MVD for GN. One in the US that I know has done so is Ken Casey near Michigan. I’m pretty sure Mark Linskey at University of California Irvine also does this variant. Linskey can be found on Facebook.There’s a surgeon at Great Neck on Long Island (name escapes me at this hour), as well.
Also check the “find a doctor” sub-tab which is specific to TN doctors and hospitals.
MVD for GN is not a trivial operation because the nerve contact is relatively deep near the brain stem. But the nerve isn’t actually “in” the ear.
Granny,
I believe having the TMJ surgery aggrivated the nerver more. I had a dull constant pain, and then after surgery it became so much worse and stabbing. My Oral Surgeon flat out told me,
I’ve never heard of that and I fixed your ear, so I can refer you an ENT to fix your ear". I cried right there in front of him because I had an ENT refer me to him for TMJ.
The neurosurgeon, Dr Patel, at MUSC, did respond to my emial very quickly and the ENT actually called me! It was amazing to me that these 2 doctors took my email so seriously.
I now have a MRI scheduled on 10/10/14 with and without contrast of the brain, followed by an appt with the neurosurgeion. He is familiar with TN, ATN, and GN and has been doing decompression surgery for 2 decades. I feel so blessed to have found some doctors that give a bleep. I’m nervous about what the results of the MRI may show, so I’m trying to learn as much as I can about my options now, so I can make an educated decision. Thank you so much for the information and sharing your story. I can’t believe how great this forum is for me. I’m also trying Young Living essential oils, and I can’t believe they do seem to help the pain.
Thank you so much,
Danielle
Granny said:
freespiritDanielle, your story is similar to mine but the time frame is different. I too have tmj. I am post op tmj surgery since 1986. I did have atypical facial pain before and after the surgery however the deep constant screwdriver ear pain went away. I had a repair of my own menicus and it was for the most part successful but it changed my bite and opening from 44 mm to 28 mm. Splints and then braces solved the bite problem. Then the atypical facial pain went into remission for almost 20 years. Just brief episodes like a ceiling fan blowing on my face would flare it up. I also had cervical spasm, first disc herniation was at c5-c6 which is not unusual for a tmj patient because of the way we posture our heads in a forward head position. This can tighten the muscles and cause you to lose the curve of your cervical spine which looks like whiplash. Facial pain can come from the neck too.
Your ear pain in the beginning does remind me of the same ear pain I had and a dx of tmj was most likely correct except you do not say screwdriver drilling pain so I am wondering what tests the oral surgeon did to dx a problem with the tmj joint. I hope your surgeon was able to tell you where the meniscus was in your jaw joint. My facial pain was worse after that surgery but the ear pain did go away unlike yours which now I believe sounds like GN. Stabbing pain is GN. I see you are going to an ENT that studies the nerves of the ear. I too went to an ENT and the nerves he studies were all about hearing loss, not the cranial nerves that cause GN. And he ruled out hearing loss and sent me back to my neuro to get a dx for GN. He does surgery on nerves related to the ear and hearing but the nerves to GN as in the intermediate nerve are cranial nerves which he said was brain surgery. But mine is atypical. It did start with stabbing and jaw pain while chewing but most of my ear pain is ear ache and ear lobe pain. It does spread outward from my ear to my cheek, upper lip and jawline and strangely I also have a bitter taste in my mouth that can get really intense. That is the glossoph...nerve and it can be involved with GN.
I am not a candidate for surgery. You may be. There is a great youtube video showing this surgery and they do isolate the 5th cranial nerve too I believe. My ENT told me the 5th is involved, 2 more much lower 9th, 10th or 11th and the intermediate nerve is cut. Google geniculate neuralgia surgery youtube. And the place to go to is UMPC, UPMC? in Pittsburgh.
I am so furious that even today serious issues with the cranial nerves can be aggravated from tmj surgery. My ENT was so informative about GN and ATN even though he could not do surgery on the nerves. He told me the tmj joint is only 1 or 2 mm away from the 5th cranial nerve. I am 58 now, had this surgery when I was 28 and I think I am riddled with arthritis. I am getting botox 3 to 4 times a year in the muscles that cause tmj, ON and neck pain. Ear pain can come from c2-c3. Also rhizotomy once a year at that level and c3-c6 have helped me. Find a good neuro and try meds. It may take awhile to find a combination that helps. I got lucky having amitryptiline added for severe sciatica to my gabapentin and baclofen that I was already taking at low dosages and the symptoms are mild to moderate. But.....I had back surgery, failed with nerve injury and my pain doc added time-released morphine to my percocet and that has kept the flare ups in control too.
I am unsure you will get an answer from this ENT. Call and find out if he does surgery for GN or surgery for cranial nerves. You need to see a neurosurgeon. It is brain surgery, not inner ear surgery that an ENT does mostly. MRI, 3-D MRI is the best test but I was told GN can't be seen on mri, it is a clinical dx, even TN is a clinical dx but surgeons want a positive MRI for that one. I would hate to see you wait to see an ENT that does not treat cranial nerves. I did the same and was very disappointed. But he was so nice and informative. I have since seen a neurosurgeon recommended from this site that simply told me anything invasive, even rhizotomy which my neuro suggested would make me worse. Sometimes true TN MVD's and GN MVD's are not without risks of ongoing more severe pain. My tmj surgery really messed me up with other issues but the horrible screwdriver pain went away.
I hope you get some answers. If the ENT can not help you then he or she should refer you to a neurosurgeon. I see "RED" was the moderator that helped you. He helped me too. I doubt an email will work but still call and ask if he does cranial brain surgery. You may need to rule out an ear problem. You are describing yours as jabbing pain deep in the ear which I think is GN. Stabbing pain is nerve pain. Some neuros and neurosurgeons want to hear electric shock like stabbing pain to dx cranial neuralgias. Even my sciatica is shock-like all the way down my leg from a nerve injury. I hope you have not sustained nerve injury from the tmj surgery. I did all my searching and going to one doc after another in 2013 for my ATN and atypical GN, The only treatment I may try is PNS, nerve stimulation which is implanted under the skin.
I haven’t heard of GPN vs GN. I will look into that now. Thank you so much for the info. I don’t want to keep repeating myself, but I do have a MRI scheduled next week. I hope I find something out and can get some help here with the next step…whatever that is. The NS did diagnose me with GN, thanks to this site, I determined my diagnosis on my own. Simply amazing!
Thank you so much! I can’t figure out how to add you as a friend, so please add me, if you don’t mind.
Danielle
Somethingforkate said:
Poor girl.
That sounds very, very familiar. Alarmingly. I’ve been at it now for about seven and a half years. You likely have GN or GPN. Both will give you terrible ear pain. Mine is relentless. One form of GPN presents as ear alone. It’s very hard to distinguish between the two. You might want to email US neurosurgeon Michael Horowitz. He is very good with GN.
I’d be most happy to talk and hold hands should you wish to have a private dialogue if you want to friend me and chat.
My symptoms started with right-side ear pain for five and a half years. I then developed some throat and lacerating chest wall pain. In the last eight months my ears have become bilateral. I’ve dealt with all the same crap you’ve been through, including misdiagnosis TMJ, teeth ripped out, injections into jaw and on and on and on it went. I really feel for you.
I’m ready to get this party started too. I hope your surgery goes well. Please let me know. I would like to hear what to expect, if indeed that is an option for me. I have a MRI with & without contrast of my brain scheduled 10/10/14. Followed by an appt with my NS. I’m just hoping he can do something.
Best of luck to you! Thank you for your help!
Danielle
CrazyLady said:
I’m in have bilateral GN & TN. An ENT initially diagnosed me. I now have a neurosurgeon handling it all. The ear pain is very difficult to treat with meds for me. My doc says only a MVD will work for my ear pain. I’m seeing him tomorrow to say let’s get this party started. I fear the cold, my ears have always been sensitive, but now it’s indescribable. But you know what I’m talking about…
Invisable,
I just met with a neurosurgeon and he is familiar with TN, ATN, and GN. Are you seeing a neurologist or a neurosurgeon? This is all new to me. I have an MRI scheduled for next week of my brian, followed by a appt. with the NS. He knew exactly what GN was and diagnosied me as having it. I have to wait and see what my options are. I guess, what I’m getting at is, try a neurosurgeion instead of a neurologist (I don’t even know the difference b/t the two).
Thank you for helping me. I hope you get relief soon!
Danielle
invisible said:
I’ve just gone to another neurologist, hoping she was familiar with GN, as I have had all the symptoms for over two years, plus TN for seven. But turns out she has had one patient who moved right after diagnosis. What is wrong with the neurologists I’m going to, they all seem unfamiliar with it or are unwilling to diagnose it. An ice pick to the ear drum that can drop you to your knees. Plus I’ve had three occasions where I had multiple stabs in front of the ear, that were so bad, I started drooling, bitter taste in my mouth, my nose rain, I can’t tell if I’m crying or eye watering AGONIZING.
Granny,
I bought a TENS & PNS machine for my jaw. I spent $90 on it and I do not find that it helps for my fork in the ear pain. It probably will work for other muscles, though. I’ve started using Young Living essential oils and believe it or not, they do help some with the pain.
Thank you for all of your helpful info!
Danielle
Granny said:
invisible, I have attached files of 4 sites that describe GN with the bitter taste and drooling too. Also the MVD for GN. I just backed up a few responses on this page and I have already responded on this page.
You are not alone or invisible as far as this support group is concerned. You will be greeted with empathy and lots of knowledge. I traveled the whole circuit of docs for this thing, the neuro, ENT and neurosurgeon. I did not see someone for tmj again which I may still try but I ran into huge problems with my back.
I also forgot to mention I am looking into PNS for the ATN. Not sure if GN can be treated with this. I have a long search of doctors within a 100 mile radius to call but most probably do spinal cord stimulation. If all else fails, I was directed to a site for Saint Judes, www.sjm.com, patients, nerve stimulation, enter zip and you will get a list of doctors in your area that are doing PNS, not all, some just do SCS. Good luck to you, I wish you the very best. It is a journey to find all the answers. Sharon
Thank you, Gail. I will definitely look into that. I want surgery to be my last option (obviously), so I would like to exhaust any other method of getting some relief from the pain.
Thank you so much,
Danielle
Gail C said:
Danielle, I just posted my results from Botox injections… basically they have greatly reduced my pain. Something you might want to check into.