Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 07-24-2010, 09:39 PM #1
kkaabboomm kkaabboomm is offline
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Default Geniculate Neuralgia + surgery

hey -

I thought I'd stop by in case others google GN and stumble upon this site, or anyone here has questions or anything else.

I got hit with GN in October 2009, and had surgery in December 2009. As a 24 year old male, the stabbing ear pain 4 times a day was not something I could handle.

I went to ENT's in multiple states, all of whom ruled out every ear problem possible. Finally a pain dr said I might have GN and told me to find a Dr who could help.

I got in with Dr. Horowitz at UPMC (Pittsburgh) and he sent me to his favorite ENT and oral surgeon there to rule out all other possible issues. He finally asked me to describe the pain again to him and figure out a way to show him how and where it hurt. Heres what I came up with:

It always felt like I had a bad ear infection, a constant, dull-ish pain in my right ear. My ear just...hurt. 4 times a day, for half an hour at a time, I got "pain waves" where it felt like an ice pick was stabbing me in my ear and wouldn't stop. How far in my ear? Well, if you take your standard issue pen, and go maybe an inch or two on it, thats how far. I used that as an illustration for him, because the pain was 'in' my ear.

Anyways, MVD fixed it, I'm great now, I even posted a video of the surgery (not mine specifically, but one Dr. Horowitz did) on youtube for anyone curious. My advice: don't ever give up if your head hurts like mine did. Figure out whats wrong, and get it fixed if possible.
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Old 07-27-2010, 02:02 AM #2
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Hello there anyone and everyone.... I have been to about 10 doctors, ENTs, Neurologists, dentists, and saw a neurosurgeon last week. The neurosurgeon is convinced that I have GN, but has tried to scare me out of surgery. He is telling me that I may have vertigo so bad, I may never walk again. He also says that he only does the surgery when people are on the verge of suicide. After 11 years of this pain, I am just about there. I've been on almost every anti-depreesant and seizure medicine known to modern science and nothing has worked yet.

Has anyone had this surgery? Did you get the same scary odds? I have been looking on the net for some more info on the risks, but haven't found anything as profound as the neurosurgeon is saying. A big problem for me..... He is the only one who does this surgery for hundreds of miles. I'm desperately looking for the facts on the risks of the surgery for GN. Can anyone point me to a good source of info?

To the original author... Sounds like you had a great doctor and experience. It is astonishing to me that you got an accurate diagnosis and treatment so quickly. I wish I would have been diagnosed correctly when this started for me. I have been told I had Menieres Disease, Atypical Migranes, Atypical Cluster Headaches, Temporo-Mandibular Joint Dysfunction (Ruled out), Tooth Decay (Ruled Out), My ears were too clean (seriously), but mostly I was told, I don't know whats wrong with you....Sorry."

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Old 09-27-2010, 12:53 PM #3
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Default GN questions

[QUOTE=kkaabboomm;678681]hey -

I thought I'd stop by in case others google GN and stumble upon this site, or anyone here has questions or anything else.

Hi there,
I had a couple of questions for you about your pain and how everything has been for you since the surgery. First of all, I am doing this research for my father who has been complaining about a bad pain in his ear for years. A big problem with diagnosing the pain for my dad is that he suffered from a stroke over 5 years ago and 16% of his brain was damaged by it. He now suffers from aphasia as a result of the stroke which means he cannot speak at all. He gets his "yes" and "no's" mixed up so it is very difficult to have him discribe the pain. He complains about pain in his right ear and the pain can last for a half hour to hours. Somedays he has no pain, somedays the pain never goes away. He has been to countless doctors and nobody has come up with a definetive diagnosis. So I was hoping you could describe your pain and symptoms in more detail so i can ask my dad if this is similar to yours.

I was also wondering about your surgery. It seems like the hospital in pittsburgh does the majority of these surgeries. Did you look at any other hospitals? Why did you choose pittsburgh? Also, is your pain completely gone now? Were there any side effects from the surgery? Any help would be greatly appreciated

Kevin Lundberg
Salida Colorado
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Old 10-03-2010, 09:18 PM #4
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I can help with describing the pain of geniculate neuralgia for you as I have suffered with it for 6 years myself.
There seems to always be two types of pain.One is a constant pain,always there like a constant dull ear infection type pain.It never goes away and drives you a little insane.The second pain is the worst ever.It is usually triggered by something and that is usually unique to the sufferer.Mine was wind and cold and touch.This pain is deep in the ear and is like and ice pick and it is a very intense pain and will knock you to your knees at its worst.
I had tried every pain killer and was not getting any relief from any at all and was unable to find a surgeon in England who would do the surgery so I did a lot of reserach and too found that Pitts was the place to go.
I had my surgery back in July but I did not have such good results.I have posted on here so if you look for my posts you will seemy story.
It is a very difficult problem to treat and would be very hard to diagnose properly in your father but if he does have it then my heart goes out to him.I am on a concoction of drugs to stop the pain now but I am on Keppra which does have a very good effect on the stabbing pain so if you feel it is worth it speak to your doctors about that.
I hope that helps but ask anything you need to I am happy to answer any questions.
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Old 11-19-2010, 08:30 PM #5
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Hi Clair
First of all thank you for the reply, your pain symptoms seem identicle to my fathers pain, so that gives me hope that the diagnosis of GN is correct. (We have had a neurosurgeon give him a possible diagnosis on GN since my last post also)
Secondly, I have read most of your posts here and I am so sorry that you have had so many problems after your surgery. I couldn't hold back the tears reading what you have gone through. It doesn't seem fair that anyone should have to deal with so much missery.

A neurosurgeon in Colorado wants to perform MVD on my dad, but we were still leaning towards Pittsburgh until I read what you have gone through. How would you rate your experience there? Do you think they did anything wrong?

Also thank you for the tip on Keppra, I'll ask his Dr. about it.

Thank you again and I hope you are doing better now
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Old 02-02-2011, 02:27 PM #6
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Default GN with little success

I've struggled with GN for about 4-5 years now.

I have a series of 3 symptoms--1)ongoing numbness/tingling, as if someone swabbed my ear canal with local anesthetic. 2)ongoing dull achey pain (ear infection pain mentioned in others' posts) and 3) episodic piercing pain, that just about brings me to my knees.

In 2009, I had MVD surgery at Allegheny General Hospital in Pittsburgh with Dr. Jannetta and Dr. Sekula. I traveled from Washington state to be there, as all the articles I read as I was trying to figure things out referenced Pittsburgh. Dr. Jannetta pioneered the MVD procedure when he was at UPMC.

They found compression of both my nervus intermedius and the trigeminal nerve. After allowing for the post-surgical pain to subside, I unfortunately still had symptoms.

After not getting the relief I hoped for from the first surgery, I went back to Pittsburgh in Dec 2010 and had my Jacobson's Nerve and Chorda Tympani cut, as sometimes ongoing symptoms are cause by nerves misfiring farther away from the brain stem. This was done through my eardrum, by an otoneurologist, rather than retromastoid.

Unfortunately, my case seems to be atypical, and none of these procedures have fixed the problem. I'm currently in touch with Dr. Jannetta, and he thinks I should come back for another look at the brain stem.

I'm wary of another major surgery and the long travel. I have picked up a "meditation as pain relief" audio, and hope to take some time to see if that helps. Also considering going to a Pain Management Clinic to see if they have any suggestions.

So frustrating!! Any ideas are definitely appreciated!
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Old 02-02-2011, 11:17 PM #7
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I don't have GN, but I do have TN and occipital neuritis. I have used Mindfulnees meditation with some success. If you have a public library near you, search for any media authored by Jon Kabat-Zinn. I've used his CD's and books over the past 3-4 years and I find the format he presents his material in is very user friendly. Take care and I hope this helps you.
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Old 10-05-2011, 09:42 PM #8
musictherapykim musictherapykim is offline
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Trig

Quote:
Originally Posted by jmurphy46254 View Post
Hello there anyone and everyone.... I have been to about 10 doctors, ENTs, Neurologists, dentists, and saw a neurosurgeon last week. The neurosurgeon is convinced that I have GN, but has tried to scare me out of surgery. He is telling me that I may have vertigo so bad, I may never walk again. He also says that he only does the surgery when people are on the verge of suicide. After 11 years of this pain, I am just about there. I've been on almost every anti-depreesant and seizure medicine known to modern science and nothing has worked yet.

Has anyone had this surgery? Did you get the same scary odds? I have been looking on the net for some more info on the risks, but haven't found anything as profound as the neurosurgeon is saying. A big problem for me..... He is the only one who does this surgery for hundreds of miles. I'm desperately looking for the facts on the risks of the surgery for GN. Can anyone point me to a good source of info?

To the original author... Sounds like you had a great doctor and experience. It is astonishing to me that you got an accurate diagnosis and treatment so quickly. I wish I would have been diagnosed correctly when this started for me. I have been told I had Menieres Disease, Atypical Migranes, Atypical Cluster Headaches, Temporo-Mandibular Joint Dysfunction (Ruled out), Tooth Decay (Ruled Out), My ears were too clean (seriously), but mostly I was told, I don't know whats wrong with you....Sorry."

Have you been to a maxiofacial surgeon? Also, have the doctors you have visited sent you to get any tests? Brain stem tests? MRI? I agree that 2 months is REALLY fast! I started having symptoms this past June and went to an ENT, 2 Maxiofacial surgeons and 1 neurologist and was just diagnosed with GN last week. I started trileptal and it seems to be dulling most of the pain. I still am feeling horrible after talking all day. I did also find out that I have arthritis in my jaw and TMJ which is adding pressure to the GN (nerve 7). I came to this board because it's just good to know that I am not alone. This disorder I have found to be very isolating. I don't think any one else understands the pain. I constantly want to feel like taking a q-tip to my ear...it's like an annoying throbbing sensation that doesn't stop.
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Old 01-17-2016, 05:50 PM #9
Bonnie718 Bonnie718 is offline
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Quote:
Originally Posted by kkaabboomm View Post
hey -

I thought I'd stop by in case others google GN and stumble upon this site, or anyone here has questions or anything else.

I got hit with GN in October 2009, and had surgery in December 2009. As a 24 year old male, the stabbing ear pain 4 times a day was not something I could handle.

I went to ENT's in multiple states, all of whom ruled out every ear problem possible. Finally a pain dr said I might have GN and told me to find a Dr who could help.

I got in with Dr. Horowitz at UPMC (Pittsburgh) and he sent me to his favorite ENT and oral surgeon there to rule out all other possible issues. He finally asked me to describe the pain again to him and figure out a way to show him how and where it hurt. Heres what I came up with:

It always felt like I had a bad ear infection, a constant, dull-ish pain in my right ear. My ear just...hurt. 4 times a day, for half an hour at a time, I got "pain waves" where it felt like an ice pick was stabbing me in my ear and wouldn't stop. How far in my ear? Well, if you take your standard issue pen, and go maybe an inch or two on it, thats how far. I used that as an illustration for him, because the pain was 'in' my ear.

Anyways, MVD fixed it, I'm great now, I even posted a video of the surgery (not mine specifically, but one Dr. Horowitz did) on youtube for anyone curious. My advice: don't ever give up if your head hurts like mine did. Figure out whats wrong, and get it fixed if possible.
I've had this for 11 years now and im only just finding out what it is.. i've been to countless ENTs and ERs and dentists and nobody could give me any answers. I was called a liar too many times and i got discouraged. I was only a kid. Anyways, its been getting worse really fast lately and its literary debilitating now.. i found a neurologist and poured my heart out to her and she believed me at long last. she knew right away what it was she prescribed me meds but they make me feel funny so i cant take them in the day like im supposed to because i have responsibilities.. she says the surgeon won't even consider me until she can proove 100% that i have it... i am desperate for this surgery man, im only 25 and i cant play with my 2 year old baby because every single thing i do is a trigger, especially the littlest things like swallowing and clearing my throat, you know, things that normal people do without even noticing... I'll go anywhere i have to go to get the help that you got so fast. I cannot do this much longer. I watched the video of the surgery that you posted..
I'll take it. I dont want the pills i just want permanent relief. I emailed his office but nobody ever got back to me... anything you could tell me would be awesome... thanks, Bonnie Coyne
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