Hi all – so I’m getting to the point where I have to make a decision about surgery. I’m switching insurance, so I need to either do it soon (with the crappy insurance that covers it, but takes forever to pay and I’m always scared I’m going to get stuck with the bill), or switch and then wait. If I want to do it at all. Honestly, compared to what some of you have gone thru, I don’t feel like mine is that bad. Dr. Hepworth has never told me that my bone is elongated, but I’m going to ask him. My right stylomandibular ligament is definitely calcified (Ernest Syndrome), and that causes right ear pain. On the left, I don’t know exactly what the ligament is doing, but I had dizziness last spring that he said was from dynamic occlusion to the jugular. And I sometimes have a weird cold sensation around and behind my eye, and some numbness near my jaw. But honestly, it has improved a lot since onset nearly 3 years ago. My pain level is at one a good part of the time, and never really get worse than a three or so. Have never felt the need to take pain meds, and don’t even need NSAIDS any more. Of course I would love for it to ALL go away. But just not convinced that it’s worth the risks of surgery when my symptoms really aren’t that bad. Would love to hear how bad your symptoms were when you opted for surgery. Did anyone else have surgery with relatively mild (ie didn’t need pain meds) symptoms?
Hi Bopper,
Because ES surgery is major surgery, we usually recommend waiting to have surgery until your symptoms are impacting your life significantly. I’m sure there are members who had surgery w/ lesser symptoms but the majority of us had life altering symptoms before we chose surgery. As you noted some of our members are extremely impacted i.e. become non-functional, whereas others just have to limit some activities.
That said, once a ligament starts to calcify, there is a good likelihood that process will continue, & your symptoms will gradually get worse, thus a case could be made for removing the “problem” sooner than later. Knowing if your styloids are elongated &/or stylohyoid ligaments show signs of calcification is important info to factor in to your decision about surgery.
That has been my thought as well. Ironically, when it first started, symptoms were much worse and definitely impacting my life far more than they are now. I have no idea why it would get better instead of worse, except perhaps that my diet has become less inflammatory. I’m definitely going to my next Hepworth appointment with a list of questions!
It sounds like you’re thinking things through thoroughly, Bopper. You get an A+ for that! I’m glad your symptoms are reduced. If I were you, I’d wait on surgery until something changes in the wrong direction. Diet can make a huge difference in so many ways. It’s often the best place to start when treating a health challenge.
Thanks! Of course, ever since I wrote this, my ear has been hurting steadily. And I keep thinking how nice it would be to get rid of it. But it is hardly debilitating. I don’t take anything for it. Although I am planning to drink a beer right now. The cold feels good.
And probably dictated.
Please excuse typos, misspellings and just plain weird, inappropriate words.
I like to think I am relatively eloquent.
But Siri is often a drunken, blathering idiot.
It is a tricky decision! I left surgery for over a year- I had nerve pain in my jaw, ear, teeth, & pain in my neck if it was turned. I felt it was controlled enough to manage & the risks of surgery outweighed the benefits. But the I started to get vascular symptoms, & felt really rough- both jugulars were being compressed. So the decision was easier, as I was feeling really rough.
I think that as well as the risks of surgery, every surgery can leave you with little niggles- maybe tightness around a scar, or pain even, not just ES but other surgeries, & first bite syndrome after surgery for ES. Also you could still have a little pain left if the styloids have permanently damaged nerves- I still have a bit but controlled by medication. So you could end up with as many niggles as you went in with; I think that you have to balance how bad your symptoms are with those risks, but also how easy it is to see an experienced doctor & your insurance…
Bopper,
As with any surgery, they are always risks. Having had about 20 in my lifetime, I’m not too scared by it if I am in the hands of a good surgeon and at a medical facility that has top notch anesthesiologists and nursing care. I think I had problems for many years (maybe decades). I cant take NSAIDS so I cant manage the inflammation like you have been able to do. Steroids helped me when my first major pain flair creeped up in 2015. I had about 1 flair per year and then it switched to the other side. I had all kinds of PT, injections,etc for 1.5 years. In Dec 2019 I had the worst and it was debilitating and extreme. Then I got diagnosis of ES. Steroids calmed it down till surgery. Because I let this go so long, I believe I developed chronic pain problems, neck and muscle muscle tightness, TMJ, and holding my posture in an unhealthy way. After first surgery (April 2020), because all these areas had been holding so much tension and extreme tightness, it flaired it up especially in the jaw. I have had to work hard to get these areas more normal via botox, nerve blocks, acupunture,etc.
I am now scheduled in dec to do the other side. The other side is somewhat calm and I debated about doing it now. This side has given me problems in the past though and started on this side 5 years ago. I know it will rear its ugly head and I do have some mild symptoms at times. Ive come to the decision that if I do this surgery while I’m not in a major flair, i will have less troubles after surgery. I’m also getting older and the older you are, the harder it is to recover and higher the risk of anesthesia. Ive dealt with so much pain for so long, I want to even out the neck and try to rehab it back so I don’t have all this chronic muscle tension, neck instability and posture problems. I dont see that happning until I get the other styloid out and the lengthy calcifications.
I tell you this story to caution you about too long of delay and what can happen if you put it off. In my case, it took me years to get the diagnosis. You are lucky you have figured out the NSAIDS help reduce the symptoms. Most of us agree the calcifications are from an inflammatory process. You may be able to keep this at bay for awhile. Compared to other surgeries I had, this one (external) was a walk in the park. I was out walking on day two after surgery and was down to one pain pill by day 3.
Thank you so much for this information. You have been through a LOT!!! I’m thankful mine hasn’t gotten that bad. But I do have a lifetime of tight neck and shoulders, 15 years of TMJ, tinnitus, etc. Plus I’m 57 years old, so not getting any younger. Gave me a lot to think about!!!