Hello @tryingtofindanswers and welcome back to Connect.

It has been a while since you last posted. I am sorry that you are still dealing with the same problem of difficulty eating, swallowing, etc. and now even have a new symptom of the shock-sensation over your chest. You must be very frustrated.

As I recall from your previous posts you were going to look into visiting a Mayo facility. Were you able to get more information about that? Also, did you ever look into speech therapy for assistance with the swallowing problems?

I looked on Mayo's website and I saw this link, https://www.mayoclinic.org/biographies/vela-marcelo-f-m-d/bio-20111414. This doctor deals with motility issues. However, you would have to call to see if he would be able to assist with yours.

I appreciate your checking in with Connect again and I hope that you continue to post and keep us updated on how you are doing.

Teresa

@tryingtofindanswers I have had swallowing issues for many years. I am able to eat soft cooked food.. you could mash it with a fork and it would be baby food. I can also eat tender meats. I cannot eat white potatoes nor most breads. I cannot swallow a saltine, but can swallow Ritz crackers.

I have had a sliding (paraesophogeal) hernia that caused many problems (I am hoping it does not become stubborn again). Here is a small part of my story (too long for here and there are no ads that I am aware of at my blog): http://zarogasnook.blogspot.com/2015/08/a-long-time-passing.html .

I have achalasia and Barrett's esophagus now. After my last suregery in 2015 I was told I would have chest pains and not to worry.. it is not my heart. The thoracic surgeon said I would probably have the pain the rest of my life. The pain comes when I have eaten a little too much or with exercise or trying to do household chores.

My esophagus spasms in two places. First at the beginning of my esophagus and second as it enters my stomach. Sometimes it takes a while before food will enter my stomach and backs up onto my esophagus. Sometimes I do not realize it has done this until I try and drink something and it will not go down and the food will then start coming up. The esophagus is suppose to squeeze the food down and with me the food just drops at the start of the esphagus down to my stomach.

Dilation of my esophagus.. so far.. has helped me with swallowing, but after about 18 months it gets about impossible to swallow again. I think there are surgeries that will sometimes help, but I am not to that point yet.

I can empathize with you. I have a been suffering from GI problems ever since March 2003 I had the Gastris Bypass surgery. I won’t make this long..so I’ll just post recent issues. I was diagnosed with Gastroparesis about 2-3 years ago and Vagus Nerve Dysfunction 2 years ago, which I’ve probably had longer then that. I almost died in 2015 because I couldn’t eat or drink without vomiting. I had 2 feeding tubes placed and lost 70 lbs. within 2 1/2 months. I couldn’t tolerate the feedings either. My general surgeon who has operated on me multiple times I have been with the past 10 years. He decided the only option for me was to reverse the gastric bypass. It was pure hell post surgery and not a day goes by without nausea, vomiting, abdominal pain and the Esophageal spasms. Those spasms make you double over in pain, it was if I was having a heart attack. I’ve been told there is no fix for the spasms. There is no fix for the Vagus Nerve Dysfunction either which that’s pure hell I have to live with the rest of my life. Symptom management is basically all I can get. I had a hell or myotomy in 2006 which is where they removed the lower region of my esophagus. I’ve had my esophagus dialated more times than I can remember, I’ve had those Botox injections near my pyloric sphincter which helped with my Gastroparesis for a few months. I’m sorry for going on a rant. If you need someone to talk to please reach out.

Michelle

Hi I’m a 39 year old woman and I’ve got ineffective esophageal motility disorder, with spasms. My manometry showed 90% failed swallows. I can eat certain things like liquid drinks, smoothies, puréed soups and some solid foods like meltable solids such as shortbread cookies, cheetoh puffs, crackers,frozen yogurt, yogurt and basically anything you can give a baby. My doctors have told me there’s nothing they can do for me, that I’ve got to learn to deal and a nutritionist won’t be helpful. Ugh. They’ve been zero help. All they did was put me on Omeprazole and say it won’t get better and just hope it doesn’t get worse. So I’m looking for food ideas from others with this issue. I think from googling on my own I’ve realized maybe I can do mechanical soft, but I’m scared as when this began my swallow reflex would stop when something solid would get stuck and I don’t want to go backwards since I have to work full time and maintain my energy. I’ve been suffering with this for two years and lost a violent amount Of weight at first, so much so that my gall bladder went bad and had it removed in June. Ugh. It’s so hard “living” like this and these food holidays don’t help. Ugh. I’m tired of feeding my body liquid sugar and junk food because it goes down easy. I wish I could just bake a chicken breast and some broccoli. I’ve tried pureeing my food but I wanna vomit with puréed meat. Ugh. Any assistance with ideas for more solid/soft food that goes down for those with esophageal motility disorders would be beyond appreciated. Thank you.

Not sure how to post here. My problem is I have motility issues where my esophagus is wide open like a tube. I also have had one zenkers diverticulum, which was surgically repaired. I also have a sliding hiatal hernia. Now I have a second large diverticula pouch and my Dr. says the repair is extremely difficult because of the previous surgery ,too much scar tissue. He just tried a endoscopic procedure and stopped because he said it was too difficult. Leaving me with no solution to either the Zenkers pouch or the dismotility or the hiatal hernia. HELP

@popeye123

I don't want you to think no one is listening... just when you do not have the exact same problems as the person posting it can be hard to know what to say.

I have no motility of my esophagus. Most times I swallow and there is a spasm at the back of my throat and my food then drops down my esophagus to above my stomach. Then there can be another spasm. Sometimes it locks the sphincter and my food stacks in my esophagus until it decides to open.. food and water will not go down nor up.. and it is miserable.

I had to have a gastric bypass to fix my giant sliding hernia. I had to go to the Mayo Clinic (I went to Jacksonville) to have the hernia fixed because the mess a local surgeon made of a Nissen fundoplication. It sounds like you need a gastroenterologist .. and perhaps a surgeon... that has more experience with your conditions.

ZeeGee

I've been having swallowing problems for a few years. A bolus often pauses until the upper esophageal sphincter opens. Then the rings in my esophagus fire randomly instead of in order. Then the bolus stops at the lower esophageal sphincter until it decides to open.

At lunch today I had two strips of crisp bacon, and it took 45 seconds to get from putting a small bite in my mouth to feeling it leave the esophagus. I'm losing weight slowly because I get tired of chewing and swallowing, and I often put the rest of my meal in a container in the fridge, to eat another day.

One of my sisters had significant swallowing issues along with other things and died after years of seeing all kinds of specialists with no diagnosis. She was in her 50s, and had always been very health conscious.

I'm not sure what to do next.

Jim

I was just diagnosed with this and I am just looking for guidance on how to deal with it and if there are any procedures to correct it. Thanks.

I have been having GI symptoms since last May. The only thing I have now is a bad taste in my throat and when I am hungry it gets worse. It's almost like a gas is coming up from my stomach. I was diagnosed with SIBO back in July but really don't have anybody the symptoms but mild constipation. So he suggested the manometry because of the bad taste. A week later he told me I had ineffective esophageal motility and that there is nothing that can be done.

Hello @kaykay729. Have you considered a second opinion if the diagnosis just doesn't seem right based on your symptoms?