Back story- I woke up one morning with a terrible migraine and the worst ear pain in the world. The ear pain was a sharp stabbing pain- someone stabbing me with an ice pick in the ear. This was the first migraine i have every had. Needless to say, i went to my PCP who referred me to Neuro. It was just a migraine here take these meds. Fast forward a year later i still suffered from the migraine and ear pain. Well it has been 6 years later and i still have the chronic ear pain and neck pain. I have seen 4 neurologist and 1 neurosurgeon. The neurosurgeon is the one who diagnosed me with GN.
The neurosurgeon states the next option is surgery. He told me to research GN and get back to him once i make a decision, there is not much on GN all the articles are the same. Has anyone had MVD surgery? What is the recovery time?
As it happens, I just recently found an article on MVD for Glossopharyngeal Neuralgia, that may give you a general sense of what is involved in Geniculate Neuralgia. With Geniculate, the target is a nerve branch that runs between the 6th and 7th cranial nerves. I also have a case report of MVD that is specific to Geniculate Neuralgia. This nerve branch is not an easy place to reach, and you'll want to work with a surgical team that does several of these procedures per year. See attachments.
Hi! I have had TN x23 yrs.It often felt like a deep burning of 1/2 of my face and head and was very intense-used to last 6-8 hrs at a time and started in the ear.( I have had,and still have some other symtoms as well.) I take Swansons brand Homomeopathy tablets-very low in price-I take one called Migraine Relief,also Earache Relief,and Nerve Pain Relief,also Boiron Sinusalia as needed.Over time,it has helped me a lot and have never had it anywhere as bad as that since! I wish you the best! I know how rough it can be!
Thanks Erin. I have a constant pain- no relief whatsoever. On a pain scale I'm at a 6 everyday. If i get a migraine with it, it is debilitating. It generally puts me in the emergency room for a few hours. However the ear pain never goes away. How long did it take for these meds to work?
erin said:
Hi! I have had TN x23 yrs.It often felt like a deep burning of 1/2 of my face and head and was very intense-used to last 6-8 hrs at a time and started in the ear.( I have had,and still have some other symtoms as well.) I take Swansons brand Homomeopathy tablets-very low in price-I take one called Migraine Relief,also Earache Relief,and Nerve Pain Relief,also Boiron Sinusalia as needed.Over time,it has helped me a lot and have never had it anywhere as bad as that since! I wish you the best! I know how rough it can be!
Thanks Red. The neurosurgeon i just saw has only done about 6 of these type of surgeries, all with success. He has trained with and wrote paper with Dr Peter Jannetta. He seems very confident about the procedure. I would like to know someone who had this done and or is going to have it done. What was the outcome/recover time?
Richard A. "Red" Lawhern said:
As it happens, I just recently found an article on MVD for Glossopharyngeal Neuralgia, that may give you a general sense of what is involved in Geniculate Neuralgia. With Geniculate, the target is a nerve branch that runs between the 6th and 7th cranial nerves. I also have a case report of MVD that is specific to Geniculate Neuralgia. This nerve branch is not an easy place to reach, and you'll want to work with a surgical team that does several of these procedures per year. See attachments.
Has anyone run a search in our search window above, on "Geniculate". I know there are hits there, but I don't recall if there were any reports from people who had an MVD for that variety of neuralgia. If MVD for Geniculate Neuralgia has similar effects to MVD in TN, then you can expect 2-4 days in the hospital, and a recovery time that can vary from a week to four weeks, if there are no significant complications. Some patients report almost "instantaneous" pain relief after waking up,except for the incision. Others relate a healing process that can take six months to a year as the nerves settle down. I wish I could be more definite for you, but that's the kind of spread we observe even in successful MVD.
Thanks Red for the insight. I am not rushing into surgery, just curious as to how people are dealing with this GN. What's another couple months of pain when it's been going on for 6 years. I will continue to do research on this and the doctor.
I had the surgery back in january and the cut the nerve… recover was tuff and i had lose of hearing in my right hear. Luckly my hearing came back after a few weeks. I also had vertico as a result of the surgery but after a few weeks that was over… the bad part is my pain came back recently. Over the past month been bad. Ive had attacks everyday for past two weeks. They are getting more painful and longer. I am still in pain right now and it started at 12p and it is now 1030p. This is my story,and my battle is not over. I returned to my surgeron today and let him know what going on. Possible another section of the nerve behind my ear is the problem. 20% chance he says… would not give me any pain meds but am going to a nuralogist soon. Dont know if this helps. And please if any body of herard of it coming back let me know! Thanks
I am sorry to hear you are in pain. This is my fear, surgery then the pain coming back within months and with a vengeance. I am not sure what NIN as I am new to all of thiS was you surgery MVD? My pain never goes away it is constant in the ear all day all night. I am getting another opinion in November. Which will be my 5th opinion. All the doctors have said a new and ddifferent diagnosis. I wish you all the luck. Hopefully someone can figure out your pai .
We both have the same thing nervous intermedies nurolgia and GN.are the same thing… i got threw attcks though as you are chronic. Yesterday went on for 14 hours so… i might be on the same path… was yours always chronic.we have something very rare and only 20 people have had surgery on this. I went to comombia universty. They are great. I just happen to be the rare of the rare as there might be another section right behind the ear. Ive alreadt had MVD. if i go again (which i dont want to) it will be a diffrent procedure and involves shaving of the skull before going in… does not sound like fun. If you get the MVD and your down for a few weeks but the pain is gone i think its worth it.dont go by my case
What area of the country do you live in?.. i was told diffrent things until i went to colombia where i finally got the right doctor to correctly tell me what is wrong.Was your pain always chronic?
My pain has been chronic for 6 years, on top of the pain i also suffer from migraines. My pain scale everyday is about 5/6. I have learned to live with it since all the medications i have tried don't help at all, even narcotics don't relieve the pain. I live in the US- Philadelphia area. All 5 doctors have come up with different diagnosis.
When i get my attacks they are from 7 to 10… more often 10… ive been dealing with this for 2 years. . 6 years and chronic…WOW. are you able to work?. Did u try john hopkins hospitail?. Ive heard good things. Im pretty sure our syptoms are simalar. …deep ear pain like ice pick in ear.i cant smile or move mouth face well during my pain spells. Sometimes feel like ice hot is in my ear as well. Yesterday during my pain i took alot of pain meds but does not work… cant sleep because my pain is so high… how are ur sleeping habits?
I actually work two jobs. trust me somedays i don't want to, however i have 3 teenagers, not working is not an option. Yes the ear pain is exactly like an ice pick deep in to ear. I have tried pain meds, anti seizure meds, anti depressants, nothing work. Even when i get a migraine that sends me to the emergency room and they give me a few different meds the ear pain never goes away. Sleeping habits, sometimes i sleep for a few hours or i toss and turn all night.
Thats tuff… sounds like we have the same thing… diffrence is my pain level is higher during my spells yet daily and your is lower but chronic… i dont know whos screwed more
Agree. i have dealt with this for so long i am use to the pain it is apart of my daily life. My pain level is a 6 everyday. I don't get spells it's always there. However sometimes i will get numbness and tingling just on the right side of my head. I have a pretty high pain tolerance. Some days this is so debilitating i don't want to move. It really sucks, going to the movies is too loud, concerts forget it. I can't have the phone on my right ear.
Yup… same here…during my spells loud noises or high pitch sounds suck.no way anything can touch. I faced the surgery,which was a mental game all in its self. If MVD works for you i think its worth the risk. Just because my was a failure dont let hold you back. I would like to hear a success story…if i do the second one,they will go right behind the ear which involves shaving of the skull before they can cut the skull. My nuerosurgen said he does not do this,i would have a ENT surgen do the procedure