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I am very, very tired of dealing with not being able to breathe!!!

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GERD & Acid Reflux
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Posted 9/9/2010 3:05 AM (GMT 0)
I am new to this forum. I am a 50 year old female and I have LPR...I guess. The doctors tried to say it was acid reflux but I don't suffer from gerd and everyone online is suffering. I don't burn but I do have the sensation of something crawling up my throat. The doctors say I just don't notice it because unlike most people, I have the gerd during the day and not at night so I am constantly swallowing, which is why I haven't noticed it. I am still not sure I believe that acid reflux is my issue.

Nevertheless, I have been dealing with tracheal stenosis for almost 5 years now. At first, the doctors didn't believe me, so I made an appointment with a pulmonologist and he tested my lung function (because that is what pulmonologists do) and then they did x-rays to see what the problem was and told me I have tracheal stenosis. The doctor was scared to do a broncoscophy because he was afraid I would choke on the tube they put down your throat...my windpipe was about the size of a straw and probably is now too. The ENT's wanted to trach me and I don't want to be drooling out of my throat so I told them no. Then they referred me to a doctor that does the laser micrometer surgery with a CO2 suspension and I had 2 of those surgeries and the breathing was improved but still not great. This doctor is arrogant and wishy-washy. He told me I would have to have these surgeries every 2 to 3 months until I got to the point where I was breathing well, then he would monitor me and I would still have to have the surgery but not as often. So I had 2 of the surgeries and then went back and he scheduled another surgery then he cancelled it just before I was to have the surgery because I also have heart problems and he said my cardiologist wouldn't sign off on the surgery and oh, I didn't really "need" it anyway and that it was elective at this point and I am thinking but I still can't breathe!!! So after the surgery was cancelled, I marched myself to my cardiologists office and asked what was going on and basically, they were having a testosterone match and I am the one that lost. When I went back to the surgeon 3 months later, he yelled at me for not coming back sooner and we scheduled another surgery and again, on the day of surgery he cancelled it and said, "Oh, you don't need it." I was still not breathing well and as I sucked in air to let my supervisor know what was going on, she gasped because of the noise my deep breath made. I was clearly upset so I haven't been back to the jerk and I would rather not breathe than to go back to him. Now my breathing is worse than ever. I feel light-headed a lot and I am afraid to lay down to sleep because I think I won't get enough air to wake back up. When my dogs hear me breathe, they look at me like they think I am going to drop at any moment and I feel like I might. My breathing now is the worst it has ever been and to be honest, I am tired of fighting everyone just so I can breathe. There is no one else to go to in Georgia, that I know of but I really can't afford the surgery anyway. I can't even get a deep breath by yawning. I have to actually try to breathe deep and then hold the air in my throat until my trachea can pull in enough air to get a deep breath. This is so debilitating that I think I may do something really drastic because I am suffering so much. I just don't know what to do anymore.
Posted 9/9/2010 3:24 AM (GMT 0)
Hi tittytappin,
My recommendation is to find another doctor and don't give up. You also sound like you could use a counsellor to help you with some of the hopelessness and negative thoughts you're having related to your issue (which are all fair but are not helping you get better). Speak to a GP and request that he refer you to someone else, they have directories for this kind of thing and certainly there is more than one doctor that can perform the surgery in any well populated area. If possible speak with your cardiologist about who else you can see that he would be more willing to work with or, if you've lost faith in him as well, ask the GP for other options in cardiology as well.

Most importantly do not give up. Your health is all you've got so it's worth fighting for!
Posted 9/9/2010 3:49 AM (GMT 0)
Sirkit is right, Tippytappin. You need to find some new docs who will listen to you respectfully, and help you with your problems. Don't give up! Counseling does sound in order. Anyone going through what you're going through needs some help in that regard.

It is true that you can have Silent GERD, and have no knowledge that it is happening. If GERD is what is narrowing your trachea, then it would definitely be worth your while to see a GI Doc in addition to the others, and get some testing done.

I had asthma made worse by GERD, and I know what it means to not be able to breathe.
Take care of yourself. We're here to support and help in any way we can.
Denise
Posted 9/9/2010 5:04 PM (GMT 0)
I want to thank you both for your quick responses. I know the feeling of hopelessness that I have is because I can't breathe but I also feel that almost anything would be better than this, even though I know there are others worse off than me. I have lost faith in the cardiologist. I have changed doctors and have an appointment with him on Wednesday. By asking around, I have also learned there are other doctors that can do the surgery but they will only take you on as a patient through a referral by your primary care physician, so I hope this doctor will care more about his patients than his ego. Thank you so much for letting me vent my frustrations to people who know what I am going through as that is the greatest help of all!
Posted 9/9/2010 5:06 PM (GMT 0)
tippytappin

Welcome to our world,  we are glad you joined us and I look forward to getting to know you better.

The trachea (windpipe) is the breathing tube that begins just below the voice box and leads into the lungs. The trachea is made up of pliable cartilage and connective tissue that can expand and contract. Narrowing of this tube (tracheal stenosis) can be caused when tissue within the trachea becomes inflamed due to a medical condition, such as acid reflux.

The information I have states that Tracheal resection is so far the best alternative to cure the stenosis completely.

I agree, get rid of your curent physician and find someone who is working for you and never should you be verbally abused by any physician.  This is unacceptable in my opinion.  Pateints have the right to information and respect at all times.

Posted 9/10/2010 12:15 AM (GMT 0)
Tippy,
I see you're from Georgia. Are you near Athens? I can get you in touch with a great pulmologist and GI there. They're the best in the area. Turn on your email and I'll send you their names and phone numbers. Go to contacts and change your profile.

You should not have to endure such torture.
Posted 9/12/2010 2:22 AM (GMT 0)
National Jewish in Denver is the #1 Respiratory Hospital; it's where I went because I couldn't breathe and they are the ones who figured out why; I had silent GERD, I was aspirating into my lungs. I do have permanent lung damage from this, but I had the Nissen and it stopped any further damage.
If anyone can figure it out, National Jewish can. It's worth the trip and they will believe you.
Posted 9/29/2010 3:13 AM (GMT 0)
I am in Augusta, Georgia, so not far from Athens. I went to another doctor yesterday that I researched to find that yes, he does to tracheal resections but I am still very frustrated. He tried to talk me out of it and into going back to the other doctor that is arrogant and rude because "they are friends". I said, you know, I work at a local medical library and I have researched this through all of the documentation we have there and they ALL say a tracheal resection will fix it once and for all and he had to agree. He also said the other doctor has had more "practice" even though he has done them and went on to say the laser surgeries may have made it so that I can't have a tracheal resection without there being a risk of permanently losing my voice, because, he said, there are "those" people too. All I said was, "But I bet they can breathe." and he confirmed that yes, they could breathe, then hung his head and said if I didn't want to go back to the other doctor for more laser and dilations that I could go to South Carolina or Emory. I still asked what was wrong with the resection and he said this: A resection is cutting out the bad section of your windpipe, pulling out the tracheal rings, cleaning them off and then putting them back in, usually with a piece of one of my ribs used as support (because the rings are just cartilage) and so performing a resection would depend on how much tissue is undamaged and since I have subglottic stenosis, he thinks (although he was not sure) that the damage will be too close to my voicebox and he says at that point he only has about 1 centimeter to get it right or I will never be able to speak again. Is this true? Does anybody have experience with this? My friend was devastated at the thought of I guess, never hearing me talk again but I just want to breathe. I asked how he could be so sure I was in that position if he hadn't even looked at an x-ray and he said, okay then, we will do an air flow cat scan with contrast that will tell him the path my air supply takes when it goes through my trachea and we will sit down and look at it together. Then he asked why I didn't want the laser surgeries anymore, asked what they were like and what was done and if they kept me in the hospital. I said they are an outpatient surgery, they put me out with ether then they stick a laser down my throat with a circular guide and make small cuts in the scar tissue and sometimes put a balloon in my throat to expand the area and when I wake up, I sit in recovery with a sore throat for an hour, then they give me a bottle of pain killers and send me home around 1pm or 2pm. Then he asked how long the relief lasted and I said people start hearing my breathing again at around 4 months. I have the cat scan next Friday but this doctor sure seemed like he wanted to get out of it. I get the feeling no one wants to help me. What can I do?
Posted 9/29/2010 10:14 PM (GMT 0)
Have you've thought of trying a different doctor? Augusta is full of doctors surely there is one who feels confident in doing the surgery, or you can try Athens. There's some great doctors up here. I know a wonderul pulmonary group in Athens that treats me:
Athens Pulmonary and Allergy Partners. My doctor's Jane Parks and she's great!
I bet they can get you in with a great surgeon.
Posted 12/30/2010 2:22 AM (GMT 0)
Hi tippytappin

I hear you... & your frustration. I've been there... I had a cricotracheal resection in August after 8yrs of dilations & also rib cartlidge graft & tracheostomy for 7mths. Yes..resection is the only potential cure for idiopathic tracheal or subglottic stenosis although it can be maganed in some cases by balloon dilation. Avoid laser.. it can make the tissue hard so if/when you have a resection it is more difficult - like cutting & stitching through concrete my surgeon said... You need a Thoracic surgeon or Otolaryngologist (ENT). I'm in Australia so can't help you except to say Boston General for Thoracic & Cincinatti Childrens for ENT - they are the most experienced in resections for this condition. I thankfully found a surgeon in Aus who spent 2yrs at Cincinatti. There are many of us with this!!!! Join Facebook group "Living with Idiopathic Subglottic Stenosis" & you'll find lots & lots of us who can share our experiences & knowledge & offer support. All the best! Jo

Posted 3/1/2012 5:05 AM (GMT 0)

 Wow I cannot believe that I finally found some people who are dealing with the exact same things that I am going thru.  I spent 2.5 years telling my G.P. that there was something wrong with my breathing and it was not asthma, but he kept trying different puffers and pills.  What a crock, when I finally got referred to a respirologist, within 1.5 months I had a diagnosis and was on my way to see a Thoracic surgeon.  I had two dilations last year and was wondering what the success rate was.  The surgeon seemed to be pretty optimistic that I would not be back, but I am starting to feel that my breathing is getting worse again.  Anyone have any comments on what their success rate has been.....  I had my surgery done at Toronto General in Canada, and I was used as a teaching case, I guess it is fairly rare to get this.  My gp just started me on a ppi (dexisilant- just new on the market) saying that I may have silent GERD as well.

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