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Tracheoesophageal fistula from lymph nodes


Kli233

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Hi everyone,

I have been lurking on this forum for a while, but this is my first time posting and I was hoping to get some advice and help.

My mom was diagnosed with stage 4 NSCLC in May of this year, mets to both lungs and lymph nodes in neck and chest. She had 5 days of palliative radiation to a large area in her chest and lower neck and then started on targeted therapy in July.

Last week she suddenly started having a fever and coughing up lots of mucus whenever she tried to swallow. She was admitted to the hospital for pneumonia and they later found a tracheoesophageal fistula as the source of the issues. They're thinking the fistula was a result of a lymph node metastasis in that area.

They're preparing to put in a stent to temporarily block the hole so that she can swallow again, but looking online, the prognosis does not look very good with this approach... We asked about surgery to remove the lymph node and repair the hole, but the surgeon said they wouldn't be able to do that...

Does anyone have experience with this or know about any good treatment options available?

Thanks so much!

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Kli,

Welcome here. Pardon my brevity. I’m responding on a cell phone and my thumbs do not have the dexterity of youth!

A tracheoesophageal fistula is nasty. The esophagus tissue is too flimsy to allow a surgical repair. And I’ve had 4 stent insertions in my trachea to bolster a bronchus stump suture repair. My actual problem was sutures holding on the stump. The stent was used to bolster the area to allow sutures to heal and hold. 

The stents caused a myriad of problems for me. First tracheal irritation caused intense coughing fits and this resulted in stent movement. The remedy was to install a longer stent and that held firm but again the irritation caused intense coughing compounded by lots of mucus production. 

Eventually my thoracic surgeon thought the stents did their job and were removed. It is an unusual condition and in my day they didn’t make trachea stents so esophagus stents were used. Stents are made using a unusual metallic alloy made of nickel and titanium. This is woven into a fine mesh. The alloy has temperature sensitive properties. When cold, it shrinks to allow emplacement using, in my case, a bronchoscopy. Then when released, the heat-sensitive alloy properties allows the stent to expand and create the bolster that allows tissue healing. 

I’ve known folks who’ve had both esophagus and trachea stents. Several in this Forum May chime in with their experience. Expect discomfort, perhaps coughing and difficulty swallowing. And, no one can predict how long the stent needs to remain in place so frequent scans or endoscopic inspections. But while inconvenient and uncomfortable, they worked for me and others. 

Not pushing my book but it contains a lot of detail about my experience with stents that may be helpful for your mom. It is called Scanziety and is on the Amazon Kindle store. It is not long and inexpensive typical of writing attempted by civil engineers. 

More questions? Ask away. 

Stay the course. 

Tom

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Thanks @Tom Galli!

Did you only have stents in the trachea? My main concern is whether swallowing can return to normal, or at least close enough to swallow pills/capsules, after the stents are put in...

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Kli,

Yes, only the trachea. I know folks with esophageal stents and some report swallowing difficulty; some do not. I believe irritation and swallowing problems are different for everyone. I think an important variable is the location of the stent. 

Hopefully, your stent will be a temporary condition and healing will allow it to be removed quickly. 

Stay the course. 

Tom

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Hi Tom,

How does the location of the stent affect things? My mom's is pretty high up, just below the collarbone I believe.

Also, how long can the stent stay in for?

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Kli,

I’m not sure I can answer how stent location affects things. I would hazard a guess that it would need to be positioned so it doesn’t cause a persistent gag reflex. I bet an Ear, Nose and Throat doc is or should be consulting on the procedure. 

My stent stayed in for about 4 months. My surgeon told me that was about the limit of a trachea stent because tissue started to grow into the stent weave. I sure fell better after its removal. Your mom’s doctor will have a better answer. 

Stay the course. 

Tom

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