I am now 9 months post-op from left transcerivical styloidecteomy at the Mayo Clinic. Many of my symptoms have resolved or improved. However, my glossopharyngeal nerve has gone back to its baseline pain before I got the surgery and hasn’t improved or changed at all for the past 7 months now. I was seeing a neurologist outside of Mayo who was trying to help me with some medication management, but so far I have had no luck with that. We tried Amitryptiline, Gabapentin, Oxcarbazepine, and I’m now on Pregabalin. We still have quite a bit of room to increase my Pregabalin dose, so I guess we can still do that.
I saw my Mayo surgeon for a follow-up and he ordered higher-resolution imaging of both my neck and brain MRI. They ended up seeing something on the neck MRI so they ordered the 7-Tesla brain MRI, which was an experience all its own. What they found out is that my PICA is making “contact without deviation” on both the right and left sides of my glossopharyngeal nerve at the root entry zone. I was immediately referred to a neurosurgeon at Mayo for consult.
Feeling quite scared. If this is what is continuing to cause my ongoing GPN (and it likely is), and we can’t manage it with medication…….then that means brain surgery. It would be the MVD surgery, where they would place a cushion in between the PICA and the GP nerve. But I might even need to have it twice because it’s making contact on both sides…. Definitely having a lot of anxiety about this step. I may also get a second opinion at the Barrow Neurological Institute here in AZ. Not even sure how to tell my loved ones “hey, I might need brain surgery- AND I might need it twice!”
Aw Rainbow, while I don’t have any advice I just wanted to validate you feeling anxious about next steps. I am sorry you have been suffering for so long!
I’m so sorry that after your ES surgery that the pain returned and you may need further surgery, that’s really rough… I’ve not heard of the 7 Tesla MRI, is that the same as a Ciss MRI or a FIESTA MRI? Did your voice improve at all after the surgery?
We have unfortunately had a couple of members I think who’ve had MVD surgery after ES surgery, & a couple I think who’ve had MVD surgery first thinking this was causing their GPN but it was actually ES… so you’re not alone.
Carbamazepine can sometimes help too with nerve pain, certainly with TN so I don’t know if that would help GPN, although it can have side effects, hopefully the Pregablin will help…
Ben’s Friends do have a facial pain group, I don’t know if that would be helpful for you? Here’s a link: Finding support for facial pain? Connect with people like you. - Living with Facial Pain
Thinking of you though, not nice to have to face it, sending you a hug
@Rainbow - I also hadn’t heard of a Tesla 7 MRI & had to look up PICA. I kept getting links to an eating disorder by the same name, but I persevered & found out what you were referring to. For others “not in the know” - PICA stands for posterior-inferior cerebellar artery. I also looked up where it is in the brain wondering how it could be bothering the GPN, but the following picture better helped me understand.
I’m so very sorry that you’re looking at another possible surgery or two. It would be great if you could have your surgery in AZ, but seeing the most experienced doctor you can access for an MVD surgery is most important regardless of location. Please keep us updated.
Thanks for that info- I couldn’t find anything other than the Pica associated with autism, which I was aware of having worked with a family where the boys would munch on all sorts (including my jumper!) They had to have regular blood tests though to check they weren’t being harmed, it was so sad…
Dear @Rainbow Thank you for sharing what has being going on for you. I’m sorry to hear. I have similar issues after having had bilateral styloidectomy 7 months ago. My vagus nerve issues have resolved, and pre syncope, however pharyngeal and facial/trigeminal neuralgia has not. It’s managed with pregabalin, though just enough for me to function. I was interested to hear about the Tesla scan you had; great that you have a medical clinic that is taking your Sx seriously and have determined the probable cause and possible solution. Having worked previously in neurosurgery I wanted to reassure you, that although brain surgery can sound daunting, it is has become quite standardized and routine, and I’m sure the surgeons have much expertise. I’ll be very interested to hear how things go for you. Hopefully the pregabalin gives you some relief.
Have you looked into having a FIESTA or CISS MRI to look at your facial/trigeminal nerves. One of those is possibly the scan @Rainbow had to see what is irritating her GPN.
