Finally got back on, being that I am the first Ron who went to the Cleveland Clinic.
All the comments from Ron K are very similar to mine, including symptoms and such, and then the surgery experiences. His surgeons explanation for doing the resection for GPN rather than the MVD was better than mines. However, having dealt with Cleveland Clinic before (for two open hearts; a long and another story), i admit i wasn't going to question his decision. My surgeon was Dr. Joung Lee (http://my.clevelandclinic.org/staff_directory/physician_name_search.aspx#1193 ). He does a lot of TN surgeries, and some GPN surgeries. He made is sound like a few, but mainly because others come to him for it. how many, i don't know. I know my local neurologist had never dealt with GPN until i came along.
it has been 5 months now, and no problems, GPN-wise or from surgery. Being off drugs completely (at least those) has given me energy back, or what i used to have. that comes from my wife and coworkers. I actually feel i am able to think again. I understand how strange it is to think to the future without GPN being a factor in it.
Kaz your symptoms sound just like mine, on the right side only. Ron I hope you are feeling much better, I am jealous you even found a surgeon that would consider this surgery - I am in the UK and drugs are the only option for controlling this thing sadly. Never thought I'd hear myself say I'd sign up tomorrow for major surgery if I thought it would solve the problem. So really hope you're well and congratulations!
I have ony re-engaged with his discussion area recently because - when the meds are working I dont think so much about it! But after accidentally missing a dose over Christmas it seems to be on its way back. I have only had one full on jab so far but all the other signs of a return are there. Mine is on the left side of my throat and is principally initiated by talking so the impact becomes evident very quickly - particularly problematic at work! I haven't had prolonged frequent attacks like you since I started on gabapentin - i did have a week a couple of years ago of severe attacks every few minutes. I felt like my whole personality changed, I couldn't speak more than a couple of words at a time. I am not sure how you have managed - what you have gone through is extreme!
I am trying to get it back under control this time by taking small extra doses but i am already on the highest dose of gabapentin that can be prescribed. Your reference to acupuncture is a good reminder. My acupuncturist moved so i will need to find another.
My fear, aside from the pain, is that if this escalates again I will be unable to work effectively as I am always on the phone or at meetings. I am the only person with GPN that my neurologist or dr has come across. I am in Adelaide South Australia and I while I am not considering surgery right now it would have to be an option. I wonder if there are any other Australians out there with the condition that have had successful surgery - it would be great to hear from them!
I think I am more prone to break though attacks over summer, not sure if that is about dryness or not. I also notice I am more likely to have attacks when i am sick and also after long flights. RE flights, I wondered if being awake for long flights messes with the level of medication in my system? I also know that if my neck is twisted to the left at all when i swallow an attack is more likely. My neurologist is a nice bloke but not very enlightening. I am very glad we have all these experts on hand on this site!
iv had 2 mvds now and had teflon packed , but still no better off , my surgeon is considering cutting as a last resort , What were you advised could be the complications of this precedure ? and what side affects did you have if any .
I have already been left with left vocal cord palsy from my 1st mvd .
I live in Mauritius a small island in the indian ocean and my neurologist confirm that i have GPN. 15 yrs am with that defects and i have pain in my tongue/throat/cheek and and sometimes it protrudes deep in my ear. I am actually on Lyrica 300mg per day and at the same time i do accupressure. During the 15yrs it came only once a year and stays for three month but now it the way round 3 months relief and 9 month pain. i believe that with age - i am now 46yrs- the GPN will become more and more painful. I have it on my RHS only. I am thinking of surgery to get rid of this hell. I DONT KNOW WHICH IS THE BEST MVD OR RESECTIONING. I NEED TO HERE FROM PEOPLE WHO DID BOTH SO THAT I CAN DECIDE
I had resection of the GP nerve and partial of the vagus nerve and I am pain free for over a year now. I would definitely recommend complete resection of the GP nerve and partial of the vagus if needed. My experience was the same as yours, that each year the pain would stay longer and being pain free went away quicker. By the time I had my surgery I no longer had times without pain. All the best wishes to you.
I live in Mauritius a small island in the indian ocean and my neurologist confirm that i have GPN. 15 yrs am with that defects and i have pain in my tongue/throat/cheek and and sometimes it protrudes deep in my ear. I am actually on Lyrica 300mg per day and at the same time i do accupressure. During the 15yrs it came only once a year and stays for three month but now it the way round 3 months relief and 9 month pain. i believe that with age - i am now 46yrs- the GPN will become more and more painful. I have it on my RHS only. I am thinking of surgery to get rid of this hell. I DONT KNOW WHICH IS THE BEST MVD OR RESECTIONING. I NEED TO HERE FROM PEOPLE WHO DID BOTH SO THAT I CAN DECIDE
This is the first Ron,and my response is exactly like Ron K. The cutting of the GP and partial vagus, and totally pain and drug free. And as others have said, my surgeon will not do mvd for GNP, only the cutting. But the same increasing problems were the same that finally made me do it. Only wish I had done sooner. Good luck. Only make sure your surgeon has done lots of basal skull surgeries, especially trigimenal surgeries including mvd’s. You probably will not find many with GNP experience. They are not that common.
From my readings and then experiences, there really is nothing to confirm GPN. It is based on deleting all other possible causes such as a tumor with MRIs, CTs, and other things like that, and then detailing the symptoms. Symptoms include where is pain (mine was 90% in throat, 5% ear, and 5% lower jaw and all on one side), frequency, and what sets it off. An MRI or whatever can sometimes show a screwed up artery (my term; cannot remember correct one) in terms of placement and how it lays next to nerve, but this is not always seen (mine was from what i was told). Hate to say it, but you appear to fit the normal situation. it is frustrating, I (we) know. Good luck.
GPN is a pain in the ass to diagnose and sometimes you even have to go through a process of elimination.
I initially was diagnosed with atypical trigeminal neuralgia, but after trying all sorts of medicine and seeing several neurologists and neurosurgeons, they decided the pain description was very similar to that of trigeminal neuralgia i.e. blasts of pain, shocks, stabbing feeling, but it wasn't in the same location. I have stabbing pain in my inner ear, in my tonsil area, base of my tongue, burning pain in the base of my tongue, alongside the right side of my tongue, jaw pain, and strange undulating pain in my lower right molar area (I actually had my healthy molars removed because I had pain inbetween them and I couldn't handle it anymore. The pain is still there).
I'm due to get a MVD or rhizotomy in a week, depending on whether they find the carotid artery hitting my GP nerve or not. As far as seeing it on MRIs or CT scans, it's hard to tell. I've had so many scans and nothing shows anything for sure. I think what it comes down to, is how long you can take it for. It's only been 3 years for me, but I've tried EVERYTHING and nothing's worked so far. This is a risk I'm willing to take because I have heard other people's surgery stories, including Ron's, and it seems like it's worked for most people. My mother asked my neurosurgeon how he knows for sure that I have GPN (i have been diagnosed by 4 different medical professionals with GPN) and he said because of the symptoms and the path of the pain.
I'm really sorry you have been suffering. I hope you find the answers you're looking for and find a way out of this horrible pain. I will be posting a lot post-surgery about how I'm doing.
I'm scared, but I can't take it anymore. I'm willing to try and see if this will take me out of my misery.
You can have a test performed by an Ear Nose and Throat specialist. They will use a local anesthetic to deaden the throat and use a piece of soft guaze to gently touch different areas. Because GPN is very specific in nature 1/3 of the tongue and specific area of the throat unilaterally the ENT is the only person who can really perform the tests. The ENT doc will gently touch the pharyngeal area that is affected and believe you me, if you have GPN you will go through the roof. Plus the local doesn't stop the pain. All other non-affected areas will be completely numb except the area where you get GPN.
I can understand the initial diagnosis of TN as your pain description fits it well with pain in your teeth, jaw pain etc. But TN is generally unilateral (both sides) although some people seem to experience more on one side. GPN is very specific with it's pain. You need to understand the cranial nerves and what they innverate to know what I mean. It is very hard for a neuro to diagnose alone. You really need the help of an ENT as majority of time no MRI or CT scan will pick up a lesion. In the brain stem the tiniest of lesions not able to seen on an MRI can cause issue. The best MRI machine to see smaller lesions is a 3 telsa. CT scans are basically useless.
I would suggest before you consider surgery to read my post on acupuncture. Surgery, because of the high risks, should only be the very last option. You need to be absolutely certain it is GPN before surgery, as if yours was to be TN and have the GPN nerve severed, you're back to square one and unfortunately could be detrimental to you. The GP nerve runs into the Vagus (10th nerve). The Vagus nerve is responible for our breathing and heart rhythm along with blood pressure. This is why when we have severe attacks of GPN our heart rate will be lowered and same with our blood pressure. Your breathing can be affected too. I know mine gets terribly affected and actually have spells where I feel like I'm actually being suffocated. This type of surgery should really be last option.
If you have GPN you will have issues with the heart, so that's another way you can check it. I have a team I am under for my lungs, heart, ENT and also my neuro because even though the cranial nerves are a neurologists area, it affects these other areas which they don't work in... Alot of people with GPN are not made aware of these facts, nor would some of them realise that their blood pressure and heart rates are being affected. They may not even correlate that their breathing is also linked. I have studied this area in Uni, so know quite a bit more about it than the average layperson. I researched a lot when I was diagnosed with GPN, but didn't fully understand all about the nerves until I spent time learning it and being examined on this area.
In response to the test of spraying an anesthetic on back of throat and then touching it, I realize it is something they can try. However, throughout my years of having GNP, prior to surgery, I had many doctors trying to initiate an attack and never having one happen. Hhaving my throat touched just made my gag reflex come on, which gagging could then set things of in terms of gpn. I would suggest reading up on it and talking with others because I have never read where it is definitive. This compares with everything else I have read that suggests what I wrote 8 hours ago and others have said, just a process of eliminating other potential causes. In terms of affecting other things, I would say 1) I have had two open heart surgeries in past 20 years and 2) I decided that being free from VPN was worth risks assuming you believe in the neurologists you are working with, including the neurosurgeons. Given the choice, i would have had another open heart surgery if i could have made a deal to stop the pain. Whether that would have been made with the Devil is unknown. Luckily i found a great neurosurgeon. While ENTs do work in that area, I would point out that you are dealing with cranial nerves in your brain, and a good neurologist will know more about the ramifications.
Hi Ron, I can appreicate what you are saying but you really need to be tested when you are having actual attacks. Yes, a process of emination usually occurs before finally seeing an ENT specialist, or diagnosis by other means. But if you want a definitive answer, you go and see an ENT during episodes of it. I personally found here in Aust that the ENT specialist (you get the referral first) will see you immediately during an attack to test you. I can tell you from personal experience this works!! I can also say after studying the cranial nerves and understanding how the CNS and PNS works that it would be extremely difficult for one to try and initiate an attack during periods of remission with it.
If you have superficial nerve ending damage in the areas it would be able to be triggered, but in general would be extremely difficult. I know exactly how relentless this beast is but I have been lucky enough to now control mine with the use of acupuncture. Everything else prior gave no relief whatsoever. The neurologists on my last severe attack threw their hands up and said nothing more we can do except maybe attempt surgery. BUT the neurosurgeon has never performed this operation before. While I was tempted to berid of this, I also didn't want to become a statistic so decided against it. Plus I hadn't found anyone previously here in Aust who had had this surgery. I could only find people with TN (and they were few and far between), and surgery for GPN is a bit more risky than TN. But thankfully I have found something that works for me now. I still get niggles and up my acupuncture. But for now I have a way of managing it better. Whereas before I was crippled by it with attacks every 3-5 minutes and so severe it was stopping my heart. I was a mere waste of a person. Had lost so much weight and was becoming so very weak as my big attacks are relentless like that (every 3-5 minutes) for many months on end. The last big one they wanted to put a tube into my stomach to feed me...
In regards to GPN an ENT is the only real person who can give the definitive diagnosis when no lesion appears on a MRI. They can give the objective diagnosis through doing the exam. Whereas a neurologist can only give a subjective diagnosis based on what the patient tells them. My neurologist was the person sent me to see an ENT. Just because a neurologist studies the brain etc; doesn't mean that this is only their area. It's like with blood pressure issues, you can be under a cardiologist and a kidney specialist together because they both are connected. With the GPN the ENT understands more of the tongue and throat implications than a neurologist. The neurologist understand the mapping of the nerves but can only do nerve evoked response tests for motor skills, not the sensory side that this affects - if that makes sense. It's also like with my MS, a neurologist is the primary carer in my treatment but I am also under many other specialists because the lesions in my brain affect different areas. A neurologist can't address those issues.
Thanks for all the info! I actually had this test performed by two different ENTs and had the same reaction as Ron. I've been to 4 different ENTs and all of them told me I have GPN.
I have tried acupuncture and acupressure numerous times by a few different acupuncturists over the past 3 years. Unfortunately, I didn't have any success with it. I also tried reiki, biofeedback, and changed my diet several times over the past 3 years. I do pilates and yoga 5 times and I'm usually a very natural person and don't trust western medicine. I truly at my end's wit. I have lost 2 jobs and am only 29. Last year I was suicidal. I can't take it anymore. I have pain all day everyday. I have never had a period of remission, except once and it lasted 2 weeks. The medicines dont work and I dont want to try anymore new ones. I am willing to risk having complications from the surgery. If someone told me in order to not have this crazy pain anymore, I would have to lose a leg, i would do it. Enough is enough.
My Thanx to all that commented. My heart goes out to all that are still suffering I really do know your pain. this GPN is still fairly new for me I can't imagine years. I though I was a strong person and had felt some bad pain until this came along. Now I know heart attacks and kidney stones are child's play. How can one tiny nerve cause such agony? Anyway I'm not waiting years if I can find a surgeon I will have that nerve cut.
Might as well chime in again. Kaz, when I had docs trying to set it off, it was during attack periods. It was only the second or so after while gagging that it went off.
Also, could you clarify something forme. In your last reply, you mentioned “Superficial nerve ending damage” and “no lesions appear” and “lesions in my brain”. What are you referring to?
Jade O. - hang in there! There is support out there for you. And if I remember, did you mention you are be going in for surgery? If so good luck! Being honest,I have lots of faith in medicine. While they are not gods nor do alll medicines work all the time (we are all different), I will still put my trust in that as long as I have a doc with either experience or good training. In terms of GNP, you will never find much in terms of surgical experience; that is why you look for TN experience, or a basal skull surgeon.
I'm having my surgery a week from tomorrow. Im confident I have a great surgeon. He has written in several medical journals about glossopharyngeal neuralgia and Eagle's Syndrome and has performed several MVDs and rhizotomies. I am a bit nervous about getting the surgery, as I have talked to a lot of people who have no pain following their MVDs/rhizotomies, but I've also talked to those who despite have the surgery, still have pain. That scares me the most. Waking up with the same old GPN pain and a new pain from the surgery. I have had a couple of nerve blocks that didn't work and that was disappointing, so I can't imagine how I'll feel if this doesn't work. Anyway, I'm glad this website exists. I'll be posting how my surgery goes and will continue to help other people with this horrible disabling disorder, regardless if I get better or not.
Oh and just a general comment, when I say it's a process of elimination, it's not just to diagnose GPN, but also the opposite: to make sure you don't have any other disorders/diseases. I was also diagnosed with TMD and they thought I had a neuromuscular disorder. $6,000 and 6 months later, no amount of adjustments or orthodic pieces were helping me. They were actually making it worse. I also was told I had something called NICO (Neuralgia-inducing cavitational osteonecrosis). Which basically means that Holistic dentists believe you have holes in your jawbone that have low-grade infections lingering around in aka toxins. I had a $6,000 jaw surgery that was supposed to get ride of the toxins in my jawbone and the neuralgia. What a joke. When you're in so much pain, you'll do anything. I also had all my lower right healthy molars removed because there was a tight pressure pain inbetween my molars that wouldn't go away. I'm not saying do these things, but you have to be careful with GPN because it masks itself as other things: TMJ/TMD, Trigeminal Neuralgia, Sore Throat, Ear infections, ect. ect.
Obviously, I tried a lot of crazy things before I ever considered doing neurosurgery haha.
Obviously we can all understand. Unless a person has it, you really don’t have have any idea what pain really is. Good luck and let us know how things go!
Hi Ron, maybe I was just lucky. I got the gag reflex too but that is typical response from the GP nerve. But the one thing that I found was that local didn't have any effect on the pain, it just kept on coming and the moment the ENT touched the pharyngeal area it set off another violent round which was quite traumatic as I had the scope down my throat at the same time and with each spasm, as I call them, it would touch the area moreso and make them last longer. It was quite a horrific at the time even trying to get the scope up my nose inbetween spasms. The ENT specialist was really concerned. He is one our leading ENT specialists in Sydney.
I remember writing down why isn't the pain stopping as he had given me two large lots of local. He just looked at me grimly and said we really need to do this procedure, do you think you can bare the pain. Afterwards he said to me it was a rare neurlagia and there was nothing he could do for me. He had done his bit with helping diagnose and now it was back to the neuro for treatment options. I was already on anti-epileptic drugs at this stage with no effect on it. Didn't even take the edge of it. Instead all I got was other nasty reactions.
Prior to my ENT guy stating this my neuro had tried to rule other things such as tumours etc, but it is believed that mine is linked to my MS as I have other issues with other cranial nerves damaged. Out of curiousity if you were having attacks at the time, did you have an attack whilst in the chair? Did you find the local did zip for the pain? When I saw my ENT I couldn't talk as talking would trigger violent spasms of around a minute in length. Whereas without talking, swallowing (well trying not to) the spasms were coming regularly at intervals of between 3-5 minutes continuously. This is what my bad attacks are like, constant and consistent with timing aggrevated further from talking, swallowing, sneezing etc. Any of those reactions would ensure the spasms lasted not for a few seconds but up to a minute which these ones would stop my heart and bring me to my knees. I couldn't even cry as the motion of crying would trigger them. These attacks would last for many months at that intensity. So having the what I dub niggling attacks where I get random pain a few times a day here and there is nothing for me in comparison. Can handle those and control it from getting worse by acupuncture.
@Jade, all the best for the operation. Go in with positive thoughts. Hope it all works out and look forward to reading updates on here as to how it all went.