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Eagle Syndrome - Online Support Group

Hello again...I have new information on my health and hope it can help others

Hi everyone, It has been a long three months. I hope everyone is well or has some hope or light at the end of the tunnel. I spent some time away from my issues and then went back to the CT scan with contrast from when the hospital lit me up like a Christmas tree. I am going to share in case anyone is having a similar experience. After a LOT of inner reflection, I realized that my issue may not be my styloids at all. They ARE being pinged but not by their length alone. I pondered on my life full of migraine and thought about how sometimes the infusions worked and sometimes not. But WHY? Why only sometimes? I now also have trigeminal and other types of facial nerve pain. I am also losing weight because eating, drinking and talking hurt. So I listened to my body really well and then looked at my scans again. I have pain, tingling and then numbness on my eye/eye socket, cheek and chin. Pain now also in neck down into collar bone. I literally feel like my face is being pushed apart. I remember Jules and Isiah commenting on what the size was and now I wonder if they even meant my styloids. My left salivary gland is HUGE. BULGING HUGE. It is pushing against my eye, socket, ear canal, cheek to nose, chin and down my neck. I choke when I swallow and I am guessing the pressure makes my flaps not work correctly. I do def have Eagle’s Syndrome pain, but it is because my gland is huge and also fluid and it is pushing on my throat so whenever I eat or drink it is catching and rubbing against my styloid and tonsil. It hurts so terribly bad. Especially now that it is bigger. And I can feel it. I am incredibly sad that the Dr.s I have been going to since this started chose to not help advocate with me and that the ER Dr. that saw this scan and had someone also read it to him (I took still photos from the scan to share here) told me that there was nothing wrong with me. He could not even look me in the face when he said it. I think I have shared before that this has been going on for 5-7? years. I am scared to death about what damage has been done during this time frame. I lost my job because of this health issue. The Dr. I recently saw felt my face and neck and after about ten minutes the dreaded spread of symptoms started. I have to take nausea meds all the time now along with other meds and wait for a window to open where I can handle the pain and eat…once a day. I have lost 15 pounds in the last week. And now I can feel it happening on the other side as well. That is what scares me the most. I have more symptoms now and they make sense. I am sharing this in case someone has been told they do not have Eagle’s…but maybe they are experiencing the symptoms as well and looking for answers. I am going to add my pictures to my post. I thought I had eight but it is pretty plain to see. I want you all to know…even if no one believes you but YOU know you are ill and you are not crazy…keep going! Keep searching! Keep researching…my story is probably nowhere near finished but I finally was put in the hands of the right Dr. who is getting me to the right specialist. He absolutely believes me and he believes it is a rheumatology issue (probably auto-immune and cycling…also, my ANA was positive and inflammation was present about a year ago but the Neuro’s friend told me not to come back because it wasn’t enough for her to bother with me). KEEP GOING. DON’T GIVE UP. BELIEVE IN YOURSELF. ADVOCATE FOR YOURSELF EVEN WHEN THEY SAY YOU ARE MAKING IT UP. IF THE DR. DISMISSES YOU FIND A DR. WHO DOESN’T. I don’t know if I am now not able to be part of this board but I still have the same symptoms everyone else does. And I hope to find relief soon! I hope this helps someone else, I truly do, and I hope, again, that all of you have found some relief and peace.

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Hi dharmadel,

Everything you have described above can be attributed to Eagle Syndrome including the enlarged salivary gland which vdm commented on in your other post. Jules & I were noting the size of your styloids & nothing else in our previous posts. If you get your styloids removed, I can guarantee you’ll have resolution to some if not all the symptoms you’re dealing with. All the facial, eye, eye socket, cheek & chin pain may be exacerbated by the enlarged salivary gland, but it is not the main cause, your elongated styloids are.

I have discovered a great video series on YouTube called Two Minute Neuroscience. There is one video for each cranial nerve which describes the location, function & symptoms of dysfunction of each nerve. If you’ll watch the videos for the facial, trigeminal, accessory, vagus, glossopharyngeal & hypoglossal nerves even more of your puzzle will be put together. The symptoms you have seem to encompass all 6 of these cranial nerves.

I’m glad you have found a doctor who is helping you. That in itself is a victory! I hope the additional information I’ve given you is useful, too.

:sparkling_heart:

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I really hope that they can get the autoimmune issue under control- are they thinking Sjogrens ? I have had symptoms of Sjogrens Syndrome (salivary gland stones, dry eyes & mouth), which all started at the same time as the ES symptoms, Trigeminal Neuralgia too which can be linked to SjS too. But I’ve never been sure what’s what- have the SjS symptoms been triggered by inflammation caused by the elongated styloids? Or are the SjS symptoms caused by the compression of the Trigeminal Nerve by the styloids? (The Trigeminal Nerve has some control over moisture producing glands in the eyes & mouth). There are good videos on Youtube showing how to massage glands to keep saliva flowing & prevent stones, if that might be a help, obvs they must be incredibly painful when they’re really swollen, but if they settle a bit is that something you could try?
Anyway, I guess it’s a good & necessary plan to get some treatment for the AI condition, & hopefully that may settle some of your symptoms. Then there’s no harm in pursuing the ES, I do agree with Isaiah that they are long & probably causing you pain etc. But you are welcome here still as we do think you have ES symptoms, & we’d like to hear how you’re getting on.
Really hope that you can get some effective treatment soon, will keep praying for you.

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Thank you, Jules, for providing a different perspective. I’m so thankful we have diverse experiences and can look at ES members’ symptoms from different angles. This certainly helps people put the pieces of the puzzle together more completely.

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I was first diagnosed with atypical facial pain / damage to my trigeminal nerve. As it turns out after years of pain I was diagnosed with eagle syndrome. After surgery my pain became manageable but I am left with damage to my nerve. Prior to my surgery they could not tell me if I would get any relief from my constant pain. ES surgery for me was the way to start my healing journey, I now do weekly therapy to relax my face and neck muscles, wear a specialized very expensive TMJ bite plate and eat mostly soft foods. Good luck with your journey,

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THANK YOU all for adding to this! I did not realize that it is common for ES sufferers to also have salivary gland issues! I guess I will keep on learning about all of this! I also believe my styloids are long even though I keep being told they are not. I have an amended report somewhere with the numbers…I think I even shared the lengths on here somewhere. Is it also common for the symptoms to start spreading to the other side of face as far as salivary issues? It is so bad right now…yes, I am so thankful to have found this Dr. We discussed many things and it made so much sense. BTW on the report from my ER visit (pics shared above), where I was told nothing was wrong, I now know why the Dr. would not look at my face after he got the scan results. That report talks about everything in my scan and how normal it is EXCEPT for my salivary glands! They left that totally out of the report, no mention of them at all! And he then told me to leave and not come back that night, to try again the next day and maybe I’d be lucky to find a different Dr. there! I have never been so humiliated in my life and been made to feel like scum of the earth. It still hurts me horribly that I was treated that way when I was in some of the worst pain of my life. He said my styloids were normal as well…Sorry…I know I am still venting about it, but Drs are supposed to do no harm. Regardless, I guess I will be back and will re-read or start to read the info again here on the website. I need to be as educated as possible. I highly doubt I will be going to the new Dr anytime soon due to Covid19 and will probably have extra time to spare! I hope everyone stays healthy and safe. I can’t thank you all enough again for your input. HUGS!

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If there is an autoimmune thing going on, & say for example Sjogrens, which is affecting the salivary glands then that would usually be bilateral.
As you say, plenty of time now to educate yourself & do research…keep safe & well.

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I went to a previous ENT who said I did not have Sjogrens…yet I have all of the symptoms. Severe lack of saliva and tears! I am constantly using biotene or have to have water on me at all times. He was going to remove my tonsils without addressing the styloid issue and I pulled out at the last minute as my gut instinct told me to…that did not make sense to me! I do not want anyone to cut on me at all unless everything is out on the table! You stay safe too Jules!

Hi dharmadel,

I’m also hoping & praying for your safety. I recall that your styloids are long from previous pics you sent. The ER doctor sounds like he wasn’t very well informed PERIOD or he would have seen the enlarged glands in the scan even w/o them being noted.

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That hospital has me flagged, unfortunately. Because of another Dr. And I only go maybe twice a year when I just can’t take the pain and it is way out of control. They make me sit until last and then they stick me in a room and let me sit for hours with no input. I never ask for meds to take home ever because I already have them. There was no way he was going to admit to me my gland was HUGE. If I could do something about it I would. It is the most horrible kind of treatment you could ever imagine. And what do the experts say when I ask what to do when I have been up three days can’t eat or swallow? Go to the ER. And I tell them what I am treated like and they say go to the ER. The last time it was so bad I wanted to go I had a panic attack and made myself sleep for as long as possible.

Praying for you too Isaiah!

I’m so sorry. That type of treatment is unprofessional & inexcusable. :rage: :-1:t4:

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It is, but there is nothing I can do about it. As far as I know. Jules suggested a patient liason to talk to at that particular hospital. I guess I will find out at some point.

Following…how awful.

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Have you looked at the doctors list that we have. There are many good ENTs around the country who can and will tell you the truth. All you symptoms sound like Eagles and yes many doctors will treat you awfully because they have no clue why you are in pain and how much your .demeanor is affected by this pain. The ENt who can help with Eagles will also know what to do about the salivary gland.

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I realize you may not be close to any of these good doctors, but I do hope you are.

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This is horrible dharmadel and Eagles doesn’t fit into ER doc knowledge base. Ive been there on the pain side and what has helped me until I got correct diagnosis was to find a neurologist or pain specialist that specializes in nerve blocks, botox or steroid injections.

Around xmas I had the worst pain flair I have ever had. Even the emergency nerve block didnt knock it down right away. I drove to the docs holding ice packs on the side of my neck and ear. A few weeks before my left eyelid was twitching alot. Didnt cause pain just didnt feel right. When my pain was at its worst, my left sinus’s running like a sive and also left eye running profusely. The doc said it was a sympathetic response to the pain. I have all the pain and pressure on eye socket, cheek, etc as well as TMJ. Our bodies respond in mysterious ways to pain and when areas are inflammed. Good luck on finding doc soon. You may be able to find one and get an appt on the books in a couple months? I dont know where you live but for $350 (unless you have insurance), you can send your CT scans to Dr. Samji in San Jose, CA. He requires CT without contrast. He will review them and do phone consult. Given he cant do surgeries right now (Im one that got postponed), he may have some extra time on his hands to do these reviews. In early January, I send him my scans and I had an answer within 2 weeks and a consult a week or so later.

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I have been looking for a Dr. to look at it! I did not know he could do that!!! What do I ask for? Can it be sent online or do I have to send the disc in??? I found a doc here but my GP said no! I am in hell right now! Went to ER last night and they did shot of toradol and zofran…did not help the pain. Even though my face is swollen. Back to GP today he insists it is TN and GN…New DR. said rheume issue…This is the worst it has been in a minute and the meds are not working! Scary thing is my arms and hands are twitching? So is something pushing on my neck? Please tell me what I need to know before I contact him? My face feels like it is coming apart and I can barely type as my hands and fingers are twitching.

OH…and my ER people are saying all is well, no styloid issue no swelling…you can SEE it on my face! and my hands shake when I try to type or hold a cup or anything. That is new as of yesterday!

Hi dharmadel,

It’s quickest to contact Dr. Samji via his med assistant, Lauren - lauren@caminoent.com. I believe he prefers a soft copy of the CT scan (better to find out from Lauren, though) & radiology report, although, he’ll read the scan himself as he doesn’t fully trust any radiologist’s opinion. He will spend about 45 min w/ you on a phone consult & often insurance will help pay for the phone consult as it is considered a second opinion.

If you prefer to call, the office phone # is (408) 227-6300. We are 3 hours behind you i.e. it’s 4:40 pm in CA right now & 7:40 pm where you are.

As far as your question about your arms & hands, yes, the styloid can push on the cervical spine which can irritate spinal nerves. The accessory nerve, one of the cranial nerves which innervates some major neck & shoulder muscles is often irritated by ES. We have quite a few members who’ve had neck, shoulder, arm & hand symptoms from ES. These have resolved or mostly resolved after surgery.

Your ER people have no clue. That’s the best I can tell you. I’m so sorry you’re not getting the help you need closer to home.

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