I am new to this group, but already finding value in other’s experiences. I would like to share how we arrived here and gain insight from those who have walked in my husband’s shoes as we plan next steps.
My husband woke up Nov. 17th with a severe sore throat and feeling bad. No fever. Just felt unwell and achy. I was shocked to learn later that day that he had stopped into a walk in clinic on his way home (bc he is not quick to visit the doctor). Doctor didn’t test him for anything but said his throat looked bad and sent him with an antiobiotic and Sulcrafate (which was for reflux and he didn’t take). That evening he was complaining of pressure across his chest and even across his upper arms. All Pain continued and seemed to worsen (as he continued to work as normal with tons of meetings). By Thursday he was pointing out it was only his left side where he had the throat pain and he continued to feel worse. I went back to the doctor with him that day. They listened about his throat pain on one side and the potential pain in his tooth area, but he couldn’t pin point which tooth. Doctor gave him a diffenrt antibiotic more specific to throat infections. He hadn’t been wearing his TMJ mouthguard for several months bc the dog had gotten to it, so we made an appt that same day to get rescanned and have it remade. He also had been experiencing shooting pains to the top of his head (more left sided). Friday night he woke up and said it was for sure tooth pain and had some facial swelling that day. Saturday was miserable for him with new pain around his left ear. He slept awful this entire week and spent most nights up and down on the couch. Sunday morning early we headed to the ER thinking it was an abscess. They did a CT scan and came back and said it showed a molar abscess. He was given a huge dose of IV antibiotics and began his third antibiotic for that week. They gave him morphine in his IV for his throat pain and he got very little relief if any. Monday our dentist did X-rays and saw no signs of an abscess. Sent us to endodontist and they did a 3D X-ray which also showed no signs of an abscess. However he noted that my husband’s styloid on his left side was completely calcified. He then told us about Eagle’s Syndrome and said that could be the culprit of his Symptoms. He had showed his scan to two other oral surgeons who agreed. Kicked us back to medical to get a referral to an ENT.
We headed back to our primary doctor who listened, ran every blood test he could think of and began working on an ENT referral (where we learned over the next week that no one locally would touch ES). All blood work was normal (except he did have a “high alert” for the Epstein Bar of 200). So MAYBE he had mono during all of this🤷♀️. He had ZERO energy that second into the third week. Worked from home and had to lay down a lot. Doctor also did a EKG bc of chest pains and everything came back great. Wasn’t eating bc when he ate he felt sick after one or two bites. Lost twenty pounds during that two week period. Dizzy daily as well.
He was also referred to a gastro doctor who did an upper scope at the end of week 2. Nothing alarming came back. Sent us home until our followup yesterday. Biopsies were taken and came back fine. He has gastritis and signs of reflux wear. They also said he had a stricture and he stretched that out a bit to help with eating discomfort. That helped a bit but didn’t solve feeling sick with every bite he ate. I looked up the med the very first doctor prescribed and read it helped coat the throat and stomach to aide in healing and he began taking that. He began eating within a couple of days of that med and had steadily been increasing his food intake. Hasn’t lost more weight but VERY slowly gaining a tiny bit back. Was hard to say whether energy was so low bc he wasn’t eating or if it was something else. Energy is still low but slightly better.
Yesterday was four weeks. He feels much better than week one and two, but pain in his throat and feeling like something is “stuck in his throat” has continued. Some days it’s worse than others, but it’s always there. Even drinking water he feels it. He continues to feel dizzy off and on. Something else I didn’t mention was a hoarse sounding cough that began at the end of the first week. That has not gone away. I notice he doesn’t cough once he is in bed and asleep. Just off and on throughout the day. And it’s a strained sounded cough. Mornings he feels good lying in bed and hopeful. But after he gets up, he begins feeling bad and very quickly is reminded of his lack of energy. He is a very type A busybody person. Four weeks of not feeling like doing anything has been depressing. He keeps planning to do things but then the time comes and it’s a struggle or he doesn’t even attempt it.
We now have an appt with Dr. Chan in Dallas for the end of April and he is on a wait list for cancellations. He started taking a once a day prescription strength med for reflux today. And he decided to try the gabapentin his general physician gave him a couple of weeks ago. Took it once yesterday for the first time. Bottle says he can take up to three times a day. Hard to motivate himself to take meds that could cause dizziness and tiredness though (when he is struggling with that already).
So we have the CT scan with and without contrast and the 3D scan from the endodontist. What else do we need to do between now and April to be armed with the right info to speed this process along? He also is keeping an appt he did finally get with a local ENT at the end of January. I wondered if he could aide in conservative treatment short term while he waits to be seen in April.
Thanks in advance if you have hung on reading until the end of this post! It’s been a long four weeks! Glad to have found this group for some added support as we wait to be seen by a specialist.
I’ll also add that in 2019 he was having all sorts of symptoms that started around the same time but didn’t make sense collectively. He had chest pains, migraines, ice pick headaches, vertigo and sore throats. Never had fever but would feel bad. Was convinced he had a brain tumor with the headaches. Saw a gastro doctor for colonoscopy who confirmed reflux and encouraged some dietary changes (which he did for several months). The ENT pointed out that with his personality it was very likely that stress played a part in all his physical symptoms and recommended him see a TMJ specialist and recommended an anti-depressant/ therapy to manage stress. We did all the things. And he did begin to start feeling better and symptoms subsided. But it was always a mystery and the gastro parts and chest pains always puzzled me. Looking back now, I realize this was likely connected to what he is experiencing now.
I wonder if he did have a viral infection, & that’s triggered this ‘flare’ of ES symptoms? Lots of us have noticed that we get symptoms flare up if we’re ill, maybe it’s the inflammation that’s there already with ES gets worse with something else on top…
It’s good that he’s had a CT with & without contrast, that’s the best scan to show ES. The dizziness he’s had could possibly be caused if the styloids are compressing blood vessels, so it would show on the scan hopefully. I don’t think that there are any other tests or scans which would be helpful to get in the mean time, what he’s had should be okay. Feel free to upload his images (if you can remove personal details), if you want, we could give you a heads up whether there is any blood vessel involvement, or if the scan does show enough of the styloids. The chest pains he’s had at times could be some irritation of the carotid arteries, or the vagus nerve being irritated, that can cause the digestive issues too.
The gabapentin might help with his pain, & that might help him sleep? There are other nerve pain meds if he gets too many side effects otherwise, like amitriptyline?
Some ENTs will do steroid / lidocaine injections into the area of the styloids, this can help with pain although it doesn’t work for everyone, & very rarely it can make symptoms worse. That’s something you could ask your local ENT about.
One of our members has recently had surgery with Dr. Babu Welch at UT Southwestern, is that near you? Just wondering otherwise if his waiting list might be shorter. we only know of one member who has seen him though.
@Acliff - I’m very sorry to learn about your husband’s symptoms. Good for you for going to bat for him & finding this forum so you both have more thorough information about ES. It’s also good news he’s had the appropriate scans & has a tentative diagnosis. @Jules has given you pretty thorough information for the moment.
I’ll just add that your husband’s tooth pain is likely from his trigeminal nerve being irritated by his elongated left styloid. That is one of the most commonly affected nerves by elongated styloids. It can cause tooth pain, sinus issues, nose pain, eye pain, headaches (w/o vertigo) & ear aches.
Uploading his imaging here, as Jules noted, would allow us to share our non-medical, but very experienced, opinions about what we see going on in his neck which can provide extra information for you to discuss w/ Dr. Chan & whomever else you may consult. We often see things the radiologists don’t note which can be helpful, too.
I don’t have easy access to ct scans but will include those when I have them. Here is the 3D scan. We are not experts at what we are looking at but did notice the styloid on the left side seems to disappear into the tissue verses a space on the right side. And there seems to be some varied shading in right side vs the left side which seems to be solid.
I can see the styloids both sides, I can’t label them for you I’m afraid, they show up really well! They’re both pretty long, angled inwards and quite needle-like at the end…I can’t see any gaps, tbh.
I can see the styloids both sides, I can’t label them for you I’m afraid, they show up really well! They’re both pretty long, angled inwards and quite needle-like at the end…I can’t see any gaps, tbh.
@Acliff - I agree w/ @Jules. Your husband has bilaterally elongated styloid processes. I’ve highlighted them in the image below. The left one is more steeply angled inward than the right one & they seem similar in length to my eyes.
What do they normally look like? Are they not usually angled in? I see a tiny space between the top of the right one and his jaw. It seems to disappear into the jaw on the left side to me (which is his worse side). The endodontist told us the left one was totally calcified. Can you tell if the right one has any calcification?
So the styloid processes are bone, they are calcified. Then the stylo-hyoid ligaments, which are attached to the styloids & link them to the hyoid bone, can become calcified as well. They can calcify completely from the styloids, or you can get gaps & calcified segments, or the styloids themselves can grow longer. It’s not really clear whether there is a little gap at the top or not, but it doesn’t really matter, they shouldn’t be long enough to be seen, all the area @Isaiah_40_31 has circled is abnormal, and could potentially cause symptoms. A normal length styloid wouldn’t usually be long enough to show on a panoramic x-ray, and the ligaments don’t show up unless they’re calcified.
Either way, whether it’s elongated styloids or calcified ligaments , looking at the scan and given his husbands symptoms, it’s pretty likely he has ES.
