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 08-18-2008, 04:53 PM #1
marriedtopain marriedtopain is offline
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Hello. I've been looking for a sight like this for a long time now. My husband has had severe O.C. for about ten years now.He's had the steroid injections,the nerve stripped of scar tissue,the nerve severed(which doctors now say serves no pupose what so ever-only will make it worse-which it did) and has been on every pain killer known to man-nothing works. He's currently taking Methadone and Gabbabentin-none of which work. All they've done is destroy is stomach making him throw up constantly,thus extreme weight loss. He is currently waiting for a Peripheral nerve stimulator to be implanted in his head to hopefully alleviate some of the pain but we live in Canada and could be waiting forever for the surgery.If I can help anyone with questions please feel free to contact me. We've pretty much done the whole spectrum of treatments.
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Old 08-18-2008, 06:19 PM #2
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Wow, I feel for your husband and I'll send a ton of positive wishes that he'll get the implant sooner than later. I've posted on another thread so I won't repeat it here, but I'm sure I'll have tons of questions.
Welcome and best wishes, Ellena
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Old 08-19-2008, 08:56 PM #3
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Hi, welcome to the site. I hope your husband gets the nerve stimulator soon and it provides him some relief. What caused his symptoms to begin?

Take care, Diana
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Old 08-20-2008, 02:25 PM #4
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Quote:
Originally Posted by diaba View Post
Hi, welcome to the site. I hope your husband gets the nerve stimulator soon and it provides him some relief. What caused his symptoms to begin?

Take care, Diana
Hi Diana, we're not sure how it started but he was a drywaller for years and we figure it was from having his neck bent back all the time.Thanks for caring!
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Old 01-30-2009, 11:53 AM #5
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Hi

Could you tell me more about your surgery. I have already been thru one surgery and now they are telling me to cut the nerve altogether. Really do not want to.

I had my surgery done at Georgetown in DC - Aug 08.
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Old 01-30-2009, 03:27 PM #6
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Quote:
Originally Posted by marriedtopain View Post
Hi Diana, we're not sure how it started but he was a drywaller for years and we figure it was from having his neck bent back all the time.Thanks for caring!
doe she have arm pain or symptoms with it?

If he does you might like to visit our Thoracic Outlet Syndrome {TOS}forum.
http://neurotalk.psychcentral.com/forum24.html

drywall work would be one that could set someone up for TOS.
repetitive , heavy arm, shoulder, neck use.

just a few links about TOS
TOS info:
http://www.medifocushealth.com/RT017/index.php
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.doctorellis.com
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Old 02-01-2009, 11:49 PM #7
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Quote:
Originally Posted by marriedtopain View Post
Hello. I've been looking for a sight like this for a long time now. My husband has had severe O.C. for about ten years now.He's had the steroid injections,the nerve stripped of scar tissue,the nerve severed(which doctors now say serves no pupose what so ever-only will make it worse-which it did) and has been on every pain killer known to man-nothing works. He's currently taking Methadone and Gabbabentin-none of which work. All they've done is destroy is stomach making him throw up constantly,thus extreme weight loss. He is currently waiting for a Peripheral nerve stimulator to be implanted in his head to hopefully alleviate some of the pain but we live in Canada and could be waiting forever for the surgery.If I can help anyone with questions please feel free to contact me. We've pretty much done the whole spectrum of treatments.
I am in BC and also waiting while my pain specialist tries to work through the miles of red tape to get approval for coverage for an ONS. I have ON and have been with a brutal headache since last Feb.

May I ask which province you are in? They have approved TWO (just two) stims for angina pain in BC. I too am frustrated with the waiting. It looks like if I can even get a trial lead, I have to pay for it out of my pocket. God only knows where I am going to come up with the $$ for that!
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