ES symptoms seem to come & go i.e. they’ll ramp up for awhile then you’ll get a reprieve for a bit then they come back again, etc. It’s not a fun cycle. One thing that often causes symptoms to flare is stress. You’re in an in between place right now in that you have a diagnosis, but your CT scan isn’t confirming it, & you’re awaiting MRI results. You’re in pain & the uncertainty & waiting game are taking a toll on you. Do your best to find activities that help you relax & put your mind elsewhere for awhile.
You can also try icing your neck (15 min on & 45 min off) or using heat if ice doesn’t help. Sleeping w/ your head elevated at night can also help symptoms. Additionally some people have gotten an Rx for lidocaine patches or cream which they put on their necks & found them to help reduce symptoms. A more aggressive therapy would be to get a lidocaine/cortisone injection into your neck or tonsil area near the base of the styloids. This is usually done w/ ultrasound guidance so the medication is accurately placed. Finally, getting an Rx for a nerve pain medication or muscle relaxant can also be helpful. Of course, you’ll need to talk to your doctor about these things.
Hi @Cuddles59
I am not any better but each day is different, symptoms change and some days are worse than others are. I appreciate you asking though and am sorry you are struggling with many of the same symptoms I am. It can be frustrating and at times, really difficult to deal with. A couple of things I’ve noticed; It is worse for me if I don’t get my eight hours of sleep in each night and if I overdo exercise (taking an evening walk and going just a little too far, can and will make symptoms flare up for me. Try to pay close attention to what your body is telling you. I try to exercise because that’s obviously important but I’m also aware of my limits with Eagle Syndrome. I am sorry I don’t respond quickly, I am not on my computer enough to keep up with my email daily but I try. Thank you to all of the moderators who step up with their knowledgeable information where I am unable to do so in a timely manner. I’m so appreciative for this forum and the experience of others, it is more helpful than you may even know. I still have until Oct.20th, 2021 to speak with a head and neck surgeon to see if he can operate, so I’m patiently waiting (most of the time for that appointment. Counting the days, hours and minutes for sure! @Isaiah_40_31 I have been using Lidocaine patches on my neck and it does help somewhat so I thank you for that tidbit. I’m curious about nerve pain meds now and will discuss that when I meet my new doctor next month. Thanks again, take care all!
Thank you again for your information. I have had more pain around my left ear jaw and now throat for 2 days. I have not had much dizziness this week though. Had not had any problem with throat or neck till last couple of days. Still no word on MRI. Hope to hear something Monday. Is it unusual to have it on just one side? Seems like it kind of moves around. Thanks again.
My left ear is constant pain (feels like something is stuck in there) and my neck and jaw are worse on the left for me with only occasional pain on my right side, and that is recent. I remember thinking just last week, “Oh great it’s starting on the right side now too.” If I remember correctly,back in May my E.N.T. doctor said the bone on my left was longer than the right one so maybe yours is as well? I don’t know if the pain moves around as you suggested but the nerves could probably make it feel like that. My entire body hurts most days and I wonder if it’s nerve related or if I have an entirely different issue going on along with the ES. Anything is possible I suppose but I hope you get back word on your MRI results soon and can begin figuring out your treatment plan straight away!
Thanks I know what you mean anytime I feel anything on the right side I get scared. Did your ENT Dr do CT scan or MRI? Are you considering surgery at this point? I’m so grateful I found this group. Hang in there.
I had several tests over a few years time. MRI’s,ultrasounds,cardiac stress tests,lung tests,etc. Brain scan,chest x-rays, vaginal ultrasound, basically trying to rule out different types of cancer I think. All ruled out any health problems and doctors couldn’t find what was wrong with me. I saw my doctor in March and she sent me to the ENT doctor. The doctor I saw was confident I had Eagle Syndrome upon hearing my symptoms,so he did a CT scan right there in his office to confirm it. He showed me the images on the monitor and explained ES to me and that most doctors have no knowledge of it,being that it’s so rare. That’s why it’s so difficult to get diagnosed. If your MRI doesn’t show anything I’d consider asking your primary doctor for a referral for a CT scan of the head and neck. It was ‘in your face obvious’ on the imagery and I wish I’d taken a photo of the image with my cell phone when I was there so I could share it,but I didn’t think of it at the time. That ENT doctor I saw doesn’t do ES surgeries but he referred me to another Otolarygologist/Head and Neck surgeon that he thinks will.I’m hopeful & waiting on that appointment now, it’s a couple of months out in October so I won’t have any more answers until then.You hang in there also, we’re getting closer to help every day!!
I also had the neck CT first but that showed nothing. You are right with it being so rare diagnosis and treatment are very frustrating. Once I have something more then the oral surgeons x-ray I can get in to the head and neck surgeon. Keep in touch. Misery loves company right!
for that appointment. Counting the days, hours and minutes for sure!