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GERD and tracheal stenosis

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GERD & Acid Reflux
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Posted 8/11/2008 12:47 AM (GMT 0)
Anyone here have a growth in their trachea at their subglottis?  It starts restricting your breathing and requires procedures such as dilation, laser and even reconstruction surgery of the trachea.  This can be caused by breathing tubes inserted during surgery, cancer, Wegener's disease, or there can be no cause at all other than chronic inflammation.

I happen to fall in the latter category.  I had to have procedures done to restore my breathing.  My subglottis was bright red and it looked like I had severe GERD, but I never had any symptoms of GERD.  Evidently 50% of the people with GERD don't have the symptoms. 

My question is............since there is no known cause for what I have and it is rare, has anyone else here had experience with this trachea stenosis problem and found that it WAS actually due to GERD.  Right now the doctors don't know what to do to treat trachea stenosis, so they just try to treat GERD.

Help?

Posted 8/11/2008 4:43 PM (GMT 0)

prestwickv

Hello and welcome to HealingWell.  I am not sure when you said you had treatment..........did you have surgery or Lasar treatment for your Tracheal stenosis?

A number of infections of the bronchopulmonary tree can lead to tracheal stenosis. Fungal infections such as histoplasmosis and blastomycosis should always be considered when the etiology of the stenosis is unclear. Serologic testing and histopathologic examination can be helpful in this regard. Other infectious causes of tracheal stenosis include rhinoscleroma and  tuberculosis,

I am sure you have been tested for  infections.

I am so sorry that you have this dx and please know we are here to support you.

Respectfully
Kitt

Posted 8/11/2008 5:12 PM (GMT 0)
Pathology reports and blood tests have not come up with a cause for my problem. I had a dilation and laser of a very small spot on the trachea where the growth was attached. The only cause the surgeon will give me is chronic inflammation. Logically something has to cause that inflammation, but no one seems to know what. They treat you for GERD because of the redness and look of GERD.

I'm trying to find out if anyone who is known to have GERD also had a growth in the trachea, or trachea stenosis. Right now I am being treated with Nexium 40 mg twice a day. Anyone have a similar experience and found this to be effective for the stenosis?
Posted 8/13/2008 3:16 PM (GMT 0)
Prestwick,

Welcome. I surely hope your treatments keep the stneosis under control.

I was recently diagnosed with LPR (reflux into the throat) but have had its symptoms for over three years. No stenosis, thank goodness, but my doctors are always keeping track of my progress. There are some tissue deformities around my larynx, but no growths (in fact, some tissue is missing!).

percycat
Posted 8/13/2008 11:13 PM (GMT 0)
Hi percycat,

Interesting that you mention LPR. I have asked a number of doctors the difference between GERD and LPR, but they act like they are pretty much the same, when they don't seem to be to me. Some of the online literature also indicates they are different.

I'm assuming since you have been diagnosed with LPR, that you don't have all the usual GERD symptoms?

prestwickv
Posted 8/13/2008 11:43 PM (GMT 0)
Prestwick,

No GERD symptoms at all. In fact, I've twice had a GI doctor tell me he was 100% certain that I didn't have reflux after doing a scope and hearing about my symptoms. Then my ENT did a throat scope and said oh, yes, I do. She put me on the twice a day pill regimen, and I am doing enormously better.

As I've come to understand it, GERD gives people heartburn (I've never had it), chest pain (nope, neither), maybe indigestion - others here can describe their symptoms better. I had lots shortness of breath, tight throat, lump in throat, some mucus in throat and dry cough, and when I really started to pay attention, I could detect a tiny bit of warmth in the back of the throat. My ENT was quite clear that these are all classic signs of LPR.

Oh, and for me it's actually worst when I'm sitting up and not a problem when I lie down, which is pretty opposite to how GERD sufferers feel.

The official web site of the ENT professional organization has a great brochure that clarifies things better than I can. Sorry I can't remember the URL or the offical name of the organization.

percycat
Posted 8/14/2008 7:22 AM (GMT 0)
Your symptoms sound a lot like mine. I really don't have any classic GERD symptoms, except for an occasional overindulgence in foods I usually don't eat. This usually happens on vacation, never when I am at home cooking for myself.

If you think of the official web site of the ENT professional organization or that name of it, let me know. I'll try google.

Thanks

prestiwickv
Posted 9/4/2008 1:28 AM (GMT 0)
Hey Prestwickv .. I have the EXACT same thing as you. I was diagnosed a few months ago with tracheal stenosis, and had the surgery to remove the scar tissue and dialation. I had several tests done recently due to acid reflux, and as of today found out that I have 3 X the level of acid that I should. I will be having surgery to correct this on 10/9. According to the doctor, he believes that the gerd was the cause. He said that with high acid reflux levels, while we are asleep and laying down, the acid comes up and we basically inhale it into our trachea. I take 3 meds a day right now for the acid reflux, and according to my doc, after surgery, I won't have to take anything for it. You should check into that. ALSO, he said that since I had prior surgeries with a breathing tube, it could have started the tracheal scarring, but the acid built bigger and bigger over the years. Does this sound like your symptoms? You can email me if you like  ... Thanks

 

Edit

 

I have taken your email address out as we don’t allow people to post their contact details in threads for their own safety. (Because these are public forums and there is also scanning software out there.) I appreciate you are new to HealingWell , so to add your email address to your profile so that others can email you you need to:

Click CONTROL PANEL in the blue bar at the top of your screen

Click EDIT PROFILE in the middle of the bar at the top.

You should already have an email in the box but you need to make sure that SHOW MY EMAIL ADDRESS is selected.

After selecting it, click SUBMIT and your done

Thank you for your understanding

Kitt

Post Edited By Moderator (stkitt) : 9/5/2008 10:38:51 AM (GMT-6)

Posted 9/4/2008 4:36 AM (GMT 0)
I thought GERD caused LPR. I always thought it was just another symptom of GERD.
Posted 9/5/2008 4:33 PM (GMT 0)

Good Morning Prestwicky

If a person  suffers from laryngopharyngeal reflux, recovery with proton pump inhibitors may take up to 3 months. If a one month trial of once a day Proton pump inhibitors is not helping, than it is  recommended to try  a three month trial of twice a day therapy. It is often hard to discriminate between LPR and GERD. A dual pH probe from a gastroenterologist may help if it is available. Also, a trans nasal esophagoscopy may be warranted to rule out erosive disease of the esophagus.

Laryngopharyngeal reflux (LPR) is a condition characterized by backward flow of stomach contents up to the voice box (larynx) and throat (pharynx). It is also known as reflux laryngitis, or silent reflux.

Diagnosis of LPR is based on symptoms, changes in the area of the throat, and, if possible measuring the pH value to see how acidic the secretions are. In GERD, the defect is in the lower esophageal sphincter. In LPR, the defect is in the upper esophageal sphincter. Important information has been discovered recently. The larynx is 100 times more sensitive to acid and pepsin injury than the esophagus.

I hope this helps in understanding why it is hard to make a differential diagnosis.

Take care
Kitt

Posted 9/5/2008 4:41 PM (GMT 0)

asims8084

Hello and welcome to HealingWell and the GERD Forum.  I am sure you will find many people here that know what your going through.  Please do feel comfortable in posting your own thread.

WE love new members so stick with us and know you will find caring and kind members here.

AGain a warm welcome.

Kitt

Posted 4/2/2009 3:22 PM (GMT 0)

Hello everyone.  Finding this post and discussion was a pleasant surprise.  I've been dealing with this exact issue for the past 2+ years.  I was first diagnosed as having asthma.  Asthma drugs helped my cough to go away, but didn't releave the shortness of breath. 

I became pregnant with my second child and was sent to a specialist by my midwife.  He did a bronchoscopy and identified my tracheal stenosis.  He did a surgery and put one cut into the scar tissue and also did dialation.  At this point he didn't know what was causing or had caused the stenosis. 

A year later I returned again for surgery.  Then he sent me to a GI doctor who also looked down my throat and identified that I was having acid reflux.  Then I did a PH study that confirmed that I have normal acid reflux, but I have unwanted symptoms when it occurs.  I started taking one of the common acid blockers and experienced very uncomfortable symptoms associated with digestion.  This also happened with the next acid reflux medicine.  I have since stopped taking them and was hoping that weight loss and diet change would "cure" me.  It was suggested to me by an acupunturist that I might be allergic to wheat and dairy.  I removed them from my diet and have lost 55 lbs.  Supposedly my body was unable to digest wheat and dairy and I was storing them.  The weight loss has been nice, but I am still having breathing issues.

I had a 3rd bronchoscopy with dilation 9 months ago, and again I am short of breath, and I have my 4th bronchoscopy with dialation scheduled for the end of April.  I did a 2nd PH test yesterday but won't know the results till May when I can get in to my GI doctor. 

I am trying apple cider vinegar as a treatment.  Supposedly it neutralizes the acid in your stomach.  I drink 1tsp=1tbsp with honey and hot water in the morning and then again later in the day on an empty stomach/digestive tract.  I also drink licorice root tea.  Licorice root is supposed to help your stomach lining.  I am aslo taking ginger.  Again this is supposed to help your stomach/digestive tract. 

Posted 9/10/2009 3:51 PM (GMT 0)
I need some help!  I'm a 38 yr old female with Tracheal Stenosis. I've had the scopes, ph tests, mri's etc.  My doctors in Indiana said I don't have acid reflux based upon the test results.  I had a dialtion done in June which helped a lot but I still feel short of breath.  And, when I start to feel short of breath, the anxiety and stress of it all sets in.  I recently moved to Virginia, the doctor here wants me to stay on Protonix twice a day.  He said even a small amount of acid reflux can cause the scarring.  I may have a slight hiatal hernia.  Basically I'm miserable.  All of the coughing, not being able to breath, my throat does burn a bit.  I've eliminate so many things from my diet but that's so hard to do all of the time.  I am a normal weight 5'7" 140lbs so I don't need to lose a ton of weight. 

I just started using DGL and slippery elm.  I don't think it's working.  I've never had any heartburn, pain in chest etc. 

Can anyone recommend a great ENT or other doctor in the Richmond Virginia area?

Posted 11/9/2009 4:25 PM (GMT 0)
I see that this thread started over a year ago but wanted to see if anyone was still watching it?? :) I googled 'throat stenosis surgery forum' and found this forum... looks like right where I need to be...
I have stenosis in my windpipe... :( they are thinking from GERD.. have been on Nexium since 2005... I just saw a doc at the Univ of WA in Seattle... was sent there from Spokane where I live ;) ... my ENT tried to do the laser surgery to open up my airway where it is narrowed and couldn't get to the spot... he tried and tried.. he stopped and referred me to Seattle... just had tests last week and will be having surgery in about a month. I get super short of breath.. my narrowing is at 8 mm or is it cm?? I don't remember... they say I'm breathing through a straw just about... I'm freaked because I may have to be trached during the surgery and it could be permanent... :( was told this is an idiopathic diagnosis because they don't know what causes it... they are suspecting GERD... at the narrowed spot.. there is lots of inflammation..
anyone still watching this thread? I sure hope so.. I need someone to talk to.. :(
Posted 12/31/2009 2:28 PM (GMT 0)
hello yes i've just looked into this and a new member as last year i was in a coma from a asthma attack and had to be ventalated etc. after a few months out of hospital my breathing was becoming difficult and was told i had stridor ( as u'll prob know is an affect of tracheal stenosis) after alot of test's and two operations trying to laser rthe problem it still did not help my situation so i had another operation which i've forgot the name of but they actually removed the sition of my windpipe that was damaged i was told it was about 1 inch, they then stiched the ends together.

This opperartion is very rare but i am so greatful of it. i did have to have another temp smaller trachky and was stiched to my chest so i would'nt split the stiches also got quite an impressive scar which has faded. Also i lost my voice for one month but it eventually came back.

reason i'm on hear is because now a year on i am having so much heart burn and thought it was just over indulgence at christmas but from on here i see that it is commonly linked to tracheal stenosis. hope this messages will help and also help me for further advice on heart burn
Posted 12/31/2009 3:38 PM (GMT 0)
Welcome to Healing Well.
I too have asthma and GERD. I'm 10 days post op from a 270 degree wrap.
Stick around and start your own thread to introduce yourself.

Joy
Posted 1/4/2010 1:59 PM (GMT 0)
thank you joy i will get round to starting a thread soon

ta

ps: what is a 270 degree wrap?
Posted 1/4/2010 9:15 PM (GMT 0)
Well the Nissen wraps the stomach 360 degrees around the esophagus, like a hot dog bun.
The Hill procedure (270 degree wrap) is like taking your pant's leg and wrapping it around your leg, except it's your stomach and your wrapping you esophagus.

I had the Hill which isn't as restrictive as the Nissen.

Joy
Posted 2/6/2010 5:27 AM (GMT 0)
I was diagnosed with LPR last fall after having suffered from the classic symptoms (unbeknown to me) for over a year and a half. I responded immediately and dramatically with treatment. However, my breathing issues continued. At the beginning of the year, they finally caught a huge mass in my trachea and stenosis. During a bronchioscopy they removed the mass and dilated the stenosis. The mass was only inflamed tissue, most easily explained by the LPR. While I have had great improvement, the stenosis is still in the abnormal range. I have been referred by my ENT to another ENT surgeon to get another opinion on what treatment is next. My current ENT mentioned the possibility of tracheal resection. I am SO hoping and praying that the second doctor does not feel the same. Since the bronchioscopy a month ago, I have been having NO breathing problems and my larnyx and trachea look the best they have since I started seeing the ENT for treatment. I still have some occasional soreness and pain that occurs in both my throat and right ear.

I came here to share my story and hope that others had been successful with non-dramatic surgical procedures.
Posted 5/6/2010 3:11 PM (GMT 0)
I am new to this site as well. I would like to know how to contact someone or repley to their message if anyone can help me...I am not srue how to do that.
It is reassuring in one sense that I am nto the only person going through this but I also feel so alone and so frustrated at times and I dont feel like their is any really "good" solution or new tchnology coming out. I have alot of respect for those of you who have had more invasive surgery. I can honestly say...I am praying for ya!!!! I also have GERD(Acid reflux) they make that out to be not a really big deal but I do know it is linked to TS. I have a hard time knowing what to eat, I do not eat red meat or sea food, I am very picky and I really enjoy sauce adn I have to restrict myself from that becaue it makes my throat burn, as wlel as other things. You guys are all so wonderful and I pray they come up with a betetr solution for TS becasue I am not happy. I feel like alot is going on and I get down easy but I feel that if I had my health, I would be okay. I look at people who are joggin/running and I always say I wish I could do that. I am not an envious person but I have to admit, I do get envious when it comes to that! Also, I find if the smallest amount of wind hits me, it gives me a sore throat and my glands feel swollen...Does anyone else go through that?
Posted 5/6/2010 8:51 PM (GMT 0)
Welcome Daisy,
You can reply privately to other if their email icon is lit up below their name in the left-sided box. Otherwise, just click on "post reply" button found at the bottom of the thread. Clicking on "New Topic" will open a new thread.

Feel free to write a introduction thread.

I had my surgery very sucessfully back in December. I'm sticking around to answer any questions about the surgery and prep testing.

Joy
Posted 7/8/2011 6:01 AM (GMT 0)
karonnyroo??? are you still around??? I'm possibly looking at the 'Tracheal resection' surgery in the future... was wondering how you are doing??
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