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Dealing with Achalasia: Esophageal spasms and discomfort

Started by Sean Lopez40 · · 👁 5 views · 30 replies

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Participants Sean Lopez40Ronald Ward35Thomas Rogers9rapidbadger8Karen Reyes2Sarah Vaughn94Laura Gray50vividsailor7driftinglynx52Dennis Robinson52Amy Ross5casualwalker18nimblelynx67melloworca6Betty Sanchez3Jessica Clark98Edward Hayes22casualskipper45Henry Green4
melloworca6 melloworca6 Regular
551 messages
joined May 2010
#21 ·
Tina Fey please stop spamming the Health forum and ignoring the moderators' warnings. You can't just jump from one thread to another, posting the same questions over and over whenever they pop into your head. Seriously, knock it off, because we’re going to have to start handing out much harsher penalties.
Betty Sanchez3 Betty Sanchez3 Newcomer
1 message
joined Feb 2014
#22 ·
Sean Lopez40 said:AHALAZIJA (achalasia) involves a disorder of esophageal peristalsis and the relaxation of the lower esophageal sphincter, caused by a lack of ganglia in the Auerbach plexus. Symptoms include dysphagia—difficulty swallowing both solid and liquid foods—chest pain, and regurgitation. Treatment options like nitrates and hydralazine can help manage symptoms, while a complete fix usually requires either cardiomyotomy or balloon dilation of the esophagus.

This condition affects about 1 in 1,000,000 people annually. Because many aren't familiar with it, they often misattribute it to eating disorders like bulimia or anorexia. It’s relatively straightforward to diagnose via an esophageal X-ray (once food gets stuck) or a gastroscopy. Essentially, the esophagus develops spasms that tighten rather than relax, trapping food so it can't move up or down.
You’re born with this condition, so there’s no controlling its onset. Typically, the inability to swallow dry or hard foods develops gradually; in my case, it was triggered by sunstroke.
It impacts the entire gastrointestinal tract, which can lead to secondary issues in the stomach (like gastritis or ulcers) and the intestines.
Medications used include nitrates (ISMN), taken sublingually before meals. Balloon dilation (stretching the esophagus) isn't always effective and the process can take up to two years. Cardiomyotomy is an invasive procedure that really needs to be performed by a specialist, as it carries a risk of gastroesophageal reflux—where everything meant for the stomach ends up coming back up involuntarily.
A few years ago, I was at a breaking point because doctors struggled to diagnose me given how rare the disease is. After eight months, I finally saw Dr. Opačić at Mount Sinai, and he was able to identify it. I'm so grateful to him!
Fortunately, my situation isn't too severe, and I've learned how to manage it. Some days are harder than others. I have to be very mindful of every bite, regardless of any medication. I haven't had surgery or dilation; I've simply learned how to live with it.

Amy Ross5 said:Hi, I tried to snap a photo but I keep getting an upload error, probably because the file size is too big. If I shrink the image, it becomes unreadable, so I'll just transcribe it here...

May 02, 2011 Medical History

For the last year and a half, they've had epigastric pain, dysphagia with liquids, and now even with solids, accompanied by regurgitation. Because of this, they were seen this past April by Dr. Rotkvić, who diagnosed AHALAZIJA based on endoscopic and radiological exams.
The clinical presentation and those tests point directly to that condition.
IMPRESSION
Prior to cardiac dilation, please perform esophageal manometry and a barium swallow at the Holy Spirit medical center under prof. Jurčić

September 05, 2011
HISTORY
Patient presents with manometry results that are non-specific: hypotensive lower esophageal sphincter and predominantly ineffective peristaltic activity.
RECOMMENDATIONS
Given these findings (X-ray, EGD, and esophageal manometry) along with the persistent dysphagia, I recommend hospitalization for further testing and a decision regarding cardiac dilation.

September 05, 2011
DIAGNOSIS

They were admitted to our facility on September 15, 2011, where we performed cardiac dilation using a non-expansive balloon—yet despite this, the dysphagia persists.
IMPRESSION
Please order an esophageal X-ray and a contrast swallow study; after reviewing the results, we will decide whether to repeat the procedure.

January 16, 2012
HISTORY

Presenting with swallowing study and esophagram results from December 23, 2011 showing a widened esophageal lumen and hypotonia; emptying is difficult through the distal segment, which has normal width and regular mucosal fold contours.
Manometry findings from May 2011: hypotensive lower esophageal sphincter and ineffective peristaltic activity.
Cardiac dilation was performed at our facility on September 15, 2011 (the radiologist's conclusion was AHALAZIJA). We suggested starting Controloc.

IMPRESSION
Considering the X-ray findings, the inconclusive manometry, and the poor response to cardiac dilation, we suggest using prokinetics (cisapride, domperidone, metoclopramide). Since we carry Reglan, we suggest attempting to improve peristalsis with metoclopramide (Reglan) 3x daily. Follow-up in 1 month.

February 27, 2012
History
Reglan isn't working, nor has there been any improvement. We recommend a soft food diet with more frequent, smaller meals. In case of heartburn, take Controloc 40 mg as needed.
We recommend an endoscopic follow-up in 18 months. However, if symptoms persist (dysphagia, increased heartburn), come in sooner.

casualwalker18 said:I spent two years dealing with some pretty brutal dysphagia, basically living off a feeding tube... but thanks to a speech therapist over at the Mayo Clinic, I’m finally back to eating on my own again

Does anyone know how much an esophageal manometry costs here in the States?
Jessica Clark98 Jessica Clark98 Newcomer
2 messages
joined Mar 2014
#23 ·
Come hang out with us here:

https://www.facebook.com/achalasiaawarenessmonth

https://www.facebook.com/groups/192554014213935/

https://www.facebook.com/groups/77953468660/

..I was just wondering—how many of us are actually out there in the States? ☕

I also found a few more Facebook pages and groups that I joined recently—there’s some really helpful stuff in there! 👍
Edward Hayes22 Edward Hayes22 Newcomer
1 message
joined May 2014
#24 ·
Count me in too... can you send over the Facebook links? None of the ones listed above are working for me... :-)
Jessica Clark98 Jessica Clark98 Newcomer
2 messages
joined Mar 2014
#25 ·
Hey, it probably won't happen because those groups stay pretty private...

Maybe just shoot me a link to your profile or something? Then I can add you to the groups—or we could just swap emails
I don't really know anyone here in the States, so I'd honestly love to maybe swap some stories and experiences☕
casualskipper45 casualskipper45 Newcomer
1 message
joined Jul 2015
#26 ·
Hey everyone!

Could someone share their experiences with this condition? I'm wondering if things like dilation treatments actually make a difference or if surgery is the way to go—and also, where are you all seeing your doctors?
Henry Green4 Henry Green4 Newcomer
3 messages
joined Apr 2016
#27 ·
Greetings, everyone,
I find myself feeling somewhat skeptical that everyone has truly moved past this struggle with anchylosing spondylitis 😳,
. Having personally battled this relentless condition for over a year and a half now, I’m looking to connect with anyone else navigating similar waters. If you're willing, please reach out—I would truly value the opportunity to exchange perspectives and hear about your own experiences with managing this.

Best regards,
Karen Reyes2 Karen Reyes2 Newcomer
4 messages
joined Feb 2010
#28 ·
Henry Green4 said:Greetings, everyone,
I find myself feeling somewhat skeptical that everyone has truly moved past this struggle with anchylosing spondylitis 😳,
. Having personally battled this relentless condition for over a year and a half now, I’m looking to connect with anyone else navigating similar waters. If you're willing, please reach out—I would truly value the opportunity to exchange perspectives and hear about your own experiences with managing this.

Best regards,

I don't really get where this "doubt" is coming from. Obviously, not "everyone" is cured, but let's be real—getting an esophageal dilation at least gives people a chance at a decent life again. It means they can actually eat something without it being a total nightmare, even if they still need a little help with liquids.
And honestly, I don't quite follow this "long-term struggle" thing either. If things have been this rough for you, why haven't you gone looking for medical help sooner?!?
Henry Green4 Henry Green4 Newcomer
3 messages
joined Apr 2016
#29 ·
Look, I’ve personally undergone balloon dilation, and my symptoms came roaring back just seven days later.
Since we're clearly dealing with the exact same issue, maybe instead of launching these baseless attacks, you could actually offer some practical advice? How are you managing to breathe well enough to expand your esophagus and eat without struggle?
My intention wasn't malicious; I wrote what I did because, from my own experience and what I've seen with others facing this, there are no quick fixes for this kind of condition. It just leaves me wondering: if there are people out there living with these disorders, why is the conversation so silent? Why does this topic seem completely dead? Then again, if everyone has miraculously recovered and simply stopped posting, then thank God for that.

If you’re planning on coming at me like this again, I’d suggest taking an Xanax or a Valium to settle your nerves and relax those muscles before you even think about typing a response.
Karen Reyes2 Karen Reyes2 Newcomer
4 messages
joined Feb 2010
#30 ·
Henry Green4 said:Look, I’ve personally undergone balloon dilation, and my symptoms came roaring back just seven days later.
Since we're clearly dealing with the exact same issue, maybe instead of launching these baseless attacks, you could actually offer some practical advice? How are you managing to breathe well enough to expand your esophagus and eat without struggle?
My intention wasn't malicious; I wrote what I did because, from my own experience and what I've seen with others facing this, there are no quick fixes for this kind of condition. It just leaves me wondering: if there are people out there living with these disorders, why is the conversation so silent? Why does this topic seem completely dead? Then again, if everyone has miraculously recovered and simply stopped posting, then thank God for that.

If you’re planning on coming at me like this again, I’d suggest taking an Xanax or a Valium to settle your nerves and relax those muscles before you even think about typing a response.

I gotta admit, you actually gave me a laugh there.🙂)
I’ve never touched a Xanax or a Valium in my life—not that I ever would need to. But honestly, maybe that’s the issue right there; you seem pretty high-strung, and being that wired usually leads to issues with how you eat, whether you deal with acid reflux or not. However you want to spin it, I wasn't attacking you. That's just not how I operate. I was just giving you some friendly advice. Take a breath!
Henry Green4 Henry Green4 Newcomer
3 messages
joined Apr 2016
#31 ·
I’m truly glad if I managed to bring a smile to your face 👍
What I find regrettable, however, is that I failed to stir enough empathy in you to offer some actual guidance on how to navigate this state of aphasia—and let’s be clear, we aren't talking about simple neurosis 😁

My regards to you
😘

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