Hi! So I’m 18 and after having jaw pain for over two years have recently been diagnosed with ES - elongated styloid process and calcification of the stylohyoid ligament. Within the past few weeks the pain has been getting worse and it’s now encroaching on unbearable. Pain on both sides in the jaw, head and ears and sometimes teeth. I’m studying in university and finding it increasingly had to concentrate on the work I need to do, I often feel like maybe I’m overreacting? But it just doesn’t seem to quit it! I’ve been taking diclofenac tablets for two years then recently added robaxin but that wasn’t helping so my Doctor changed it to dolsulepin last week but the tablet seems to be making the pain worse?? Anyone experienced that?
I don’t know what else to do to help the pain/problem??
Any advice or words of support would be really appreciated as I feel very alone with this and lost as to what’s next
If you can have a look in the Newbies section, there’s info there about medications. Sometimes the styloids can press on nerves, causing nerve pain, and there’s medications which can help with that (like Lyrica, Notrtriptyline, Amitriptyline, Gabapentin). They’re either antidepressants or anticonvulsants, but they’ve been found to work well in lower doses with nerve pains. Otherwise one of our members (Snappleofdiscord) found that lidocaine patches stuck over the painful areas did help a bit.
Ice packs help quite a few members, but I found heat was better for me, so cuddling a hot water bottle eased things a little. And sleeping more upright does seem to help at night too, either with a wedge pillow or a V shaped pillow.
Some members have found lidocaine injections into the area help- these have to be done by an experienced ENT doc and often under ultrasound, and there is a limit as to how often they can be done. Some members have found help with a chiropractor, but they would have to really understand ES as any manipulation could fracture the styloid and make things worse. Unfortunately, the only real long term solution is surgery, but there’s lots of info about that on here. If you think that you might want to go down that route, then there’s a list of doctors familiar with ES in the Doctor Info section, and hopefully there’ll be one not too far from you who you can ask to be referred to.
Hope this helps, and sorry that you’re having to go through this at your age…
The pain meds can sometimes take a little while to build up enough to help, but if one doesn’t work, there are several alternatives which can be tried.
Thank you so much Jules! I’ll have a look at that section now thanks. Yea athrotec (diclofenac) has helped the past few years but doesn’t seem to be having an effect recently, and being on it this long worries me as it can cause holes in the stomach if taken too long, but at the moment it’s the only thing that has a patch on the pain since the antidepressants or muscle relaxants haven’t done much yet. My doctor hasn’t mentioned the injections, so I’ll bring that up with him and hopefully that might provide some relief. Yea he mentioned surgery but said it’s not gaurenteed to help so I don’t know where’s he’s going in regards my treatment, I’ll have a look through the doctors list thanks and yea, I’ve currently got a hot water bottle with me haha, atleast the weathers getting cooler because the hot water bottle in the summer wasn’t ideal!!
Charlie, the doctor on the list in Spain has experience doing the Eagles surgery and is supposed to be good. It’s best if you can go to a doctor with experience doing the surgery if at all possible.
and yea, I’ve currently got a hot water bottle with me haha, atleast the weathers getting cooler because the hot water bottle in the summer wasn’t ideal!!