I just had a CT done on Tuesday. They didn’t mention if it had grown back (I forgot to ask), but they were looking for other potential problems. I’ll ask at my appointment today to check on it. I found out at the same time last year that my right side is also elongated at 4.2 cm. It was completely asymptotic at that time, so we chose not to remove it. Over the past few months I’ve started feeling a poking sensation, I think it’s the styloid I still have. It’s irritating, but I’m putting that on the back burner for now due to the severity of pain that’s returned on my left side. My pcp agreed to do trigger point injections into the insertion area of my left stylomandibular ligament today. I’m hoping it goes well. He said we might have to do a few of them over the course of a few weeks/a month. He also said he will refer me to an ENT who can order an MRI next, if the injections do not help. I’ll let you know how things go with the injections!
@Snapple2020
I totally get this-wanting to sever the nerve pain. It’s so awful. I was in such a great place with my mental health after my surgery. I was virtually pain-free in regards to my throat, tongue, face. Until I had an episode of severe pain after yawning and now I’m just filled with fear, depression, and anxiety again. My new pcp is great, but knows very little. I tried talking to my surgeon, but he said he couldn’t help me anymore and told me to see my pcp. I’m not sure if he just gave up because he’s out of ideas/outside his education or needed me to be referred to him again, but it was disheartening to hear that.
I hope that the injections help…
amsrien,
I suggest searching out a tmj specialist ( a doctor not a dentist) or find a neurologist who can evaluate you, has experience doing the injections and possible give you some injections (steroids to calm down?) into jaw joint. I hope the ones PCP gives you helps. I have had lingering pain when I open very far and have been trying to target it. A cone beam tomography (CT) which is a 360 degree scan of mouth and jaw/joint might find something going on in there?
I have had tmj problems for years and the cone beam showed alot of remodeling and osteoarthritis in the joint itself. This along with ES is no fun. It was all highly flaired right before my ES diagnosis. Probably the worst pain to date. Its how I justified getting my PCP to order CT scan. I had steroid injections all over my neck and around ear to calm it down prior to surgery. It took a couple weeks to kick in.
Another person on our list has some issues after surgery and she tried to go back to him for help and yes you are right, it is out of their wheel house to deal with issues that may be outside of the original ES stuff. Im glad your PCP is willing to try and give you injections but I had a pain specialist do mine and when that was only partially helpful, he sent me to a neurologist who went deeper and also used ultrasound/emg to make sure where he was into. The pain guy was kind of a weeny and could only take me so far. It can be very specialized to do injections in these areas. I also had a different pain specialist suggest acupuncture 2 x week for 4 weeks in the jaw area and it actually was helpful. Another person recently suggested low level laser light therapy which helped the inflammation in her joint. Im looking to try that one out and see if it works because you cant really do more than 3 steroid injections in the same spot within a year without having potential bad long term impact. Surgeons really don’t know about all these different modalities. Hang in there…you will get some relief. Dont give up.
Hi amsriesen,
Unfortunately, many doctors are willing to do round one of ES surgery but if a revision needs to be done, they decline to help. Just doesn’t make sense to me, but it’s the way it is. There are a very few doctors on our Doctor’s List for the US that I know have helped people who needed a second round due to regrowth or inadequate first round styloid recision (i.e. not enough removed).
Since you’ve been a forum member for awhile, you likely have read that the type of injections you’re getting are also used for diagnosing ES. If you get good results from the injection, there is a possibility that something has changed w/ your styloid since surgery. If it wasn’t removed at the skull base, sometimes the stub grows thicker as opposed to longer & the thickness can cause problems. Also, some people’s bodies lay down excessive amounts of scar tissue over time, & the scar tissue can press on nerves & create pain, numbness, tingling, etc. Scar tissue can be reduced by massage, laser therapy, surgery or perhaps other avenues. I would hope an MRI would show scar tissue since they’re so good at viewing soft tissues.
I know this is an old post, but I’m so glad it revived. I was diagnosed with Ernest Syndrome last year. Right stylomandibular ligament is calcified. That was the first diagnosis that made any sense of my weird symptoms. I had the injection last year, but it didn’t do much. I could tell the needle was going into a really angry ligament, and that it’s the source of my pain. But the injection just seemed to anger it more. Dr. Hepworth wants to remove the ligament. He doesn’t think much of the radiofrequency thermoneurolosis. I am frankly not sure what to think.
Hi Bopper -
Some people get great benefit from the injection like you had but others experience results such as yours. I’m sorry it hasn’t helped you.
We’ve had one member who had ES, & when her surgeon went in to remove her styloid, he found her stylomandibular ligament & stylohoid ligament on the same side were also calcified so he removed both. She has done very well w/ her surgical recovery.
From the little I’ve read, it sounds like radiofrequency thermal neurolosis will only block signals to the nerves which can help reduce or eliminate pain. It is our experience here that such procedures will not give you long-term results. It may work for weeks, months & in rare cases several years but it is only by removing the calcified ligament that you will get long lasting relief & your nerves will have the opportunity to recover. As long as the calcified ligament remains in place, it will continue to irritate & potentially damage your nerves.