Posted By: msweet2995 Swallowing issues - 09-13-2018 09:50 PM
I really can't believe what is happening to me my oncologist ordered a barium swallow study and that came out normal. But still having trouble swallowing but my local GI doctor ordered a manometry test, tube goes down the nose into stomach and the results said that my esophagus is no longer working and that my sphincter that keeps food down is no longer working and I have a hiatal hernia. I was told there is nothing they can do for me unless I start aspirating. My oncologist says I am fine. I am VERY frustrated and at the end of my rope. Has anyone ever heard of this. He said it is not from radiation cause he has seen other people without radiation with this problem. The last two nights I am wheezing and coughing and chest and back hurts. I just can't believe it. Can anyone give me advise. I received radiation in my mouth and neck, so I don't get why no one wants to tie the two together. Please anyone have a feed back on this matter. Thanks
Posted By: gmcraft Re: Swallowing issues - 09-14-2018 01:12 PM
My husband’s esophagus was closed by scarring after radiation. Eventually, an interventional radiologist was able to re-open the esophagus by using a new prodcedure. So, John was swallowing, albeit, soft foods. However, three months after that, he got pneumonia. His oncologist ordered another wallowing test which determined that he was suffering from silent aspiration.

How long was it between your swallowing test and the manetry test? Could the swallowing difficulties have worsened in between the two tests? Many oral cancer patients lose their ability to swallow for one reason or another after radiation — I have run into a few while John was in treatment. So, it’s not unheard of. It can also be the esophageal muscles have become atrophied during the treatment period, that’s why patients are always advised to keep on doing their swallowing exercises even though they are not able to swallow much during treatment. So, I have no idea why your doctors say they have never heard of swallowing difficulties being tied to radiation.

At this point, if I were you, I would seek a second opinion. It is important to pay total attention when you are eating to ensure the food goes down properly. Are you wheezing and coughing because you have aspirated? John’s oncologist was able to determine he was suffering from aspiration by having his phlegm cultured because bacteria that’s normally not found in the gut showed up. Silent aspiration is when you have aspirated but you do not show a reaction at all. You don’t get the feeling that food has gone in the wrong way and you need to cough it back up. Go to your PCP and ask for a referral to another GI or a speech and language pathologist who specializes in swallowing problems.

Posted By: msweet2995 Re: Swallowing issues - 09-14-2018 09:05 PM
Hi Gloria, it was only a month or so difference, the barium swallow showed normal but the esophagus and sphincter was very weak and not working properly and I have a hiatal hernia. I had radiation in 2009 so I guess I am lucky I am still alive, plus 2 times I had oral cancer. In 2009 I could only drink small sips of water and could not eat anything food and acid would come back up a stomach tube kept me alive. I had an endoscopy in June which was normal. This local GI doctor said there is nothing they can do that I will either die from aspiration or malnutrition. I asked my PCP and Oncologist if they would refer me for a 2nd opinion to a GI doctor in Boston, I am hoping but not sure if want a permanent stomach or tube in my intestines. I always say that quality of life is very important, very confusing but moving on one day at a time. So sorry to see the loss of your husband, this disease is truly terrible. Take care and thank you for posting.
Posted By: gmcraft Re: Swallowing issues - 09-17-2018 06:30 PM
Hi Msweet,

I have taken sometime to reflect on my response. Getting oral cancer sucks. Just when one thinks one is out of the woods with an NED, then the long terms side effects kicks in. I understand perfectly how you’re feeling. My husband, John felt he had been robbed of all quality of life when he realized that his esophagus was blocked. He actively searched for treatments for his swallowing even though his cancer had already metastasized. He even contemplated going to the US for treatment (we’re from Canada) although taking that step would mean we would have to mortgage the house and go into debt. He would sneak sips of pop when I was not watching and absolutely refused to eat puréed food. The problem was he kept aspirating and was once hospitalized for three weeks, which, in Canada where we have socialized medicine, was a big, big deal.

As his caregiver, I knew how frustrated he was and yet, caring for him when he would not heed the SLP’s advise was frustrating for me. I was scared all the time.

At this point, you might have to weigh between health and having a feeding tube. Neither is an easy choice. If you choose a feeding tube, it would mean missing out on eating good, properly cooked food. Some people I know chew the food in their mouths and spit it out after. Would that be an acceptable course of action for you? If you choose to forego a feeding tube, you have to be very, very careful about what you put in your mouth. Aspiration pneumonia is exceedingly dangerous and if you get successive bouts, you will be weakened.

Is there someone you can talk to about your choice, a pastor or a counselor, for example? What about members of your family?

Most people do not really understand the struggles people with swallowing difficulties go through. It’s beyond most people’s imagination. If you’ve been through a barium test, you would know there only a flimsy piece of skin (the epiglottis) that guards our windpipe from the food that goes into the esophagus. John used to say maybe that’s a design flaw in the human body. Whatever that might be, I fully understand how discouraged you may be feeling.
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