I have been suffering with many many symptoms for years. They have evolved over time, which has made diagnosis even more difficult. I think the first symptoms started a few years ago with shortness of breath, hearing and visual disturbances and cluster headaches (my eyeballs felt like they were being pushed out from within!) I also had foreign object sensation and a “tired larynx.” The headaches went away and the shortness of breath comes and goes. Recently however I have developed a whole new set of symptoms, which are impacting my ability to function normally. I have shooting and achy pains in my neck. When I move or stretch my neck in any direction it feels like it becomes restricted or something is pulling. I have said repeatedly that I feel like I’m being slowly strangled. I have shooting electric pains in my face and pain upon my first bite of food or drink (especially any form of alcohol) I have ear fullness. I suffered from SSHL sudden sensioneural hearing loss about 10 years ago.) my mouth feels swollen and irritated- almost feels like it’s shrinking or something though everyone tells me it looks normal, it feels very different. My chin also seems to significantly recede when I lie down, like something is pulling it backward. I have occasional chest pain and arm numbness as well. I know it’s difficult to figure out what symptoms are what but ES seems to account for a lot of this. A recent MRI also shows scattered ischemia.
I uploaded a picture of one side of my panoramic. The elongation looks so sharp! Is this normal? (I mean as normal as something can be with something so abnormal) it looks like a knife or dagger! The results on the left side are similar. For the experienced person looking at the image, you’ll notice there are other abnormalities in the picture, mainly… I don’t have a TMJ! I had a condylectomy 10 years ago due to a significant Jaw injury I sustained. These things have to be connected… I can’t possibly be so unlucky to have all these separate problems with my face lol. The hearing loss, condylectomy, and now ES. I am going to contact Dr Milligan today (I live in Phoenix) and see if he can see me ASAP. I only have state insurance so it should be interesting. Thank you for helping me and being with me on this insane journey!
Congratulations on finding this forum and getting a diagnosis. Your story sounds sadly familiar, BUT I think you are the first person I have read about (besides myself) that the lower jaw retracted!!!
Oh my gosh so yours did/does too! That’s one of the symptoms I haven’t seen much and has been making me think I have some whole other weird issue going on- it HAS to be related.
Hopefully JustBreathe will read this and explain why this could be. My current suspicion, after your post, is that my post surgical pain in my lower left jaw has to do with the mylohyoid muscle having been contracted for so many years that it is the stretching, pulling and readjusting that is causing visible (to me and my family) swelling that loves ice and calms with it. I was thinking it was the facial nerve and my dentist thinks it has to do with the digastric muscle and free floating (for first time) hyoid bone. See once you get a diagnosis you get very specific in finding the cause of symptoms, what never, etc. It sure beats wondering “what’s wrong me with”!!
So there are two doctors in my area listed that deal with this (Dr Milligan and Dr. Neil/Mayo clinic) but I can’t even get in to see them without a referral and neither take my insurance- neither will do self pay consults- so yay for America’s frustrating healthcare system. I’m kind of at a loss on what to do next. I guess going back to my primary care dr.
We’re not doctors on here- have to always say that!, just people who’ve been through ES. The styloid isn’t the longest we’ve seen, but as you say is very pointed, angled & quite crooked too. Research shows that it’s the angle & the width which can cause symptoms, & the gap between the SP & cervical vertebral processes.
I’m UK so don’t know about the US system, but I know other members have been able to do phone consults with some of the experienced doctors on the list, like Dr Samji & Dr Cognetti, so don’t know if that’s possible for you? & there have been some members who’ve been able to go out of their network when there’s been no experienced doctors they can see in network, & get that paid for, that’s something you could search the discussions for info on. & hopefully US members can suggest something!
I had sudden sensioneural hearing loss years ago (wondering if there’s a connection now) but I cannot do phone consults (I’m almost completely deaf)
I am headed back to my primary care dr for a referral- I’m hoping it will be enough to see Dr. Milligan even though he’s out of network.
I saw Dr. Hayden at Mayo and Dr. Mirzadeh and Barrow Brain & Spine. Not sure if that helps.
Also I believe the Dr. Neil mentioned was at Mayo and is no longer there - he is in Orlando now (do not know where).
It does help! Thank you. I tried to get into Mayo but they’re tough to get into apparently. I will try Barrow it’s one of the best specialist hospitals in the country from my understanding.
Hi Jennstarr, Hopefully your insurance company will approve something out of network. Might have to be very persistent to get to a yes. If they will not pay initially for you to see anyone who is experienced in ES, you might think about approaching one of the experts on the list of docs who do phone consults and then – with clear diagnosis and treatment recommendation in writing from a physician – go another round with the insurance company. It might also be a good time to read your policy carefully and call the insurance company so you know with certainty what their rules are about out of network providers and out of state providers. My two cents:)
How do I approach one of these doctors though? From what I’ve seen so far, the drs won’t even communicate with you without a referral. I Had my boyfriend call Mayo Clinic, and Dr. Milligan’s and I couldn’t even get past the whole “we can’t help you because you don’t have the referral” thing. I even asked for a self pay consult, and they won’t do it.
My suggestion would be to have your primary care provider refer you a specific one of these specialists for symptoms and imaging that may be consistent with ES
I’m seeing her today. The problem is there’s no one covered by my insurance from what I can tell, so even with the referral they are likely to turn me away. When I lost my hearing I went through the same thing, and ended up with no answers. I hope things will go differently this time. I will be able to get into a surgical ENT most likely, but possibly not one that knows much about ES. I hate navigating the healthcare system, it’s extremely frustrating. Thank you for your advice! Hopefully it works out and I can get into the right person.
On a positive note… I do have access to the surgeon who did my condylectomy, he’s a maxillofacial surgeon and I can see him without a referral (he’s out of my network but one of the top maxillofacial surgeons in my area…Sabah Kalamchi) maybe he can do the necessary imaging and provide a pathway to one of the ES specialists.
You have quite the unique situation with the B chondylectomy! I am sorry for your plight, we have to jump through so many hoops, ughh. It sounds like your maxiofacial surgeon is a great place for you to go since everyone else is stonewalling you so far. Hopefully given his stature he will be versed in ES or at the very least has heard of it in some way and will have your full history otherwise which is challenging. It is always difficult when your anatomy changes so drastically. I commend you in your fight so far - really amazing!
Wish you the best of luck and will be thinking of you!
So frustrating! Hope the maxillofacial surgeon is somehow your magic ticket