Yes, unfortunately, the styloid process can regrow after complete resection back to the skull base. It happened to my son. One year after successful styloid surgery, symptoms returned. Symptoms included glossopharyngeal neuralgia (throat pain and ear pain) and palatal myoclonus. He is only 3 weeks out from a re-section of the same bone and the surgery was successful in that the entire styloid process was removed back to the skull base yet again. However, it proved to be more complicated than the first surgery (as expected for a repeat surgery in the same spot). He is now suffering from "first bite syndrome" along with the roller coaster post surgery pain. He had some wonderful relief for the first week, and now the pain goes up and down daily. The bone was 25mm the first time around, and measured 18mm the second time. Perhaps since he is a child growing rapidly the bone returned more quickly.
If anyone cares to comment, I am looking for your post surgery pain experiences. The first time my son had these surgeries, his pain was GONE shortly after surgery. Our surgeon reassured me this is normal, but my son's experience is definitely different this time around compared to his first surgery. Did anyone's pain go down, then go up a few weeks later? Did you achieve "0" pain at some point and if so, what was your timeframe? Were you on a roller coaster after surgery of pain in varying degrees throughout the days? Even though I was told this is normal, it is reassuring to hear it from those who have experienced it first hand.
I forgot to mention that he was bilateral the first time and bilateral again meaning he had elongated styloid processes on calcified ligaments on both sides the first time and new bone growth a year later on both sides.
I'm sorry that you're both having to go through this again- like you said presumably because of his age they've re-grown so quickly. Did you see the same doctor, if so was he shocked?
I've had, and so have others on here, a gradual lessening of pain over 8 months. In the early days it did vary, but this was more down to if I'd overdone things... I hope that things improve for your son soon.
Thank you Jules. Yes, it was the same surgeon and yes he was very surprised. He said if he hadn't done the first surgery himself and was confident it was taken back to the skull base, he wouldn't have believed it. Perhaps that can be updated in the "ES information tab" under the question about it regrowing, for others reference who may never find this discussion. I think it is important that if symptoms return that patients are not dismissed, but rather those symptoms be taken seriously.
Thank you for sharing your post surgery experience. It is really important for us for many reasons including our decision about doing the second side a second time as well. 8 months is a long time. Do you remember the pain intensity reduction about a month after surgery? 50%, more or less? or large fluctuations? I do see an increase for him in pain the day after he is more active. Perhaps that is part of the cause for the increase, but he was advised to exercise the area.
I will put it in the Info section- it's a definite one for that, especially with the same doctor confirming it.
Pain-wise, it was more lifting a bit too much which made the pain worse for me, and stuff like overdoing cleaning, but for your son it could be doing more at school etc. Don't know if he's anything like my boys, but they seem to have loads to carry about at school... I had vascular ES, so the worst symptoms went within a few days, and the pain was a lesser concern for me, the pain I had wasn't as bad as a lot of people on here, and controlled reasonably well with amitriptyline. I had a worse spell with the neuralgia I get (which I presume is/ was caused by the ES) about 3 months after surgery, still don't know why that was though!
It is tricky to get the balance right with exercise etc., as not doing anything will make it all stiffen up. I just did gentle stretches side to side and chin tucks, just a few and built up, 3 times a day. That was off my own back though, as I wasn't given any advice.
Whoa! That’s terrible! I’m sorry to hear he’s still suffering.
The possibility of regrowth is something I pestered my surgeons about, and the all seemed baffled at the idea. However, I have friends which calcification in other muscles that need to be removed regularly, so it seemed very possible. Your sounds rate of growth is still astounding. Is it possible another part of his anatomy is irritating this area, making it calcify quickly?
As for the post op question, I’m about 2 weeks healing from my first surgery. There was a lot f wound pain at first, but it was so very different from the typical pail. A lot of my symptoms resolved from the moment I woke up. Unfortunately, some of them have begun to return as I continue to heal. I don’t have much more insight other than I’m starting to get confused again (bad, but not as bad as pre-surgery) as well as cramps, pain, facial pain and numbness, and some eye twitching had returned. I’m waiting to bring it back up with my dr, as right now I’m sure they will just tell me to wait it out until I have more time to heal and reduce swelling.
Thank you for your reply. AT about 1 week post surgery, his nerve pain started going back up (but not as bad as pre-surgery). it went down dramatically after the surgery. I just started giving him Naproxen (anti-inflammatory) so maybe that will help. You also mentioned inflammation. Are you taking any anti-inflammatories?
SnappleofDiscord said:
Whoa! That's terrible! I'm sorry to hear he's still suffering. The possibility of regrowth is something I pestered my surgeons about, and the all seemed baffled at the idea. However, I have friends which calcification in other muscles that need to be removed regularly, so it seemed very possible. Your sounds rate of growth is still astounding. Is it possible another part of his anatomy is irritating this area, making it calcify quickly?
As for the post op question, I'm about 2 weeks healing from my first surgery. There was a lot f wound pain at first, but it was so very different from the typical pail. A lot of my symptoms resolved from the moment I woke up. Unfortunately, some of them have begun to return as I continue to heal. I don't have much more insight other than I'm starting to get confused again (bad, but not as bad as pre-surgery) as well as cramps, pain, facial pain and numbness, and some eye twitching had returned. I'm waiting to bring it back up with my dr, as right now I'm sure they will just tell me to wait it out until I have more time to heal and reduce swelling.
This is disheartening for me, as it seems that I may be suffering from regrowth. I had the middle section of my styloid processes removed surgically (at the same time) in late September 2015. It did the trick, relieving me of regular migraines, facial nerve pain, neck pain and even a deterioration of my voice. My processes had ossified all the way to the hyoid, and even had bone marrow inside (upon post-surgical pathology). Amounts removed were 47mm and 38mm respectively. I won’t discuss surgery recovery other than to say it sucked.
For almost a year, everything seemed great. And then I got a twinge of pain, slowly increasing over the last several weeks. Recent nerve pain in my face (mental nerve) and the beginning of deterioration of my voice only confirms for me that all is not well. And I had my first migraine in a year. I’m dreading surgery again. And I’m so disheartened that regrowth is even a possibility.
Like other comments above, my doctor had never heard of regrowth when I asked before surgery. This is so uncommon, however, that I suppose he wouldn’t have necessarily.
Fingers crossed that it doesn’t get a lot worse quickly. And thanks to all for being willing to share your stories. Not feeling alone in this process, at least, is helpful.
I’m so sorry to hear that your pain is coming back. Are you going to get another CT scan? It sounds like you had both styloids removed at the same time - is that the case? Ouch.
Wow - your styloids even had marrow inside of them. That really is bone. Had your doctor ever done a styloid surgery before? What does he say about the pain now?
I’m headed to the doctor, a new one, later this week, so we’ll see what he suggests. I expect that a CT is in my future. I moved since my surgery, so I have a clean slate with this doc now. I will say that the doctor seemed amused when I asked about a possibility of them growing back before I had the surgery.
I did have both out at the same time. The doctor who did it told me AFTER the surgery that he was worried that I’d be in a lot of pain and that he’d never done both at once before (and that he’d never seen them calcified all the way to the hyoid). He was right; it was an unpleasant recovery. But post-recovery, I was really happy. It wasn’t as if I missed the pain of the ES.
Anyway, I have to keep in mind that it isn’t as if we’re shooting in the dark trying to figure out what this pain is; it is all about solutions now and figuring out whether it warrants further significant action (and how to keep it from happening again).
Has anyone heard of solutions to halt future regrowth? Titanium caps? Cauterizing the stub? Anything?
I haven’t heard of any solutions to stop re-growth- to be honest I don’t think that most doctors realise that they can grow back! Until they twig that it is a possibility then no-one will think to look to prevent it! There’s so much ignorance with doctors about ES- I was told by the first doctor that they don’t grow, you’re born with them, which is clearly wrong, and that they can’t affect blood vessels (mine were compressing jugular veins both sides, it turned out!), so it will be a while!
EarMom is publishing a book about her son’s story- he was young and they had a battle to get him diagnosed because docs didn’t believe he could have ES at his age, plus now his have re-grown both sides… it would be good if anyone who’d had theirs grow back and needed a second surgery could persuade their doc to publish a research paper, which members could use as a reference!
Good luck with your next appt. !
CobyCo
I am very sorry to hear that your styloids may have grown back and that you are symptomatic again. My son had the same experience. He had both sides done 3 months apart. One year after the first surgery, he started having symptoms again. It was devastating. And convincing his surgeon they grew back was even harder. We got a new CT that definitely showed regrowth but they were adamant that it must have been something else. After a long story, which I won’t share here, he did have the surgery again on both sides. Surgery confirmed regrowth. Everyone on his surgical team was shocked. His case will be published by his surgeon, but it takes years because they need follow up. In the interim, I am publishing his story. One of my books (which includes my son’s issues) is at the printer now and should be available in a few weeks. The second book is dedicated to my son’s case and all its medical details including pictures. It is being edited as we speak and should be available later this year. Good luck to you. I know this is devastating, but you are a survivor and you can do this. Keep us posted.
It sounds like your son is the real survivor; I was able to sneak by for over 40 years before the issues related to the Eagle grew too unbearable to warrant figuring out what it was (and the docs kept preparing me for cancer). I can’t imagine dealing with this as a child, or dealing with the surgeries and the prospect for repeat surgeries in the future. Please pass along an encouraging word to your son from me and make sure he knows how proud he should be of himself to have pushed through this. Life brings interesting challenges all the time, and all we can do is work to overcome them.
Did the surgeons take any steps to attempt to halt future regrowth this time? Cauterization? I’ve read that that method is used (successfully) to halt bone growth in benign bone tumors. I also wondered about capping the bone with a plate. Not sure what other methods are out there, but I haven’t heard of any being used on ES to date. Have you?
Based on my conversations with his physician, nothing can be done to prevent regrowth. Each of my son’s were taken back to the skull base–twice. I pray that the bones never grow again, but no one could give us any assurances.
This is an old conversation, and I renew it only because I’m interested to know how it has gone for Ear_Mom’s son and any others who have suffered from regrowth.
“Luckily,” my symptoms in October 2016 actually subsided in the month or so thereafter, and may have been triggered by a massage of all things. Presumably, the nerve(s) that ran near what was left of my styloid process at the skull end were aggravated by an overly zealous masseuse, and aggravated nerves don’t calm easily. They did calm, though, and I had rare and minor flare-ups thereafter. At least until 10 days ago or so.
I have been suffering from near constant headaches again, along with nerve pain shooting across my collarbone, and my voice periodically drops out on me, just as it did when I first experienced significant symptoms associated with my ES. I’m finding Aleve to at least provide some relief from the headaches, but the relief is not complete, and I’m left to again wonder about regrowth. Here’s hoping that this is just another flare-up and will subside. How many of you have suffered significant flare-ups years post-surgery? And any new info on this topic in the last several years?
So sorry that you’re having more pain…I’ve had some brief flare ups over time, but when I’ve been coming down with something, a virus etc, it seems the inflammation for some reason triggers it. But short-lived & goes when I’ve got over whatever bug it was…
We’ve had a few members now with re-growth, actually it’s mentioned by Mayela in this discussion: Recent ES & TMJ diagnoses. Are these symptoms of ES? Help! - Symptoms and Treatments - Living with Eagle
You can always search for other discussions if you’re interested.
The best thing I think to do would be to get a new CT done, then you’ll know for definite if it’s happened.
Thanks, Jules, both for the support and for linking me to more recent conversations covering same. You’re likely right that a CT is in my future; I’m just hopeful that this will all go away again with time instead. That’s particularly true since I’ve recently moved to a small town and I’m not so sure it would do me much good to seek care here anyway.
I’m also thinking maybe a shot of tequila will help. Worth a try, right? LOL
You probably know that most of the cases of regrowth that we’re aware of happened to people whose styloids weren’t removed back to the skull base but were only shortened. Some surgeons are reluctant to go all the way to the skull because of fear of damaging some of the cranial nerves that exit the skull in the area of the styloid. Others feel that just shortening them to their normal length is enough - which isn’t always the case. Also, if your stylohyoid ligaments were left in place, they can calcify later so there is also that possibility. If you had bilateral ES but only had one side removed because the other side was asymptomatic, the remaining styloid can become reactive later as well.
As a side note, Ear_Mom’s son is doing very well. Dr. Newman in Philadelphia did all four of his surgeries. I know that’s nowhere close to you, but is good info to tuck away.
I’m so sorry you’re experiencing these symptoms so long after your initial surger(ies). I agree w/ Jules that a CT would hopefully give you answers (make sure to ask for some 3D images if/when you get a new CT). Our members from your state have mostly traveled out of state for their ES surgeries so if you need a revision, & can travel, that might be your best option.
Thanks for the further info. My styloid processes had become bone, with marrow, all the way to the hyoid bone. He removed about three inches of bone from one side and two from the other. But because my styloid had bulked up near the skull base (like the top of an icicle), he did not get all the way to the skull base, unfortunately. Not sure if this will link the photo of what he removed, but worth a try:
The link worked fine & that’s crazy info about your styloids becoming real bone w/ marrow not just calcifications. The styloids themselves may have marrow, after all, they are bones, but I never considered that possibility before. I would expect the “extensions” to simply be calcifications w/o marrow so it’s interesting that your elongated sections had it. The one on the right does look very thick. The fact that it is so thick up at your skull base could explain why you might have your current symptoms. ’
Six of our 12 cranial nerves exit the skull in the area where the styloids are & they are the ones that are most often affected by ES. There is a series of YouTube videos called Two Minute Neuroscience that gives a 2 min. explanation of a given nerve - it’s location, function & symptoms of dysfunction. You might be interested in watching them. The nerves are the facial, trigeminal, glossopharyngeal, hypoglossal, accessory & vagus. Just type Two Minute Neuroscience & the name of the nerve & the video will come up.