shinglesdidit, I wish I had the sites I have researched this on but I think you are a candidate for MVD. If my memory is correct the doctor that does this is in Pittsburg at UMPC. It is a very exact surgery for several cranial nerves that have to be decompressed and then sometimes the intermediate nerve is cut. Yes, I have read some failures just like MVD for TN. I am not a candidate because I don't get the ice pick jabs in the ear, just an earache that gets intense. I don't know too much about gamma knife. You do say you have scarring but where is it? I will find this youtube video of this surgery too. Everything I have researched on this always refers to shingles being a major cause of it. I would be leary too about gamma kinife. If you can get to Pittsburgh, even I thought I would go there but I realize I am not a candidate. I would be leary of gamma knife. If you start to go into so many of these discussions you will find some benefit and some do not and some get worse. Research this gamma knife very thoroughly. Sharon
Granny said:
shinglesdidit, I wish I had the sites I have researched this on but I think you are a candidate for MVD. If my memory is correct the doctor that does this is in Pittsburg at UMPC. It is a very exact surgery for several cranial nerves that have to be decompressed and then sometimes the intermediate nerve is cut. Yes, I have read some failures just like MVD for TN. I am not a candidate because I don't get the ice pick jabs in the ear, just an earache that gets intense. I don't know too much about gamma knife. You do say you have scarring but where is it? I will find this youtube video of this surgery too. Everything I have researched on this always refers to shingles being a major cause of it. I would be leary too about gamma kinife. If you can get to Pittsburgh, even I thought I would go there but I realize I am not a candidate. I would be leary of gamma knife. If you start to go into so many of these discussions you will find some benefit and some do not and some get worse. Research this gamma knife very thoroughly. Sharon That site is www.youtube.com MVD for geniculate neuralgia. I have a file on it but the video does not play
I will check out the video. I already had Gamma Knife (see my pictures) last April. I may be a candidate to repeat it after a year. They did not give me nearly the amount of radiation that they use on TN patients. The scarring they see is on the intermedius/geniculate nerve...right on that bugger! The surgery I am leary about is the MVD! It would be very intricate surgery in my case. My Dr. is well versed in both MVD and Gamma Knife but she is WAY leary of the surgery because of the position of the scar on the nerve. I did not realize that Geniculate neuralgia is often from PHN...only knew mine was and that it is rare. I was turned down by 2 surgeons before I found mine on this site. I think the biggest thing my doctor is concerned about is the high, very high risk factor of deafness and paralysis. She doesn't much care what I think I can or cannot live with. She will do no harm. I love her a lot. Thanks for the link....I will go there now. PeacenLove :)
Granny said:
Granny said:shinglesdidit, I wish I had the sites I have researched this on but I think you are a candidate for MVD. If my memory is correct the doctor that does this is in Pittsburg at UMPC. It is a very exact surgery for several cranial nerves that have to be decompressed and then sometimes the intermediate nerve is cut. Yes, I have read some failures just like MVD for TN. I am not a candidate because I don't get the ice pick jabs in the ear, just an earache that gets intense. I don't know too much about gamma knife. You do say you have scarring but where is it? I will find this youtube video of this surgery too. Everything I have researched on this always refers to shingles being a major cause of it. I would be leary too about gamma kinife. If you can get to Pittsburgh, even I thought I would go there but I realize I am not a candidate. I would be leary of gamma knife. If you start to go into so many of these discussions you will find some benefit and some do not and some get worse. Research this gamma knife very thoroughly. Sharon That site is www.youtube.com MVD for geniculate neuralgia. I have a file on it but the video does not play
shinglesdidit, now that I know the scarring is on that intermediate nerve I can understand why even cutting it would not help or there must be some reason MVD could cause you more harm than good.
After getting MRI's of my ATN, a blood vessel was found on the left that an ENT was only checking for compression that might be causing me to lose my hearing but also it can compress another nerve related to my facial nerve causing GN and paralysis can occur going into this area. A neurosurgeon and an ENT surgeon uses a device that keeps track of your facial nerve to avoid this but it is a big risk. It is a very complicated area. If I ever find someone that does PNS for GN and TN, also ATN then I will get it to you. I don't know much about gamma knife, only that some benefit and some do not and your surgeon sounds very protective of how to intervene with anything invasive. I do hope you benefit.
I was told almost the same thing as in do no harm by one of the neurosurgeons recommended from this site at Tampa USF teaching hospital. He looked directly at me being ATN and said, "I don't want to make you worse." My neuro thought I might benefit from RF but he won't do it for ATN, he chooses MVD for true TN only, dislikes all the other procedures as they only offer temporary relief and even with a TN sufferer could make it worse. And of course we all know MVD can do it too, you get that AD, which is nerve injury. I wonder if your scarring is a nerve injury already.
I am sorry, I think I got a little pushy with this MVD for true GN, only that UMPC has a very high success rate. I had tmj surgery that changed my whole jaw position and I wonder if there just isn't anything to be done for me except PNS which is what they do for failed back surgery but it is called a Spinal Cord Stimulator. The very best to you, Sharon
Thanks for the reply Sharon...and I wish the very best for you as well. Be sweet to yourself!
shinglesdidit, you are welcome and I want you to know I googled "scarring on the intermediate nerve alone and adding causing geniculate neuralgia plus causes of geniculate neuralgia and.......I came across Ramsey Hunt Syndrome which is shingles, almost 2 to 3 hours of researching. I have read and copied so many of these. What I was trying to find was if gamma knife or cutting of the intermediate nerve would relieve your pain and I found nothing. Only that the intermediate nerve is part of the geniculate ganglion and can cause geniculate neuralgia and is cut to relieve ear stabbing pain. Because you have scarring from shingles I am unsure what will help you....right back to your neurosurgeon and maybe a higher dose of radiation from gamma knife might help, I think I got that right since your surgeon does not want to do MVD which involves decompressing cranial nerves and cutting of the intermediate nerve. Read many cases of the cutting and the pain coming back.
If you had been treated early for the shingles with antiviral meds your outcome would have been better. I am 58, I have had chicken pox and there is a vaccine for shingles called Zostavax and I am going to get it. As a grandparent I can give my grandkids who have not yet been vaccinated for chicken pox the disease.
I wish I had found more for you...I was wanting to get this intermediate nerve cut but all the risks for this surgery are facial numbness and paralysis. Shingles can cause paralysis of the facial nerve and geniculate neuralgia.
You also be sweet to yourself! Sharon
Sometimes its pays to just sit down and read through all of the discussions very carefully like I just did. I had MVD for my TN in Aug of 2012 and have been miserable since the moment I woke up. It has been 18 moths of pain management, drug cocktails, procedures and intravenous antibiotics for 6 weeks for mastoiditis. After reading through all of these threads of discussions, I found Geniculate Neuralgia. I looked it up and low and behold I have every single symptom. I was getting Botox for the tremendous post-op headaches and got 70% relief from them, but with a change in insurance at the beginning of the year it is now stuck in the preauthorization process and has worn off so the headaches are back 24/7 on top of the pain in my right ear and mastoid area. The class two narcotics I took did nothing for the pain so I quit taking them. I had another ear/sinus infection this past week and saw the ENT Thursday and have antibiotics, ear and eye drops for it so that will pass. I am suppose to see the neurologist next week and will hopefully get the Botox injections and will bring the information I printed on Geniculate Neuralgia with me. This "mystery pain" that I have had since surgery may now have a name and hopefully I will now be able to tell when I have an ear infection at the start and it not get out of hand again to where I have to go back on IV antibiotics. It is not normal for someone my age to get ear infections that severe! Thank you all so much for sharing this information. Hopefully it will be a huge help to me so that I can get on with my "golden years".
Thank you so much for all of the research...I'm afraid that the last ENT I saw that told me I was screwed....is right. It seems like every day that goes by the pain gets less and less responsive to medication. I go back down to see my neurosurgeon on the 30th and I will bring along the research you did as well as have my daughter commit it to memory.
Thanks again! Be well and warm
Always~Laurel aka shinglesdidit
Granny said:
shinglesdidit, you are welcome and I want you to know I googled "scarring on the intermediate nerve alone and adding causing geniculate neuralgia plus causes of geniculate neuralgia and.......I came across Ramsey Hunt Syndrome which is shingles, almost 2 to 3 hours of researching. I have read and copied so many of these. What I was trying to find was if gamma knife or cutting of the intermediate nerve would relieve your pain and I found nothing. Only that the intermediate nerve is part of the geniculate ganglion and can cause geniculate neuralgia and is cut to relieve ear stabbing pain. Because you have scarring from shingles I am unsure what will help you....right back to your neurosurgeon and maybe a higher dose of radiation from gamma knife might help, I think I got that right since your surgeon does not want to do MVD which involves decompressing cranial nerves and cutting of the intermediate nerve. Read many cases of the cutting and the pain coming back.
If you had been treated early for the shingles with antiviral meds your outcome would have been better. I am 58, I have had chicken pox and there is a vaccine for shingles called Zostavax and I am going to get it. As a grandparent I can give my grandkids who have not yet been vaccinated for chicken pox the disease.
I wish I had found more for you...I was wanting to get this intermediate nerve cut but all the risks for this surgery are facial numbness and paralysis. Shingles can cause paralysis of the facial nerve and geniculate neuralgia.
You also be sweet to yourself! Sharon
Mary, if you think you have GN but are post op MVD for TN and are still in pain as in stabbing pain in your ears there is another surgery for GN. Maybe you have always been just GN. The surgery is on youtube.com, just google geniculate neuralgia MVD surgery youtube. Cranial nerve 5 needs to be decompressed, that is the one for TN. You have already had Cranial nerve 5 decompressed but there are other cranial nerves that are decompressed for GN and sometimes the intermediate nerve is cut. That video is from UMPC in Pittsburgh...I was considering this as I have GN but mine is atypical along with ATN. Botox is being done for neck pain and some injections are done in my head for ON, which I really don't have but my neuro does not know how to do ATN. I am not a surgery candidate being atypical. I am researching PNS, peripheral nerve stimulation.
Mary N. said:
Sometimes its pays to just sit down and read through all of the discussions very carefully like I just did. I had MVD for my TN in Aug of 2012 and have been miserable since the moment I woke up. It has been 18 moths of pain management, drug cocktails, procedures and intravenous antibiotics for 6 weeks for mastoiditis. After reading through all of these threads of discussions, I found Geniculate Neuralgia. I looked it up and low and behold I have every single symptom. I was getting Botox for the tremendous post-op headaches and got 70% relief from them, but with a change in insurance at the beginning of the year it is now stuck in the preauthorization process and has worn off so the headaches are back 24/7 on top of the pain in my right ear and mastoid area. The class two narcotics I took did nothing for the pain so I quit taking them. I had another ear/sinus infection this past week and saw the ENT Thursday and have antibiotics, ear and eye drops for it so that will pass. I am suppose to see the neurologist next week and will hopefully get the Botox injections and will bring the information I printed on Geniculate Neuralgia with me. This "mystery pain" that I have had since surgery may now have a name and hopefully I will now be able to tell when I have an ear infection at the start and it not get out of hand again to where I have to go back on IV antibiotics. It is not normal for someone my age to get ear infections that severe! Thank you all so much for sharing this information. Hopefully it will be a huge help to me so that I can get on with my "golden years".
Granny said:
Mary, if you think you have GN but are post op MVD for TN and are still in pain as in stabbing pain in your ears there is another surgery for GN. Maybe you have always been just GN. The surgery is on youtube.com, just google geniculate neuralgia MVD surgery youtube. Cranial nerve 5 needs to be decompressed, that is the one for TN. You have already had Cranial nerve 5 decompressed but there are other cranial nerves that are decompressed for GN and sometimes the intermediate nerve is cut. That video is from UMPC in Pittsburgh...I was considering this as I have GN but mine is atypical along with ATN. Botox is being done for neck pain and some injections are done in my head for ON, which I really don't have but my neuro does not know how to do ATN. I am not a surgery candidate being atypical. I am researching PNS, peripheral nerve stimulation.
Mary N. said:Sometimes its pays to just sit down and read through all of the discussions very carefully like I just did. I had MVD for my TN in Aug of 2012 and have been miserable since the moment I woke up. It has been 18 moths of pain management, drug cocktails, procedures and intravenous antibiotics for 6 weeks for mastoiditis. After reading through all of these threads of discussions, I found Geniculate Neuralgia. I looked it up and low and behold I have every single symptom. I was getting Botox for the tremendous post-op headaches and got 70% relief from them, but with a change in insurance at the beginning of the year it is now stuck in the preauthorization process and has worn off so the headaches are back 24/7 on top of the pain in my right ear and mastoid area. The class two narcotics I took did nothing for the pain so I quit taking them. I had another ear/sinus infection this past week and saw the ENT Thursday and have antibiotics, ear and eye drops for it so that will pass. I am suppose to see the neurologist next week and will hopefully get the Botox injections and will bring the information I printed on Geniculate Neuralgia with me. This "mystery pain" that I have had since surgery may now have a name and hopefully I will now be able to tell when I have an ear infection at the start and it not get out of hand again to where I have to go back on IV antibiotics. It is not normal for someone my age to get ear infections that severe! Thank you all so much for sharing this information. Hopefully it will be a huge help to me so that I can get on with my "golden years".
Hi Mary, I'm Laurel and I have Geniculate Neuralgia. The pain is the "ice pick jabs" like they say but I prefer to describe it as the terrible hurt you get when you bounce a q-tip or something similar off your eardrum. You know that hurt. It's that 24/7 and I'm going on year 3 of this from a case of the Shingles. My neurosurgeon can see the scarring on the nervus intermedius (geniculate nerve)...but because of the rarity is not quite sure what to do with it at this point. Check out my page and pictures and a discussion from my page I have covered my fight with this monster pretty well so far. I hope now that you have a better idea of what is causing your pain that you can get specialized help. I found my neurosurgeon from the Doctors tab and she will not stop trying to get me better...shes' amazing.
Be sweet to yourself Mary and if I can help or if ya need to pick my brain, give me a holler!
PeacenLove Always~Laurel aka shinglesdidit
Mary N. said:
Granny said:Mary, if you think you have GN but are post op MVD for TN and are still in pain as in stabbing pain in your ears there is another surgery for GN. Maybe you have always been just GN. The surgery is on youtube.com, just google geniculate neuralgia MVD surgery youtube. Cranial nerve 5 needs to be decompressed, that is the one for TN. You have already had Cranial nerve 5 decompressed but there are other cranial nerves that are decompressed for GN and sometimes the intermediate nerve is cut. That video is from UMPC in Pittsburgh...I was considering this as I have GN but mine is atypical along with ATN. Botox is being done for neck pain and some injections are done in my head for ON, which I really don't have but my neuro does not know how to do ATN. I am not a surgery candidate being atypical. I am researching PNS, peripheral nerve stimulation.
Mary N. said:Sometimes its pays to just sit down and read through all of the discussions very carefully like I just did. I had MVD for my TN in Aug of 2012 and have been miserable since the moment I woke up. It has been 18 moths of pain management, drug cocktails, procedures and intravenous antibiotics for 6 weeks for mastoiditis. After reading through all of these threads of discussions, I found Geniculate Neuralgia. I looked it up and low and behold I have every single symptom. I was getting Botox for the tremendous post-op headaches and got 70% relief from them, but with a change in insurance at the beginning of the year it is now stuck in the preauthorization process and has worn off so the headaches are back 24/7 on top of the pain in my right ear and mastoid area. The class two narcotics I took did nothing for the pain so I quit taking them. I had another ear/sinus infection this past week and saw the ENT Thursday and have antibiotics, ear and eye drops for it so that will pass. I am suppose to see the neurologist next week and will hopefully get the Botox injections and will bring the information I printed on Geniculate Neuralgia with me. This "mystery pain" that I have had since surgery may now have a name and hopefully I will now be able to tell when I have an ear infection at the start and it not get out of hand again to where I have to go back on IV antibiotics. It is not normal for someone my age to get ear infections that severe! Thank you all so much for sharing this information. Hopefully it will be a huge help to me so that I can get on with my "golden years".