@Deggui - Pain in the retromolar area could be from your trigeminal or glossopharyngeal nerves as they both function in that part of the head. I don’t recall anyone specifically mentioning pain in that part of the mouth but since Trigeminal Neuralgia is very common w/ ES, it makes sense it could also affect that area. The Glossopharyngeal nerve innervates the part of the throat where the tonsils are so it could also be a culprit in causing your pain in that area.
We have many, many members who’ve had great results from ES surgery when they’ve seen an experienced ES surgeon, however, they often don’t come back to report their success because they’re out living busy lives again.
The most important aspects of surgery that provide good results are having the styloid cut back as close to the skull base as possible & having the cut tip smoothed off so no sharp edges are left to irritate nerves & vascular tissues. Also, if the stylohyoid ligaments are calcified separately from the styloids, getting those removed, too, is important. We have a list of questions we recommend asking any doctor you consult w/ regarding ES surgery to help you get a feel for how experienced the surgeon is & what his/her surgical approach is like.
I’ve had 3 ES surgeries. The first two almost completely alleviated my nerve pain symptoms & the last one was for IJV decompression (compression was discovered 6 yrs after my second surgery). I can honestly say that my surgeries gave me my life back.
I don’t have pain, I just have a strange sensation that I’ll try to explain. It feels like from my retromolar area to the tonsillar region, my muscles are either inflamed or not functioning properly. It feels like a tight band, and when I swallow, it feels as if the right side isn’t working correctly. Has anyone else experienced this sensation? Something curious I noticed is that when I inserted my fingers, I was able to feel the tip of the styloid process on the left side, but I couldn’t feel it on the right side, where it’s longer and where I have the symptoms.
I don’t think anyone has noted the specific symptom you’re describing, however, being able to feel your styloid in your throat isn’t too uncommon. Whether or not they can be felt there depends on the angle they’re growing, & to some degree how thick they are. My doctor felt both of mine deep in my throat, but I never tried because I could feel my left one under my jaw & my right one under my right ear from the outside so that was good enough for me.
How did it feel below your ear? I feel like there’s two lumps between the mandibular angle and the sternocleidomastoid. I can only feel it on the right side, and it’s not a lymph node.
The one under my ear I could feel in the soft area just behind my earlobe & above the mandibular angle like the location you’re describing, & it just felt hard. It was also tender when I pushed on it. The one under my jaw on the left was also hard but felt like it had “ribs” ie it wasn’t smooth.
I feel the same as you describe, except that on the right side I feel two lumps about a centimeter apart from each other, extending down toward the jaw. The first lump is exactly in the spot you described, just below the earlobe.
We’ve not had many people with this, but very occasionally the stylo-mandibular ligament can get calcified in the same way that the stylo-hyoid ligament, it’s more unusual, but might be worth looking at some pictures of the anatomy to see if that correlates with where you feel this sensation?
@Isaiah_40_31@Jules just an update on Ben.. Not sure if you should keep Dr. pride on the list. I guess it can’t hurt to maybe see how another member might have experience with him. As far as Dr. Welch, we couldn’t see him either because he doesn’t do virtual appointments and they wanted us to come to Texas, which is not possible just for an appointment without having any diagnosis, which was what I was trying to receive.
On a good note we finally heard back from Dr. Fargen. He looked at his scans and the recordings of the non seizure episodes. He wants to help Ben and agreed to just do an ultra sound instead of the other extensive tests that Ben won’t be able to tolerate. We see him on Dec 30 and will discuss the details of surgery which hopefully won’t be too far into 2026.
We went from no diagnosis to surgery with Dr. Fargen. I feel really good about his experience with eagles and know he wouldn’t be talking about surgery for Ben if he didn’t think it was necessary.
Nervous and excited at the same time. There are so many details to prepare but I know God will get us through this.
@KarenG - I’m really glad that Dr. Fargen got back to you & is interested in helping Ben! That’s AWESOME news!! It would be great if Dr. Fargen would schedule Ben’s surgery to happen while you’re already in SC for the consult appt. as being able to do the consult & immediately follow up w/ surgery would be less traumatic for Ben than traveling there twice. Dr. Nakaji & Dr. Hackman have both started doing that sort of set up for patients who come from out of state. Might be worth calling Dr. Fargen’s office to see if something like that could be worked out since Ben is a special case.
The only caution I will give you about Dr. Fargen is that he does recommend putting in stents sometimes. If that option is offered for Ben, do not accept it until you’re very certain that the cause of any vascular compression he has, has been fully addressed, & there is nothing left causing occlusion of the vein/artery to be stented. Stenting a vein that still has compression points can lead to stent failure & worse pain & symptoms for the patient.
I will pray for him to have an excellent outcome from his surgery & for God to put everything in place to make this as easy on him as possible.
Brilliant that you’ve heard back from Dr Fargen at last! Good that hopefully the testing will be bearable for Ben, and I hope that surgery details can be worked out while you’re there. Will keep praying that God helps you on your journey
@Isaiah_40_31 hmmm that sounds scary. What would be the reason he would want to put a stent in if the compression was relieved from removing the styloids? i am praying Ben won’t need a stent. Also doesn’t Dr. Fargen shave the C1? I don’t think I want that done either however I don’t know much about the process.
I did ask the nurse about doing the surgery the next day after the appt but she said they always do the out of town appts on a Tuesday and the surgery the same week on a Friday or a later time but always on a Friday. That would not be very easy for us because we would either need to drive 7.5 hrs back home or stay the week. Either way would be challenging. I also asked if he would discuss everything over the phone and he doesn’t do that either. The nurse is supposed to call me again so I can get more details about everything. Thank you for your prayers!
@KarenG - We’ve only had a couple of members who’ve had ES surgery w/ Dr. Fargen & neither one had vascular ES surgery, so I don’t know if he shaves C1 or not.
His reason for putting in a stent would be if the IJV didn’t stay open after decompression. In a few cases that happens. Another scenario & my greater concern, not knowing anything about Dr. Fargen’s surgical strategy for vES, is that if C1 is the major reason for Ben’s IJV compression, & Dr. Fargen only shortens the styloid, the compression can remain. Placing a stent might then be suggested. It would be a BAD IDEA in that situation to have a stent placed while compression by C1 still exists.
I’m not trying to scare you but help you think through the worst case scenario since Ben’s situation is more complicated than many due to his autism. It’s really important to make a list of your questions to ask at the initial consult & among them should be how Dr. Fargen handles IJV decompression i.e. Does he cut the styloid back above C1 so it can no longer contribute to compression, in any way? If C1 is the dominant compressor, does he shave it or move the IJV away from it?
In case we you haven’t seen this discussion @Jules wrote about ES surgery, the link is below. Toward the end of the discussion there is a list of questions we recommend asking a doctor during an initial consult.
I’m so sorry it doesn’t sound like it will work out for you to stay in SC for the days after the consult so Ben could have surgery while you’re there. Frustrating for you to have to travel twice with him. I’ll pray for the travel aspect of your appointment to go smoothly & for Ben to be as calm as possible w/ the changes he’ll experience out of his normal routine. I know those can really throw a person in his situation. I’ve put Ben’s consult date on my calendar so I can pray especially around that time.
@Deggui Hi Sebastian! Perhaps you already have this information but just in case - if you won’t be able to find anything in Argentina, as far I know there is strong neurootology group in San Paolo led by Dr Ricardo Bento - they much probably should do that (they perform even more complex surgeries on a skull base) or at least refer to someone in South America.
@Isaiah_40_31 I’m a bit overwhelmed. I really don’t know what to do at this point. We tried to do a 72 hour EEG to make sure he isn’t having epileptic seizures and he did really well allowing the tech to put on the electrodes but within seconds he pulled at the wires they all disconnected. Can you tell by looking at his CT scan if there is C1 IJV compression?
@KarenG - I’m so, so sorry for how difficult this journey is for you & Ben. I wish there was a way to make it easier. I’m guessing Dr. Fargen is the only doctor you’ve seen for a consult & would suggest since he’s willing to do Ben’s surgery, you get him scheduled w/ Dr. Fargen. I know traveling all over the country for additional opinions is out of the question so that would be the path of least resistance.
@TML looked at the imaging you sent previously & said he sees IJV compression between Ben’s styloid & C1 bilaterally in this discussion:
@KarenGyou’ve found it! Definitely compression between styloids and C1. So definitely will want to pursue surgery with a surgeon who is experienced with cutting the styloids above the level of C1!
Compression appears more severe on his right side (left side of image where you circled)
Maybe the EEG isn’t necessary unless it’s critical to know whether Ben’s seizures are epileptic vs non-epileptic for anesthesia purposes.
