Surgery recommended for Glossopharyngeal Neuralgia

[heartwings378]

I am a 51 year old woman suffering from vagal glossopharyngeaal neuralgia  (its much like Trigeminal Neuralgia but much less common.  The pain comes from irritation of the 9th and 10th cranial nerves)  My pain has become nearly constant and spikes whenever I am talking, eating, riding in a car. Neurotin, Tegratal, and Lyrica do not help.  I have seen four neurosurgeons.   The concensus seems to be that I need skull base surgery to cut the 9th nerve and a couple strands of the 10th.   Since this condition is so rare, there are not many neurosurgeons out there who have a lot of experience with the procedure.  I am willing and able to travel anywhere in the US to have this done, and would appreciate recommendation on neurosurgeons who are highly skilled and experienced in performing surgeries to treat trigeminal and glossopharyngeal neuralgia.  Thanks for your help!

[cmropen]

Columbia Neurosurgery, Pitt Neurosurgery, UPMC all seem to have surgeons who specialize in glossopharyngeal neuralgia. The TNA Association may also be able to point you in the right direction.

[Madsmarty]

I was told by doctor that there is only one doctor he trusts with doing any kind of procedure/ surgery for GPN. His name is Dr. Alain C. De Lotbiniere, MD, located in West Harrison NY. Good luck

[ed48700]

My swallow specialist believes that I also have this. As well as occipital , but I also have a tissue shortage from scar tissue, I cant even move my neck.

Look up Peter Janetta-Pittsburgh
Possibly Penn state.also.

[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.  If I hear of any great surgeons for this procedure I will let you know.

[LeeNylund]

Lisa what did you end up doing?  I was just diagnosed and have been dealing with it for 2 months now.

[supekid999]

Wow, Ive had it for 4 mos.. Meeting a surgeon next week for an exam., Oh, my MRI of course, was all clear.