After years of frustration and many specialty doctor visits, I have been diagnosted with geniculate neuralgia. I spoke with the neurosurgeon and neurologist about surgery but am undecided. I would like to know what some other ppl have done to get relief, how you manage your pain, how severe your case is, etc. Also, are you being treated at a major university?

I have never been able to talk with anyone who suffers from this so hearing your stories may help me feel like I am not alone.

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Hello. I am a fellow GN sufferer that just joined the site today. What has been happening with your GN since your post? Which side is it? How difficult was it for you to get diagnosed?

For me, its been almost 4 yrs, almost 2 since diagnosis. Left sided, intense, and is my primary challenge. I also have secondary TN with some residual ON. (head trauma gave me the ON - good thing I"m hard headed.) The military denied the surgery so I expect my medical discharge next month, which will allow me to get the surgery. My GN has ruined my quality of life in many, many aspects. If it weren't for my hard head and family, I don't know how I would be handling it.
I was diagnosed by civilian experts, not the military. Getting that DX was tough. I'd like to hear how you got diagnosed.
R/

Sort of Yay! people like me... (former service person too)

I'm here trying to figure out what i can do next to treat my chronic pain. I have chronic Ramsay Hunt syndrome which gives me Geniculate neuralgia. It has been a really long road to diagnosis 22 years and many many different drugs, most of which have not worked at all. I had a microvascular decompression of the 5th and 7th cranial nerves in 2005 and it worked great for about 5.5 years. Now, I'm in sever pain again. ear, neck shoulder, eye, cheek, sinus and headache.

I also have a sister with trigeminal neuralgia (classic).

My real name is Crystal but you can call me windy if you want.

It must be even more painful the 2nd time around after a period of relief, windy! So sorry about that.

did you have any permanent side effects from the surgeries? Who did it, or what facility?

I had the surgery in 1998 in Pittsburgh for geniculate neuralgia. I have been pain free until about the last year with attacks that come & go. I am considering the surgery again because it did work.

i just got back from UPMC and surgery. To quote a resident "it was complicated". seems trauma was the source and I had scarring they had to hack through. Sectioned the nervus intermedius and MVD'd pert near everything else. I have just an 'echo' of the old pain track and that is lightyears better! The side effects are slowly abating and not stabilized yet (unbalance, hearing, etc).
Should it ever have the gall to resurface, I'm right behind you in going thru it again. It's like a new lease on life. Oh, wait, it is a new life.

Let me know how you're doing!

Hello! I just made a appointment with Dr Horowitz at UPMC For this Tuesday. I have been suffering with this excruciating ear, throat, and neck pain for 12 years and am ready to try surgery. Sounds like I have Geniculate Neuralgia per the phone conversation, but have been treated for glossalpharengeal neuralgia for years...plus the years I was treated for a sore throat and everything else...so frustrating. Anyway I am terrified, but can't live like this. I actually have attacks where I look like a salivating, gagging, insane troll. Wish me luck!

I had surgery on july 25 th of this year with Dr Horowitz.. I am pain free since the surgery. I feel like a new woman. I should have done it a long time ago. I was like you a little worried but i figured nothing else has worked so why not give it a shot.

Had surgery on july 25th of this year by Dr Horowitz. I feel like a new woman... I have been pain free since surgery and enjoying life with no pain and no medication..

I am new to the site, and like many of you were brought to Neuro Talk by googling GN. There is so little to be found online when you search for Geniculate Neuralgia.

After almost 3 years of suffering, and trying many treatments that either did nothing at all (Chiro/Physio/Acupuncture) to almost every meds my doctors can think of, I've been diagnosed with GN.

Now I have been given the option of surgery, and had all the risks explained. I just want to research as much as possible.

There is an oddidty or two with my condition that is not EXACTLY like GN, which makes me wonder about things.

I've always had issues with that ear. So many ear infections as a kid that I had to have a Tympanoplasty in my late teens. The pain only started after a serious ear drum rupture almost 2 decades later ( happened in an airplaine landing suddenly). Ok, it wasnt right after, there was a period of 3 months when the only symptoms I had was tinnitus.

It could be a coincidence, since I was in my mid to late thirties at that time. The rupture could have nothing to do with it, however an anomaly.

I also have a tingle that starts on my skull around my ear then moves across my scapl till just around center and reverses back to my ear, ocasionally. Something I havent read in any doccumentation. This however was stopped for almost 7 hours with one of the nerve block injections. The fact that it was blocked and had no effect on my "main" pain concern we assume it has nothing to do with it and can treat it later.

Sorry for long winded (any english major has likely stopped reading a long time ago) post, but I would love some more information if there is any to be found.

Frostbite