Swallowing

Does anyone else have trouble swallowing? I have had my esophagus dilated three different times and it only helps a little. The other day I was eating ice cream and it wouldn't go down - I had the ice cream headache of the century! For five minutes I thought I was going to die. Sometimes even water just sits there. My doctor put me on Reglan but the side effects were intolerable. I don't know what to do at this point. Anyone else been through this? How are you being treated?

Thanks!

Report post

23 replies. Join the discussion

I'm sorry Sculptr I have not. Is this a sarc problem a liver problem?

Report post

Hi Sculptr,

I too experience not being able to swallow. Went friday for upper G.I. don't know any thing yet. I have talked to others with sarcs who have the same symptom, I believe it is related. I can choke on my own saliva.

Unique64

Report post

I have a lot of problems swallowing. Do you ever feel like you have a lump in you throat?
The Dr. told me it was inflamed lymph nodes pressing up against my esophagus. I have neuro-sarc also and I wonder if it has anything to do with it. I get choked on my on saliva.
It is scary sometimes when I feel like I got a lump in my throat and I try to lay down, I feel as I'm choking. And of course no one seems to know what to do.
alice

Report post

Alifay, the lymph nodes pressing against the esophagus makes more sense than anything I've heard! That would explain why nothing they do helps. Of course, it would be nicer to have an answer with a cure, wouldn't it? I agree, it is very scary, and lots of times embarassing because I often have to leave the table and get rid of my food because it won't go down. Sometimes it won't go either way, which is worse.

Thanks for your answer.

Michele C

Report post

Princess I don't think it is a liver problem, no. How are you feeling?

michele c

Report post

Unique, let us know what you find out. This is really a distressing problem, isn't it.

Michele C

Report post

Hi Sculptr,

I have had this problem. It is actually how I found out I had Sarcoidosis. I started having problems swallowing and they thought I had a Hiatal hernia. They had set up an appointment to have my esophagus stretched. Then they said they wanted an x-ray to confirm and that is when all the fun began. My first diagnosis was cancer. After having a biopsy it turned out to be Sarcoidosis.
They said that the Sarc can put pressure on the esophagus which causes it to be very difficult and sometimes virtually impossible to swallow even fluids. I know that I had problems even drinking water and after a week was extremely hungry and was getting dehydrated. I have only had the problem real bad twice and both times it only lasted about a week. They gave me some anti inflammatory and it went down after several days. They said It can come back anytime I have a real serious flair up of the Sarc. I am not sure if we have the same thing or not but I can certainly understand your frustration. I am so sorry to here that yours is on going.

Weyekin

Report post

Weyekin, where did the x-ray show problems? And where did they take the biopsy from?

Thanks!

Michele C

Report post

Hi,

The x-ray showed my chest was full of masses which we now know is Sarc. The took biopsy from my lungs and chest they went through the base of my neck.

They told me anytime I had a flair up I could get this problem with the swallowing.

Thanks
Weyekin

Report post

I too have enlarged lymph nodes in my chest that fills up the area between the lungs and presses on the broch tubes. I wonder if this could be the culprit?

Just trying to live
Unique64

Report post

I have the same issue with the lymph nodes pressing on the esophagus. I even have done the barium swallow on the tilt table. Sometimes my throat will even make a noise, when attempting to swallow, for all to hear. argh!

Report post

Cloudnine-

Oh yeah, that gurgle thing? Have you ever had stuff fizz? One time I drinking a cold icy drink, like a Slushy, and it started fizzing up like I had swallowed alka-seltzer! I couldn't stop it - lasted about half an hour. Ugh.

Report post

Esophagus stretching? This is as horrifying as theGardener's recent image. (Where did he get that....??? [the other possibility is that picture is really how he looks!]) ;>0

I've noticed voice changes with flare-ups. This symptom appears about the same time as sinus problems.

After many years of sinus trouble, I'm going to see an ENT. The goal of the visit is to get a tissue sample and see if sarc is camped up there. I'm betting it is. Maybe they'll stretch the nasal passages.

Report post

All I can say is it is not a pretty sound and other people can hear it. I have been asked by friends, what the sound was. People have asked me if that hurts. People have asked me if I am passing gas.

Problem is that I never know when it is going to happen. I just say, nope something got stuck in my throat. I don't even go into explaining that my lymph nodes are swollen and it is making it hard for things to go down. I don't even want to go there because you know if you do too much explaining they will just think your trying to explain a fart away. Kind of like when you sit on a vinyl couch. No it wasn't me it was the couch. Really it was the couch!

Report post

Hi,
I am wondering if you have had a barium swallow, a cat scan or an MRI. Having trouble swallowing can be the first symptom of esophageal cancer. They need to definitively rule this out by taking a biopsy of whatever they find there unless they can tell you for sure by these tests that it is lymph nodes. I don't know if they can tell by x-rays what kind of blockage you may have if it looks like some kind of mass.

My husband was diagnosed with Esophageal Cancer 10 years ago. It is nothing to fool around with. If you can catch it soon enough your chance of survival is better. It is a very deadly cancer. I don't mean to scare you but one of the most important things with sarc is to make sure doctors are not blaming everything on it. Which can happen even though they usually don't even believe sarc is causing all your symptoms.

I have trouble swallowing off and on also but I had an endoscopy, which is the easiest test and they can see exactly what is there in your esophagus without guessing. Mine was clear so I know it is not cancer. Now I know I can persue the sarcoid avenue.

Please, please talk to a gastroenterologist about this possibility. My husband is a 10 year survivor which is not very common. It worried me when I hear all of you describing the symptoms he had. He did not have esopahgus stretchings but others have and they helped. You have a sore throat and some discomfort but then you are able to eat and drink again. I don't know if when they do the stretching if they are actually looking at the junction where the esophagus joins the stomach. That is where a lot of EC cancers are found. Ask if they look down that far when doing the procedure.

I hate to be an alarmist but this is very important. EC cancer is the 2nd most deadly cancer in the US. When my husband was diagnosed he was told he had a 3% chance of surviving one year but we went to Sloan Ketterin in NYC and he was put on a clinical trial and here he is 10 years later. It is better to rule this out straight off then finding out too late.

I have a lot of resources about this and if you want to talk to me further I am glad to help.

Sylvia

Report post

Sylvia, it is very kind of you to be concerned. However, I have had my esophagus stretched three times and twice they have biopsied small growths, which turned out to be "nothing". At the time I didn't have the Sarc diagnosis and now I'm wondering if they missed something... I am going to have to wait, however, to see my gastro because I lost my private insurance. I'm on Medicaid, and will be on Medicare in March '09 so I am sort of holding on, hoping for the best with all my medical issues until then. Should it become worse before then I will go to the ER. But I am confident that it isn't cancer, as the biopsies were fine. This has been going on for many years and I would have croaked by now! (no pun intended, lol)

To further ease your mind I had a CT scan of the chest a couple months ago and am scheduled for another at the end of this month. The only thing that showed up was in the lungs and spleen.

What we need in this country is healthcare for everyone. I can't find doctors who will accept Medicaid! I have ONE - my rheumatologist, and she is kindly acting as my primary and everything else until March. I even got kicked out of the pain clinic when I lost my insurance! Sad, really sad. The pain doctor was my best friend one month, and a cold fish the next when he learned I only had Medicaid. But my rheumy stepped up to the plate, thankfully.

Thanks again for your concern, and I am SO glad that your hubby is strong - tell him to head for 20 years now.

Michele C

Report post

Cloudnine, LOL! :-D

Report post

ellishampton, I get those voice changes too.

Hey, next time you get bored, go ahead and get your esophagus stretched. I mean, think of all the extra food you can swallow at once. It's fun, really. No, really!

Report post

swallowing has been a big problem for me. i didn't know it was so common. i have the problem with swallowing water as well as saliva. oh, and pop... dude. i am so glad i have found all of you..

Report post

Wow, my father in law also had EC, he is going on 12 years of survival now but has many problems resulting from the cancer.

I, too have difficulty swallowing but not as bad as most of you describe. My throat almost always feels swollen and that I have to swallow hard to get stuff down. The doctors feel the glands in my neck and they say they feel ok....its just another mystery of sarc to me. Hope everyone is having a relatively pain free day today!

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders