Jackhammer Esophagus

Is there anyone here been diagnosed with Jackhammer Esophagus?

OMG! FINALLY, someone else is cursed with this awful condition. It took me 8 years to find a gastroenterologist who knew what tests to perform to confirm JE.

How long have you had JE? Please tell me how you are doing, what you are doing to manage the pain. I'm still in the process of managing the chest pain.

I would love to hear about your experiences and where you are now. Please, keep in touch. I've been searching for years to find you!

Hi LindaSue,
I’m so sorry to hear about your trouble with JE. It is a very frustrating condition. And there’s not much known about it, as I’m sure you are aware. I discovered yesterday that it’s listed as a “rare disorder” and beyond that, not a lot of support can be found.
I’m not sure I’ll be able to give you much solace, as it seems you’ve been plagued with this disorder a bit longer than myself. But I can offer a listening ear if nothing else.
I can tell you my story if you’d like. I discovered this forum yesterday while doing an online search post-op. I just had fundoplication and hiatal hernia surgery last week. What a relief to find a place where I can see what other people have gone through.
I was diagnosed with JE in 2017 by a gastroenterologist in Colorado. I’m now seeing a thoracic specialist in Arizona. As far as the pain goes, I hate to tell you, I’ve got a very high pain tolerance and tend to just deal with it. I tend to not eat or not drink when it’s acting up, which is what led me to the current specialist. The fundoplication was performed in order to stop the GERD, with hopes that the years of acid reflux is what triggered the JE. Hopefully with less reflux, the muscles in my esophagus will relax and eventually get better. We shall see. Still having problems, but it’s only been a week. I’m sure it’s going to take quite a while to see a difference.
Jess

Hello there. I am a 47 male and I am one year out from NF360 and Cholecystectomy. I continually get a chest pain or “burning” sensation. I take Nortriptyline for what is being assumed as hypersensitive esophagus. I was curious to know what exactly does the JE pain feel like. Currently I don’t get reflux coming up, but have stomach burn and chest burn sensations after eating and even sometimes when empty. Thanks

Hi, I started with JE and dysphasia in 8/22 after a TIF and HH repair. It feels like I'm having a heart attack about 25 x a day. I actually went to the ER the first time it happened; it scared me to death. I've been tried on a number of different meds including Amitryptiline, Buspar, and Baclofen. Had negative side effects to the Amitryptiline and Buspar did zero. Baclofen takes the edge off the pain and severity of the spasms. I'm currently looking into John's Hopkins in Baltimore. They have a swallowing clinic. Will let you know!

Hi Linda Sue, thanks for the med suggestions. My GI guy is a bit stumped. In addition to the spasms and dysphasia, I ended up with gastroparesis so it's clear the vagus nerve got involved. It happens. He can fix the gastroparesis and any GERD but no fix for the JE and dysphasia. I'll run the drugs you mentioned are working for you by him to see if we can give them a shot. I tend to be sensitive to a lot of drugs and end up with rashes, hives, etc., but nothing ventured, nothing gained. My HH was repaired and appears to be holding. I had a second opinion at a big teaching hospital in SC. They could offer no additional medication suggestions but referred me to GI Surgery. They wanted to do a TIF takedown followed by a gastric bypass. Ummmmm, where in all of that do they fix the esophagus? I passed. Thanks for your info. Much appreciated. I'll let you know how I make out.