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Joined: Jun 12, 2012

Throat mystery!

Posted by @jenamor, Jun 12, 2012

I have an undiagnosed problem that I would love to know if anyone else has had. I have had surgery twice in the past two months to laser out where my throat is reproducing cells like a spider web, closing my throat. They think my tracea was damaged from a previous surgery and scar tissue formed, the mystery is my ANA tests positive for lupus but I have no other symptoms of lupus, so there is a hiccup with my auto immune system and somehow a signal is getting sent to immune system to fix the scar tissue in my throat and now this keeps trying to grow shut. The doctors say I can’t keep having surgery every other month and want to resection my tracea, which I am so opposed to. Does anyone else out there have the same problem or can give me any suggestions on another treatment?


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Joined: Jun 12, 2012
Posted by @libbyslabel, Jun 13, 2012

I have never heard of such a thing! Wow! I have an issue w/ my throat in that certain types of dry foods, bread, crackers, chips get caught in my esophagus & cause me to cough. It is an inherited trait as my father, grandfather, great aunt, & sister all have the same issue. My ear, nose, throat dr told me if it gets bad enough, she can do surgery. I have a close friend whose mother has lupus; she recently had major surgery to put her stomach & intestines back where they are supposed to be located – they were scrambled all around in her torso! Best wishes on finding a solution to your condition 🙂


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Joined: Nov 20, 2011
Posted by @roxie43, Jun 13, 2012

Wow that must be scary. How about having your tonsils removed? Would that help? I too have never heard of such an illness but I hope you get better.

Posted by @jackwiththroatproblems, Jun 27, 2012

Hi my name is Jack and I have the same or very similar very rare condition,I had surgery on my throat several years back to treat sleep apnea. Within 45 to 60 days after Uvulectomy surgery my throat would grow shut and close off. This became a pattern, I then had more surgery to open it back up and it would just grow shut again. The Doctors finally gave up and sent me to Stanford to see if they could help.I was diagnosed with a condition they named Stenosis of the Throat tissue,there are only 20 or so reported cases,and not much is known about this condition. I got a similar recommendation that radical surgery would be needed, and I also was opposed to that type of treatment as you are.I basically got passed on from doctor to doctor and clinic to clinic until I was out of the system as well as out of options.With no other Medical help available and with no more options from the Medical community we took this line of action. I am a master machinist and made a Teflon ring that we inserted in my throat after the closed up area was surgically opened to fit the Teflon ring. This was done privately out of the county by some very caring dedicated Medical people that just wanted to help,and put them self’s in potential risk for trouble with the Medical community and or opened themselves to potential law suits. These kind people will remain nameless in order to isolate them from any backlash from the medical community or any other mainstream system that would not fix this rare problem with a logical but unrecognized procedure. This procedure allowed the tissue to grow around the Teflon tube but did not let my throat grow totally shut. It worked well and it has been open for two years at this time.The only down side for my situation is due to our limited resources and the many failed surgery’s that caused radical scar tissue build up the passage is to small to correct my sleep apnea .I feel my life was saved by this successful procedure and has given me time to heal after several previous failed surgery’s to open my throat. They could open it up,but did not do anything to deal with the over healing condition. I read your story and thought I could give some answers as I have dealt with this condition for many years with only a few people that even know anything about it.. And if I can share something that works as we now have a proven procedure ,we may get the Mayo clinic to help us, I have had over five years of dealing with this and am now looking to get help from the Mayo Clinic to help get me a bigger passage by getting a Mayo Clinic surgeon to help expand on this process that I know will fix me,and I feel this process could help you as it has me. Thanks Jack N ( email me and let me know if I help or if you think we can benefit from the Mayo Clinic getting involved in our cases. I hope you can get some relief. Jack

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