Surgery is a “cure” for ES if it is done by an experienced surgeon who removes the styloid(s) back to the skull base & the stylohyoid ligament(s) if at all calcified. That said, damage caused to the nerves by the styloid(s) &/or calcified stylohyoid ligament(s) & nerve irritation during surgery can cause symptoms to linger. for some time post op. Symptoms usually decrease substantially over 6-12 months after surgery & often to the point where no medication is required. Some people get total pain relief whereas others do not & need some level of nerve pain medication to stay comfortable.
Situations such as TheDude has experienced occur most often when the styloid(s) are only shortened not fully removed &/or calcified stylohyoid ligaments are left in place.
I had my surgeries in 2014 & 2015 & still have some remnant of First Bite Syndrome & occasional nerve twinges in my face & neck, but for me, these are tolerable & don’t affect my life. The positive is that they remind me of how far I’ve come since my days prior to ES surgery.
My struggle is that many of my days now are mostly pain free. I do get out and play tennis a lot and workout. I have some bad days, but I assume the gabapentin is helping a bit, plus the clonazapem. I just don’t want the surgery itself to cause other nerve issues that aren’t there now. The PA at the doctors office made sure I knew it wasn’t a total cure and it may not even be my problem, it’s a 50/50 chance… And do I want to take that chance or continue to explore trying or changing the nerve meds to see if I can get rid of it mostly.
I can tolerate all the face numbness (trigeminal neuralgia) and some pain near the implant location. It’s just when the feeling in the throat is there, it feels like someone has their hands around your neck…
Great that you can still play tennis! Surgery is a personal decision, most people get to the point where pain & other symptoms outweigh any risks of surgery & they opt to get the styloids out. Maybe you’re not quite a that place yet? But on the other hand, if you’re getting nerve pain from the styloids, then this would suggest that they’re compressing or rubbing on the nerve & irritating it, & if you leave surgery for a while then this damage can continue being done…unfortunately no doctor can say for certain if surgery can fix all the symptoms, the only way you’ll find out is if you have it!
Some members have had steroid / lidocaine injections into the tonsillar area which can sometimes help, although it’s not a cure. Sometimes people have this while they think about whether to have surgery, I’m not sure if Dr DeLacure does this.
deezy,
Often TMJ and trigeminal nerve issues, tight neck are paired with Eagles and it is difficult to distinguish what causes what. I have all of the above and for years, even decades. TMJ specialist I saw recently suggested a theory of tightness of neck clamping down on elongated styloid and calcifications caused the pain. That if you take care of that tightness, the pain will subside. Many people do have calcifications,etc and have no pain or problems? Although this may be true with some, I personally went thru years of all kinds of modalities and injections to tamp down this neck tension with little success.
My pain worsened over time (5 years) and got to a point I could not handle pain anymore and finally got the ES diagnosis. I chose to do ES surgeries first. I’m now moving on to the trigeminal nerve issues. Whatever nerve pain I still have, at least I know it isnt from the styloids. My docs agree it is a process of elimination and everyone chooses a different path.
I have recently added a TMJ specialist and have a neurologist who I see quarterly for a combination of botox, steroids and nerve blocks. In between, I see a chiropractor who has massage and acupuncturist at his practice.
I am adding in an OT (occupational therapist) I have used in the past who specializes more in structural / postural integration. I was seeing a pain doctor who referred me to the neurologist who does more specialized injections into neck.