Esophagus..

SuzJ

Something you don't get told about much is your esophagus. All I kept being told was "practice hard swallows" well that's all well and good, but it's not always that easy

Back before Christmas/Thanksgiving, I was having an awful time with GERD, or so I thought. It hurt so bad, pantoprazole, zantac, Pepto . Still pain!

Off to the GI Dr, I got scoped, and expanded -yay... All was good for a week or two. So then they expanded the to part..

Pain came back. So all the tests most of you have had, barium swallow, etc etc, finally, manometry.

Manometry measures the pressure in your esophagus, and movement. So it appears the bottom third of my esophagus is dead, there is no peristalsis movement, plus it's also narrowed to less than a centimeter in diameter.

There is no med, no cure, again it's also fairly new for radiation damage. Only thing I can do now is a weird surgery where they wrap your esophagus around your lower sphincter after cutting it open.

Idea is the food falls in, but no GERD. I'm not convinced tho. I'll hold out till I have to make a solid choice!

wbcgaruss

Dear Suz, I am so sorry you are facing this situation.
I can't say I have ever heard of anyone talking about a situation where part of their esophagus was dead, basically not working.
This must have occurred over time post-treatment and it is just showing up for you since I assume the death in this area of the esophagus has finally made it to the point to start causing real issues.
The operation sounds unusual but I figger the docs know their stuff.
Is there a name for your condition and is there a name for the operation they are suggesting?
You say the food just falls in, where does it go into your stomach somehow?
Just wondering, it's a little confusing to understand.
Also, you say "It's also fairly new for radiation damage" Is this something they are starting to see more of in the H&N community?
Sorry you have one more darn issue to deal with and a serious one too and I hope and pray a solution will happen and I pray for God to lead and guide your medical team to find a good answer for this.

Wishing You The Best Suz

Take Care, God Bless

NEGU (Never Ever Give Up)

Russ

SuzJ

Well, update of sorts.

No one knows what the pea sized lump on my trachea is. So, fine needle biopsy scheduled. Yay - not!

Not being able to swallow? Back to speech therapy.

GERD etc because my esophagus is shrinking down badly, I have to start all over with a dr at my usual hospital, because the first doesn't want to share records.

Days are good and ok. I work from home, and talk to parents (current contract) a LOT! This leads to my throat saying NO, and it shutting down on me, to the extent that I cannot get a Benadryl down!

Apparently my thyroid had completely atrophied, and I'm losing weight again. No one seems worried tho, so I'll keep on them for answers!

From me and my pea, Night!

wbcgaruss

Hello Suz, sorry you did not get a definitive answer but they are going to do a biopsy so I would say they are being proactive on it and not discounting it as important.

I have been praying for this to be non-important and easily handled, which it might be but they need a biopsy guess to decide how to proceed. I am praying this can be easily dealt with, as one of the many on here you have had your share.

Your esophagus shrinking may be a natural occurrence of aging and radiation although you are young yet so I guess it is mainly radiation and time.

It is known that after radiation the area radiated is less flexible, sort of like older leather that is not as supple. So then add time to it and it is more so less supple and flexible.

So I am hoping speech therapy can help you compensate for that.

Ask your speech therapist if she uses Biofeedback, the last one I went to used it and it really helps you understand your swallow better and realize how to get the most out of your swallowing exercises, I found I needed to put much more effort into it to do the exercises properly.

https://swallowingdisorderfoundation.com/swallowing-exercise-with-biofeedback/

Sorry, you have GERD, and this shrinkage all of a sudden I hope it can be mitigated.

The fact that your doctor doesn't want to share records sounds a bit like malpractice after the fact. This should be unheard of nowadays, I would file a complaint with the hospital about him. After all, they are YOUR records and he has no reason to withhold them. Maybe if you call him and reason with him, he already knows what you went through so appeal to his conscience and heart to release your records.

I think you already know but I just want to mention throat dilations as something to consider moving forward, ask your speech therapist and doctor if that is a good fit for your situation.

In the meantime temporarily if you have trouble swallowing pills you can grind them up and have them in applesauce, that's where I am at so I don't get anything stuck.

If you need a pill grinder I like the PUG Pill Grinder by Equadose the best just for a suggestion…

https://equadose.com/products/equadose-pill-crusher

And my second choice would be MAXGRIND…

https://maxpertmedical.com/product/maxgrind-original/

The benefit of these 2 is they grind from the top down and it falls in a catch cup you are not grinding all the pills together on the bottom which makes them harder to get to a powder.

Now, also your thyroid has shut down, my oh my when it rains it pours, doesn't it?

Well, it looks like you have some situations to rectify and some catching up and adjusting to do for a while.

My prayers are with you.

Wishing You The Very Best

Take Care, God Bless,

(NEGU) Never Ever Give Up