Greetings! About 6 months ago I started having the classic ES/LPR symptoms to include difficulty swallowing, ear pain, neck pain, back of neck pain, lump in throat, sore throat, hoarseness, discomfort after a lot of speaking or singing, etc. I went to the ENT who ordered a CT scan. Before going to a follow-up with the ENT, I thought it might be LPR as I have occasional heartburn so I went to a GI. The GI put me on pantoprazole which I’ve been on for a little over a month now. Had an endoscopy which came back normal. Went back to ENT to revie CT scan results and he said that my styloids are double the normal length. I recall him saying 4.3 in length. At any rate both docs recommended for me to continue on the pantoprazole to see if that clears up the symptoms. The ENT said if the symptoms don’t clear up we can talk about ES surgery. Went back to GI who said it’s highly unlikely for me to have LPR with a normal endoscopy and still have symptoms after being in pantoprazole for a month.
I’ve found eating some foods makes the symptoms worse than normal. Usually it involves bread, for example oatmeal wreaks total havoc.
At this point I’m just trying to self diagnose, ES or LPR? Has anyone had similar experiences or know of a way to differentiate the two? I don’t want to have surgery unless I am pretty confident that it’s ES.
I guess that you have to be guided by the ENT’s opinion about reflux, if it’s not improved with medication & nothing shows on the endoscopy then it could be ES. Lots of members get misdiagnosed with GERD before they find out it’s down to ES.
But also unfortunately doctors won’t tell you that surgery will improve your symptoms either as a) they don’t want you to complain afterwards if the symptoms don’t go, and b) lots of doctors don’t know much about ES symptoms!
There’s lots of info about ES symptoms & what might cause them in the Newbies Guide section- have a read through & you might find some others- for example ear pain is a common ES symptom, but not always known about…
Hope you get some answers soon!
Great! Thanks so much! My ENT said that the surgery he did for an ES patient was very successful and all of her symptoms went away post surgery. I thought that was a good sign!
The vagus nerve is one of the cranial nerves that often seems to be irritated by elongated styloids. It partially controls heart & gut function & anxiety level. There are a number of people on this forum, as Jules has noted, who’ve had GERD misdiagnosed because the actual cause of the GERD-type symptoms went back to an irritated vagus nerve. Once ES surgery was performed & the vagus nerve recovered, the digestive distress in most cases all but disappeared. You could privately email callove to discuss this as he had digestive issues as an ES symptom & recently had ES surgery. He has experienced some remission of digestive troubles post op.
Morning HighHopes…I developed GERD about a year ago and in the beginning I would eat a bit of salt to calm it. That sort of worked for a few months, but my salt intake was getting a bit out of hand LOL. And the “GERD” was literally choking me. I finally asked my doctor for some help/medication when just water seemed to be a problem. The medication works like a charm for me, but makes me wonder. I did not have an endoscopy to confirm or rule out anything…doc just took my word that I needed help! I can’t imagine what it would be like if there were no medication to help with that awful problem. Has anything changed since your last post?
My heartburn symptoms were quelled shortly after going (and staying on) a PPI. My other symptoms such as the feeling of a lump in my throat, ear pain, difficulty swallowing, face pain, etc. were steady while taking the PPI which led my docs to believe that I have ES (along with evidence of CT scan). I find the more active I am the worse it is. I’ve tried modifying my lifestyle to limit things that I know irritate it such as spinning. I’ve been weaning off PPIs for almost 3 weeks now. I had relief of ES symptoms the past week but they’ve come back. I’ve found that on days when my styloid is bothering me that I also tend to have heartburn. Diet seems to help, but like you said sometimes even water creates heartburn. I’m really thinking it had to do with my vagas nerve? On these days I take tums and eat alkaline foods.
I’m having surgery on 8/7 to remove my styloid so I’m really hopeful that it resolves both issue. It’s been a battle for about 6 months.
I’ll keep everyone updated on my symptoms post surgery.
Sorry KiZe6159, I forgot to respond regarding your endoscopy. If your symptoms went away, it sounds like it was acid reflux. I still had ES symptoms while on the PPI. That along with the endoscopy and CT results made my docs think it was ES.
Again, since your symptoms were resolved by the PPI sounds like it is acid reflux/heartburn but I also don’t have a PhD
Good news that you have surgery coming up soon! I think there’s a good chance you’re digestive issues & other ES symptoms will go when your styloid is gone. Please keep in mind that symptoms don’t always leave as soon as surgery is done. It may take a few months post op but in most cases they do disappear w/ time & patience. Sounds like you’ve found ways to keep yourself a bit more comfy on your bad days. Good for you!
Please keep us posted after surgery to let us know how it went for you.
I am so happy for you and your upcoming surgery…will be anxiously awaiting your post op comments. You and I seem to have a lot of the same symptoms. I do wish I could kick this reflux to the curb with the ES surgery, but I think you are correct in that mine probably isn’t caused by the ES. Never had an endoscopy, doc prescribed the PPIs without it when I told her water was giving me issues! As an aside…despite ALL of the symptoms I do have, tongue issues were not among them. Last week I experienced some odd low grade pain/electric shock type things (5 or 6 of them) at the back of my tongue on the left side. About 15 minutes after that I got one of my “stop me in my tracks” temple piercing pains on the same side…coincidence??? Thank goodness the temple piercers only last for a few seconds. Again, Lucky you - coming up on your surgery date - woohoo! Sending good vibes your way!
Oh, I’ve got the CTs - several of them! Same ENT I’ve been seeing for over 10 years FINALLY actually dug deep enough into my neck behind my jaw bone to find the mass I’ve been complaining about and diagnosed the ES about 3 months ago. I’m guessing the light bulb finally came on for him in that he had seen me numerous times over the years for MANY of my symptoms! He did not recommend surgery but referred me for PT. Needless to say, that did NOT work - actually aggravated the whole area even more. I am currently waiting to see Dr. Krempl at OU Health Sciences Center for my initial consult - Aug. 21st (made the appt almost 2 months ago). I guess after living with this for probably 20 plus years, I can wait a few more months! I first began with something stuck in my throat about 25 years ago…had the barium swallow and to my surprise was told everything was fine. I have grown quite accustomed to that diagnoses over the years for one thing after another.
Forgot to mention it here…I think I did on another thread, When the Radiologist was asked to revisit my latest CT scan for a look at the styloid processes, he reported them to be of normal length. The neuro I saw a few days before that request pulled up that same CT scan on his laptop during my visit as I was watching and commented on how LONNNNNNNG they were??? Only explanation I could come up with is the neuro was seeing the calcified ligaments. It’s no wonder we all suffer with this for so long. I wonder how many people go their whole lives with it and never get a diagnosis other than psychosis?
Wow! 25 years is such a long time to deal with the issues. It’s a shame it’s taken this long to diagnose ES.
I missed your diagnosis on the other threads. Glad you have a path going forward. Hopefully that alone gave you some relief. Keep us updated on your progress and consultation. It would be great if you could have the surgery and all your symptoms could go away!!! Best of luck!!!
Thanks HighHopes for the words of encouragement. And, yes…finally putting a name to this horrible thing has made a world of difference. I would even say the difference between life and death. Accepting that I just must be crazy and imagining all of this was quite maddening in itself. I was about as dark as one could go prior to my diagnosis. HOW could I be experiencing ALL of this and have nothing wrong??? After a couple of days of research, I knew before looking at the film that I most certainly have it and I have it bilaterally. I have about every symptom mentioned and a few extra! Right side affects mostly the side and toward front of my neck, left side affects the side and toward the back. I am so happy to be diagnosed, I can’t even believe there really is light at the end of my tunnel! To be free of half my symptoms would be more than welcome! Thank goodness for all the awesome people on this site!!!
I agree, this site has been such a shining light! Having support through these murky waters keeps me afloat.
It’s very interesting, we do seem very similar, albeit my journey has been much shorter than yours. I was really depressed and crying a lot as there was no diagnosis on sight. I first saw my endocrinologist because I have a nodule on my thyroid. I thought maybe it was related. He believed it to be anxiety and in my head. I went with his opinion and tried to relax. It just got worse. That’s when I knew I wasn’t crazy and pushed harder to find an answer. I can’t imagine being without an answer for several or more years. Those like you who go years even decades without an answer have my utmost reverence.
I’m so glad you finally have an answer. Keep all of us updated!
HighHopes -
Interesting - we share the thyroid nodule situation. As a matter of fact, my first ES symptom was neck pain which I thought was due to a new cyst forming in my thyroid only there was no new cyst…but…there was a lump under my jaw that when pressed increased the neck pain. That was my “AHA” moment. It was figuring out what the lump was that was the challenge.
This is so crazy, I too have a little lump located under my jaw which I thought was a swollen lymph node. When I push on it, I have discomfort. During the first few weeks of the onset of my symptoms I thought the node was the culprit. I wonder if more ES patients have this?
The next step in my journey is having the right side of my thyroid removed. My endo is concerned because it’s startunh to look “suspicious”. I’m assuming that yours is still in tact? Are you on Synthroid or another hormone controlling medicine? I haven’t been medicated for almost 20 years so I’m pretty lucky in that regard.
I went to my primary care doc about the lump under my jaw, & he said I had an infected salivary gland & gave me an Rx for antibiotics which I never took. A couple of months later, I had a gyne appt & asked my gynecologist about the lump. After feeling it she said, “It feels calcified.” & recommended I see an ENT which I did. The first ENT I went to diagnosed ES pending results of the CT scan he Rxed. The lump under my jaw was actually my styloid process. I was very blessed to have been diagnosed so quickly.
Yes my thyroid is intact. I get an annual ultrasound exam of my thyroid cysts as they’ve been there for years. A couple of them are calcified & have been fine-needle biopsied a couple of times just to make sure all is well & so far so good. When my cysts were first diagnosed, I was put on thyroxin to see if it would help them go away. I took it for a year & all it did was make my TSH levels drop too low. I stopped the thyroxin & my thyroid function has been normal ever since (even w/ unwelcome visitors ). I have never seen an endocrinologist since my blood work is all fine.
It’s great that your levels are stable and that you don’t have to worry about taking synthroid!
Very interesting how your OBGyn sort of put you on the right path. Never wound have guessed. He/she must be a great doc!
My GP refered me to the ENT bc she had no idea what it was. I hope docs become more familiar with ES so patients don’t have to suffer. I guess we too have a responsibility of getting the word out. Knowledge is power
). I have never seen an endocrinologist since my blood work is all fine.