Continue to have symptoms 2 years after

Hello all,
In Feb of 2018 i had my right side partially done intraorally and my ENT removed as much as he could. To this day I continue to have a fullness and swelling feeling under my ear along the edge of the mandible down to the angle of the mandible. I also have pain and weird numbness feeling in back of right tongue close to where scar tissue is. Recently i started getting pain referring into my SCM muscle where it meets the mastoid under ear and back of skull and up behind my ear as well as jaw pain. Overall the entire right side of my head literally almost always hurts and feels like my jaw is going to explode. I have been to follow ups and to Mayo and also have had several injections of steroids into these areas with no help. Gabapentin doesn’t seem to do me any good either. I don’t know if Eagles was even my issue to begin with now and depression is always a struggle as i’ve been dealing with this for 6 years now. What else could this be? I’ve seen ernest syndrome, possible issues with posterior digastric muscles that are basically right next to the styloid ligaments. Any suggestions as i’m out of places to go.

I also just wanted to add as a former user of chewing tobacco all of these pains in these areas have me always constantly worried about cancer which just adds to the stress of all these symptoms. these symptoms can really get you down and since nothing is visible it is hard for people to understand and accept that you are in this much pain. The simple of fact of not knowing what is wrong with you for all these years is emotionally and physically exhausting.

So sorry that you’re still getting pain after surgery & all this time, it sounds really rough…as you still had symptoms still after surgery, it could be that not enough of the styloid process was removed & the part compressing nerves was still left in? There’s not always as good a visibility with intaoral surgery, not as much of the styloid process can be removed. Some of the newer symptoms could possibly be down to scar tissue formed from the surgery? Or possibly regrowth, that can happen occasionally.
You mentioned Gabapentin; there are lots of other medications which would be worth a try, sometimes you could have to try several different ones before you find one which works. You could ask about carbamazapine, amitriptyline etc. There’s info in the Newbies Guide section about medications, & also Ben’s Friends have a Facial pain group which would have more detailed info you might find helpful.
Also one member Snappleofdiscord found that putting lidocaine patches on the neck helped a bit. Some members have found medication like Baclofen helpful as it’s a muscle relaxant. Also MusicGeek had problems with scar tissue, & tried cold laser therapy which helped alot, just make sure your thyroid gland is protected.
It might be worth getting another CT done to see how much of the styloid process is left, or if there’s regrowth? Then you could take it from there, some members have had revision surgery successfully but would need to be done with a very experienced surgeon.
Sounds like you’ve looked into other alternatives- there is a section in the Newbies Guide Section ‘ES Info- if not ES what else’, if you’ve not seen that there are some other possibilities.
Thinking of you & hope you get some help…

Thanks for the reply Jules. I can still feel the Styloid even after the DR removed a portion. The pain is about 1" below where i can feel this bone. I don’t know if the ligament was removed but i’d have to imagine it was detached since they removed about half of the styloid tip. I have been on several meds like Nortryptiline, Cymbalta, Effexor, Gabapentin, and none have really helped my pain. my neck area near the angle of jaw always feels swollen or irritated and sometimes i get almost a hot sensation in this area. i can stick my finger down past the scar tissue into the angle of the jaw area and recreate this pain and swelling feeling and i feel some type of ligament/muscle type band in this area that appears to go to my hyoid bone. i dont know if its the stylohyoid or my digastric. This is sticking your finger in a curve past almost to base of tongue and hooking it down into the arch of mandible. My ENT seems to have given up on helping, i have tried going to oral surgeons, neurologists, my GP, PT, etc but after 6 years of countless tests they all seem to have no idea what the issue is and the Mayo Dr i saw was rude and basically said he doesnt believe in Eagles so that was a 13 hour car ride for nothing. For the new SCM pains all my Dr’s are saying is try PT and won’t give me a new CT or MRI.

Hi mikeg,

I’m sorry for your current pain & other symptoms. I agree with Jules. It sounds like perhaps your styloid wasn’t cut short enough or there is regrowth & that intraoral surgery just didn’t allow the doctor enough access to your styloid so it could be more completely removed. Since your ligament is still in place, it’s a distinct possibility it could have some calcification on it which is what you’re feeling when you palpate that area in your throat. That could also be causing problems. Short of getting a new CT there is really no other way to see what’s going on there. I’m surprised your GP isn’t being more proactive on your behalf. It’s not like he has to pay for the CT himself.

I’m sure it’s inconvenient for you to go out of state to get another opinion, but at this point it would be worth the effort. There is a doctor in Nebraska (Dr. Coughlin) & one in Colorado (Dr. Hepworth) who have both done successful ES surgeries in the recent past. You could try contacting one of them. Here’s the link to the current doctors’ list: US Doctors Familiar With ES, 2019

I do hope you’re able to find a doctor who will further pursue the cause of your symptoms.

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Thanks, i did hear back from my ENT today that did the surgery and he stated there was no calcification that he saw. I do have a follow up with him on Monday to basically start this process over. I believe I do have some MRI’s and a CT from after that I will have to ask my ENT to look at again. I plan on getting copies of my scans and maybe i can post them here for everyone to view. At this point i just don’t know what else to tell my ENT other than i keep having symptoms. He said he cut off as much as he felt comfortable doing and i’m sure now other doctors might be apprehensive to do surgery again and worsen scar tissue.

Glad you have a follow-up so soon. It will be interesting to see if your doctor thinks there has been any regrowth. Glad the ligament seems to be fine. It would be great for you to post your scan images here so we can give our non-medical opinions.

Scar tissue can be reduced by various means. If your doctor thinks the problem is the scar tissue, ask him if he knows someone who can do scar tissue reduction w/o surgery. It might be a long shot but asking is free.

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Met with Dr that did my surgery and discussed and reviewed my CT scans again. Explained i’m still having pain and swelling feelings in neck, under jaw. Does anyone else’s submandibular gland always feel swollen as well and tight? After about an hour visit nothing came from our meeting and he said he has no more ideas. He will be leaving the hospital in March for a position in the Twin Cities. The scans he showed me were CT scans but none of them show any structure such as ligaments, muscles, etc only bones. Did others also get an MRI to look at the softer structures of this area? ive had CT’s with and without contrast.

Hi mikeg,

If you’ve had a CT w/ contrast, your soft tissues should be visible there. Some people end up with excess scar tissue after surgery which again places pressure on nerves which in turn continue to be symptomatic. Scar tissue can be reduced by various non-surgical means but I’m not sure what type of doctor you would see to a) determine if you have a scar tissue build up & b) find out what types of therapies are available to help reduce scar tissue in the neck/throat areas. Perhaps someone “more in the know” than I am can help you there.

He showed me the 3D Scan of after my surgery. Is it only possible to get a 3d scan with contrast like that? He did say he only removed about 40% of my styloid during the surgery but there was no calcifications he saw according to him but again i want to see a scan that shows what things actually still look like including the full anatomy not just the styloid after the surgery. He didnt want or think i needed another CT and said it wouldn’t give any benefit. I’ve already hit my deductible so i sent him a chart message telling him if im going to get one then now is the time before year end. I feel like ive basically been given up on and the 6 DR’s i have seen for this basically think im crazy and all of this is just anxiety.

Hi mikeg,

If he only removed 40% of your styloid, it is possible that wasn’t enough & what’s left is continuing to cause symptoms. Since it’s been a couple of years since you had surgery, it makes sense to have a recheck via CT. The styloid could have also regrown some in that time since it wasn’t fully removed. Another CT could confirm that for you. If he won’t refer you for the scan, you might try your PCP.

CT scans are done in slices, but you can request some 3D images. My ES CT included four 3D images which showed my styloids from L & R sides as well as two front views. It was very helpful for me to be able to see what was going on in my neck.

Yeah he showed me several different views but none showing ligaments which bothers me as it’s not the whole picture. He stated he did not remove the ligament from the Styloid during the procedure but how is that the case when he removed 40% of this thing? isn’t the ligament typically attached towards the tip? I feel like he isn’t an expert on this condition and maybe doesn’t 100% know what to even look for.

This thing hasn’t grown more as i can still put my finger into my mouth and feel the tip quite easily. I can feel nearly half a finger tip of this bone still in my mouth he left.

You should not be able to feel it in your throat if enough was removed. Did you have bilateral ES? Sounds to me like you need to find a doctor willing to do revision surgery & remove more of your styloid.

Yes i can feel about half a finger tip in my throat still. All he removed was basically the skinnier tip that was nearly poking me in the 3rd molar. mine come in at a really weird angle it seems. The weird thing is my left one is longer and still there and ive had zero symptoms on left. I only had right side removed.

It does sound as if there wasn’t much removed, if you can still feel the tip. It would be helpful if you are able to get a new CT.
It’s only a guess, but if the average styloid is about 2.5cms, it may well be that the ligaments are attached at about that level & that the styloid grew longer from below the ligaments? So if your doctor only removed the tip he may not have been anywhere near where the ligaments were attached. The ligaments would only show up on a CT if they were calcified.

Hello again, the recent pain ive had on right side of neck last 3-4 months along mastoid, behind ear, and on angle of jaw has turned from bad pain into severe itching with no rash, redness, or dryness. I have tried benadryl, hydrocortisone, lotions etc and nothing is helping with this severe itching for more than 15 minutes. Has anyone experienced this before or perhaps a nerve issue, shingles without a rash? it is the weirdest thing. about 9 months ago i had a similiar issue in both armpits, back of arms and chest with burning and itching that lasted for 2-3 months that no Doctors could explain or diagnose.

Hi mikeg

Interestingly, itching is very low grade pain. If your pain has turned into an itch then perhaps, it’s a good sign that your nerves are healing, & the pain you’ve been having is on its way out? That would certainly be a best case scenario. Unfortunately, nerve sensations of any kind are hard to get rid of w/ OTC medications or treatments. A nerve pain medicine would likely help you get through this, but they can take awhile to kick in. Have you tried ice or heat on the area to see if either of those make a difference. I’d try ice first, & if that’s no help, then heat.

Your previous experience w/ an itching problem does sound like there’s something going on in your body that is stimulating your nerves at a low level. It could have been a virus of some sort though your current problem is clearly more related to your adventures with ES.

Thanks for the quick reply Isaiah, you seem very informed on ES and anatomy. I have been taking Gabapentin for a couple years to try and help nerve issues but that has not been helping the itching. Heat makes it worse and especially when showering it makes it much worse. I have had Bells Pallsy in the past as well on the same side of my ES symptoms. It sure does seem like some kind of virus like Zoster or something keeps attacking but shows no rashes or lesions.

Hi mikeg,

Have you talked to your doctor about getting tested for a systemic viral infection? A blood test looking for specific types of markers in the blood can show if something is there that shouldn’t be. Your doctor would know more about this.

As far as Gabapentin goes, if your current dose isn’t helping, would your doctor be willing to increase it or try a different nerve pain med. There is a post in the Newbies Guide here that lists different types of them. Perhaps a different one would work better for you. No use taking something that isn’t really helping. Here’s the link to the post Jules made: ES Information- Treatment: Pain Relief

Were you put on steroids & antiviral meds when you had Bell’s Palsy? I recently had my second Shingles vaccination, & it set my spinal nerves to screaming for a couple of days. In retrospect, I am VERY thankful I got the shots & not a full blown case of Shingles.

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