I’ve had horrible dizziness since early childhood and I’m 35 now. My dizziness is kind of low level and constant. Some things make it much worse, like driving or being in a car. I’ve never been able to drive for more than 20-30 minutes without head pressure and dizziness behind my eyes.
I had my tonsils removed at 18. Since that surgery I’ve had a feeling of something stuck in my throat, mostly on the right side, and I get unproductive coughing. I also have facial asymmetry, horners syndrome and cluster headaches. I was told by doctors everything is fine. I had an upper endoscopy about two years after my tonsillectomy which was normal. I also get extremely hot at random times.
I’ve had whooshing in my ears that comes and goes since I was a kid. It doesn’t bother me but I figured it’s worth noting. About 5 years ago I started to get what feels like fluttering in my ears. Almost like spasms behind my eardrum. I’ve also noticed when I’m dizzy my jugular vein kind of sticks out.
I recently learned about eagle syndrome so I’m not sure if this could be worth looking into or not. For years I’ve tried to get a doctor to send me for an mri/ct scan but nobody thinks it’s necessary. If I go to primary care it’s an endless game of referrals and waiting that leads to nowhere. I never tell doctors all of my symptoms for fear of sounding crazy, plus they’re always rushed so it’s not like I’d have the time to.
Sorry for the long post! I guess my questions are does this sound like it could be eagle syndrome? Can eagle syndrome cause dizziness/car sickness at such a young age before having a tonsillectomy? And if so, how on earth do you navigate the medical system to get tested? I’ve had two neurology appointments in a row cancelled by the provider so I made an ent appointment and the provider cancelled that too this month. I won’t have insurance for long and I rarely go to the doctor. I haven’t been to a doctor in 3 years because I was so fed up with trying to figure this out before and wasting money while getting nowhere. I’m finally trying again but my appointments are being cancelled. How did you guys even manage this impossible system? I’m in Portland, Oregon if that matters. Thank you!!
Welcome to our forum. I’m glad you found us. I’m really sorry for the lack of help you’ve had getting a diagnosis & especially for the several recent appointments that were cancelled by the doctors. That seems to lack professionalism especially if rescheduling wasn’t offered in each case.
I can’t say for sure that the head pressure & dizziness when driving are possible ES symptoms, but if you do have vascular compression, the stress of driving, your head position/overall posture in the car could be what exacerbates those symtpoms.
I’m more concerned about your Horner’s Disease diagnosis as that can be indicative of internal carotid artery (ICA) compression which can be caused by an elongated styloid or calcified stylohyoid ligament. The feeling of something stuck in your throat is often caused by an irritated glossopharyngeal nerve, & the coughing by an unhappy vagus nerve which also helps regulate body temperature, but there can be other reasons for body temp inconsistencies. Facial asymmetry, though rare, has also been seen w/ ES, but I’m not sure of the cause - perhaps the facial nerve is being compressed or irritated. The nerves I mentioned are among the 7 cranial nerves that can be impacted by elongated styloids &/or calcified stylohyoid ligaments & which cause the symptoms often used to help diagnose ES. The internal jugular vein (IJV) & ICA can both be irritated or compressed by the the styloids/s-h ligaments, as well, which adds another dimension to already uncomfy & hard to diagnose symptoms.
I had an upper endoscopy prior to my ES diagnosis because I started choking on my food when I ate. Mine also came back clear. I never did have the sensation of a bone or something poking me in the throat.
I’ve had tinnitus in my ears since I was a kid, though I wouldn’t describe it as wooshing, & thought everyone had that. It wasn’t until I became an adult that I learned it’s not normal. There is something called Middle Ear Myoclonus which is caused by spasming a couple very tiny inner ear muscles. This could be what’s causing the fluttering sensation. I have MEM of my stapedius muscle so I hear a clicking sound when it gets going. I learned that the facial nerve innervates the stapedius so connecting the dots, it makes sense that could also possibly be related to ES. Here’s the first link that came up about MEM. It purports that both the stapedius & tensor tympani work together to cause MEM, but my ENT told me it’s one muscle or the other, & the sound/sensation caused by each one is distinct so the muscle in question can be diagnosed via sound/sensation. Middle ear myoclonus: Causes & treatment | Miracle-Ear.
It’s really sad that you’ve been so put off & rushed by the doctors you’ve seen that you haven’t felt comfortable sharing all your symptoms. That is also not good medical practice in my book, but too many doctors don’t make the time nor offer the consideration they should for their patients, especially patients w/ more complex symptoms.
Your symptoms do sound like they could be ES, and yes, those symptoms aren’t necessarily caused by a tonsillectomy. The youngest member on our forum began having symptoms at age 8. He’s 20+ now.
In addition to tonsillectomies, in some cases, ES is suspected to be hereditary, in others it’s thought to be caused by a jaw, neck or head injury. It can possibly be hormone related (parathyroid dysfunction), potentially posture related, & there’s even speculation that having had braces to straighten the teeth could cause ES by changing the position of the jaw joints thus putting excess pressure into the neck.
These 2 doctors on our Doctors List are in your state & have both had positive reviews on our forum. I would recommend getting an appointment w/ one or the other (whomever you can see first!) as you’ll get further w/ a diagnosis that way. You can use the search tool to find posts about them. Just search their names:
•Dr Andrew Patel, PDX ENT, Pacific Northwest Portland 503- 222- 3638 (Otolaryngologist) https://pdxent.com/
•Dr Joshua Schindler, 3303 SW Bond Ave OHSU Northwest Clinic for Voice and Swallowing, South Waterfront Center for Health and Healing Building 1, Suite 15, Portland, OR 97239, Has apparently done 18 sucessful surgeries, intra-oral and external.
Finally, here are the links to a couple of very informative posts our moderator @Jules wrote which will give you more thorough information about ES symptoms:
Certainly some of your symptoms could be due to ES; @Isaiah_40_31 has given you some great information & I agree as she says we have had younger members with ES, maybe it’s something you’ve had for a long time & it could be that the tonsillectomy caused more aggravation & inflammation…a CT would show whether your styloids are elongated, & if you could get a CT with contrast then that would hopefully show if there’s any vascular compression. You could try printing off a research paper or two which show your symptoms- there are some links in the Newbies Guide Section which @Isaiah_40_31 has posted links to, & we also have a research papers section: Latest General/Research Papers topics - Living with Eagle
There is also a section in the Newbies Guide about what else it could be, if you don’t get anywhere with an ES diagnosis then it might be worth looking at that, but I think based on your symptoms it’s worth exploring Eagles…
I hope you get somewhere, thinking of you
For example this paper mentions vascular ES symptoms: Styloidectomy and Venous Stenting for Treatment of Styloid-Induced Internal Jugular Vein Stenosis: A Case Report and Literature Review - PubMed (nih.gov)
And the feeling of something stuck in your throat is probably one of the most common & well known ES symptoms, so there should be plenty of mentions about that in papers, or otherwise print off info from online.
There’s also a section about advocating for yourself which might help you get the testing you need: Latest Patient Self Advocacy topics - Living with Eagle
I don’t know too much about the US system as I’m in the UK, but could you get your PCP to refer you to one of the doctors above? Other members have had panoramic x-rays from their dentists which can show they styloids, have you ever had one of those? Or is that something which might be easier to get done if your provider cancels appointments?
Oh wow! Thank you sooo much. You are beyond helpful. I appreciate it more than you know.
I assumed it was my jugular vein that sticks out, but it could be my carotid artery so you might be right. I have it on video to show the doctor. It’s a blue looking neck vein or artery that beats. I started taking pictures and videos of everything a while ago so I can show signs/symptoms if I need to at an appointment.
It’s also weird that you mentioned parathyroid issues and that it’s genetic in some cases. My aunt had parathyroid surgery. I also have two male cousins in their 30s with somewhat similar signs/symptoms to me but their symptoms started much later in life than mine. They can’t figure out what they have either. I should ask if they’ve had eagles ruled out. All three of these people are on my mom’s side but none of us are immediate family members to each other. I never suspected anything hereditary, but it could be possible.
I was able to schedule an appointment with Dr. Patel. He’s booked up until October which is unfortunate but its expected in my area. Thank you for the doctor recommendation and all of your advice.
Edit: never mind. Dr. Patels office just called me and said they were cancelling the appointment because my insurance requires a referral and I didn’t have one. I explained that my insurance didn’t require referrals. She still said I’d need one, which makes no sense, especially since they use zocdoc and they let people book online.
Thanks! I actually made an appointment with one of the doctors suggested for October. I’m really frustrated though because they just called me back and told me they were cancelling the appointment because I wasn’t referred to them. She said my insurance required a referral. I explained to her that my insurance did not require referrals. That’s why I picked the plan I have. Then she kind of paused and said that their clinic requires the referral then. Which also makes no sense because they allow people to schedule appointments at their clinic online. I’ve never even heard of that before… normally doctors only require it because the insurance requires it. Not the other way around. I guess I will try to find another doctor. I appreciate your response though and I will check out the links you provided. Thank you so much.
That’s super annoying about the office requiring a referral. It might be worth it to ask your PCP to refer you to Dr. Patel if you have a good relationship with him/her since there are so few experienced ES doctors in your state.
I expect they let patients make appts online then do what they did to you & cancel their appts if they don’t have a referral.
Your story has some simmilarities to mine. I also feel significantly worse when driving because my already tight and huge left SCM tenses up even more. Can you check your neck if one side is bigger compared to the other. My left SCM was injured at birth.
Also felt something pushing on the left side of my throat. Low dose of botox in my left SCM already gave relief.
Your tight neck muscle doesn’t have to be the SCM so have a thorough check.
I hope that you can get this referral/ insurance sorted out, that’s so frustrating As @Isaiah_40_31 says, could your PCP refer you? It does seem weird that all these appointments you’ve had keep getting cancelled? If you are able to get to see Dr Patel, maybe ask to be put on a cancellation list as that’s helped some members get seen sooner…
Is that this? I had to google scm because I’m not familiar with it. This isn’t the jugular vein I talked about in my post though. If it looks the same as what you’re referring to what kind of doctor does Botox for that? Did you also have eagles?
This is a picture of me looking straight into the camera. It does not nessecarily have to be the SCM that’s tight for you. It could also be the scalenes or trapezius muscle, I’ve read of people feeling dizzy who have issues with those muscles.
Of course it could also be elongated styloids but feeling worse while driving a car made me think of a muscle issue.
It’s weird for sure. This is the first time I’ve ever experienced cancellation issues or anything like it. I have my own theory as to why but I won’t get into that. Primary cares here are backed up so unfortunately I don’t have one at the moment. I shouldn’t need one anyway, my insurance confirmed this to me so it doesn’t make sense. It was starting to make me feel like I’m on some blacklist or something lol. But I haven’t been to a doctor in 3 years so I know that’s not the case. I’m also seeing that it’s happening to other people too, not just me.
What you see “bulging” in your picture certainly looks like your right SCM, @Dizzy, so what @IvdM is suggesting about his own case may be applicable for you, too.
Our member @wolfjohne22 just posted about his disappointing appt. w/ Dr. Patel, but in his case, I think it’s good that Dr. Patel declined to help him because he may have vascular ES with IJV compression. With the symptoms you’ve mentioned, that might not be a problem for you in which case Dr. Patel would be a good surgeon for you to see. ICA compression is more straight forward to address because it’s usually lower in the neck. I only mention wolfjohne22’s story as it’s good to “expect the best, but be prepared for the worst” in any doctor’s appointment. When one door closes, another will open.
I should have followed up more punctually on this comment you made. One of the potential causes of ES is heredity. We have several adult members who have children who have ES apart from any surgery or known head/neck injury. The parathyroid can be implicated because it’s the master controller for blood calcium levels & when it becomes dysfunctional, Ca blood levels can become too high & so the extra Ca can get deposited in places it doesn’t belong. Not saying that’s the cause for your family, it’s just an explanation. I don’t know if the others on this forum who’ve seen a familial connection have ever done sleuthing to try to ID a common health thread among the family members who have it.
Thank you! That’s good to know, I appreciate the time you’ve taken to give me all of that info. I’m going to look into all of this and try to figure out what to bring up to a doctor whenever I see one. I think just getting a ct scan initially (I’m assuming) is going to be the most important thing first so I don’t want to overwhelm a doctor with info or say some symptom that makes them want to refer me to physical therapy instead of doing a scan (this has happened a lot).
Ironically, I have a friend who does not have insurance and I just found out they have an appointment at Dr Patels clinic for something simple. They had no referral and were never told they needed one. Their appointment is still scheduled. I’m pretty sure now my suspicions were correct about something weird going on with the medical system and them prioritizing certain patients over others. There’s also a big shortage of anesthesiologists too here, so I don’t think they want people getting surgery unless it’s dire.
I’d call Dr. Patel’s ofc back, if you’d still like to see him, & maybe a different front desk person will answer & will give you an appt. w/o a referral. If you get the same song & dance, bring up your friend & ask why you’re being singled out for a referral. Self-advocacy is vital when it comes to getting the help you need for ES.
@IvdM hey I wanted to follow up with something if you don’t mind. I remember you saying your shoulder was injured. Oddly enough I was asked if I had a shoulder injury at birth by one of my doctors when I was 19 (aging myself but that was 15 years ago now). I asked my mom, she said no and with that info my doctor ruled out whatever he thought I had at the time. Well, after your post a few months ago I asked my mom again and she again assured me I didn’t have any issues. I forgot about it and moved on.
Today just out of the blue she sent me this. She found it and she was shocked. She said she doesn’t remember any of it but she wrote it down right after I was born so obviously it happened. I suddenly remembered your comment from a while ago when I saw it because you said your symptoms were from an injury at birth. Our symptoms are also very similar. I’m just curious if you know what type of injury you had and if you’ve had any progress at all? It makes me think we both might have the same cause now that I know this. I would’ve said something back then when you mentioned it, but I was unaware of it at the time.
I guess your Mum was probably exhausted at the time so forgot about the worry with your shoulder…I hope maybe this doesn’t give you more questions than answers about your symptoms!
I still think it’s eagles. My thinking is if/when I have a mri if something else should be looked into or ruled out then I can make sure both things are scanned for. I haven’t been able to get an appointment though. I did go to an urgent care recently who said I needed an mri but he said due to his clinic policy he couldn’t refer me to get one since they don’t do referrals at the clinic. I’m most likely going to move and try to get medical care once I move states. It seems like my best option at this point. The state I’m in is very backed up, to the point where there’s just no good medical care here.
I’m sorry that you haven’t been able to even get started on finding a diagnosis for your symptoms @Dizzy. It’s frustrating when doctors are too busy with current patients to make time for new ones.
There is something called Middle Ear Myoclonus which is caused by spasming a couple very tiny inner ear muscles. This could be what’s causing the fluttering sensation. I have MEM of my stapedius muscle so I hear a clicking sound when it gets going. I learned that the facial nerve innervates the stapedius so connecting the dots, it makes sense that could also possibly be related to ES. Here’s the first link that came up about MEM. It purports that both the stapedius & tensor tympani work together to cause MEM, but my ENT told me it’s one muscle or the other, & the sound/sensation caused by each one is distinct so the muscle in question can be diagnosed via sound/sensation. 
As 
