I seem to have nothing but time on my hands while I await for surgery scheduling and spend a lot of it studying and searching this forum. In the midst, the pain is really unbearable most days despite trying to keep busy with other things. Last night I took a brisk walk just to cry in peace and say a prayer.
Some of the pain I understand. Some I don’t. For example, I get how nerves are compressed and in my case causes the tongue burning. But what accounts for the muscle-type pain deep in the neck or the horrible feeling of one’s inner ear feeling full or like it’s being pulled to the point of no return?
Similarly (and rhetorically), I think what the calcification rate could be. My CT that was used to diagnose last week is 14mos old. I wonder how much longer/worse things can get in that timeframe. Symptomatically, I’d dare say pretty bad hinged on how I feel.
I also wondered what on earth caused my disposition because I haven’t had any major head or neck trauma and overall am quite healthy. Then it hit me (no pun)…at the sweet age of 14 I took a softball line drive to the face. Braces saved most of my teeth but it was ugly and dentally I have paid the price. I bet this is a good culprit.
As a general thought, I can’t be the only one going into this feeling doubt or fear that it won’t help. Any words of wisdom?
Hi my friend,
First off, I don’t think anyone on our forum hasn’t had the fear that surgery might not change anything. For a rare few, that has been the case, but the VAST MAJORITY have had some level of relief from symptoms, & so often, the most significant symptoms retreat completely or reduce to a tolerable level. There is always a risk that surgery won’t produce perfect results, but it is so worth it to try because when surgery does make a big difference, life is restored.
The pain in your neck/shoulder is most likely coming from your accessory nerve (yup, it’s a cranial nerve & one that gets irritated by an elongated styloid) which innervates muscles in your neck & shoulders. When neck muscles get tight or aren’t functioning right, shoulder muscles try to come to the rescue & do jobs they weren’t meant to do & pain is the result.
The nerve that’s probably causing your ear sensations is the trigeminal nerve (another cranial nerve often irritated by ES). It affects the ear, face, eyes, nose, teeth, forehead & can cause migraines. It’s pretty much all over the place on our faces.
I hope you get the call soon with a surgery date. Waiting is so hard! I’m glad you have a surgeon & are on your way toward a happy ending.
I’m sorry you’re suffering. I’ve had and still have all the same doubts, almost a week out from surgery. For a long time I just thought everyone feels this crappy or it was something I did (posture or not enough exercise, stress…) in addition to the nerves I think a lot of pain can be caused by blood vessels being compressed. Not sure what your imaging showed but I felt so much less pain while taking a blood thinner. That really stumped me. Never figured a compressed vein could cause that much pain. One reason I wanted to do the surgery is pure curiosity… I just needed to know what was going on in there. And my gut said, it’s related to this. I also needed to at least try to be the best I can be. I think a lot of my concerns of feeling worse after surgery or surgery not helping were alleviated by knowing that I had an experienced surgeon on board who was going to see it through. If I still have pain after surgery I know he will not leave me out in the cold. This group can help so much with reassurance about who is experienced and has a track record of success. Not sure who you’re seeing but if it’s someone recommended on this forum, you’re in good hands.
I also don’t really know what caused it for me. I’m only 31. I know I had a really stressful job for a while, was in an abusive relationship and have been in a few car accidents. My doctor kind of said, there doesn’t need to be one definitive cause, and it can come on suddenly or slowly. I could have been born this way or could have slept in a bad position or my anatomy could be scrunched up from a variety of small traumas. I doubt I’ll ever really know, but I know there is light at the end of the tunnel and you’re almost there. Hang in there. Try not to let the doubts eat away at you, and trust your gut intuition.
Isaiah, thank you for the boost of encouragement. I’m going to revisit your words often. Sort of a positive self-talk reminder. And the explanations & photos make perfect sense…especially visually seeing where the accessory nerve runs. Very helpful, thank you!
Blossom, you’ve touched on so many good reminders. I feel like I know these things but it takes to be reminded, and sometimes often as we navigate for what seems like forever through some scary things trying to find answers.
My word, like you I constantly wondered what I was doing wrong! Everything you mentioned and then some. I almost bought new living room furniture because in the beginning it was very positional and really noticeable while sitting on a soft surface like my couch. I was like Goldilocks trying out all our furniture trying to figure it out!
I’m seeing Dr Omlie from the list here. I have a great deal of faith in him but my reservation comes in from having been told over a year ago my symptoms were from reflux (which I had and imho was likely related to this ES). They encouraged me to proceed with surgery if my symptoms didn’t ease with meds.
Surgery it was and afterwards they symptoms were still there and 10-fold. They blamed it on everything, ultimately telling me I had anxiety and if I could control that, the pain would go. So I’ve been down this path before where surgery didn’t work based on a poor diagnosis.
To this point, I have a radiologist, a PT and Dr Omlie all agreeing on elongated styloids…not as long as some and perhaps longer now than when my CT was done. I’m also meeting with Dr Ondrey from the list on Thursday. I have low expectations but at least I can get more feedback and hopefully help me solidify confidence that this is the right direction
Thank you for taking time to share your thoughts, experiences and encouragement. It’s truly valuable and there are many times I silently read here wishing I could reach out and hug so many and for so many reasons.
I am sorry for what you’ve been through in the past, Tjmhawk01, especially the blaming that went on when your reflux surgery didn’t help. It doesn’t seem professional to me when a doctor’s procedure fails to produce the desired results & the blame is put on something the patient is perceived to be doing or doing wrong. That puts guilt on the patient which only adds to stress, anxiety & very often worsening of symptoms. Encouragement would be a better course for doctors to take & further examination of the situation to try to find another cause for the symptoms.
You likely know this now, but since the vagus nerve affects gut function, & is often affected by elongated styloids, many of our members have been diagnosed w/ reflux & been Rxed meds for that. In most cases, the meds haven’t helped. I think a few others have also had unsuccessful surgeries as you did. My hope here would be that styloid removal will ease pressure on your trigeminal, accessory, glossopharyngeal & vagus nerves & any others that may be contributing to your symptoms. Though they may take their time recovering after surgery, they will be happier, & you will be, too, as your symptoms fade away.
I hope your appt. w/ Dr. Ondrey is helpful. Remember, a different doctor may have a different opinion & approach. If that’s the case, you will need to consider which one is best for you. I will pray the decision is easy.
Thank you, Isaiah…
Indeed this site is where I began putting the misdiagnosis pieces together.
Knowing what I know now, my belief is that all along the reflux I was experiencing (mild LPR symptoms) were due to Vegus nerve irritation which was very intermittent until the ear/neck pain began. I can’t fully blame my GI surgeon and ENT because ES isn’t in their spectrum of knowledge being so uncommon.
This said, I do feel my ENT should have put the pieces together that my symptoms were not nearly severe enough to cause the throat and ear fullness/pain I was complaining of. That would’ve been tip-off #1. And I wholeheartedly agree that a surgeon never should blame/discount anyones pain to their mental health. This is a cop out for not having answers and a quick way to wash his hands of the issue. My current PT listened to me explain this and she was so distraught over how this incident was handled that she grabbed my hand and just prayed (I love her compassion so much!)
It’s all upsetting that ES isn’t often recognized. But I don’t hold animosity for them not knowing. Odds of them seeing another ES patient in their career is slim to none. But you can bet that if my ES surgery provides relief I will be submitting a letter to educate them with hopes it will make them better providers. I look forward to this day
Your attitude about all that’s in the past is great! I love your PT’s response. So compassionate!! YES! to the letter, too. We’ve had other members who’ve found satisfaction in being able to send similar info to doctors who passed them off or sent them to psychiatrists claiming their symptoms were “all in their heads” (which in some respects they were!! ).
Your PT sounds great! So sorry that you’ve been through so much to get to this point…Isaiah has given you some good info, I’d just add that ear fullness can be caused by vascular ES too; I had both jugular veins compressed & that caused head and ear pressure. The muscle pain you describe could be tense muscles from the inflammation, some members have found that muscle relaxant meds help, might be worth a try if you haven’t already? Alongside ES, I had a prolapsed disc, and between the two had a vicious circle or pain/ tension/ nerves trapped & more pain…PT did help with that, some very gentle neck stretches.
Yes, I think we all have had fears going into surgery; I was fairly confident that it would help the vascular symptoms, & it definitely did, but I was concerned about nerve damage & how painful recovery would be, but all was fine.
I really hope you get to send that letter- I wish I could’ve been a fly on the wall when the original doctor I saw- who told me that the styloids couldn’t compress blood vessels- got the results & CT report showing bilateral jugular compression!
Thank you, Jules. There certainly is no “one size fits all” where symptoms are concerned with ES, is there? And herein lies half the problem with getting diagnosed, I can see.
I’ve communicated with a couple of specialists whom Ive had extensive treatment with and have developed a more personal relationship with to let them know where I’m headed with this. And the one thing I mention is if they’re interested in learning more about ES, even reputable websites like Cleveland & Mayo Clinic’s are less than informative. Instead, I’ve referred them here…to read and learn from people who’ve had front and center experience.
I’m happy to know there’s a greater chance of success than not…and so many here have attested to that! I’ve downloaded an app to my phone that will share positive thinking practices daily. This I know is an important step (for me) to be more cautiously optimistic than overly pessimistic. And who couldn’t use positive thinking practices anyway
I have long promoted the power of positive thinking on here, so I’m glad we’re on the same page! Even when surgery doesn’t produce the perfect results we hope for, approaching the residue from a positive mindset helps any leftovers to be more tolerable. It’s also very important to consider the good things that did come from surgery & let those be more present in mind than the negatives. We all seem to come away with a little something that helps remind us how far we’ve come compared to where we were prior to surgery. I am thankful for those in my life.
Blossom brought up a good point. Often as patients we do blame ourselves…what am I doing wrong? Am i causing this pain? Until more studies are done on ES, many of us will never know what caused this. Doctors compound this by blaming the patient when in fact they just cant figure it out…rather than refer you out to someone else to get a different perspective putting them on the merry go round of self-blame. We all have come a long way and I am so thankful we have this blog to support each other thru this.
Still awaiting a date. I received a message from Dr. Omlie’s office that they are still awaiting the coordination of schedules with the oral surgeon.
In the meantime, I’m finding a reprieve in symptoms. Still having the neck tension & crackling but it feels less. And the tongue burn is nearly nonexistent. This has never happened in the last 18 mos that Ive been dealing with this. It’s sadly giving me this false sense of hope that this will magically go away. But I know it won’t.
I have my updated 3D CT scheduled for late Friday. I’m hopeful this will continue to solidify this path I’m on.
Really good that you’re finding symptoms have eased, enjoy it while it lasts! Sometimes members have found that symptoms settle for quite a while, who knows why!
So glad your symptoms have calmed down for a bit. I hope that lasts until you have your surgery! Yes, symptoms disappearance can be deceptive, but it can also help state of mind going into surgery if you’re not in horrid pain.
YES! God is good!! I’m so glad you now have concrete evidence/diagnosis to work from. I hope that surgery date is offered to you very soon. You’re in a good position with having chosen a great doctor who is willing to help you. Now for the next step…God will provide the perfect timing.
Indeed, good you have confirmation with the report!
Congrats Tjm! You finally got the answer you need to move forward. There is nothing like verification that it is not all in your head
Snapple2020 (and Isaiah & Jules), yes!! Certainty that it’s not in my head is exactly it!
I read this report and there’s this definitive answer and these (happy) tears just flowed! Who’d be happy about this other than now there’s a concrete path forward.
No more going from doctor to doctor, specialist to specialist and consuming my days with seeking answers. No more hiding in bathrooms to cry because the pain is so bad and not knowing why. No more wondering what I’m doing wrong. I’m already beginning to feel as though I have my “old self” back: my smile, my sense of humor, my strength, my emotional well-being!
I can hardly wait to share this wealth of knowledge with those specialists who let me down early on. One small step that may prevent the next person from having to go through the seemingly endless search for help.
And these miserable symptoms have even eased up affording me functional days. I must have some amazing Angels working hard for me right now!
Now I suppose I can begin to set my sights on the next set of unknowns
I cannot say enough what an amazing gift of support this forum has been. There’s no way I would’ve come this far in such a short time without the knowledge/advice/kindness I’ve obtained here. My heart is full!