Hi Horizon,
I’m not sure what would be ‘many years’ in your opinion. But for me I had gone several years before opting to have the surgery to remove my left styloid in 2008. Here I am, just recently found this group and I came upon it when I was searching for information on ES because I recognize the symptoms I have been experiencing are indicative of my need to consider having the surgery done on my right side. So I can’t recall the length of time I lived with inconsistent pain before having the left side done, but it’s been 12 yrs before considering the surgery on the right side. I’m considering it because I have been living with a low level of pain consistently ~ around a 3 on the scale of 1-10 ~ however I also have TMJ and I know all to well that my symptoms overlap between the ES & the TMJ. When I have a sharp, stabbing pain in my neck while speaking, or when I turn my head I know to blame the ES. When I have the pain in my face and along my jaw and into my neck I’m not always sure which condition to blame.
Since the stabbing neck pain has begun showing up a bit more frequently I am being proactive and have sought out my ENT, (this past Dec. and was informed of his pending retirement) and made an appointment with the ENT my previous dr. felt would be the right ENT for me to see regarding my ES.
I believe that as long as you can tolerate the symptoms and they aren’t keeping you from enjoying life then put it off as long as you can. That has been my way of handling this and when I see this new to me ENT on Wed. (Sept. 2) I expect he will send me for a CT scan so he will know what we are looking at and then we will discuss if surgery is something I should do right away or if I can successfully put it off a bit longer.
Good luck and I hope you do what is best for you with confidence in your decision.
Great advice, let us know how you get on with your ENT appt!
So my appointment went well. Dr. Steven Parnes (Albany Medical ENT) we discussed my going for a CT scan and then scheduling surgery. He did state he would be doing this surgery intra orally as he felt it would be the best option for me but we would discuss this further after he sees the scans.
Sounds like a productive appointment, ESx2. So glad you have a plan now. Once you’ve got your CT scan results, the most important information you need from Dr. Parnes is how much of the styloid he intends to remove & will he remove the stylohyoid ligament if it has calcification on it. Just “snipping the tip” off the styloid will not give you a good result. He will need to remove the styloid(s) as close to the skull base as possible, smooth the cut edge of any styloid left behind, & remove the s-h ligament(s) if it has any calcification on it. It is possible to do these two procedures intraorally, but that requires several incisions in the throat. If he will only shorten the styloid a little & not deal w/ the s-h ligament, it would be wise to get a second opinion from a more experienced ES surgeon.
Thank you. I had asked him if the scans he orders will also check the left side to see if there was any recurrence of the calcification/ regrowth. And he said yes. So we will go from there once the I have the scans & results. He told me he has done many of these surgeries, even though ES is rare. He said it seemed like many have been referred to him.
(Romans 12:2)
I personally don’t think that ES is as rare as the figures stated- I think it’s just misdiagnosed!
Well the good part is that you have discovered and been diagnosed at a young age and you know what you are dealing with now. I have struggled with neck and ear pain for probably my 20’s and I’m now 64. My symptoms went into high gear in 2015 at about age 59. Ive had some bad pain flairs under stress in my 40’s that got bad also. Some data shows that this seems to worsen in our 50’s & 60’s. It took me 5 years to get the ES diagnosis and it was a long painful road.
In the right surgeons hands, you wont have long term nerve issues or mouth drooping as they monitor nerves during surgery.
I had one side done in April which was my worst and most painful side. I had post op pain and TMJ flairs after surgery. My massetter/temporalis muscles were locked up before surgery and worsened after and Im still having some issues but they are better. Looking back, I think it would have been best to try and calm down and loosen up these muscles prior to surgery. I did have steriod injections in the neck which was helpful and having massage but it was so inflammed and locked up from the pain, even massage was only partially effective. I was already getting body work, dry needling,etc and all kinds of PT and OT for several years before it just went out of control. I am going to test a theory in a few months to see if I am correct…at least in my case. Ive have been debating about doing other side as it really isnt given me much problems so why do it if it doesnt hurt? Well every once in awhile it reminds me its still there by a jolting pain up my neck and to my ear. My 1st flair was on this side too and it moved to other side. Im going to do the other side and not put off primarily because of my age as the older I get the more risk under anesthesia and lower immune responses.
I am hoping like hell that because this side is somewhat calm, that post op, i will have less pain problems and lingering jaw/ear pain. I think there may be some value in doing the surgery when you are not in full blown pain or symptom flairs. Ill let you know if my theory is correct. Will probably do a december surgery so I can take xmas off.
I wonder about this every day. It just seems misdiagnosed.
Maybe because I am part of this group and follow a group on facebook but it seems much more common than I originally thought. I am glad for this…the more information the better. The more voices the better.
I was reading your post and I wanted to say this. I was talking to a radiologist this morning since I work at a hospital and he walked by. He told me he sees ES more than you would think. I think the rare part is that few people KNOW they have it in there? I could be wrong. I think knowing it is rare ? What do you think??
YES! the rare part is KNOWING you have it I think.
I think so…it makes you wonder if they only comment when the scan requests it be evaluated for ES how many poor people are walking about with symptoms but no-one’s joined the dots!