I cannot bear to live with this pain any longer! Over the past 5 years I have seen 17 of the best doctors in Amman and until today no one has made my symptoms any better. The symptoms just keep getting worse as time passes by.
Here is my story in brief, in case there are any doctors out there that can help!
2010: Had my gall bladder removed. A few days later, doctors realized i had a stone stuck somewhere and liver enzymes were up and so had to do another surgery to remove it (done by endoscopy)
2010 to 2012: started having heartburn nothing major but frequent
2012: was on vacation in Dubai. Ate seafood that day and felt like my throat was closing up. Went to hospital, they treated me as if it was allergy with cortizone and so on. The choking feeling didn’t go away for days. Came back to Amman. Doctors said it was acid reflux. Started taking Nexium.
2 months later couldn’t stop throwing up acid. Hospital. Did endoscopy.
Results: gastritis and mild esophagitis and 2cm hiatal hernia.
Couldn’t eat for 5 months straight. Had pain just below the last chest bone in
the middle. Kept going to hospital day after day, they kept giving me shots of zofran
and nexium. 5 months later, I started eating again. Was on motilium and pariet 20 and gaviscon.
2013-2016: did 3 more endoscopies. They took samples from esophagus,
stomach and duodenum twice and results were clear. Both times that the
biopsies were taken, the doctors said that my esophagus was really hard.
What i was feeling:
– throat is closing up
– sometimes feel like there’s lump in my throat usually on the right side
– heart fluttering sometimes when i lay on my back or on my sides.
– heart skipping a beat sometimes. Went to cardio doctor did all tests and all is
clear
– nausea
– feeling like my stomach is about to come out of my mouth
– food difficult to swallow sometimes even water
– cold drinks make it worse
– chest pain
– continuous esophagus spasms (or that’s what i think it is)
2016: agreed to do manometry test which was the worst experience ever.
Manometry (results below)
Result: non specific motility disorder.
Did another endoscopy October 2016. Result: hernia is now 4 cm. Doctor could see that there is narrowing in esophagus. Esophagus is dilated. And Doctor said esophagus is really hard! This is the second time they tell me it very hard (last 2 endoscopies i did). You can view this endoscopy here: https://youtu.be/EtIyPJuXHNQ
Barium swallow test done again in October 2016. It showed that esophagus is dilated (images and results below)
2017: since beginning of the year things got worse and worse. My spasms werent going away. I feel every inch of my esophagus . I can feel the spasms so strongly and now the spasm are felt in my upper throat. When i lay down, sometimes i feel like my esopahgus is pressuring my heart and causing it to skip a beat. I feel pressure in my chest on my lungs sometimes. Sometimes i cant swallow at all for a few seconds. Other times i have difficulty swallowing. I feel like something or my stomach is gonna come out of my mouth. Sometimes i cant burp. It gets stuck and wont come out so i think my esophagus is closed. Sometimes i feel even water is stuck in my esophagus and wont go down. Recently when I lay down especially on my left side, I feel my heart fluttering. I keep moving from side to side until it goes away but sometimes it doesn’t. Sometimes this happens after I eat and sometimes it goes away when I eat. It has been happening more frequently recently.
I have done the following for two years now:
– stopped smoking (one year)
– i only drink water or chamomile or sometimes juice that doesn’t have a lot of acid
– no alcohol
– no pain killers ( i used to take alot because i had migraines now i only use paracetamol when needed)
– no spicy food or even spices
– no citrus or tomato sauce and so on
Nothing is working and its only getting worse with time. I did the manometry again a few months ago just to double check again and the results are attached. The doctors all disagreed with the results as i do not have any symptoms for scleroderma on my hands or anywhere on my skin.
I also sometimes feel something is pressing on my chest or on my lungs. Sometimes i go out of breath as well. My heart and lungs are fine. My pulse is always high and my blood pressure is low. I did all tests for lungs and heart and they are all fine. This is ruining my work and life. Cant even go out with friends without feeling a spasm or pain or something.
My barium swallows never show anything except for the last one i did mentioned above. It was the only one that showed the esophagus is dilated and that there’s reflux.
CT scans showed esophagus is dilated. Endoscopies showed hernia increased to 4 cm but they cant do fundoplication as i have a motility disorder, esophagus is dilated and narrowing. And doctors said my esophagus is very hard when they took biopsies.
I have been to 17 doctors over the past 5 years and no one was able to help me.
I spent this past Christmas at the hospital as I had severe chest pain and I kept feeling my throat is closed for days. I did an endoscopy again a few days ago and nothing in my results have changed except for the fact that my esophagus is really hardened. I havent been able to eat. I only eat very small amounts of soft foods and liquids. There’s still a feeling that my esophagus is closed and that it is very tight.
This is just a brief summary of my case. Please have a look at all the above and let me know if you know a doctor that can help. I would highly appreciate it!
Thank you
