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RitaAnn
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Health Update

Post by RitaAnn »

For the past year I've had upper throat congestion and always having to clear my throat. Back in March, I began to have breathlessness upon sudden exertion. Even just getting out of a chair and walking down the hall leaves me wheezing and fighting for air.

It took several months to see a couple of specialists. I had an endoscopy with a gastrologist. Except for a couple of polyps in the stomach and irritation in the esophagus, I had no pathology.

Friday morning I had a procedure called a bronchioscope. The pulmonologist suspected I had narrowing of the windpipe. The test results proved positive for https://en.wikipedia.org/wiki/Laryngotracheal_stenosis" onclick="window.open(this.href);return false;

I live in Maine but there are no thoracic specialists for the type of surgery I need here. The closest is in Boston. I have a consultation with the doctor on Tuesday and learn more then. Fortunetly, I have two family members that are willing to take me.
Last edited by RitaAnn on Sat Jul 25, 2020 7:11 pm, edited 1 time in total.

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J_dogg82
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Re: I Have Laryngotracheal Stenosis

Post by J_dogg82 »

Sorry to hear this Rita. Good luck with the surgery. Let us know if there is anything we can do for you.
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Re: I Have Laryngotracheal Stenosis

Post by Izzzatso »

Sad to hear. Did a bit more reading (medical sites), doesn't sound like a fun surgery, not that any are. Is there a chance that they could dilate? My friend has a spastic esophagus and she's had to have it stretched a couple times.

Any way it goes, best of luck to you.
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Re: I Have Laryngotracheal Stenosis

Post by Frësch »

Wishing you a smooth journey, RitaAnn.
Fortunately, some of the best doctors in the entire world are in Boston.

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Re: I Have Laryngotracheal Stenosis

Post by rainwater »

gosh ritann all i wondered was how you were doing in the rain in maine....

glad you got people to go with you.
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Re: I Have Laryngotracheal Stenosis

Post by carmenjonze »

Hope everything goes well with the surgery, Rita Ann. Best to you

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Re: I Have Laryngotracheal Stenosis

Post by glenfs »

Well, look at the bright side. It has been found and now it can be fixed. Stay strong and have a quick recovery.
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Re: I Have Laryngotracheal Stenosis

Post by S'toon »

Good luck. Take care of yourself. Get well.
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Re: I Have Laryngotracheal Stenosis

Post by MrKelly »

really sorry to hear that ... take care and get better soon

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Re: I Have Laryngotracheal Stenosis

Post by Sam Lefthand »

Yes, what MrKelly said.

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RitaAnn
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Re: I Have Laryngotracheal Stenosis

Post by RitaAnn »

Thanks for the well-wishes everyone!

I go to Boston tomorrow to see the specialist. I don't know what to expect except he won't be doing surgery. It's mostly a consultation. He may run more tests and hopefully I'll get a date for surgery soon.

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Re: I Have Laryngotracheal Stenosis

Post by RitaAnn »

I saw the thoracic specialist in Boston yesterday. He showed me the CAT scans of my neck. I have a narrow point just below the vocal cords that causes breathing problems. Before he can do surgery however, he wants to see if he can find the root cause of this. He ordered some blood work to check for autoimmune diseases that causes this narrowing of the windpipe.

The other, more likely cause is GERD (gastro-esophical reflux disease). I’ve suffered with this for over 20 years. The constant splashing and reflux of acid from the stomach may have eroded this portion of my throat and caused scar tissue to build up over a long period of time.

So, in addition to the blood work, I must elevate the head of my bed 6 inches to avoid regurgitation over night. Next he wants me to talk to my gastrologist about getting a PH test to determine how much acid is going up into the esophagus and up to the trachea. If it is abnormally high, than this is likely the cause of the stenosis.

Then, if the blood work comes back negative for other disease, then it’s getting corrective surgery to stop the acid from backing up into the throat. He won’t do the surgery to remove the diseased portion of the trachea until we know for sure what the cause is. The reason is if he were to remove the diseased portion of the trachea without stopping the root cause, the scar tissue will return and there’s no doing the surgery a second time.

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Re: I Have Laryngotracheal Stenosis

Post by MrKelly »

sounds like you are in good hands

good luck

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Re: I Have Laryngotracheal Stenosis

Post by Ike Bana »

Good luck Rita Ann. It sounds like once they get the cause identified and treated the stenosis can be repaired, so that's hopeful.

GERD is the cause of so many issues and sometimes it doesn't even have to be so bad as to cause symptoms to be causing trouble. I have some dysphagia (occasional ingestion blockage at the esophageal sphincter) caused by GERD that I didn't even know I had.

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Re: I Have Laryngotracheal Stenosis

Post by RitaAnn »

Ike Bana » Mon Oct 26, 2015 8:11 am wrote:Good luck Rita Ann. It sounds like once they get the cause identified and treated the stenosis can be repaired, so that's hopeful.

GERD is the cause of so many issues and sometimes it doesn't even have to be so bad as to cause symptoms to be causing trouble. I have some dysphagia (occasional ingestion blockage at the esophageal sphincter) caused by GERD that I didn't even know I had.
A lot of people have other symptoms instead of the typical burning sensation in the espophagus, such as coughing, sore throats, and regurgitation . I however, experience the burning pain of reflux in addition to all the others.

I go to Boston again tomorrow for another broncoscopy. The doctor here in Maine didn't have the proper equipment to go deeper into the trachea to get a good look because of the narrowing, so the specialist in Boston wants one. Winter is coming on and I hope I don't have to take any more trips there before surgery. The specialist doesn't want me to have gastric surgery in Maine either, feeling that I'd be safer to have the surgeons in Boston perform it in order to monitor the breathing situation. Plus, I had to reschedule my appointment with the gastrologist here in ME because Boston wanted me there for the broncoscopy.

This is turning into a long process.

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Re: I Have Laryngotracheal Stenosis

Post by known2b »

Good luck and prayers.
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Re: I Have Laryngotracheal Stenosis

Post by Libertas »

Hang in there.
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Re: I Have Laryngotracheal Stenosis

Post by RoyPDX »

Hoping your ordeal ends soon and your life returns to normal. Take care.
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RitaAnn
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Re: I Have Laryngotracheal Stenosis

Post by RitaAnn »

Thanks everybody!

I had the procedure yesterday afternoon. The doctor had me put completely under and coming out of anesthesia was no picnic. I had trouble breathing and my throat hurt as hell. The bad news is the narrowing was much smaller than originally thought, so he did a dilation (which is the good news). I'm breathing much better now.

They kept me overnight, neither my sister or me anticipated that. She found a motel room not far out of Boston to stay the night. I was given breathing treatments, was injected with steroids to keep swelling down, and blood thinners to avoid blood clots.

I met with the doctor this morning and he still wants me to get a pH test to determine the severity of the reflux. Before I was discharged, I met with the gastrologist who felt a full gastric bypass, depending on the test results, would be my best bet to avoid the backwash of acid.

I'm going to try to see the gastrologist here in Maine to get the PH test done ASAP.

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RitaAnn
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Re: I Have Laryngotracheal Stenosis

Post by RitaAnn »

I finally got an appointment with a gastrologist for the 29th of this month. Trouble is, it's for an in office procedure that only takes two hours. The test the doctor in Boston requested is like this.

So, I left a message with the dr.s office to make sure they order the correct procedure. At this rate, I'll be going in for another dilation before I get any of this other shit done!

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Re: I Have Laryngotracheal Stenosis

Post by RitaAnn »

I'm sitting here typing this with a tube up my nose and down my throat. The outer part is plugged into a jack into a monitor. I push a button anytime I lay down or sit up, eat or drink, and anytime I have heartburn and log it into a journal. The heartburn comes in spurts.

I warned the nurse that I"m a gagger. The worst times were when she put the gel on the cotton swabs up my nose in preparation and as the first tube probe for the manometry test was coming out. The tube I have in now is the 24 hr. pH test. :eh:

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Re: I Have Laryngotracheal Stenosis

Post by ShineOn »

I suppose that means you are somewhat tethered to a small (monitoring) machine for the day.

Do you have to stay in a hospital for this test?

No food for 24 hours?

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Re: I Have Laryngotracheal Stenosis

Post by RitaAnn »

ShineOn » Tue Jan 12, 2016 11:41 am wrote:I suppose that means you are somewhat tethered to a small (monitoring) machine for the day.

Do you have to stay in a hospital for this test?

No food for 24 hours?
I was able to come home. But yes, I must carry the monitor with me at all times and even sleep with it.

This is how it looks on me. Just call me Miss Piggynose. :rw)

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RitaAnn
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Re: I Have Laryngotracheal Stenosis

Post by RitaAnn »

Oh yes, I can eat. I just have to push a button and mark down everytime I eat and drink.

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Re: I Have Laryngotracheal Stenosis

Post by ShineOn »

RitaAnn » Tue Jan 12, 2016 12:35 pm wrote:Oh yes, I can eat. I just have to push a button and mark down everytime I eat and drink.
Sounds like close-monitoring for a relatively short period of time.

Makes sense.

And of course there's a pretty good chance that this test will provide some worthwhile and useful information. It would have to do that much for people to endure the discomfort.

Though, I'm hoping that by now you are somewhat desensitized to this whole procedure.

And of course the good news is that this procedure will be completed long before this time tomorrow.

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