New to this new ES world

General
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Hi everyone…I am so happy to have found this group!!! I have been reading as many posts as I can over the last few days…you are all rock stars. Thanks Jules for the private messages of support - much appreciated.

Long story (as like everyone else :-)). In short…my symptons are:

  • I have been struggling for years to open my mouth - I really struggle going to the dentist and have had to take Tramadol before going, in the hope that I can keep my mouth open without pain. I also struggle to close my mouth straight as the mandible shifts to the left when I try to close my molars. This causes a clicking and a sharp pain up through the jaw joint to my temple and eye.
  • I have neck pain which I put down to a car accident back in 2010 but nothing shows on xrays. I was at home last year for a week unable to move with awful shooting pain in my neck (both left and right) and was taken to A&E and given double strength tramadol and 2 volataren shots to relieve the pain. Since then, I have a few recurrences but I get to management very quickly and have managed to avoid a repeat of last year.
  • A “funny” feeling in my right ear - like numbness but not, or like I have been hit and there is that dull widespread fuzziness in sensation in the cheek and ear region. When I scracth my skin by my ear, I can feel it but it feels like a dull sensation rather than a clear “scratch”.
  • A weird lump sensation under my chin which has been there for at least 5 years - I thought this was a recurring cyst from occasional blind spots on my face but it sits just above my hyoid and I can feel it when I put my chin down but am not able to feel it from the outside if I use my finger over the skin. So - something inside getting in the way of being able to put my chin down. Not painful but uncomfortable.
  • I have been unable to turn my head to the side (both left and right) for years. If I am sitting on my bed and I need to look at something hubby wants to show me and he is slightly behind me to my right, I have to actually get off the bed and face him front on as I am not able to move my chin past my shoulder.
  • Terrible headaches up through my right temple, behind my right eye and into my forehead.
  • Loss of sight in my right eye occassional (a few weeks ago actually).
  • A hard lump - small - about 1cm (that moves so not a tumour) on the right hand side of my neck. Not visible or sore but can feel it.
  • A couple of times I have felt like there was something in my throat - but like deep down - not in the field of vision when I open my mouth.
  • I have had 3 bouts of loss of consciousness over the last 4 years - collapsing in public with sudden loss of consciousness (doh - fainting!).

A few other things:

  • I have a hiatus hernia which has caused issues for me with swallowing - diagnosed 4 1/2 years ago. I take no meds for this though as I do not struggle with reflux. This could have resulted from the aforementioned car accident in 2010.
  • I have recurring kidney stones since 2012 and have had 3 bouts of urosepsis (1 in 1996 and 2 since 2012). Have been stone free since Feb19. I have medullary sponge kidney which I have since researched means I have a pre-disposition to the formation of kidney stones.
  • I am severely aneamic but manage it with regular iron infusions.

Anyway - all the stars aligned. I went to the dentist a few months ago for routine dental work and cried my way through the appointment due to me jaw being so sore. It felt like I was being stabbed in the temple (granted I do not know what that actually feels like!). My wonderful dentist referred me to an oral specialist, who I saw 3 weeks ago. I had an MRI that revealed my left condyle is longer than the right and that I have a disc issue on the right due to the misalignment of the jaw caused by the longer left side. I need a mouth guard that will offer relief at night (I don’t grind my teeth but they want to relieve the pressure on the jaw).

As part of my follow up visit with the specialist, she asked for a CT Scan to check the TMJ properly. It was as part of that scan they diagnosed “ossification of the stylo-hyoid ligament on the right extending to the level of the hyoid with its tip in the submucosal location adjacent to the right vallecular margin…consistent with Eagle’s Syndrome.”

In speaking with her yesterday, the only option is surgery now and I am awaiting the urgent meeting with the surgeon on Monday (07Dec). I have done as much reading as I can and now I guess I am worried. The op risks, the scarring, the recovery, the risks more than anything…I am not too worried about the scarring but more about the dangers of the operation (appreciating that they are different for intraorally and externally) and the recovery…

I have no idea if my surgeon has even dealt with this before (given the stats, I worked out that only abut 40 people have this at any time in New Zealand). I have so many questions…

Not sure if I should even consider the surgery route if the symptons I have listed above are livable. I have put up with these symptons as I measure everything against renal colic which was @&*(^#&^% horrific!!! Pain scale at times was 15/10. Whereas these symptons have been 5/10 (the dentist visit took me to 9/10 I would say). But as isolated symptons - are they livable? How do I know?

The other point (sorry) - I am hypertensive. My “lovely” doctor with FA bedside manner told me that I was obese and that fat people do not have any self control to bring their BP down without meds. I lost 21 kgs (42 pounds) and my BP went up. Now in my reading I am wondering whether this is actually carotid sinus hypersensitivity. So I had no hope of ever managing my BP without meds, despite weight loss, exercise and healthy eating regime…

Whilst I have been writing this, I am seeing so many connections - things that I thought were unimportant/non-related. No doctor has put any of it together, and I didn’t either, and I was always worried about listing everything because I saw all of it as my fault. Embarrassed about my weight…

Anyway - I will know more of my next steps in the coming days. This is all so completely new to me and could a storm in a teacup and the surgeon would say “nah - nothing required”…mmmmm we’ll see!

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Hi EagleEye20,

We actually have another member from NZ but had no one to refer him to as we have no doctors on our list from there. I’m excited to read that you have found someone who may be willing to operate on you to help relieve your ES symptoms. It sure sounds like you’ve been through the ringer w/ symptoms and so many of them are common to ES (as you’ve probably seen while reading through old posts).

My thoughts about your symptoms are these: It sounds like you could have vascular ES (compression of either your internal carotid artery or jugular vein) indicated by your fainting episodes, vision loss & potentially your headaches. I will say your headache descriptions also sound like they could be from facial &/or trigeminal nerve irritation as well. These are two of six of our cranial nerves that are often annoyed by ES. Vascular compression is something it is not a good idea to try to “live with”. It will most likely get worse over time & symptoms will become more severe.

As far as your blood pressure & heart rate go, they are controlled by the vagus nerve in large part. The vagus nerve is another cranial nerve frequently irritated by ES. I had blood pressure drops when I exercised which caused my heart to race crazily so I would feel like I was going to faint (though I never did). Other members have suffered from high blood pressure which did lower after surgery. This isn’t a promise yours will, but it’s a possibility.

Even if the surgeon you see has never done an ES surgery, if (s)he operates in the area of the neck/throat where the styloids are on a regular basis, then there is a better chance of you having a good outcome. Scars are mostly minimal from external surgery as they’re often made behind the ear or in a neck crease(s). There are links to research papers about ES on our home page. Printing off a couple of those where patients have had symptoms similar to yours & taking them w/ your appt w/ the surgeon can be helpful. There are also very experienced surgeons in the US, Great Britain, & perhaps Australia who your surgeon could consult with prior to doing the surgery if there are questions.

I’m sorry your doctor wasn’t kinder about your weight. You’ve shown that you do have self-control by losing 42 lbs. I applaud you :clap:t3:! We all have our vices. That’s for sure.

For further information about the cranial nerves affected by ES you can look at the YouTube videos called 2 Minute Neuroscience. The nerves ES most often affects are the facial, trigeminal, glossopharyngeal, hypoglossal, vagus & accessory. Here’s the link for the trigeminal nerve to get you started: https://www.youtube.com/watch?v=FhbQBrX3Kq0&t=13s

Please let us know how your appt goes w/ the surgeon. We’re here for you.

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Thank you so much Isaiah for your comprehensive reply. I’m stunned that so many of the symptoms I’ve been experiencing could possibly be explained by this condition. There is a part of me that is looking forward to Monday to have the conversation with hopefully someone who knows what they are talking about. I’ll definitely take some extra reading in with me. My weekend plan is to do as much as reading as possible.

I will absolutely keep this group posted as to next steps and will gladly share details of the doctor IF he can help :).

Thank you so much. It’s great to be here :)!!!

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Hi im from australia also have ES in nsw sydney theres at least 2 ENT who have done the surgery
Dr Dilshard soodin is who i see hes say he knows a few who have done it PH 02 8014-9204
Mine dosent sound as serve as yours medication and not over doing neck movements have help it settle but im due back at work soon knowing my luck it will come back
Alway pain when snezing and yawning ex,
Good luck mate

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Hi EagleEye20,

Here’s a link to many posts that discuss ES symptoms. There are countless, really! Some are “typical” but many are individually unique.

https://forum.livingwitheagle.org/search?q=ES%20symptoms

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Thank you Isaiah - I’ll go read now :)!!

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Thank you Trevor for the details of the doctor in Sydney. I’ll see where I get to on Monday :). I am not sure 1) of my guy will recommend surgery and 2) whether he has any experience in this area…
Thanks again Trevor

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Interestingly…I went in for a surgical procedure this morning - completely unrelated.

When I was meeting with the anaesthetist and we discussed ES & I shared my CT scan report, she then flatly refused to do general anaesthetic. She called the surgeon in and they discussed the potential risks around needing intubation, neck movement, potential risks with airways and arteries. They eventually agreed on very heavy sedation and local anaesthetic …

I was at a clinic rather than a hospital and they were not prepared to take on the risk with their limited (although superior) equipment and facilities than what is offered at a fully equipped OR in a hospital.

Fascinating stuff!!!

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That is interesting, EagleEye. We have many members who’ve had surgery w/ general anesthesia for other health concerns after being diagnosed w/ ES but before ES surgery, & there was no problem. It’s really good that the medical staff who did your surgery today was so conscientious.

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I think it was more that they were not expecting it so were not prepared and as it was a clinic rather than the hospital, they were not happy to follow their usual process with no prep time for ES considerations.

The surgeon was surprised given the timeline. The procedure today was booked last Friday and my ES was formally diagnosed this Tuesday. So today they were all a bit unprepared to make any changes… I think they also thought that I’d hidden something when this one today was booked.

Actually when I was in recovery, I saw all the nurses were huddled around a computer researching ES. They then came round and sat with me and asked me all these questions. That was in between throwing up LOL. Surreal moment lol

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Good that you educated them! When I had my 2nd surgery there was a bed crisis & I ended up on an orthopaedic ward, same happened to me, lots of nurses coming for a look!
Glad they erred on the side of caution & hope you recover okay.

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Thanks Jules… :wink: x
It’s all fascinating - and at the same time - worrying, annoying given years of issues which I thought were unrelated and I was embarrassed to talk about given my kidney issues and BP… so I kind of just got on with things. Oh well.
Half my office are now educated on ES too lol

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Well done for losing the weight, hope you prove that rude doctor wrong!

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@Isaiah_40_31 are you able to point me in the direction of the other NZ user so I can reach out via this forum? Our total population is only 5m, so the “available” pool of other sufferers I can talk to regarding surgeons here etc. is about 80 people at most…

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There are several members from NZ on our forum though none are very active at the moment. You can write a post & title it something like - Calling All New Zealand Members. Below are two that I found, but I know there is another person who joined not too long ago. Just can’t find his screen name right now.
You can also use the magnifying glass icon & type in New Zealand to see posts that come up w/ NZ mentioned in them.

By clicking on the screen name as it appears above one of their posts, you can privately email the two members below & have a more personal discussion.
Lofty99
AshWaters

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Thanks for that Isaiah :)!

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Hi… so as an update…

I saw my surgeon on Monday. The meeting went really well. As part of the appointment he decided to take a look down my nose and throat with the camera. I wasn’t expecting that so that was a bit of a surprise and hurt quite a lot. He wasn’t able to get the camera further down the back of my throat on the right hand side but was able to do it through the left.

As part of the consultation he asked me to run through all my symptoms that I have experienced over the last couple of years. He did ask me what my pain levels were like and I explained that my point of reference is renal colic. So anything to do with eagles pales in comparison. Having said that, there have been days and isolated incidents where the pain has been quite bad in my head or neck or under my chin. But I still would’ve put this as a 3 out of 10 if I compare to renal colic which was 15 out of 10.

He showed me my scans and confirmed that I have complete ossification of the stylohyoid ligament from the styloid process down to the hyoid bone on the right, with mine poking into my airway and oesophagus. He confirmed that the sensations I’m getting in my right ear and below and above my right eye are consistent with pressure on my carotid artery and vagus nerves.

He confirmed that this would absolutely need to come out and he will be doing the surgery on the 15th of January. He will be doing this intraorally but will not be doing a tonsillectomy. That’s his plan A. He’s asked me to prepare for Plan B which would include the external work on my neck. The same time as this, he will be fixing my right jaw joint as well.

I have a number of questions which I will be going back to him with. This includes confirmation from him that he’s actually done this operation before. I did ask him in the session but there is a small niggly part of me that believes he was slightly too gung ho.
But I’m trusting in the process, and figure that even if I am his first, he will learn from this and my experience will go on to help others.

I’m experiencing mixed emotions at the moment. On the one hand I am terrified of the operation itself, and the pain afterwards. And in the potential for any damage. My symptoms at the moment are livable and I worry that having a very risky surgery could cause irreparable damage to me and therefore my life. But, I am trusting that the surgeon has told me that this cannot remain in my neck and is putting me at significant health risk, and therefore needs to be removed, regardless of whether my symptoms are livable or not.

On the other hand, I count myself exceedingly fortunate on a number of fronts:
• The first being that this isn’t cancer. So I go in, I have the operation, experience pain, and then I move on with my life (not in any way to minimise the pain and suffering of any Eagles sufferer);
• The second, through the support of this group and through as much reading and researching as I could possibly find, and through finding the right dentist/oral specialist, the entire length of time from initial finding to action plan is eight days. This is incredible and I do not underestimate for one second how fortunate I am;
• The third thing that I find myself incredibly grateful for is that I can have the operation here at home and not have to go overseas for it. This means that I’m on the same soil as my family which was filling me with horror that I might not be able to get the care I needed here at home;
• I have an amazing family around me who have all rallied to support me, hubby and my kids. But I know they are all suffering and struggling with this too. We’ve never been faced in my family with anything like this, and we’re all a bit stunned; and
• my employer has been absolutely fantastic. I’m on contract so the risk of losing any income when I’m not working is massive. This is adding to a huge financial burden that for the most part sits on my shoulders. But my employer has rallied around me and are doing whatever they can to support me. Given the world right now, this is not something that they need to do at all and I do not underestimate this either.

Again, this was a bit of a long message but I wanted to give you an update. I’m so grateful that I found this group, even though I didn’t even know this condition ever existed. I’ve read your stories, your questions, and your encouragement of each other and all I can say is that I’m in awe of the people that you are. I don’t know any of you, but I know that you’ve been on these journeys for a long time, and we are all facing our uncertain medical futures, made so much worse because of the challenging times that we live in right now. I have a new found appreciation for understanding the battles other people are going through. With my history of kidney stones going back now a number of years, I’d already come to realise that life can turn on a dime. I’d already made significant changes in my life to be always aware of that. And I did consider myself to be very grateful for what I had. And yet, here I sit, terrified of what’s to come, but surrounded by people who care, and want to help. And even more grateful.

Good luck everyone with your search for treatments/help/respite in the coming weeks. I hope you all have restful Christmas breaks and spend time with your families (and yourselves).

Hugs to all xx

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EagleEye20,

WOW! You’re very articulate! Thank you for sharing your experience w/ your doctor and your emotional journey. Your grateful & thankful heart will go far in helping you, whatever the outcome of your surgery. Being able to see good even in the toughest challenge is a gift. :blush:

If your doctor is experienced in operating in the area where they styloid process is, then even if you’re his first ES patient, your outcome will most likely help ease your symptoms over the months after surgery. That said, you are wise to question his experience. You are fortunate to have found someone near you who is willing to do ES surgery as our other NZ members have had no success as far as I know.

I’m glad you’ve found good information & encouragement from our forum. That’s why we’re here. Please continue to give us updates & ask questions. We’ll do our best to give you good support & guidance.

I’ll be praying for you as you make the decisions you need to going forward. Your doctor is right. With vascular compression caused by the styloid process, it is important to remove the styloid. Also, the vagus nerve is commonly affected by ES. He does seem to understand this “crazy bird”!

Thank you again for your sunshiny approach to life. I needed that today!

:hugs: :pray:t3:

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It does sound as if your doctor is knowledgeable about ES; many are unaware of vascular ES symptoms for example, so that’s a good plus point for him! I’m glad that there are positives in this with your supportive family, & employer.
So a good idea to clarify a few things with him; what experience he has of operating in this area for example- some surgeons if they operate in this area alot have to remove styloids to acess the area so are used to doing this, not sure about your doctor obvs.
I hope that you get the answers & can make the right decisions, your positive attitude is great!

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Hi Eagle,
Im on day 7 after my 2nd ES surgery and my pain meds are kicking in so forgive me for being short. Ill write more as my brain clears and I can follow.
Ive had alot of similiar symptoms as you and can offer some guidance of suggestions. What stands out is the pain from jaw up into eye joint,etc.
I saw a TMJ specialist right before I flew out for my second es surgery abotu 2 weeks ago. I have been having nerve pain in upper molars that start at the TMJ joint and the temporalis and masetter muscles have been locked up tight as a drum. (ive been getting botox, steriod and nerve block injections into these areas) My mandible shifting to left and worsening the past month and dislocating when I chew. The updated CBCT shows osteoarthritis in my right condoyle and is 50% less bone than on the left. The molars are not connecting on the left causing loading on the right molars. The bottom line is that my jaw is shifting left and back, as well as down causing the nerve pain from my TMJ joint back in my upper molars. My neck is also rotating left in the upper cervical region.
I had some early whiplash accidents and decades of neck instability with various bouts of chronic pain then the major pain flairs up the neck to the ear started about 5 years ago. Was diagnosed with the ES in Dec 2019 and had surgery 1 in April and the second about 7 days ago. (Its kind of a blur). Ive found that this needs a multi-pronged approach medically as it rarely is one thing that will be fixed by ES surgery alone. Many of us have lived with years of dysfunction and its hard to tease out all the cause. You sure seem like you have got a great running start on this and seeking out good advice. You are in the right place. I hope to catch up more with you as I recover the next couple weeks.

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