Hi, I am suffering from right temple/nose and cheek bone pain as well as glossopharyngal nerve /neck pain. I have been told my right jugular is partially compressed and just had a styloidectomy, early days as to whether resolved pain, but jugular is still compressed. In terms of next steps if no luck, what type of specialism should I ask to be referred to in the UK? Is it Rheumatology? Neurologist, Nuerosurgeon, etc, etc? Any recommendations welcome.
With the jugular involved my instinct is to say a vascular surgeon of some sort, or vascular specialist… but I’m not a medical professional and admittedly don’t know much about arterial/vein compression. What has the person who did your surgery say about it?
Neurologist first to learn your options. The pain for all facial areas mentioned may be from GPN.
Thank you Cairenn, I had a styloidectomy two weeks ago so some of the pain may be due to the extra irritation of the op. Was hoping it would have stopped the pain in my throat, temple, nose and cheek but no luck so far, though it has released my shoulder. The CT scan did show that my jugular was still compressed after the op. Have other suffers found that this has caused GPN pain in the same areas as mine? If so, what treatment has been given other than drugs? Will talk to my GP about a referral to a neurologist.
Thank you Azurelle, seeing him in a few weeks so will ask, just wanted to be prepared
Anti-seizure meds did not work for me. I was to be on 900mg/day and ended up on 2400mg and no relief from pain. Eleven months ago I opted for MVD surgery for GPN and have been pain free after 15yrs of throat seizures.
Hi, Poppy. I have had glossopharyngeal neuralgia for the last 21 years. Carbamazepine was eventually found to help me the most although it would come back every 18 months to 2 years. I always saw a neurologist. I was on the slow release Tetrytol brand of carbamazepine which was giving me bad double vision. Three years ago I saw a new neurologist here in the UK. He put me onto rapid release 200 mg tabs which I worked out to take 1 every four hours so am taking 1200mg a day and touch wood I have been seizure free for 3 years now. If I feel something coming then I up the dosage a bit. I still get double vision a bit everyday. The double vision he said is just as one gets older so the brain can’t cope with the drug. I got this ailment at 45 and am now 66 and have had double vision for about 10 years but I would rather have double vision than the pain. He advised me not to have surgery.