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 10-03-2010, 09:18 PM #1
todd74 todd74 is offline
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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 #2
kevindow kevindow is offline
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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 #3
megzab megzab is offline
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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 #4
EE03 EE03 is offline
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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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