I had surgery on my right side May 2021 because I was experiencing what I now know to be GPN. Unfortunately for me the surgery wasn’t successful.
So now I’m back because I’m having horrible pain on the left side. It’s similar but different to what I experienced before. This side is more painful and I’m feeling it from my ear to my chin. I got a new CT scan a few days ago in the ER because my entire left jaw and chin was tingling and numb. Of course even after explaining about my recent ES surgery they didn’t comment on styloids. I’ll be requesting a copy and playing doctor again.
My question for the group is if anyone who had bilateral symptoms can tell me if each side presented differently? It stands to reason due to length, angle etc. I’m just so lost because I don’t wanna go through this again if it doesn’t work but I don’t know what else to do.
I have pain in my throat, back of tongue, shooting pain in ear and jaw at times, dull pain under mandibular angle when turning my head to the left, the pain in my throat is constant with intermittent tingling, burning and numbness in my neck. What’s the chance I have bilateral atypical GPN only and it’s not ES related? Just seems like that combo has to be 100x more rare than ES.
I’m so sorry you’ve had to come back because of pain, but glad you did so we can support you. I had bilateral ES w/ very different symptoms between my two sides. My left side caused a lot of neck, throat, ear, eye, shoulder, & tongue pain. My right side caused blood pressure dips, hyperventilation, heart palpitations/tachycardia, weird pain in the roof of my mouth. I couldn’t really differentiate the right sided symptoms from the left until I had my right styloid removed, & the listed symptoms resolved over a few months. In the meantime, my left side decided to ramp up symptoms to a point that I was barely functional some days. It made a big difference for me to have both removed. I did have GPN issues after my first surgery, but they came in the form of tongue paralysis (only half of it) which thankfully resolved about 9 mos post op.
@Isaiah_40_31 thank you for your continued support. I guess I’m just frustrated to be going through this charade again. To make matters more difficult I have different insurance now so I can’t just call Dr Samji. I also am scared it’s not eagles. I just don’t know what else it could be. I’m tired of it.
So sorry that you’re having more pain, that’s so rough…I had numbness & tingling in my jaw & cheek area as well as pain on my worst side, it was worsening before surgery. After surgery the numbness & tingling went, & I had less pain (although still there a bit, it’s never gone completely) So it sounds like the facial never &/ or the trigeminal nerve could be being affected as well as possibly the glossopharyngeal nerve. Your pain turning your head does sound like it could be ES too- unfortunately the only way to see is through surgery, but sometimes the nerves can be damaged & don’t always heal totally. Maybe that’s what happened with the side you’ve had surgery on? Although we do see people who’ve had nerves heal & pain improve even up to a year.
As ES is a known cause of GPN, & if you have/ had bilateral elongated styloids, then I think you were definitely right to go for surgery, & to consider surgery on the other side too. But I totally understand that the idea of going through it all again is hard when the first side hasn’t been as successful as hoped. Sending you a hug
Dr. Cognetti is closer to you & has done many successful ES surgeries. If he is on your new insurance, it would be well worth your time to consult with him. He also does video consults so you wouldn’t have to travel for an initial appt w/ him.
I also understand your concerns. We have members (including me) who experienced crossover symptoms where the remaining styloid caused problems on both sides of the neck/face after the first styloid was removed. Having the second one out made a big difference. As Jules said, your symptoms definitely sound related to ES, though you won’t know if that’s the cause for sure until the second one is removed if you decide to go that route. I agree with both of you that it’s a difficult decision to make about surgery when the first time didn’t provide the anticipated results.
We are here to be your sounding board as you consider your options. There is a new section on our home page called Patient Self Advocacy. I don’t know if there’s info there that might be helpful for you as you consider your next steps, but it might be worth reading through.
Sending a hug & praying for you.
Hi Jules. I appreciate your response. I do wonder if I just didn’t get help fast enough the first time. For the past few months I’ve felt the same sensation I have on the right on my left side but in the past 2 weeks it’s progressed to tingling and stuff. At it’s worst it feels like my neck is just missing, like because I can’t feel it? Idk it’s odd. But the worst is the shooting pain.
I had a CT of my brain and my neck and my chest so I’m fairly confident that they ruled out a lot of other things. I have my original scan from 2020 so my plan is to get copies of the ones they just did and compare them. If I can see substantial growth on the left it would push me towards surgery.
It would be a miracle from God if removing the left side took care of the pain on the right as well. One can hope right?
For now I’ll be needing to check my scans. I’m anxious to see the side I was operated on also. I never did get scanned after so I’m curious what it looks like. They asked me about a clip they saw? I don’t know what that means or why a clip would be in my head.
I can’t see any specialists without a referral so it’s possible if my primary is willing, that I could see one of them. Going to California was a major expense for me. I felt very comfortable with Dr Samji so it was worth it, but something closer to home for round 2 sounds good. Where is Dr Cognetti?
I did see the new posts about advocating. It’s invaluable information!
Dr. Cognetti is in Philadelphia. Still a bit of a hike but not as far as California.
I wish I could guarantee the end of your GPN by getting your other styloid removed. If nothing else, maybe it will help reduce those symptoms. Sadly, sometimes nerves do get permanently damaged from ES. Hopefully that’s not true in your case.
The clip that is showing in the scan is a surgical clip in your neck. Most of us who’ve had ES surgery have them. They’re routinely used on a minor blood vessel that gets cut during surgery to stop blood flow from it. They are made of titanium & are permanent but innocuous. They do show up in CT scans. I wish doctors would mention that these are used as I was alarmed to find that I have one on each side from my ES surgeries until I understood their purpose.
Okay so there is a piece of metal in my neck? I’m assuming it will always be there and doesn’t move out of place? I do wish I knew that lol.
Picking up my recent scans later today so I’ll post images when I get to it. I’m honestly hoping it looks longer on the left than it did in 2020 because if not then I have some other mystery illness.
The clip will look like a thin line that runs perpendicular or slightly diagonal across a vessel (which probably won’t be visible) not like a chunk of metal. It’s pretty small.
Even if your left styloid doesn’t look longer, it can still be causing symptoms. You’ve had your anatomy on the right altered which can allow readjusting/shifting of the other structures in your neck to accommodate the change. That can put the left styloid into greater contact w/ nerves, etc. on that side which can cause symptoms to get worse.
@Isaiah_40_31 what?! They leave metal clips in your neck?? Shouldn’t they inform you of this before surgery? It’s wrong on their part not to inform a person of this.
@Jules did dr axon leave clips in your neck??
@Dontgiveup - I agree that we should be informed, but it seems to be pretty standard procedure for neck surgeries from what I’ve heard.
The other shocker I had was that some surgeons dislocate the lower jaw in order to access the skull base more effectively. I do have some muscle/nerve issues in my mastoid area from my first surgery that may have been caused by that. They aren’t a huge problem, but knowing about jaw dislocation ahead would have explained to me why I ended up w/ that. I guess we learn as we go. More questions to ask Mr. Axon before surgery.
It’s definitely frustrating to not be told up front. But had I been informed it would not have changed my mind. I think we have to expect that some things will happen that aren’t anticipated because you don’t know what your working with until you get in there. Some others have been cut open and not operated on even! I will say I’m nervous to see my operated side. I was told all but 1 cm or so was removed and if I see that isn’t the case I’ll be upset.
@Isaiah_40_31 that is awful… I don’t understand how that sort of stuff isn’t discussed prior surgery. I’m definitely going to be asking dr axon about those things.
Are there anymore sort of things I should know of or should ask dr axon about?
@one_day I really hope they did your surgery correctly and have not lied to you about how much was left behind.
Thanks. Yeah I’ve read too many bad stories about that kind of stuff. I insisted on seeing my styloid afterwards. Hopefully it was mine and not one they just use to show off lol. They also removed a lymph node which was in the dish too. I have pictures.
Definitely ask about risks of the procedure. It’s scary but I think you should ask because it’s helpful to be aware. I consider myself very lucky as the only problem I have is that it didn’t help me at all. It could be worse. I was told 90% success rate. Maybe it’s just my luck. I would exhaust all other causes of your pain prior to surgery though. It could be “a million other things” as my new doctor stated.
That’s one chunky styloid, one_day! Honestly, I’m surprised you didn’t get better results. I’ve forgotten if you had some symptoms that did resolve. I asked to see mine, too & got it in the same type of jar. I was surprised how short mine looked compared to how much pain it caused!! It was in 2 pieces though so maybe that made it look shorter.
I’ve heard of others having a lymph node removed. Not sure if it’s because it was in the way or if it was suspect.
He told me the node was just simply in the way so they took it out. I have another one I wish he took instead lol it’s huge! I used to get stroke like feelings on my right side of my face very frequently like multiple times a week and I have had it 3 times since the surgery. So that has improved I guess. The GPN symptoms have not. I thought maybe it was getting better but I think I’m just used to it now.
I should reread my old posts. Maybe I would find that I’m doing better now.
Just spoke to dr axon and he said that he doesn’t leave clip in your neck during surgery and doesn’t have to manipulate/dislocate your jaw. Good news.