I had my right styloid and ligaments out in May of 2022 and my left out in August of 2022. I traveled to CA to have surgery with Dr Samji. He has been absolutely amazing. We have continued Telehealth appointments because I still have severe symptom. All my symptoms revolve around intense ear pain and headaches. I also have a sore throat from time to time but I think this is caused more by my anxiety.
I have been round and round trying to determine why I’m not improving. I have been seeing a pain management doctor. He had me on tramadol which did not work so I asked to stop. We have tried Lyrica and Gabapentin and I haven’t found any relief from the continued ear pain. The ear pain is a stabbing burning sensation. I have popping and cracking when I open my mouth to yawn. I also have pressure headaches.
During my last Telehealth appointment with Dr. Samji he was at as much a loss for my continued pain as I am. He said that he felt I should be making some more improvements than I am by this point. He said he felt it was time to start checking off other boxes. I live in Nashville and he asked me to seek out a neurologist and ENT to run additional tests. I’ve ended up at Vanderbilt because my standard ENT referred me there because he didn’t know what else to do. Dr Samji also suggested that I get a second opinion from Dr. Cognetti in Pennsylvania. I went to the ENTt earlier this week and he was somewhat dismissive of what I’m experiencing. He ordered the two CT scans that Dr. Samji recommended. My sinuses and head/neck. I was also lucky enough to get in to the neurologist this week and he’s ordered an MRI for the beginning of March. The neurologist said that he wasn’t sure what might be causing this continued pain. He spent a lot of time with me but had no answers. Now, everyone is questioning - is it ES or something else. Although the neurologist said that he thinks my MRI will likely come back normal.
I hope we will know more when we get some of the test results back I just wanted to see if anyone here has any additional thoughts, ideas, suggestions?
After all of the medication’s that I’ve tried with the pain management doctor I’ve remained only on Klonopin. Nothing else has seem to work yet. They decided to try to start me on Cymbalta yesterday.
@meregehrke - I’ve had you on my mind the last 2 days & was planning to check in with you. I’m very sorry to read that you’re still in so much pain. ES related ear pain can be caused by the trigeminal &/or glossopharyngeal nerves which are both often symptomatic from irritation by elongated styloids. It’s rare that they don’t recover once the styloids are removed. Headaches can also be caused by the trigeminal nerve but if you’re getting pressure headaches, that sounds like it could be coming from vascular compression.
My recommendation is that you request a FIESTA MRI or MR Neurogram which look specifically at your nerves & not just your soft tissues as a regular MRI does. Getting a doppler ultrasound of your neck to check blood flow through your IJVs w/ your head in various positions might also be in order. This would be done by an Interventional Radiologist or Vascular doctor.
I hope Cymbalta really helps knock out your pain since the other meds you’ve tried haven’t done much. For the record, nerve pain doesn’t normally respond to opioid medications such as Tramadol. I’m a bit surprised the pain specialist didn’t start you on a nerve pain med instead.
Please let us know what you learn from your scan results.
Have you looked into TMJ? There are some non invasive things to try for TMJ, like nighttime mouth guards and splints from specialized dentists. Might take time to work to help the jaw relax and normalize.
I agree with @Isaiah_40_31 that it sounds like you could have GPN, it can causing stabbing ear pain. ES is a known cause for it, so it could be that the styloids have damaged the nerve & it might take longer to heal, or otherwise sometimes a blood vessel can lay over the nerve & rub on it causing pain. As @Isaiah_40_31 says, a FIESTA MRI can show if this is happening.
Ben’s Friends do also have a Facial Pain group with good info, so it might be worth having a look at their site?
I hope that the Cymbalta helps, it could take a couple of weeks to build up enough to work, but if it doesn’t there are still other nerve pain meds you could try, like Carbamazepine or Amitriptyline.
Sending you a hug, I really feel for you that the surgery hasn’t helped with the pain
Thank you for the input - I thought this initially at first. I looked into TMJ for many months before pursuing ES. I saw multiple specialist and oral surgeons and tried multiple mouth guards. My MRI did not show any significant TMJ degeneration. My dentist and Dr Samji both have told me that they do not think this is related to TMJ.
I don’t think the Cymbalta is agreeing with me. I have been sick the last three days that I started it. It almost feels like my pain is worse. I left a message for my doctor and I’m waiting to hear back.
I ready to give the Lyrica or Gabapentin another shot. Maybe we just didn’t find my correct dose. This is all so frustrating.
@meregehrke - You’re so right. Finding the correct nerve pain med & correct dose can require trial & error which in itself is frustrating because you just want something to work when you take it & not have to fool around waiting days/weeks to see if it will work. I hope you find the best med for you ASAP!
@meregehrke I sold Cymbalta for nerve pain when I was a pharmaceutical sales rep. The side effects with cymbalta go away after about 1-2 weeks. For neuropathy you should be starting with 30mg for 2 weeks, then go up to 60mg. You may need to go up to 90mg or 120mg. It takes about 2 weeks to start working.
Lyrica causes weight gain and peripheral edema. They both work well, just different mechanisms of action and side effects.
@meregehrke ~
Hi! I had calcification on ligaments under jaw and slightly elongated styloids on both sides. I had bilateral surgery in Aug 2021. I still have the same pain you are describing. I have noticed weather changes really irritate me. I have been highly frustrated too because I have tried multiple drugs to help too and have drained my bank account getting tests, traveling and doctors bills with no help, no answers. I have found flexril and Celebrex have been the most helpful for me personally. But it merely dulls the pain. Temperatures dropped here dramatically and I am in so much pain. Pressure headache, swelling/tightness in my neck/ throat area, jaw pain and extreme ear pain. I have spent thousands on my TMJ issues too and it did not help this issue I have. I think I may just have to live my life like this at this point. I can’t keep spending our savings to seek care that goes no where. I have been told the same, go see other specialists. It’s depressing to try so hard but never get answers. I’d love to hear how your scans come back. I hope we both can find relief soon! I will be thinking of you!
@Dannib - I’m really sorry to hear your surgery didn’t stop your symptoms. Do you know if you had IJV compression from your styloids/s-h ligaments prior to surgery? I know your resources are slim, but if you haven’t had a follow up CT scan &/or MRI to look at the vascular tissues in your neck, that might be worthwhile if your insurance will cover the cost.
Have you ever tried a course of prednisone to knock out inflammation? That might be very helpful for you with your winter symptoms.
Another question is - do you have any sinus issues? The sinuses invade the brain, & if they are reactive to weather &/or environmental conditions, they can also create or add to symptoms like the ones you’re having. Sinuses can also be viewed in an MRI.
Again, I’m really so sorry you’ve been suffering for so long in spite of surgery. We always hope for great outcomes for our members, but sometimes there are things outside the bounds of ES that are contributing to symptoms, & until the styloids are gone, it can be unclear that there are other possible contributors to the pain. I hope you’re able to find a doctor who is able to give an accurate diagnosis & treatment regimen that is truly helpful. Living in intense pain is no way to live. I will pray for you.
Thank you for the reply. They did not do contrast on my MRI so he didn’t know if I had compression or not. He told me to revisit TMJ and I spent $3000.00 on that bc insurance won’t cover jaw stuff. We do have “good” insurance but we have to pay thousands just to get a small bit of help. I have seen an ENT and got allergy tests (none found) and nose spray… spent $700 for that, it did nothing… Everyone says you must invest in yourself to get better but once you drain all of your resources and still nobody can give you answers it is depressing to say the least And leaves you wondering where to go next. I still owe thousands for the surgery as well. It would be so great to live somewhere where getting good medical help wasn’t a privilege. I appreciate the concern. I wouldn’t wish this on anybody. I hope the lady I replied to can find some helpful answers. Sending love to all.
So sorry @Dannib that you’re still suffering after surgery & have spent so much too, sending you a hug Wish I could wave a magic wand for you! Will pray that something changes for you
Dear Mereg,
I too have been down this road and had my surgeries in 2020. I have had longstanding neck issues/instability and TMJ for decades primarily due to Ehlers Danlos Hypermobility. I have tried just about every modality possible. IN 2015 I started having shooting stabbing pain in my neck (often triggered by swallowing) that went to my ear and blew up like a firework. It was excruciating. Pain meds barely take the edge off of the pain. MRI’s were normal and ENT sent me on my way in acute pain. I eventually landed at a spine surgeon whom gave me dexamethasone (steroid) which knocked the pain down within 24 hours. I would have occasional flairs, saw PT and pain doc for a few years until 2019 pain guy referred me to a neurologist where I have been getting botox injections along with nerve block, steroids. This doc diagnosed with the Eagles and then I found this site which was a lifesaver.
I have had re-occurant ear pain that comes and goes since eagles surgery. Last fall, I had some botox injected into my lower anterior scalene at the base of my neck. For four days whenever I yawned, the same shooting pain in my neck to my ear flared. Now I know the Eagles surgery did not get to the root problem in my neck.
Unfortunately Dr. Samji is not a specialist in neurology and limited in what he has to offer in this arena and does not address vascular compression which is not uncommon in Eagles. In my case, a review of a CT scan after surgery still shows some small pieces of calcifications in my neck that I suspect may be compressing nerves.
Patients are not often told their jaw gets dislocated during surgery and can trigger issues especially if you have TMJ. Mine sure did flair up after surgery.If you didn’t have the popping and cracking before surgery…this was likely the cause.
The suggestion to have a MR Neurogram or Fiesta MRI is highly suggested by me too. In my case Ive had so many scans CT & MRI’s that show nothing and leaves the docs scratching their head. That does not mean there is nothing wrong. I also suggest some botox in the jaws and temples as well as occipital area. Consider diagnostic injections to see if you can isolate the cause of the pain.
Consider finding a peripheral nerve program at Vanderbilt Dept of Neurosurgery? Also they may have a dental school at Vanderbilt and/or an Oral Facial Pain Program. I have found more help there than an ENT. I go to UW Oral Facial Center and their protocol now is to do trigger point lidocaine injections. I found them to actually be helpful and was surprised.
I did go to Chicago Hearing & Dizziness Center. They were great and to Dr. Hains (otoneurotology) will do a one time consult and his report is written like a masters thesis. He suggests my ear pain might be connected to cervical issues and has suggested a GAN or Greater Aricular Nerve Block to test that theory. Im trying to find someone to do that nerve block. He suggested a new nerve pain med called Oxcarbazene. I just picked up the RX and have not tried it yet. I was once given Pamelor at the oral facial pain center at Cedar Sinai in LA and it worked well however causes weight gain. Even just a short regime might be helpful?
I have been chasing this for a couple years now. Back in 2017 before I was diagnosed with the Eagles, I was referred for TOS (thoracic outlet syndrome) which Im coming back around to. I strongly suspect the neck/ear pain is related to the anterior scalenes in the neck. I feel a constant pull on my neck muscles to my ear. Based on all the diagnostics I have had past two years, I do feel I have adhesions and scar tissue compressing the nerves in neck and in the TOS areas. I do think my neck is chronically inflamed causing it to swell and its a vicious cycle of pain. I do have a history of this and had multiple nerve decompressions in other parts of my body including bracial plexus. An MR Neurogram or Fiesta scan could potentially help explore that with your nerve issues. It is hard to find a doctor that is highly skilled in reading these and know how to resolve the pain issue. A neurosurgeon within a Peripheral nerve program might be a better choice for consult?
I have one at UCLA Ive seen in the past. One of my EDS specialists has strongly suggested seeing a Dr. Robert Hagan in St. Louis as he agrees I have scar tissue causing nerve problems. Its worth taking a look see:
I hope this is helpful and sorry for the length. I havent been jumping on much lately but when I see the summaries, i try to jump on an offer up some suggestions. YOU are also welcome to contact me privately as I get those alerts and will respond timely.
I’m very sorry to hear of the pain you’re still experiencing. Just thought I would share this video in the outside chance it could help relieve some of the pain. When you’re next experiencing the pain intensely try jutting your mandible forward and holding it there like he shows in this video. Praying it helps!
Even just a short regime might be helpful?