Hello! I was recently diagnosed with with TMJ & ES by my ENT & a dentist that specializes in TMJ. I have the following common symptoms: jaw & ear pain, stiffness, throat discomfort, tinnitus/ears feel clogged, headaches, eye strain, vertigo. HOWEVER, my headaches are quite severe and frequent (daily). I’ve experienced migraine headaches since I’ve been 12… I’m currently 31.
My headache sensations as of recently are much more unique now. My head feels hot, tingles & often “pulsates.” I’ve also been experiencing some pain & tingling going down my arm, into my hands, and feet. Is this “normal,” or should I be concerned about any blood vessel compression? *Side note: I was diagnosed with Raynauds at 15 as well. I’ve had a series of tests preformed including a mouth X-ray, and CT scan of my sinuses. Do I need an MRI? I feel like I have health anxiety due to the pain & recent diagnoses. I don’t want to ignore any potential serious symptoms, though.
Is surgery the best option for treatment? I’ve been taking ibuprofen, doing the stretches my specialists have recommended, and I’ll be receiving my Nightguard at the end of the month. The daily pain & discomfort is getting to me. I know this is just the beginning, but I’m desperate for relief! Any suggestions or advice would be greatly appreciated.
Hi, & welcome to the forum!
There’s lots of info in the Newbies Guide Section, here’s a link: Latest Welcome/Newbies Guide to Eagle Syndrome topics - Living with Eagle
It covers subjects like common symptoms & possible explanations, treatment, surgery etc.
The past discussions can be useful too- they’re searchable by topic; we’ve got lots of members who have also got a TMJ diagnosis, and the symptoms do cross over, so you might find having a look at some discussions helpful.
You don’t need an MRI- it shows soft tissues better, so not useful for elongated styloids, or calcified ligaments. How were you diagnosed? A CT is the best diagnostic tool for ES, & if you have vascular symptoms (dizziness, eye pain, fainting, head/ ear pressure etc) a CT with contrast would show if there’s any compression of blood vessels. If you get any symptoms with your head in a certain position it can be useful to get the CT with contrast done like that, e.g. turning your head could push the styloids onto a blood vessel. The feeling of your head pulsating could maybe be a vascular symptom.
The pain and tingling in your arms could be due to pressure on the accessory nerve; ES is unlikely to cause tingling in your feet, as the nerves affecting legs exit the spine much lower down. However, some members have mentioned this, there can be weird or wacky symptoms sometimes! Raynaud’s can be an autoimmune condition, & some members have developed AI conditions as well, maybe the inflammation caused by the styloid processes triggers it?
Surgery is the only ‘cure’ for ES; there can be some medications to help, there’s info about that in the Newbies Guide too. There are medications to help with nerve pain, & muscle relaxants like Baclofen can sometimes help. And some members have had help with steroid/ lidocaine injections into the area, although these don’t last long, & can’t be done very often. Surgery does have risks though, so shouldn’t be undertaken lightly. The risks are lessened if you see a surgeon with experience. It’s a personal decision, depending on how much the pain & symptoms are affecting your quality of life. If you are considering surgery, we have a list of doctors familiar with ES in the Doctors Info Section, here’s a link: US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
If there’s no-one in your area, then it’s worth travelling, & some doctors do phone consults too.
I hope this helps!
My primary care doctor referred me to an ENT after she was unable to detect any issues based on my blood work, a chest X-ray & physical back in late October. I was given a steroid dosepack (6 days). I have inflammation & a “lump” in my throat. The steroids helped, but two days after I finished the prescription— my symptoms came back. My ENT is fantastic & recognized TMJ within minutes of an examination. I had a CT scan of my sinuses as I have some inflammation and congestion even though I’m not sick.
I saw a dentist that specializes in TMJ days later, and received X-rays of my mouth & jaw area. I’m unable to post the X-rays (I’m not sure if it’s because I’m new to this site?). TMJ was confirmed. He sent my X-rays to an orthopedic surgeon because he noticed possible nerve damage from my wisdom teeth being removed many years ago. That was how the diagnosis of ES (bilateral) was mentioned after seeing the calcified ligaments. I will be seeking another opinion, but he’s treated patients with ES & is confident with the diagnoses.
Thank you for bringing up the possibility of Raynauds being triggered by inflammation. I figured it wasn’t a direct symptom, but everything seems to be “connected.” I’ve experienced many symptoms that have been tolerable for 3+ years, but after a minor car accident in September 2020— they have gotten worse & that was when I started noticing ear, throat, neck & jaw issues.
The thought of surgery scares me, but I’ve been pretty miserable on a daily basis. The headaches have been absolutely awful! Ibuprofen, Arnica gel, stretching etc. has provided some relief; not much. I’m unemployed due to the pandemic & don’t know what to expect as far as costs go. I have insurance, however, they haven’t been much help to guide me in the direction to inquire about these potential costs. I guess I have to seek guidance from the specialists & look into a CT scan with. It seems as though Doctor Samji in California has preformed many successful surgeries, however, can anyone confirm that he ONLY preforms this procedure externally? I heard there are less invasive options ie: endoscopic surgery??
Dr. Samji only does external ES surgery. It’s actually quicker to heal from than intraoral surgery & when done by a skilled surgeon leaves almost no visible evidence in the neck area. The external approach gives the surgeon better access to the entire styloid process & to the stylohyoid ligaments should they need to be removed as well (they should be if they show any signs of calcification).
Many insurance companies have no billing code for a styloidectomy so they won’t cover the surgical cost. Dr. Samji did my surgeries, & they were billed as craniectomies to avoid that problem. Since the styloids are attached to the mastoid process at the bottom of the skull this surgical code makes sense.
Thank you for all the input @Isaiah_40_31! Surgery is a last resort, but I’m trying to prepare myself for anything at this point. I’m not certain other treatment options will provide the relief I need to live a “normal” life. I was very skeptical about the external procedure due to scaring, healing time, and insurance coverage.
May I ask, do you have lingering symptoms, or new symptoms post surgery with Dr. Samji? It seems as though it’s a very unique process for everyone.
At the same time as getting diagnosed with ES, I started getting symptoms of an autoimmune disease- Sjogren’s Syndrome- and Raynaud’s too. I figured that they were all linked & maybe inflammation. I never pursued it as a diagnosis as the symptoms are livable with now, & certainly haven’t got any worse over the last few years.
I’m Uk, so had my surgeries with a doctor I found out about on here, but about the same time as Isaiah did, & external surgery too. I had vascular ES; those symptoms have hugely improved. I do have trigeminal neuralgia- the numbness and tingling I used to get have improved, but I still get aching with the nerves, so haven’t been able to come off the nerve pain medication, but the rest of the neck &ear pain have also gone. I have slightly weird tingly sensations around my ear post-surgery, but it’s fine & I feel so much better, so glad I had the surgery!
Isaiah obvs had surgery with Dr Samji, so can tell you more about him, but for me it’s worked really well.
As Isaiah says, external surgery does give better results & he’s careful where he makes the incision, so minimal if any scarring.
Hi Klinks,
You have “hit the nail on the head” w/ your observation regarding post op symptoms being unique to each person. Though there are some commonalities such as sore throat, stiff jaw joint, some swallowing difficulty because of swelling, etc. for a couple of weeks after surgery, many people feel immediate relief from some of their worst symptoms while other symptoms seem to linger for months.
We encourage all of our members to avoid surgery if possible and only consider it when one’s lifestyle becomes impeded due to ES symptoms. I was diagnosed w/in about 4 months of my obvious symptoms’ onset & had my first surgery about 6 weeks later. Post op, I ended up w/ First Bite Syndrome which never fully resolved but now at 6.5 years post op, I’m still seeing it gradually disappear. It’s actually nearly gone now. I also had some irritation to my glossopharyngeal nerve during surgery so half of my tongue was paralyzed (the motor part didn’t work, but I never lost sensation) for about 6 months & by 9 months it was 95% back to normal. I recall that it took 2 months post op before my energy returned, & I started feeling pretty normal again. That said, I had bilateral ES & the symptoms caused by the remaining styloid began ramping up at that point. Since I’ve had both styloids removed, I have been able to return fully to my normal, active lifestyle. The few, low grade symptoms I have left are simply reminders of how far I’ve come.
What a journey! I appreciate you sharing your experience. ES has definitely disrupted “normal” life for me, so I am trying to prepare myself for the possibility of having surgery. I will exhaust other options first as I know there are many risks involved. I’m making as many adjustments as I can at home to help alleviate symptoms, however, not much luck so far. Trying to stay optimistic & will seek advice for more pain management in the meantime!
In my experience, some symptoms are pretty the same on almost everyone. However, maybe because of the unique nature of each body, the majority of us experience our very own specific symptoms. It’s like adding salt and pepper to an awful dish. I had bilateral, both removed by Dr. David Cognetti. I experienced all you describe, plus a very annoying symptom: I couldn’t be under the sun for more than 10 or 15 minutes if the temperature was warm or hot. It worsened the inflamation and pain, and it also gave me fever. I used to end up in bed with cold compresses. I’m an avid rose enthusiastic, but after ES took over my life, I just simply couldn’t do it anymore. I encourage you to have surgery (I speak for myself.) In my case, it took way more than a year to be diagnosed and in the meantime I tried everything the doctors told me to do. Four different ENT’s saw me and came up with a bunch of different illnesses and stuffed me with antibiotics. One of them even suggested I was making it up. Then a young ENT took a gamble on me and we finally knew the nature of the beast. Until my surgeries, I felt like I was covering with bandages something that, putting it simple, was never going to go away. For me, living with ES was living in hell. The surgeries are not a walk in the park, but I was already experiencing excruciating pain every day, so what was the difference? They were both absolutely worth it. Unfortunatelly, I am heck of an incredibly uncommon case, because one of the styloids is growing again. But for sure, I’ll do it again if I have to. Nothing is worse than spending the rest of your life battling ES. This is my very own opinion based in my experience. I am aware that others prefer to take a different approach, and all are valid. My heart goes to you. I wish you the best in this journey.
So sorry that one of your styloids is growing back; we have seen a few members who that’s happened to. Have you got the same symptoms back again, & have you seen Dr Cognetti ?
Yes, the same, although only on the side where it is growing. I went to see the ENT who diagnosed me the first time. She sent me for the specific scan that shows the styloids, and confirmed what we already knew. She calls me “my eagle”, because she hasn’t had or heard about any other case amongst the medical community. Right now, from the outside my right tonsil looks and feels like a walnut. You can’t see anything looking from the mouth. It is “there”, very warm, almost hot to the touch and the pain radiates to the ear, neck and the base of the tongue. She prescribes me Gabapentin, which is the only thing that helps, although she says that the scarce literature about ES states that it is unknown why. Gabapentin is prescribed for seizures, so who knows. I haven’t gone to Dr Cognetti yet. I live in another state and it’s a little complicated, but as soon as I can cover expenses like hotel, etc., I’ll be there. I am misserable. Thanks for caring and for your good wishes. This group is the only place where I don’t feel like a weirdo speaking in tongues. We all speak the same language; one that other people don’t understand.
Jules actually alerted me to your posts. I’m really sorry to hear that your symptoms have recurred and that your styloid process has regrown. I would never wish this upon anyone, and the lack of understanding in the medical community, and the lack of options for care as a result, is frustrating.
I had a bilateral styloidectomy in Portland, OR in 2015, and I was thrilled with the relief thereafter. It ended years of migraines and some serious nerve pain in my face in the months preceding surgery. I have to admit, though, that I actually laughed when you mentioned speaking in tongues, as one of my most noticeable outward-facing symptoms was loss of most of my voice.
I am also afraid that I may be joining you with regrowth, as my voice has begun deteriorating again and I’m again getting headaches and shooting nerve pain (this time across my collarbone instead of in my face, though not sure that I’d recommend either). I’m in no rush to diagnose, though. I’ve had enough Eagle, and would prefer that it just fly away. Perhaps ignorance can be bliss?
I hope you are able to get the treatment you need soon. You’re certainly not alone in your suffering in the meantime.
Your collar bone pain is likely coming from your accessory nerve being irritated. It’s one of the 6 cranial nerves often affected by ES. That could be an indication that, if you have regrowth, the angle or thickness of the regrowth is slightly different than that of the original styloid.
I’d like to suggest you make a phone conference appt w/ Dr. Cognetti after you send him your updated CT to see if he’s willing to re-do your surgery. It may be that styloid will continue to be a problem until it’s removed back to the skull base. He has not been willing to do revision surgery for some of our members who’ve gone back to him after experiencing styloid regrowth. Dr. Newman who’s also in Philly has done at least one revision surgery we know of, & Dr. Hackman in North Carolina has done successful revision surgery (removing the regrowing styloid back to the skull base) for one or two or our members. It would be worth your time to contact his office if Dr. Cognetti turns you away. Please let us know if Dr. Cognetti is willing to help you. That information helps us properly inform other patients who find themselves “in the same boat” as you are.
@Mayela Thank you for sharing your experience with me! At this point, I am crossing my fingers that surgery won’t be necessary. However, I have a feeling that it’ll be the best solution for me. I am remaining optimistic & hope that my Nightguard will provide some relief as I wait to have a CT scan. My dentist (TMJ specialist) has already provided me with some input regarding the surgical process. Best of luck to you. I’m so sorry that your styloids are growing again. Must be terrible! I appreciate your positive outlook & it’s encouraging to see that there will hopefully be more benefits than risks.
It’s a bummer to read this, but it is not the first time someone has told me to find another doctor for the same reason. Dr. Cognetti always leaves a little less than an inch of styloid. I found this out when I woke up from anesthesia. That was one of the first things that crossed my mind when I knew about the regrowth. I feel discouraged because he is a very empathetic doctor and his bedside manners are impeccable.
He is so recognized and respected that while waiting to be called to the office, I met a lady from Alaska; not a joke and not a clue why did she ended up in Philly. I sincerely hope this doesn’t happen to her as well. THAT would be a problem. So, this conversation gave me the confirmation I needed to move on to a different doctor. I was reluctant, but this group is kind of a compass for me. I find comfort, but also guidance. I will call him and find out what he thinks. Doctors find it very hard to admit their way of doing things is not the best.
You have such a great attitude about all aspects of your situation, Mayela. Please know that we’re here to give you “e-hugs” & whatever help or encouragement you need along this next journey you’re on.
Thank you so much for telling me that!! Some days I am not that good at managing this, but it certainly works for me the fact that I joke around all the time. Most of the times I make fun of myself and that helps, even when in pain and looking like a chipmunk. I must certainly keep you guys posted about things as they come.
Thank you for mentioning this. There are always risks with any surgery and it is good to learn about them. how long did you wait between the two styloidectomies?
When I had my first surgery, Dr. Samji required a 6 mo. wait before he’d do a second surgery. He has now shortened it to 3 mos. I had a cycling accident w/ a head injury (my helmet definitely reduced the extent of the injury) exactly a week before my second surgery was scheduled. Besides facial contusions, I also had a moderate concussion. Dr. Samji told me he wouldn’t operate until my brain had healed in 3-4 months, thus my second surgery was pushed out to 9 months after my first one. I was a basket case by then because the symptoms from my remaining styloid (left) had significantly intensified (head injury may have promoted this), & I was feeling pretty incoherent even w/o having vascular ES. I also got Meniére"s Disease in my left ear from the head injury which was a double whammy to my left side. Though Meniére’s is still w/ me, ES is NOT!! (for the most part).
