My mother has been in constant pain now for the last 2 1/2 months. She was finally diagnosed with GN a month ago and was given Tegretol by her neurologist. Looking back now, we know that she has had it for several years, but the pain was milder before and the doctor thought it was acid reflux related.
To anyone who has been prescribed Tegretol be cautious at first. It may work just fine for you and be your answer. But, keep a watch for adverse reactions to make sure that you're not allergic to it. The neurologist gave it to my mother with no words of caution. She had a very scary, adverse reaction to it. So just be ware. My late grandfather took Tegretol 30 years ago when he was diagnosed with TN, and he tolerated the medicine just fine.
She is now scheduled to have Gama Knife radiation at the Georgia Health Sciences University Hospital in Augusta, Ga. Is anyone familiar with this procedure? We're hoping this will be the miracle we've been praying for. Also, has anyone ever heard of a genetic link to nueralgia? As I mentioned before, my mother's father had TN and now she has GN.
Sorry I am asking a question I am sorry I do not know anything about gama knife surgery I hope you find the answers you need it is not nice to be in pain may god bless your mom with a cure.
What were her symptoms in the begining before it got really bad . I was told I had allergies because when I ate my throat got tight and my gland felt like they were swollen and I got excessive amount of saliva which mad it hare to sawallow I had allergy testing done and was told that I had no food allergies. I was Diagnosed with TN inJan. 2012 and treated with gabapentin and it helped the throat problems I some times get pains in my throat they seem to radiate down my throat to my esophogus It is not to severe it yet I also seem like my throat is sore I have been to the Primar doc. and he says my throat is fine but I was wondering if it was GN or Acid refux how do you find out wether it is GN or acid reflux do you go to a ear nose and throat and get scoped to make sure it is not anything else or does a nerurologist check you out mine told me to go to the ENT doc. when I tried to tell him about it.
My great grandfather had neuralgia…not sure exactly what nerves. He had nerves severed in the 1950’s or 60’s. I have heard he looked like he had a mild stroke after. I have/had GPN and GN. of which I had MVD of the 5th, 9th, and 10th cranial nerve and the nervous intermedius cut just over 2 weeks ago at UPMC by Dr Michael Horowitz. Woke up with pain gone;)I have to wonder about the hereditary aspects of this since it is a rare disorder.
Sorry I am asking a question I am sorry I do not know anything about gama knife surgery I hope you find the answers you need it is not nice to be in pain may god bless your mom with a cure.
What were her symptoms in the begining before it got really bad . I was told I had allergies because when I ate my throat got tight and my gland felt like they were swollen and I got excessive amount of saliva which mad it hare to sawallow I had allergy testing done and was told that I had no food allergies. I was Diagnosed with TN inJan. 2012 and treated with gabapentin and it helped the throat problems I some times get pains in my throat they seem to radiate down my throat to my esophogus It is not to severe it yet I also seem like my throat is sore I have been to the Primar doc. and he says my throat is fine but I was wondering if it was GN or Acid refux how do you find out wether it is GN or acid reflux do you go to a ear nose and throat and get scoped to make sure it is not anything else or does a nerurologist check you out mine told me to go to the ENT doc. when I tried to tell him about it.
My mother also had TN and I have GN. I was put on Tegretol when I was first diagnosed. But it caused memory problems and I went off of it. I don't know anything about the Gama Knife radiation. I will put her in my prayers. Let us know how she does.
I've suffered with G for nearly 30 years and haave been desprate at times myself. I thought beore I ound this site that I was the only one on eaarth that suffered so. I've been taking tegretol as many years and have toleraed it fine.
I've investigated surgery with a number of opinions, decompression and sectioning--it scared me to death. I had heard of the Gama Knife and had a consultation with some experts in the neurosurger department at Baptist Hospital in Winston-Salem, N.C. They have performed the procedure for TN with some success but told me that it wasn't approriate for GN because they couldn't get a clear shot at the 9th cranial nerve. They showed me the picture on my MRI image.
Given the unkown effects of the amount of radiation and uncertainty of success, you might want to investigate further. However, my experience was several years ago and things may have changed by now.
My father was diagnosed with TN back in the 60's. I have asked different Drs if they think there is a genetic predisposition and received mixed answers. Next month I am going to the Cleveland Clinic to hopefully get a definitive assessment on my condition. Maybe they will have some research concerning your question. I to have wondered.
Hello Bill! You are not alone! I had surgery at UPMC 2 weeks ago and am pain free:) very glad I did it and I had total confidence in them. They have done many cases and really know what they are doing. I hope you find a treatment that works for you soon. 30 years is 30 years too long especially when there is help out there.
My mother was told for several years that her pain was associated with acid reflux. She was going to an ear/nose/throat specialists who kept telling her that and basicly ignoring her pain. I got fed up with that and told my father to find another specialist. He took her to Dr. Sheffield in Athens Ga. (throat specialist) He did a barium test of her throat and an MRI of her throat. When he found nothing there, he was sure it was GPN. He refered her to a neurologist and she's spent the last three weeks dealing with the pain and terrible adverse reactions to medications. She has not seen the neurologists at the Gamma Knife clinic yet and will go there on Tuesday for a consultation. I pray that they will be able to do the procedure, but I have my fears that it might only be for TN. She is in so much pain now that it is heartbreaking to see. I send my prayers and best thoughts to all of you who are suffering with this. May God bless you and I will let you know what happens with my mom next week. Stay Strong.
Good luck to your mom and family. The MVD surgery had totally fixed my problems. Please consider that if she is a surgical candidate. They get right in there and fix exactly what is wrong…it’s brain surgery though, so carries risks, but living in that hell isnt living. Also make sure you are in a place with much experience in this. I traveled to UPMC because they had such a good reputation with this surgery. Thank goodness my insurance was taken there.
I have had GN for 26 years. I recently went to a ENT Dr. and she said she thought I did not have GN but was misdiagnosed and have allergies. I did not believe that as I have had the pain in the same spot for all this time. But I went to an allergist specialist and he said I did not have allergies and that some ENT Dr.'s don't believe in Neuraligia. She also said I had a nodule on my vocal cords, but the allergist could not find any. Both looked with a scope. I won't be going back to that ENT Dr.
pamcliff said:
My mother was told for several years that her pain was associated with acid reflux. She was going to an ear/nose/throat specialists who kept telling her that and basicly ignoring her pain. I got fed up with that and told my father to find another specialist. He took her to Dr. Sheffield in Athens Ga. (throat specialist) He did a barium test of her throat and an MRI of her throat. When he found nothing there, he was sure it was GPN. He refered her to a neurologist and she's spent the last three weeks dealing with the pain and terrible adverse reactions to medications. She has not seen the neurologists at the Gamma Knife clinic yet and will go there on Tuesday for a consultation. I pray that they will be able to do the procedure, but I have my fears that it might only be for TN. She is in so much pain now that it is heartbreaking to see. I send my prayers and best thoughts to all of you who are suffering with this. May God bless you and I will let you know what happens with my mom next week. Stay Strong.
To Arlene's comment about the ENT Dr...It was an ENT that diagnosed my GN several years ago.
Not all are non-believers.
I have had other docs look at me like I'm crazy. One neurologist at Duke University said I had "phantom pain". He was very rude and basically accused me of being a hypochondriac.
It's been a real struggle and god bless you folks and this forum.
When I was diagnosed by the ENT Dr. so many years ago, he did tell me you will probably never meet another person with the same type I have. Well the internet was not around then. How long do you go between pain? I am usually good until I catch a cold. As soon as the cold starts going away the pain starts. But stress can also seem to activate it. How about you?+
Bill said:
To Arlene's comment about the ENT Dr...It was an ENT that diagnosed my GN several years ago.
Not all are non-believers.
I have had other docs look at me like I'm crazy. One neurologist at Duke University said I had "phantom pain". He was very rude and basically accused me of being a hypochondriac.
It's been a real struggle and god bless you folks and this forum.
We have not been able to determine anything that triggered my mom's pain. Her episodes over the past few years only lasted a few weeks. But she has now been in pain since the first part of July, almost three months. She is 68 years old. I wonder if her age is contributing to the severity of her case.
Arlene said:
When I was diagnosed by the ENT Dr. so many years ago, he did tell me you will probably never meet another person with the same type I have. Well the internet was not around then. How long do you go between pain? I am usually good until I catch a cold. As soon as the cold starts going away the pain starts. But stress can also seem to activate it. How about you?+
Bill said:
To Arlene's comment about the ENT Dr...It was an ENT that diagnosed my GN several years ago.
Not all are non-believers.
I have had other docs look at me like I'm crazy. One neurologist at Duke University said I had "phantom pain". He was very rude and basically accused me of being a hypochondriac.
It's been a real struggle and god bless you folks and this forum.
Good luck to your mom and family. The MVD surgery had totally fixed my problems. Please consider that if she is a surgical candidate. They get right in there and fix exactly what is wrong...it's brain surgery though, so carries risks, but living in that hell isnt living. Also make sure you are in a place with much experience in this. I traveled to UPMC because they had such a good reputation with this surgery. Thank goodness my insurance was taken there.
Thank you so much for this information Laura. I'm already looking to find the next step for my mother if this Gamma Knife doesn't help. Her blood pressure is starting to go sky high, she's loosing too much weight and I'm afraid her body can't stand much more of this. I'll be checking to see if anyone in the Southeast performs MVD.