New member with possible ES diagnosis

General
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Hello all. Very grateful to have found this resource and have been busy reading posts this afternoon. I am a 29-year-old woman living in Colorado in the US.

Today my ENT suggested the pain I have been having for months may be due to Eagle Syndrome. I have been seeing Dr Hepworth (I see on this site he is the only recommended doctor for Eagle Syndrome in my state, so I feel very lucky!) since mid to late March. First, I thought it was tonsillitis (I have a very, very large right tonsil – more on that later.) I was treated by a teledoc with amoxicillin, received some relief, but symptoms returned within about a week. Was then prescribed steroids by a second teledoc but my gut was telling me that I needed to see a specialist. My boyfriend has been seeing Dr. Hepworth for years with great success and recommended I make an appointment with him. Because of the Covid crisis and lockdown, he had a lot of canceled appointments and I got in to see him right away, which was awesome.

Dr. Hepworth initially found my right submandibular salivary gland was swollen and that perhaps I had an infection in my gland that was not treated by amoxicillin. I was prescribed a round of Cipro, which did nothing, and he recommended I suck on lime wedges and drink a lot of water. After the Cipro course, I got in to see the NP at his clinic and she prescribed me pilocarpine (produces saliva) and ordered a CT scan of my head and neck to rule out salivary stones or tumors. Because I have crappy insurance, it took forever to get my scan and then see Dr. Hepworth again, but I finally did today.

Today after reviewing my CT scan he said my symptoms and scan suggest I have Eagle Syndrome. He showed me on the scan where my right styloid process (bones I didn’t even know I had before this!) is longer than the other one. My salivary glands are normal and the scan showed no stones or blockages. He recommended a vascular ultrasound of my neck and I will hopefully be seeing Dr. Hepworth again in three weeks to go over the results of that. He also prescribed me one more antibiotic today (minocylcen) to definitively rule out infection of my tonsil or my gland. He told me to stop taking pilocarpine, as it’s likely not helping me at all.

My symptoms have been ongoing since mid-March without much relief at all. Some days all I can do is sit with a heating pad on my face/neck/shoulder. The worst pain is in my neck, mostly toward the front and side, along my jawline on my right side into my right ear at times. More often, it radiates into my shoulder and even my arm, causing my arm to feel weak and sometimes a little numb. From the beginning I have sometimes felt like I have something caught in my throat, almost like when you are holding in a cry and have a lump in your throat. It’s also on the right side, and I noticed the steroids I took for a few days made this symptom more pronounced. My right tonsil is HUGE and has been for a while. It doesn’t seem infected at all, doesn’t hurt. I don’t have pain swallowing although talking and eating sometimes make my pain worse. Turning my head doesn’t seem to do much to me, which I see is a common symptom of ES. Unrelated to the pain I’ve been having lately, I was also diagnosed with migraine headaches about five years ago. They are infrequent (1-2 a month maybe) but I would describe them as a stabbing pain behind my right eye and into the right side of my head. I take a triptan for these when they come on and that usually works. Now I’m wondering if these headaches could also be linked to ES.

The pain I am having is constant and pretty terrible. Reading about ES, it does feel like nerve pain. Right now I am taking 1800 mg of ibuprofen everyday and 50 mg Tramadol 1-2 times a day. Sometimes marijuana either eaten or smoked but I’ve cut back on that as well. I honestly can’t tell if heat (either heating pad, baths or showers) even works, but it seems to help my shoulder pain at times. Ibuprofen takes the edge off, but Tramadol is really the only thing that knocks it back enough for me to feel somewhat normal. Even when the pain disappears, it’s hard to describe, but feels like there’s a lump in my throat or just something “wrong” with the general area of my jaw/neck/base of tongue/mouth.

Dr. Hepworth said a “less discerning ENT” would likely just have my tonsils removed, but he didn’t think that would necessarily help me. Deep down in my gut I not feel it is a problem with my tonsils. Even though they are large, I have rarely ever been sick with strep or tonsillitis, which is why mine were never removed. I was very scared going to my appointment today wondering if I would need a slew of other tests or the possibility that I may have a tumor or something. I have to say I am feeling a bit relieved to have a potential diagnosis and a doctor who I have faith in, who is taking me seriously. He did discuss the ES surgery with me today, and it did not scare me that much. I’m more scared of living with this pain forever!

Does anyone with ES relate to these symptoms? Any recommendations on what to do for relief? Any other tests I should ask about, or questions I should ask at my next doctor’s visit? If you have had the surgery, I’d be curious to hear more about your experience. I’d appreciate advice, tips, commiseration, anything, as this is still a somewhat new situation for me. Thank you all in advance.

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Hi! I lived in Vail when my pain started…I did not find out I had ES for 8 years but had then had surgery which lowered my pain…my pain would come and go but was very sever for several days at a time. The pain would occur when the bone would press into a nerve. It could be if I was hugged, lift something heavy or get a massage. Only steroids would help my pain. I would suggest looking at what makes your pain elevate and write a diary. I also tell everyone to be careful at the dentist for that is when my elongated “bone” first punctured the nerve. I am now 12 years from the start of my pain and with time I have learned to manage it in my daily life. Good luck in you journey

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So sorry you’ve been dealing with it for years. That’s really interesting re: the dentist. I went to the dentist right before this all started. I didn’t have anything done except a cleaning, but who knows. I’ve tried tracking the symptoms to see what helps, or makes it worse, and so far it is just constant… nothing really seems to affect it unfortunately.

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Hi reading your post, your symptoms are very similar to mine, but five years ago they removed my LINGUAL tonsils, I improved for two years then pain came back the same and diagnosed with ES. waiting operation.
If you need to chat anytime just message.

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HI Blossom,
Ive had many of the same symptoms as you that began to worsen in 2015 (major shooting pain flairs up my neck to my ear /temples) I also have had some of the numbness and shoulder/arm stuff. I had my tonsils out in my late teens. Ive had TMJ bouts for years. I just had my left side done 30 days ago by Dr. Samji in CA and was just diagnosed in Jan. I noticed immediately after surgery the left shoulder pain seemed to subside. The surgery was a walk in the park compared to others Ive had and I was pleasantly surprised after day 3 when I was down to one pain killer a day. I was warned my TMJ would kick up after surgery because of the nerves being stretched etc and it has. I am hoping will calm down soon.
My only advice for the pain in the immediate time is I found a neurologist who was very experienced in giving injections in the neck, jaw and skull. I had a combination of botox, nerve block and steroids which knocked the pain down until I had surgery. He was the one that first suggested I might have Eagles which led to me having a CT scan and diagnosis/. this after years of MRI’s and other types of injections and dry needling. OT/PT, chiropractic. You name it, I did it. The nerve block and steroids worked well for me. Took a couple weeks to kick in but worked great on the pain. It was better than taking pain meds (I took oxycodone) that really only would take edge off the pain. They Oxy would give me major stomach upset so I rarely take it. Only when I was desperate. I suggest finding a doc (pain specialist) that can do the injections to get some more immediate relief.

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Thank you! I am going to bring up the possibility of steroids and the other things you mentioned at my next appt. right now I am using tramadol, and while it doesn’t give me nausea or many side effects, it just barely takes the edge off like you said.

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I can relate to the pain; it does sound as if some could be nerve pain, there’s medications which could help with that. More info on that in the Newbies Guide Section:
https://forum.livingwitheagle.org/t/es-information-treatment-pain-relief/1384/2https://forum.livingwitheagle.org/t/es-information-treatment-pain-relief/1384/2
I found that heat helped me more, although that’s more unusual, for most people ice helps! I was given the tip to help with sleep try sleeping semi upright, & that’s helped me a lot.
I wouldn’t worry if you don’t have all the ‘common’ symptoms- the feeling of something stuck in your throat is the most common; I never had that! I did have salivary gland issues too, in fact I got diagnosed through having a salivary gland stone, but when the pain continued after it cleared, I had a panoramic x-ray, which showed elongated styloids.
I had both styloids removed by external surgery in the UK; I was very lucky to have been able to see a very experienced doctor, it went well & the surgery has helped massively. You can search the stories of recovery on the site- if you look for what to expect after surgery using the magnifying glass icon, you can read different experiences & ups & down of recovery. I think everyone who has had surgery has come to the conclusion that their quality of life is affected so badly that they’re willing to take the risks involved in surgery.
Best wishes, & hope that you can get the rest of the tests done quickly.

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I’m with you on that one Jules!

I will never forget at xmas time driving about 45 minutes away to get emergency injections. It was so bad I held ice packs on the side of my head and neck while driving. Xmas day I spent laying in bed with ice packs. The doc had given me tramadol which had zero effect. 3 days later I was at PCP getting oxycodone and begging for a CT scan. He reluctantly gave me what I wanted, I was surprisingly able to schedule a CT scan 2 days later (I took what ever opening they had) and Eagles confirmed. Luckily thru this blog I pressed this issue and found Dr. Samji who reviewed my scans within 2 weeks. Although he said he could make no promises to take away all my symptoms, it never was a consideration NOT to get surgery. When you get to a point where you want them to just cut your head off due to pain, its time to take action. 5 years of hell was enough. :tired_face:

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I am going to try some ice packs instead next time my shoulder and arm flare up. I bought a special heating pad that drapes over my shoulders and I think it does help some, if nothing else to kind of dull the pain/distract me.

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Snapple, that is absolutely awful, I’m so sorry you had to go through that for years but glad you were able to have surgery and I hope your pain is getting better everyday!

I feel incredibly lucky to have happened upon Dr. Hepworth just by chance. Like I said in the post, my partner has seen him for a while due to some complicated medical issues he has with swallowing. I never once have felt that he or his staff have dismissed my pain or not taken me seriously, which is such a relief, as someone who has anxiety/mistrust with doctors due to past bad experiences.

The frustrating part has been the lack of urgency and efficiency of the American medical system when it comes to getting these scans/tests and in working with my crappy insurance plan. It doesn’t look like my insurance will cover the ultrasound at the office Dr. Hepworth referred me to, but at this point, I am ready to get on with it rather than spend time searching for another place that will accept it. So I am going to pay out of pocket and hope it will at least speed things up. They paid virtually none of the cost of the CT scan and it actually cost me MORE to go through insurance. The doctor’s office had to send my scan order to three(!) different imaging centers before we found one that will accept my insurance… It took two weeks longer than it should have. I am privileged enough to have funds to pay for it all despite being unemployed and on an ACA plan but if I weren’t, I don’t know what I would do. Still waiting on a call from the ultrasound center to schedule that. I am anxious to get it over with especially before my next follow up visit June 18. I do not want to have to reschedule.

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Above in a response to Ann I said that it didn’t seem like anything really affected my pain on a day-to-day basis… however yesterday I went for a three-mile hike. Afterward my arm and shoulder felt amazing and I had virtually no pain there – not sure if it was the physical activity, the distraction or the fact I took four ibuprofen beforehand. But I noticed during the hike, when I was breathing hard trying to get up the mountain, the symptoms in my mouth (perhaps at the base of tongue? Gland? Tonsil? I don’t know, it’s hard to say where this pain originates) were much worse. I’ve noticed this while riding my bike as well. Breathing in hard, it almost feels like the air is passing over a wound or something. It’s a really strange and unpleasant sensation. When I got home I took one of my stronger pain killers and felt probably the best I have felt in the past two months. Does anyone else notice physical activity helps? To be honest, I haven’t been getting a lot because of covid and being stuck at home.

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Yes, it was the worse pain flair I had. I had been having 1-2 a year and increasing. I was so lucky to be referred to this neurologist who recognized the Eagles. I too have had bad experiences with doctors and why I get more aggressive and advocate for my care.

Im very lucky to have good health insurance through my employer but I am nervous about the possibility of layoff and loss of it. So much so, after surgery being cancelled due to COVID once, I took the risk of flying into San Jose (a big hot zone) when they started opening up some elective surgeries. I was worried I wouldnt be able to get it due to change in insurance. Im going to schedule the other side as soon as possible (3 mths between surgeries) although I would probably wait 6 mths if not for current circumstances.

Although these docs offices are sometimes good at eventually finding in-network radiology, I usually take it out of their hands and do all the calling myself. You are one patient and they have many to do this for and get busy. I get a hard copy of the RX and fax it to them once I finally find the place that takes my insurance. Sometimes it helps to call your insurance company to get direction although it depends on the competence of the agent who takes your call. Also, I dont wait for radiology to call me, I call them and keep calling them until I get it scheduled. Remember you are one of many patients for them to call. I was a former patient advocate and gotten pretty saavy with how to bypass delays in the system. I also had ACA plan previously and helped others figure out theirs. If you need a helping hand, let me know. I hate to see you have to pay out of pocket but understand after weeks of delay while you would just pay out of pocket.
So glad you got to the right doctor by chance.

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@Snapple2020 you just inspired me to call the ultrasound clinic. you’re right, i don’t know why i worry about “being annoying” or advocating for myself. I did end up having to find the CT scan center on my own. for five years i worked as a journalist at a newspaper so i am used to calling people and “annoying” them. I called the US clinic tuesday to ask about insurance coverage and they were kind of vague and said I’d need a referral from my PCP, but that a referral from Dr. Hepworth may work. They told me the cost out of pocket and then said when they receive the referral they will call me. Well they never did and that was two days ago so I just left the scheduling department a message. I’d really like to get it scheduled this week!

I am learning a lot about insurance. I’ve always had it through my employer prior to this year, but this year I was self-employed before covid. I picked a silver plan with a major carrier and thought that would be good enough. Unfortunately it is an HMO and the network is extremely limited. My deductible is not that high, so hopefully if I do need surgery I will just hit the deductible and/or out of pocket max quickly. Thank god Hepworth is in network with them! The fact that our insurance coverage is tied to our employment is such a stressful situation. I will be rooting for you and hope you can get the other side done asap to have that stress over with!

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Well, I think exercise helps us in many ways. I noticed the days I do little, I notice my pain more. If I’m distracted, I don’t notice it as much. As long as I keep moving and doing something I generally feel better but that is only when I have low level pain.

LOL. I had silver plans for several years and just signed up my brother for one and I have noticed the ACA plans (I think depends on what state you are in) move towards HMO or what they call EPO which is pretty close to HMO as far I can see. I dread the day I have to chose an HMO because it would drive me crazy not to have choice. HMO can be a slower system. You lucked out Dr. Hepworth in the HMO.
I am fortunate I only have to work 20 hours a week and get full time PPO benefits however I hate the job…I had a run in with my boss because she became hostile when I questioned (re: safety - covid) having to go do a large 1000+ person event in early March. I had to go to upper management it was so bad. Our dept was the last to put in place social distancing and work from home in our agency I think because my boss wasn’t taking it seriously so I had to push and advocate for proper safety measures because my co-workers were to scared of retaliation. Needless to say, I’m not on the good employee list and took immediate medical leave when it became too hostile. Shes retiring in August and Im taking measures to stay out till end of September. They cant fire me if Im still out on leave :rofl:
I know what you mean about rocking the boat and being a pest. I suggest even though you left a message with scheduling department to continue to call all day cuz there is an outside chance you might catch them answering the phone. Alot of times they wont pick up the messages until the end of the day. I hope you get that scheduled ASAP and you dont have to wait too long.

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Good news! I called the ultrasound clinic again this afternoon, got someone and was able to schedule it for Monday. Feeling so relieved. They are not sure if my insurance will accept the claim but will submit one anyway, which I said was fine. They told me the out of pocket cost and it’s not too bad, thankfully. At this point I just want to proceed rather than wait around for insurance. Funnily (or not?) the CT scan would have cost me $300 out of pocket as an uninsured patient… it cost me $400 out of pocket through my insurance.

Great time to take leave! Re: your boss, good for you. I hope that more workplaces are taking it seriously now that they are basically forced to. Thankfully my partner can work from home and we have not left the house hardly at all except for my doctor appointments. I was working as a nanny and since the kids’ parents are home now, they don’t need me. I’m now unemployed but thankfully have my partner’s support and can afford my monthly premiums (and deductible if need be.)

Learning a lot about HMOs and how inconvenient they are. Previous to this issue, I rarely ever went to the doctor, but always had an insurance plan through my employer. Of course the one time I have a crappy plan, I need to go and possibly have surgery. I guess I should just be glad I have one and don’t have a bronze plan.

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Very glad you’ve got a slot quickly for your ultrasound! Hope it shows what it needs to.
Best wishes!

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Woo hoo…so glad you got through! Congrats. $400 for a CT scan? I think my insurance paid about $800-1200 with my co-pay about $100. Amazing. I remember because it was rejected by my plan because it was coded as TMJ which is not covered by many plans. I had to get the docs to correct the diagnosis code. This is the same doc who thought it was unlikely I had Eagles (even though neurologist advised to explore and peer reviewed data and tomography showing calcification provided to him) and said it was likely TMJ. I demanded the medical record be corrected and re-billed. It was. Even with a better PPO plan, you still have to fight with them to get the proper care. Good for you for getting through. Have a wonderful less-stressed weekend now that you got this off your plate. :blush:

Glad you have a partner that gives you great support through all this. Yes, we must be thankful for what we have and figure out how to navigate something less than ideal with insurance plans. Its all about getting past the obstacles that slow down the care. My motto is where there is a will, there is a way when it comes to medical care.

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I am finally going to the doctor Thursday to find out what the ultrasound said. I am anxious it is not going to show anything and I will be back at square one with no diagnosis. Seems weird, but I actually hope I get a firm eagle syndrome diagnosis this time so I can move forward with surgery and hopefully see some relief.

I have had a few good pain days but they are always seemingly followed by bad days, probably because it tricks me into thinking I don’t need to manage the pain. Yesterday I felt basically fine until about 7 pm and was thinking wow maybe this has been in my head, maybe the antibiotic he put me on is working, maybe nothing is wrong and it went away! So I didn’t take any of my pain meds just to see. Of course then it comes back with a vengeance and it’s then 9 pm and I am really regretting not taking my pain pill earlier because it keeps me awake. So last night I just took ibuprofen and Tylenol and this morning I feel absolutely awful. Huge lump feeling in throat, pain up side of my neck and shoulder and ear. Is it normal for the pain to come and go like this? I can’t really pinpoint what the triggers are sadly. Usually I feel best in the morning and get worse as the day goes on, but not always.

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Poor you, I hope the pain has settled down by now…lots of painkillers work best by building up in your system so best to keep on them, although I appreciate that you thought things were better!
The pain does vary quite a bit- sometimes you can think of a reason, but often not! Some members have had months of reprieve, & then it comes back! I know having my head turned for a bit, for example at a meeting if I wasn’t square on to the speaker really flared mine up, & I had to give up cycling & aerobics too. Sometimes just being tense can set it all off, & then that’s a vicious circle!
I hope that Thursday’s appt goes well so that you can move forward- I did reply to your other post to ask about surgery.

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blossom,

If you don’t get a definitive diagnosis from Dr. H. on Thurs., I suggest you send your CT scans to Dr. Samji in San Jose, CA, for a second opinion. He does phone consults & often insurance will pay for the cost of a second opinion. I can’t imagine Dr. H not diagnosing you for certain since your CT scan shows you have ES. He is a very experienced doctor/surgeon.