glossopharyngeal neuralgia

[daggybee]

I have severe r  ear and r side of throat throbbing and r eye nerve is stabbing.  I was hospitalized for it a few weeks ago, the couldnt fina an explanation.  Now its back.  Some physicians suggested glossopharyngeal neuralgia/trigeminal neuralgia.  I was wondering if there is anyone here who has this problem/symptoms.

[kreshbuck]

sUFFERING FROM GLOSSO PHARYNGEAL SINCE TEN YEARS
LAST TREATMENT WAS ACCUPUNCTURE AND WAS GOOD. GOT RELIEF BUT COME BACK. EVERY TIME I JUST DO ACCUPUNCTURE. BELIEVE ME THIS HELPS A LOT

[elantra2006]

Hi,

I am familiar with this ailment as I have suffered with it for two years. I started with a sore throat that went away for a brief period then came back. Went to my PCP with the complaint and therefore tried anti-biotics, allergy medication & testing for thyroid. Everything came back normal so I said enough! Send me to an ENT doctor. Upon my first visit, he diagnosed me with nuralgia. I then looked to the Internet for help and low and behold there really was an actual disorder. I had all the symptoms stated. I was put on gabapentin and it worked for nearly a year (did have pain on and off throughout). Then the pain came back and the ENT said there was nothing else he could do for me and sent me to a nerurosurgeon. They wanted to do surgeyry but I wasn't ready so they increased the dosage of the medication and I was good on that for another year (did have pain on and off again). Then the pain was back again with no relief with another increase of medication. They also added tegretol and the combination of medications were making me sick and my quality of life was being interferred with so I opted for the surgery. I had the microvascular decompression done June 2008 and so far so good, no pain. Was stated that the ninth cranial nerve was being compressed by a blood vessel.

Good luck and I hope your brother finds relief.

The doctors told me the surgery was good for at least 15years. I will take what I can get.


MaryAnn

[rebecca8]

Was Dr Ivan Ducic the doctor you saw?  We are researching this doc to possible cut the nerves to help my son, who has had 13 years of constant head pain from occipital neuralgia...... any info we can get is so appreciated.  Beth

[elantra2006]

No, Dr. Ducic was not the doctor I dealt with. I am a patient of Dr. Peter Jannetta, located at Allegheny General Hospital in Pittsburgh PA.

He had concurred with the ENT that diagnosed my situation in 2006 as Glossopharyngeal neuralgia. I did the pain medication for a year then decided upon the surgery when the medication wasn’t controlling the pain to my satisfaction. I am glad that I underwent the surgery. I know they did not cut any nerves; they put Teflon between the nerve and the offending blood vessel.

I hope this helps you. If you have any other questions, feel free to contact me…elantra2006

MaryAnn

[elantra2006]

To: Beth

I don't know if you got this post or not...so I sent it again.

No, Dr. Ducic was not the doctor I dealt with. I am a patient of Dr. Peter Jannetta, located at Allegheny General Hospital in Pittsburgh PA.

He had concurred with the ENT that diagnosed my situation in 2006 as Glossopharyngeal neuralgia. I did the pain medication for a year then decided upon the surgery when the medication wasn’t controlling the pain to my satisfaction. I am glad that I underwent the surgery. I know they did not cut any nerves; they put Teflon between the nerve and the offending blood vessel.

I hope this helps you. If you have any other questions, feel free to contact me…elantra2006

MaryAnn

[gratklox]

Yesterday my husband was tentativly diagnosed with Trigeminal Neuralgia.  After doing some research, all of his symptoms indicate GN instead.  The only loose end is that he experiences pain in both sides of his throat-neck-ear, although more on one side than the other.  Is this possible, or should I continue to search?

[C_Breeze]

I have GN and I have pain on both sides 80 percent right side 20 percent left if that helps you any....

[LisaMichelleFine]

I was just diagnosed with Glossopharyngeal Neuralgia yesterday.  I turn 40 on November 15th.  The pain is unbelievable when it comes on, and unfortunately I have a very difficult time taking pain medications as they make me very ill & drowsy beyond belief.  I have had 2 MRI's, a Fine Cut CT Scan, met with an Otolaryngologist and a Neurologist.  We now know that I have this rare neuralgia condition.  I am just now trying to figure out my plan and ways of dealing with this, so I am researching as much as I can. I have only had my condition for less than two weeks since it came on suddenly on Oct 27th.  I thought I had a tumor or aneurism because the pain was so severe and it came in waves.  I know surgery is an option and I will consider this if my pain continues at the severity I experienced when it first came on.  For now my pain has slowed to a dull ache in the right side of my throat, ear area, and upper head with sporadic shooting pains every once in a while.  I have been prescribed Nortriptyline which I am to take daily.  I am concerned about the negative side effects with any medication as there is dizziness, and they make you really tired among many other things.  My life is altered and now I need to learn all I can on how to deal with this.