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Glossenpharengeal Neuralgia

Does anyone out there have this condition?  It is very rare and the only way to treat to release the pain is a brain operation.  I am not sure if I want to do this.  Thanks for your input.
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637722 tn?1245086059
Hi,

I am sorry that I haven't responded sooner. I don't check this account daily.

I too wondered when the ENT told me I had neuralgia what he was talking about, then I did research on the Internet and realized there actually was a condition which was called glossopharyngeal neuralgia. I was on Gabapentin for a year before I had to have it increased and then within the following year it had to be increased again. Towards the end of the second year I was put on Carbamazepin and that made me nauseous. That is when I decided to have the surgery. I did research on the surgery itself but not so much as the recuperation. The neurosurgeon wanted me to have the surgery when I first met with them after the first year but I was not ready. I am glad I had it now though.

Of course you may contact me at any time to discuss what you are going through and I will do what I can to help you. When I was first initially diagnosed I put a post on this site for anyone suffering with the ailment and got no hits. I do realize how rare this condition is.

Sincerely,
MaryAnn


Helpful - 0
563773 tn?1374246539
MEDICAL PROFESSIONAL
Hello,

Thanks for writing in.How are you now?

As none of the medicines for glossopharyngeal neuralgia seem to be working for you now,as I had told you in my earlier post , microvacular decompression surgery or suboccipital craniectomy seem to be the right decision.A good neurosurgeon will definitely make things going for you.We have seen many patients responding well to it.So pls don’t worry and my wishes for you and the success of your surgery.

Hope it helps.Take care and pls do keep me posted on how you are doing and if you have any additional queries.

Helpful - 0
Avatar universal
Hi

Glossopharyngeal neuralgia is characterized by repeated episodes of severe pain in the tongue, throat, ear, and tonsils. These episodes can be brief (few seconds) to a few minutes.
It is caused by the irritation of the ninth cranial nerve (Glossopharyngeal). The exact cause may or may not be found. Some of the causes can be pressure on the nerve due to tumors, vessels, or lesions.

Investigations such as CT scan, MRI, xray can be used to find out the cause of the irritation.
Management consists of pain management using analgesic medications. Other medications which have been used are as carbamazepine, gabapentin, and phenytoin. Severe, resistant cases can be treated with surgey.
A good neurologist should be able to diagnose and manage the condition.

Take care and Regards

Helpful - 0
Avatar universal
Thank you for responding to my question.  I am in the process of getting surgery next year.  I just am so sick of this and the meds seem not to be working any longer and the dosage is increasing which makes me tired.  Thank you for your insight and especially for responding.  Sometimes I feel alone with this disorder because know one understands my pain.  I look normal on the outside, but inside it hurts.   Thank you again.

Jeannette
Helpful - 0
Avatar universal
Hi MaryAnn:

Well, I am going to take the plunge and in the process of setting up my operation for the Glossenpharyngeal the beginning of next year.  I want to thank you so much for responding to my plea.  Literally, plea!!.  Very few Dr's know about his condition in my area in Florida and even my ENT couldn't come up with anything.  My pain is breaking through again and I have up my meds and I feel so floaty.  My Dr. did switch me over to something else and I was getting nauscous. I feel now that I have connected with you having the same condition, that it makes it sort of real for me.  I will be asking more questions as the operation date gets closer.  Is that okay?

Thank you again
Jeannette
Helpful - 0
563773 tn?1374246539
MEDICAL PROFESSIONAL
Hello,

Glossopharyngeal neuralgia is a condition in which there are repeated episodes of severe pain in the tongue, throat, ear, and tonsils, which can last from a few seconds to a few minutes.

Medical treatment is only for symptoms.The root cause lies in the nerve ,so decompression surgery or suboccipital craniectomy with exploration of the glossopharyngeal nerve are the preffered treatments.

Hope it helps.Take care and pls do keep me posted on how you are doing or if you have any additional doubts.Kind regards.


Helpful - 0
637722 tn?1245086059
Hi,



I am familiar with this situation, as I have been diagnosed with it. The ENT that identified it put me on pain medication. I was on medication for a year. I had some breakthrough pain but for the most part it worked. After that first year, I started to have pain that wouldn’t be controlled with the medication so the ENT referred me to a neurosurgeon in Pittsburgh. He concurred with the ENT that I indeed had Glossopharyngeal neuralgia and told me about the surgery. At that time I wasn’t ready for a drastic step so they increased the medication. It worked for another year with some breakthrough pain. Then the pain increased and they put me on another anti-seizure medication along with the one I was already on. The combination was making me sick. That is when I decided to have the micro vascular decompression. I had it done June 13, 2008 and have been pain free since. To me it was the best decision I could have made. The medication was only a ‘Band-Aid’ for the pain. I hope this helps, if you have any other questions please feel free to contact me. Elantra 2006

MaryAnn
Helpful - 0
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