I had a tooth pulled and within two weeks i was at an ENT. He did a CAT scan to rule out a tumor. I have been checked by another dentist to rule out dental problems, went to an oral maxillofacial surgeon and had an internist checked my throat and scope my stomach, had TMJ ruled out. I was still in terrifying intense pain and no answer. I then went to the University of Ky Facial Pain Center where I was diagnosed with GPN by Dr. Jeffrey Okeson. At this point, I was put on tegretol, trileptal and neurotin. After a few months, my stomach rebelled and I made several trips to the ER for dehydration, vomiting, etc. End of those meds but still took my pain medicine. Next I had laser treatments, no cure. However, I no longer had pain when water ran over my head when washing my hair, I could brush my teeth without pain and use a hair dryer. Late spring (2012) I saw Dr. John Tew in Cincinnati, OH. He ordered an MRI with and without contrast. He determined I was not a candidate for surgery, as the myelin sheath was deteorating and surgery would not fix this. Now my questions. Is anyone having trouble with just being in a cool room? I am wearing ear muffs even in my home, as just having my ear exposed causes the pain to flare up. Is anyone experiencing constant pain? My pain level usually stays around a three or four. However, when it becomes more intense, like a an eight or nine I have to grab the pain meds. Recently, my family Dr. put me on a low dose of Lyrica along with a time released pain med. Hope my system tolerates this. Does anyone have trouble swallowing water? I can drink only COLD sweet tea but can not stand a cool room temp. Strange! Morning are never good and the first few times I swallow are terrifying. Swallowing is a problem all the time. Late afternoons get better and evenings are the best. I am nearly house bound. After going out for a few hours in the air the pain level gets high and it isn't worth going out. Also, if a storm comes in my pain level goes up. Please let me know if you can identify with anything I am experiencing!! I am a complete novice at these type of sites but will try my best to answer your comments. Please ignore my mistakes and if you don't hear from me let me know, as I may have goofed up. Thanks.
Get more opinions from different neurosurgeons. Don’t give up. Good luck!
Thanks for your concern and advice. Last night I started checking for a different neurosurgeon, as something doesn't make sense.
Nancy JO
When I began, I didn't realize what my problem was. I researched the symptoms and determined that I did have GPN. I went to and ENT and he looked in my mouth and I educated him on GPN.
He put me on neurontin. It did not help. I contacte a pain specialist in San Antonio Dental School.
He suggested tegretol. It did help slightlly but caused muscle spasms in my hands. I went to a neurologist and he sent me to Southwestern Medical School to the chief of neurology. During this time i had an MRI run where a minengioma was discovered at my C1 level of my spinal cord on the left lateral aspect. I had the tumor removed and another surgeon examined the glossopharyngeal nerve and the vascular tissue aroune the nerve and placed insulating membranes around thenerve inc case the arteries were causing the GPN.
When I awoke from the surgery, I had a pain with my left lower molar. I knew that GPN was alive and active. The pain from GPN began again. The neurologist speculated that the trauma to my tongue and GPN arose simultaneously.
I knew that the bite on my tongue caused the GPN. I was having severe pain on swallowing and chewing. I was ready to go to Haiti to see a witch doctor.
A cousin of my wife was at Texas Osteopathic Medical School and she told me about a lecture on accupuncture.
I went to the physicain and he began experimenting with me using accupuncture.
I was impressed with his degrees, He has a DVM degree from Texas A&M. A DO degree from TCOM. I figured that he ought to be able to help.
By me being a test subject and his wanting to learn abour GPN, we had success. I had been 4 years without any pain after his treatments.
I have begun having pain again and I have returned to his office to have treatments.
I have also found a Chinese trained accupuncturist who has been treating me with success.
I took photographs of my DO doctor's needle placements and have had the Chinese doctor put the needles in the same locations with success.
I have now studied my own pain beginnings and have ascertained that the pain in my GPN is associated with a muscel spasm of the Stylopharyngius muscle. I can get an onset of the pain and when I yawn and swallow the pain stops immediately.
I believe that this muscle spasm is the trigger site because the pain radiates to the left posterior pharyngeal area and radiates to my left TMJ.
Why I get this , I don't know. This is and undocumented area of medicine. I have an undocumented case of GPN being caused by a traumatic bite to the left posterior aspect of a tongue.
No medicine affects it, no lyrica, tegerton, neurontin, nothing, not a muscle relaxant either. No pill affects it. You get side affects from the medicines.. The only success is accupuncture.
I did have a paine specialist in San Antonio who actually offered a cause/effect.
He said that when I bit my tongue I caused a hematoma and the break down of the bruise cause the Fe+ particles to overstimulate the glossopharyngeal nerve causing the pain.
However; He said he was glad it was me and not him.
I had an oral surgeon look at another MRI and an inhanced image of the cirle of Willis to no avail.
nothing pathologic was found.
So, I am back with my muscle spasm theory.
I will be glad to converse with any of you regarding this.
roland moore dds
maybe ask your ent or neuroligist to check for eagles syndrome they must know to look at it in a 3d ct if they look at a regular ct they will miss it I had eagles and had my styloid removed but know think it caused Gpn the symptoms are almost exactly the same i find out tommorow if I have gpn
Thanks for the suggestion. Thought I had tried just about everything but not this. I will check into it. I just have this sinking feeling it is GPN and a life long problem. Have come up empty handed and have been told that the myelin sheath is disintergrating and nothing can be done. My spirits have been demolished because of this but I will keep plugging along. Maybe something will show up besides this diagnosis. I do appreciate your imput and will follow up in the near future.
What area of the country are you located?
Eagle Syndrone is usually seen by a Panoramic X-Ray as calcification of the Stylohyoid ligament and gives pain when turning the head laterally.
Deleone said:
maybe ask your ent or neuroligist to check for eagles syndrome they must know to look at it in a 3d ct if they look at a regular ct they will miss it I had eagles and had my styloid removed but know think it caused Gpn the symptoms are almost exactly the same i find out tommorow if I have gpn
That’s true that’s how I was diagnosed a panoramic ,I guess I have to wait til Thursday now for the MRI on my brain results but for 12 years I’ve had a sore throat,it also feels like a swollen lymph node ,waterlogged ear feeling also a cool sensation when I breath on the back of my throat it’s always present but the pain is worse then dull but always present I had my right styloid removed after 8 years of misdiagnoses but still have the same 24/7 symptoms my neurologist is Dr Christopher Duma of Newport beach ,CA he also has has a video of him doing the Mvd for gpn on YouTube I might be jumping the gun on this but have read eagles and gpn can be related guess I’ll find out on Thursday from what I’ve read the bone pushes on the glossopharyngeal nerve,don’t want to lead anyone the wrong direction but a simple panoramic by a oral surgeon who has dealt with it can rule it out
I am about 1 hour from Lexington, Ky.
blueminc said:
What area of the country are you located?
After reading up on the subject, it certainly sounds reasonable. Gosh, let me know what you find out. Good luck!
Deleone said:
That's true that's how I was diagnosed a panoramic ,I guess I have to wait til Thursday now for the MRI on my brain results but for 12 years I've had a sore throat,it also feels like a swollen lymph node ,waterlogged ear feeling also a cool sensation when I breath on the back of my throat it's always present but the pain is worse then dull but always present I had my right styloid removed after 8 years of misdiagnoses but still have the same 24/7 symptoms my neurologist is Dr Christopher Duma of Newport beach ,CA he also has has a video of him doing the Mvd for gpn on YouTube I might be jumping the gun on this but have read eagles and gpn can be related guess I'll find out on Thursday from what I've read the bone pushes on the glossopharyngeal nerve,don't want to lead anyone the wrong direction but a simple panoramic by a oral surgeon who has dealt with it can rule it out
Nancy Jo said:
After reading up on the subject, it certainly sounds reasonable. I have pain in my left ear that runs down the side of my throat. The entire throat area is always extremely sore or burns. A little like streph. It is nearly impossible for my to swallow anything as it is painful to do so. Since, I hate to swallow I often spit saliva into a paper towel. Eating out isn't an option. My neck muscles feel hard but it doesn't hurt to turn my head. Cool air is my worst enemy and will send me in fits.Therefore, I wear ear muffs, even in my home and avoided going out this summer do to air conditioning. I have been going to an upper cervical chiropractor. He said the axis at the base of my head was off 15mm and 5mm is considered terrible. Also, he has aligned my upper cervical disc. I certainly hope you get the answers you are looking for. Please let us know what you find out. Best Wishes
Deleone said:That's true that's how I was diagnosed a panoramic ,I guess I have to wait til Thursday now for the MRI on my brain results but for 12 years I've had a sore throat,it also feels like a swollen lymph node ,waterlogged ear feeling also a cool sensation when I breath on the back of my throat it's always present but the pain is worse then dull but always present I had my right styloid removed after 8 years of misdiagnoses but still have the same 24/7 symptoms my neurologist is Dr Christopher Duma of Newport beach ,CA he also has has a video of him doing the Mvd for gpn on YouTube I might be jumping the gun on this but have read eagles and gpn can be related guess I'll find out on Thursday from what I've read the bone pushes on the glossopharyngeal nerve,don't want to lead anyone the wrong direction but a simple panoramic by a oral surgeon who has dealt with it can rule it out