Anyone here have had this procedure investigating ES ? Researching and wanted to know more on “esophageal dilation” … who/what/when/where/why/how …? Thanks.
Hmmm…I just looked up esophageal dilation online, & what I read says it’s used to help widen a narrow section of the esophagus. That really seems unnecessary unless your doctor has some sort of visual evidence that procedure is necessary for you. In my mind it would just be something else to cause you pain that you’ll have to heal from. It would behoove you to ask your doctor many questions (like the ones you asked in your post), before even considering that procedure.
I had an upper GI (not an esophageal dilation) before I was diagnosed because I kept choking on my food when I was eating. There was concern that I had a constriction in my esophagus, but it was fine. Once I was diagnosed w/ ES & learned about the multitudinous symptoms, among them choking, I knew that had been an early ES symptom for me.
Yes, I googled it too and just reading how it’s done, made me uncomfortable!
I will ask the new Kaiser doctor next week.
I had an upper (GI) endoscopy as well; it was last November while investigating the pain in my throat! I have no issues drinking or eating! Actually the only time that I’m not in pain is when I’m swallowing! They found H-pylori, and it cleared a couple of months later with the proper medication. And according to the last ENT, throat pain caused by acid reflux is always in the middle of the throat; my pain is always on the left side! Funny that the previous ENT doctors did not know that and kept telling me it’s acid reflux… one of them said it was “silent”… no symptoms and prescribed a stronger dose of the exact same RX that I had just finished for my H-Pylori! oh well !
Throat pain is the only symptom I started having after my Thyroidectomy! And one other symptom that I’ve yet to read about on this forum… extremely dry mouth at night, that felt like everything inside my mouth was glued together; but that lasted for about a couple of months; still feel some dryness but not as bad! Then it was late May, I started having some nerve pain along the left jawline and temples (that’s how the Dr. suspected ES and ordered the CT), and most recently nerve pain on both sides of the neck, shooting towards the head with some headache! And now the occasional throat pain towards the right side of the throat. It’s just very puzzling to me!
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Good idea to talk to the Kaiser doc next week. I’m sorry you went through so much w/ your gut but am glad the H-pylori is gone now. Many people w/ ES get mis-diagnosed w/ GERD prior to their ES diagnoses, but in your case, you did have a legitimate gut issue.
Dry mouth and hyper-salivation have both been noted by members w/ ES. Jules suffered from dry mouth prior to her surgeries. I think but am not 100% sure that these symptoms did subside, at least to some degree, once their styloids were removed.
The fact that your pain is moving to the right side now sounds like you’ve got bilateral ES. Sorry, but I can’t remember if you mentioned whether you do or not.
ES symptoms are a bit crazy in that they can change location, can be immensely painful & annoying for a few days then disappear for awhile, can vary in intensity & location depending on the time of day or activities during the day. They’re often worse when we’re stressed because our stress hormones cause inflammation which of course stimulates the nerves to a higher activity level. Sometimes there is just no rhyme or reason for what is hurting.
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I’m not sure why they would do this procedure if they already have confirmed ES on CT scan?
My sister in law who recently had throat cancer treatment (chemo and radiation) had something similar to this. She had a throat stretching procedure because after all the treatment (she had feeding bag for many months), she could not swallow anything. She went thru several rounds of this throat stretching. In her case, she really needed this procedure so should could eat again. She said she had dreamed of having a hamburger for months. Of course liquids came first and she was waiting to have a cocktail.
Id really question the doctor as to the purpose of this procedure especially since you already had an endoscopy recently. Sounds like overkill. It curious that this all started after a thyroidectomy though. I wonder if you have some scar tissue from that procedure compressing nerves? A neurogram (MRI that reads nerves) could easily reveal this however they are not easy to get ordered and likely would need to see a neurosurgeon who has access and knowledge of this type of MRI.
In my case, I had bilateral ES and GERD and TMJ. I had those shooting pains into my temples as well and right before I was diagnosed with ES it was at its worse. One side went well into the temporalis area and was most intense. Neurologist who gave me botox injections in area and TMJ specialist felt the temporalis problems were caused by trigeminal nerve compression. That shooting pain changed sides too over a 5 year period starting with what I described as a bone in my throat on right side. I think when the pain starts, the neck starts to tighten from the pain (inflammation) effecting the nerves and on up to the ears as it worsens. Although I dont know for sure, I think in my case because I also had TMJ, the tension in the neck and jaw eventually affected my temples. It always hard to figure out what causes what problem but I do believe its all connected.
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CT report says 4.9cm on the right side and 4.3cm on the left.
Hi Snapple and thanks for your input.
Initially and even with the severe bruising, I felt I was recovering quite well after my Thyroidectomy (never had surgeries before!) Then a month later it was the trauma from ingested glass! It’s a long story how and what happened. So, long before ES came to the scene, for me it was either the surgery or the glass. Surgeon insisted my pain had nothing to do with the surgery and kept sending me to ENT and ENTs and a GI and a whole bunch of imaging procedures saw no “foreign bodies” all was fine! But I saw a video yesterday that this procedure could be done to investigate many different symptoms including injuries from foreign objects or cysts or … etc. Possible that the GI who did the upper endoscopy missed something ? No idea ! Interesting you mention scar tissue from the surgery … will start researching that soon. Thx.
I do agree as the others have said that you should clarify why they want to do this, if they have actually found a narrowing…as it’s done under GA & they’re doing it for investigation, it would seem a bit unnecessary? I’d ask too if it’s at the same level as the styloids have grown down to in your neck; I know they only use a soft balloon, but if it’s close to where the styloids are could this potentially pinch nerves further, or even blood vessels maybe? So for you, could it be a higher risk than for non ES patients, I’d want to ask that?
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Forgot to say that yes, I do have dry mouth- it started about the same time as the ES symptoms got worse. I have dry eyes too, I think it’s possibly an autoimmune condition, but initial blood tests didn’t show anything & as it’s not got any worse I never pursued further testing, but I think there has to be a link.
From research I’ve done, the Trigeminal nerve does seem to have some function innervating the glands producing moisture in the eyes & mouth, so maybe if those nerve branches are affected by styloid compression/ irritation, it could affect the glands?
Yes, I will try to ask and hopefully find out more sometime next week. Thanks.
Thanks for letting me know. Mine started around the same time I started my H-Pylori medix… that according to the PA were quite harsh. My blood tests were fine too (they said!). But your explanation makes sense too !
Do you and @Isaiah_40_31 and @Snapple2020 have any medical background or is it just your personal experiences with ES and what you learned through researching things ? You sound very knowledgeable… now I’m building a new vocabulary thanks to ES !
None of us have medical backgrounds, but we all have experience w/ ES, & Snapple, in particular, w/ other health issues. She’s the best informed about how to “work” the medical system because of her experiences. We’ve also learned a lot from the years we’ve been on this forum, & speaking for myself, I’ve gotten pretty good at searching Dr. Google. Though not always perfectly accurate, there’s usually enough good general information to give me an idea of what I need to know. We also try to read/skim the ES research articles for which we receive links.
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Often auto-immune conditions dont show up on regular blood testing and is so hard to diagnose. Im not sure about all the surgeons, but Dr. Samji decompresses the glossopharyngeal nerve when doing ES surgeries…at least he did with me and I think with most patients.
This reminded me when I was having unusual eye twitches on the side where the trigeminal nerve was getting compressed prior to my 1st ES surgery. When I was having the worst pain flair ever, my temporalis muscles were locked up like a drum in extreme pain and my eye and nose started to run uncontrollably on that side only. The neurologist thought is was a reaction to pain and gave it a name. We still have talked about the trigeminal nerve causing the problems up in this area.
I guess I could say I have a medical background which was built on personal experience (decades worth), much of what I now believe stem from having ehlers danlos hypermobility. My daughter (and other kids more mildly) have it which put me on 7 year path to get her diagnosis of POTS/Dysautonomia which led to our family diagnosis via geneticist. I have flown her all over the country seeking medical consults as it is disabling to her. This is why I have some knowledge of the vague nerve issues and symptoms some ES patients have. I was a patient advocate prior to her diagnosis and was executive director of a non-profit that did patient and healthcare educational and support programs around hepatitis so I have alot of knowledge around GI issues. My own bad experience(s) within the medical system should not happen to others and why I try to pass on what I can to help others avoid what I have.
I don’t know the level of expertise the GI you are seeing who did the endoscopy and exploration of pain. How big is the Kaiser GI practice group? I usually do deep dive research into finding the most expert docs in their field and seek them out for consults. Even if I have to fly across the country to do so. This is how I found Dr. Samji. Patient support groups or blogs is where you learn who is good, who is not and who might just lack experience and may cause you more problems than help you. Kaiser doesnt necessarily allow for travel outside their system. This is why I have been lucky to have the options to chose PPO medical plans that allow me to travel. Im not sure which Kaiser you are at in the country. Some of the larger Kaiser medical facilities may be a better option. Kaiser is a mixed bag with some centers providing excellent care and others having bad reputations. Personally I have heard more negative than positive.
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Unfortunate that you had to go through several health issues to learn all what you know now; but very nice that you are willing to pass that knowledge on to people who need to know and learn in order for them to continue the road to recovery, especially with a rare disease like ES that many doctors don’t know much about or avoid dealing with it, not sure which one it is! Otherwise we would be in the dark and struggling with a whole bunch of issues and don’t know who to turn to! Google is great help to research things, but advise and tips from real people with real experiences is the greatest help
That GI, the thyroid surgeon, one of the ENTs I’ve seen and most of the imaging they did investigating my pain are all with UC Health in Denver Now I’m back with Kaiser and scheduled an appointment with them before I learned about Dr. Hep … he’s on your list. I think I will need second and third opinion for my ES and the other issues I’ve been having after my surgery. Just praying that they don’t complicate things for me!
I have always been suspicious of Medical systems; I have very little trust in them. For all our US members on this group who are interested in learning more about the health system in the US, I recommend reading “The Long Fix” and the authors’ interview on “The Hidden Brain” on NPR…a while ago.
Thanks again for all the information you are sharing with us. 
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Before I was diagnosed with ES by my ENT, I had it done and it made my symptoms worse. The reason I had it done was because I was misdiagnosed with acid reflux. After I had my esophagus dilated via endoscopy, I had loads of pain and throat spasms for a few months. It made my symptoms much worse. My GI doctor looked at me like I had was crazy when I tried to explain it to him. I plan on letting the GI Dr. know that I did not have acid reflux but instead had ES. I got a second opinion from a GI doctor at Cleveland Clinic (before ES diagnosed) and he couldn’t figure out why my original GI doctor did the dilation in the first place.
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Great input! Thank you, beachlady!
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Thank you beachlady;
I was told by one of the doctors that sometimes when they don’t find a cause and patients insist that there must be something wrong, they end up diagnosing with whatever they think is appropriate for that patient! No idea why they think that! And he said usually unnecessary medical procedures will make the situation worse and leave us with more pain. I agree with him on that. He said that even with all the advancement in medicine sometimes they don’t have answers! For pain they are very quick to prescribe pain killers and worse nowadays opioids … and we all know what happens with that! The dilation was a suggestion awaiting the results from my Jugular ultra sound. I don’t think it’s something I would want to do! Thank you and wish you the best. And I agree with you, walking is very good for the soul 
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Aboulog1,
You’re welcome. And you are correct about the unnecessary meds. The first GI doctor had me on a PPI which didn’t help at all because I didn’t have acid reflux. When that didn’t work, he doubled the dosage and it still didn’t work. Then he was just stumped and told me to drink alkaline water and consider acupuncture.
I hope you get some relief and feel better soon!
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I have a friend that has had the band to dilate every six months. She’s had it for years. She was choking in food and water. It helps prevent that.
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Its amazing what many of us have had to go through to get a correct diagnosis!