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    Old 02-06-2004, 09:34 AM   #1
    plm
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    Scar tissue? Samter's syndrome? anybody?

    I have posted on this board before, but it's been many months. I had shortness of breath all the time. So I've been the rounds of tests, etc. with a really crummy pulmo. Kept saying it was asthmatic lungs, but had no explanation for SOB all the time and NO asthma attacks. Didn't add up. Also have hyperinflated lungs. I've even been taking allergy shots from an allergist. Trying to cover all the bases. No relief.

    I FINALLY went to another pulmo who is great. Immediately ordered high resolution CT scan. We were worried because hyperinflated lungs are often caused by emphysema. Ct scan doesn't show any emphysematic changes, but shows a little scar tissue.

    I didn't have time to ask the doc on the phone, but now I'm wondering what could cause scar tissue? I've never smoked. It also said there was some sort of linear something in the middle nodule(? middle something), but he said he didn't think that would cause this SOB. Didn't seem overly concerned about that comment.

    I am allergic to aspirin and have asked two previous pulmos and asthma doc if taking Celebrex could cause this. Everybody said no. This is the first guy who thought that was a great clue. There is something called Samter's syndrome which is people who are asthmatic, aspirin-sensitive, and have nose polyps. He looked in my nose and sure enough, polyps! So I'm not taking Celebrex anymore and seeing if that helps. If no help, in three weeks, he's doing a bronchoscopy where they look in your lungs with a camera.

    Have any of you had anything similar to this? And any clue about lung scarring? I did have bronchitis a lot as a teenager.

     
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    Old 02-06-2004, 10:07 AM   #2
    Howitt44
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    Re: Scar tissue? Samter's syndrome? anybody?

    Quote:
    Originally Posted by plm
    I have posted on this board before, but it's been many months. I had shortness of breath all the time. So I've been the rounds of tests, etc. with a really crummy pulmo. Kept saying it was asthmatic lungs, but had no explanation for SOB all the time and NO asthma attacks. Didn't add up. Also have hyperinflated lungs. I've even been taking allergy shots from an allergist. Trying to cover all the bases. No relief.

    I FINALLY went to another pulmo who is great. Immediately ordered high resolution CT scan. We were worried because hyperinflated lungs are often caused by emphysema. Ct scan doesn't show any emphysematic changes, but shows a little scar tissue.

    I didn't have time to ask the doc on the phone, but now I'm wondering what could cause scar tissue? I've never smoked. It also said there was some sort of linear something in the middle nodule(? middle something), but he said he didn't think that would cause this SOB. Didn't seem overly concerned about that comment.

    I am allergic to aspirin and have asked two previous pulmos and asthma doc if taking Celebrex could cause this. Everybody said no. This is the first guy who thought that was a great clue. There is something called Samter's syndrome which is people who are asthmatic, aspirin-sensitive, and have nose polyps. He looked in my nose and sure enough, polyps! So I'm not taking Celebrex anymore and seeing if that helps. If no help, in three weeks, he's doing a bronchoscopy where they look in your lungs with a camera.

    Have any of you had anything similar to this? And any clue about lung scarring? I did have bronchitis a lot as a teenager.

    Hi PLM,
    I'm glad you're back. I'm Howitt44 and if you remember we had very similar problems - no asthma attacks, small airway function, shortness of breath. etc. Well, my last appointment was back in December. After being on Advair 100/50 for about 6 weeks, ,my tests basically showed no improvement. My small airways were the ones suffering at about 47% of normal. Well, she didn't seem overly concerned. I don't really have shortness of breath anymore as I have been exercizing, trying to lose weight. She wants me to continue on Advair, nasal sprays, Nexium for acid reflux and come back in June unless I have symptoms. My peak flow is 450 - 500 which is above average for me at 5'2" and 47 years old.
    Sorry to hear your symptoms are still with you, but glad you are seeing a good specialist. I have read and heard that most lungs will show some scarring. If you have ever had bronchitis or pneumonia it might show up on an xray. I don't really think that in itself is a cause to worry. I don't know much about aspirin sensitivity except that a lot of people with asthma seem to have that. I have decided that for myself if I don't have any more symptoms than I'm having now I'm going to carry on with life. I have spent the last 3 years worrying over this - I haven't gotten worse, and the only time I really notice shortness of breath is if I dwell on it. I tend to stress over things and I think this time I have. I have been attending a Yoga class, walking, jogging on the treadmill and lifting weights. I need to lose about 75 lbs. which I have really been in denial about for awhile. I'm sure I could breath better with all that weight off, it just makes common sense. But I am glad you are back on and hope your doctor is finding all the answers you need. God Bless!

     
    Old 02-06-2004, 11:53 AM   #3
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    Re: Scar tissue? Samter's syndrome? anybody?

    Howitt44,

    good to hear from you. I wondered why you never emailed, then today I saw your thread where you said your email had been returned. It's nice to talk to someone who is going through the same thing as I am.

    Glad you're feeling a bit better. You know, if I thought this wasn't going to get any worse, I would do like you and just try to forget about it. I don't really think about it all the time, it's just always there. When I went to this new pulmo, my xrays looked more hyperinflated than 9 months ago and my FEF25-75% was lower. That is the numbers that indicate problems in the small airways. So obviously all this darn pulmicort, foradil, and then advair and singulair didn't do any good. I was on that for 8 months, and when the medicine ran out in December, I didn't refill it. It bothered my throat and made my voice raspy. I'm still taking the Singulair, though, and this new doc thinks that is a good idaea.

    But at least I feel like I have a doctor who wants to figure this out!! With the other pulmonary practice, I felt both doctors were just blowing me off.

    These allergy shots aren't helping either, and they are expensive. But since I'm into them 6 months or so, I might as well continue. Every week when I get a shot I have to do the peak flow meter and it's always 450 or above. I'm 49 and 145 pounds.

    What I like best about this new doctor is that he isn't offended that I actually know something about all this, and ask him lots of questions. I know what the numbers mean on the PFT tests and the diffusion tests. It's like we're both detectives trying to figure it out. He doesn't roll his eyes and act like "oh here's another idiot trying to self-diagnose by reading on the internet"! He appreciates what I have to say. We actually discussed things rather than him just saying "here take this medicine and don't ask why."

    So knock on wood, he will figure this out.

    I forget, are you lungs also hyperinflated? If so, what does your doc say about that?

    This doctor told me something interesting. He works in the hospital several mornings a week. Just that morning he had a 28 year old woman come in who couldn't breathe at all. Thought she was going to die. Said she'd been to several doctors who kept saying it was asthma and treating her for that, but it wasn't helping. She was at the end of her rope. He found out that she had a membrane blocking her windpipe. He drew a picture of a circle about 1" diameter (that was her windpipe) and then drew a little circle in it about half the size of a pea. He said that little circle was all that was open in her windpipe. If she got a tiny bit of mucous stuck in it, should would die. So he'd just done (or was going to do) surgery to figure out what the membrane was, hopefully not cancer or something. You could tell he was very irritated at the doctors who had been telling this lady it was asthma, and all the while she kept getting worse and worse. So it is nice to know he's someone who looks beyond the obvious when the clues don't add up.

     
    Old 02-06-2004, 12:07 PM   #4
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    Re: Scar tissue? Samter's syndrome? anybody?

    Quote:
    Originally Posted by plm
    Howitt44,

    good to hear from you. I wondered why you never emailed, then today I saw your thread where you said your email had been returned. It's nice to talk to someone who is going through the same thing as I am.

    Glad you're feeling a bit better. You know, if I thought this wasn't going to get any worse, I would do like you and just try to forget about it. I don't really think about it all the time, it's just always there. When I went to this new pulmo, my xrays looked more hyperinflated than 9 months ago and my FEF25-75% was lower. That is the numbers that indicate problems in the small airways. So obviously all this darn pulmicort, foradil, and then advair and singulair didn't do any good. I was on that for 8 months, and when the medicine ran out in December, I didn't refill it. It bothered my throat and made my voice raspy. I'm still taking the Singulair, though, and this new doc thinks that is a good idaea.

    But at least I feel like I have a doctor who wants to figure this out!! With the other pulmonary practice, I felt both doctors were just blowing me off.

    These allergy shots aren't helping either, and they are expensive. But since I'm into them 6 months or so, I might as well continue. Every week when I get a shot I have to do the peak flow meter and it's always 450 or above. I'm 49 and 145 pounds.

    What I like best about this new doctor is that he isn't offended that I actually know something about all this, and ask him lots of questions. I know what the numbers mean on the PFT tests and the diffusion tests. It's like we're both detectives trying to figure it out. He doesn't roll his eyes and act like "oh here's another idiot trying to self-diagnose by reading on the internet"! He appreciates what I have to say. We actually discussed things rather than him just saying "here take this medicine and don't ask why."

    So knock on wood, he will figure this out.

    I forget, are you lungs also hyperinflated? If so, what does your doc say about that?

    This doctor told me something interesting. He works in the hospital several mornings a week. Just that morning he had a 28 year old woman come in who couldn't breathe at all. Thought she was going to die. Said she'd been to several doctors who kept saying it was asthma and treating her for that, but it wasn't helping. She was at the end of her rope. He found out that she had a membrane blocking her windpipe. He drew a picture of a circle about 1" diameter (that was her windpipe) and then drew a little circle in it about half the size of a pea. He said that little circle was all that was open in her windpipe. If she got a tiny bit of mucous stuck in it, should would die. So he'd just done (or was going to do) surgery to figure out what the membrane was, hopefully not cancer or something. You could tell he was very irritated at the doctors who had been telling this lady it was asthma, and all the while she kept getting worse and worse. So it is nice to know he's someone who looks beyond the obvious when the clues don't add up.
    I have had xrays and no one ever said my lungs were hyperinflated. My small airways are the worst part of it, but I don't think they are worse, just not much better with Advair. He said with asthma the small airways are the first to be constricted and the last to get better...

     
    Old 02-07-2004, 12:10 AM   #5
    hc85
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    Re: Scar tissue? Samter's syndrome? anybody?

    Hyperinflation is a sign of emphysema, yes. I would ask for a test for alpha-1 antitrypsin deficiency, maybe just to be safe. This is an inherited type of emphysema. I have scarring on my lungs. Mine's from infection...Multiple pneumonia's will do that to ya'. I hope you guys get everything figured out. Mind me asking what your FEV1 is? Your FVC? FEF 25-75?

    I don't have a problem with aspirin sensitivity, either. I know of some who do, though...

    Last edited by hc85; 02-07-2004 at 12:11 AM. Reason: added some

     
    Old 02-07-2004, 06:10 AM   #6
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    Re: Scar tissue? Samter's syndrome? anybody?

    Quote:
    Originally Posted by hc85
    Hyperinflation is a sign of emphysema, yes. I would ask for a test for alpha-1 antitrypsin deficiency, maybe just to be safe. This is an inherited type of emphysema. I have scarring on my lungs. Mine's from infection...Multiple pneumonia's will do that to ya'. I hope you guys get everything figured out. Mind me asking what your FEV1 is? Your FVC? FEF 25-75?

    I don't have a problem with aspirin sensitivity, either. I know of some who do, though...
    Thanks for your input. I have been tested for alpha 1 antitrypsin deficiency, and I am within normal range. Normal is 100 - 200, and I am 125. So the low end of normal. New pulmo says he might test again at some point.

    My FEV1 is within normal, in fact 97% of predicted. FVC is 112% of predicted. But I guess the fev1/fvc takes into account the large lung capacity, and is 66 compared to a predicted 75. It is the numbers for small airways that are low. FEF25-75% is 46% and FEF75-85% is 30%.

    My DLCO (diffusion) numbers are quite high. 8 months ago, it was 121% of predicted, now it is 136%. I didn't ask him what the significance of an increase in diffusion numbers might mean,if anything. With emphysema, these numbers are low, with asthma, they are high. This is one of the conflicting pieces of info. High diffusion rates and positive methacholine challenge indicate asthmatic lungs, but x-ray looks like someone with emphysema. He said that if he had no other data and someone just asked him to look at the x-ray, he would immediately think alpha 1 def type emphysema. He said people with smoker's emphysema have x-rays that show something at the top, and mine show whatever this is at the bottom. And people with asthma don't generally have hyperinflated lungs, except maybe in the middle of a bad attack.

    And he wonders why they are MORE hyperinflated than 8 months ago. Your chest cavity is only so big and there's only so much space for the lungs. Mine have expanded as far as they can at the top and sides, and are now stretching downward farther than before. Obviously there is air trapping, but he doesn't know why.

     
    Old 02-07-2004, 09:24 AM   #7
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    Re: Scar tissue? Samter's syndrome? anybody?

    Quote:
    Originally Posted by plm
    Thanks for your input. I have been tested for alpha 1 antitrypsin deficiency, and I am within normal range. Normal is 100 - 200, and I am 125. So the low end of normal. New pulmo says he might test again at some point.

    My FEV1 is within normal, in fact 97% of predicted. FVC is 112% of predicted. But I guess the fev1/fvc takes into account the large lung capacity, and is 66 compared to a predicted 75. It is the numbers for small airways that are low. FEF25-75% is 46% and FEF75-85% is 30%.

    My DLCO (diffusion) numbers are quite high. 8 months ago, it was 121% of predicted, now it is 136%. I didn't ask him what the significance of an increase in diffusion numbers might mean,if anything. With emphysema, these numbers are low, with asthma, they are high. This is one of the conflicting pieces of info. High diffusion rates and positive methacholine challenge indicate asthmatic lungs, but x-ray looks like someone with emphysema. He said that if he had no other data and someone just asked him to look at the x-ray, he would immediately think alpha 1 def type emphysema. He said people with smoker's emphysema have x-rays that show something at the top, and mine show whatever this is at the bottom. And people with asthma don't generally have hyperinflated lungs, except maybe in the middle of a bad attack.

    And he wonders why they are MORE hyperinflated than 8 months ago. Your chest cavity is only so big and there's only so much space for the lungs. Mine have expanded as far as they can at the top and sides, and are now stretching downward farther than before. Obviously there is air trapping, but he doesn't know why.
    I haven't had all the tests you have, just a typical computer spirometry. My large airways are 79%-89% and my small airways are 46%. I had a 40% increase in my small airways after an inhaler, but only like an 8% increase in my large airways. I didn't have a metho challenge test. I was also tested for inherited emphysema, but was normal. My father had emphysema, but smoked 3 packs a day. From what I've read in order to have the inherited type, your mother and father have to carry the gene, and it usually shows up earlier in life. I think the symptoms are pretty dramatic causing weight loss. PLM. what are your daily symptoms? Are you able to exercise normally without difficulty? Do you notice any relief at all with an inhaler? Hope and pray this mystery is solved soon for you.

     
    Old 02-16-2004, 07:54 PM   #8
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    Re: Scar tissue? Samter's syndrome? anybody?

    When you mentioned the webbing in the ladies trachea, you described exactly what I have. It is called subglottic stenosis. Most of us that have this condition are misdiagnosed with asthma or allergies for many years until it is correctly diagnosed. Mine happens to be idiopathic, which means they don't know what causes it. I have had six laser surgeries to open my trachea back up so that I could breathe somewhat normal again. Unfortunately, the only cure for this seems to be what is called a tracheal resection. This is where they cut out the "bad" piece of your trachea and sew the two ends back together. Some stenosis' are caused by trauma, some by GERD and others, like mine, no particular reason. My airway happened to get down to the diameter of a pencil. Very hard to breathe. It sometimes shows up on CT scans, but usually the only way it is discovered is by a bronchoscopy or by the scope that goes up the nose and down the throat ( sorry, forget what it is called). One can opt to have laser surgeries that cut away the scar tissue, which always seems to come back, or they can have other forms of dilations. These are just temporary fixes. The webbings are usually scar tissue. If you happen to have GERD or silent reflux it can cause scar tissue to grow in your trachea. But you would have other symptoms, such as hoarseness, throat clearing, coughing.... your vocal cords would be affected somewhat if it was GERD. Don't know if any of this helps, but if you have not been scoped, it might be something to consider to at least rule out an obstruction. Good luck!!!
    Denice

     
    Old 02-16-2004, 09:13 PM   #9
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    Re: Scar tissue? Samter's syndrome? anybody?

    Quote:
    Originally Posted by ldolson
    When you mentioned the webbing in the ladies trachea, you described exactly what I have. It is called subglottic stenosis. Most of us that have this condition are misdiagnosed with asthma or allergies for many years until it is correctly diagnosed. Mine happens to be idiopathic, which means they don't know what causes it. I have had six laser surgeries to open my trachea back up so that I could breathe somewhat normal again. Unfortunately, the only cure for this seems to be what is called a tracheal resection. This is where they cut out the "bad" piece of your trachea and sew the two ends back together. Some stenosis' are caused by trauma, some by GERD and others, like mine, no particular reason. My airway happened to get down to the diameter of a pencil. Very hard to breathe. It sometimes shows up on CT scans, but usually the only way it is discovered is by a bronchoscopy or by the scope that goes up the nose and down the throat ( sorry, forget what it is called). One can opt to have laser surgeries that cut away the scar tissue, which always seems to come back, or they can have other forms of dilations. These are just temporary fixes. The webbings are usually scar tissue. If you happen to have GERD or silent reflux it can cause scar tissue to grow in your trachea. But you would have other symptoms, such as hoarseness, throat clearing, coughing.... your vocal cords would be affected somewhat if it was GERD. Don't know if any of this helps, but if you have not been scoped, it might be something to consider to at least rule out an obstruction. Good luck!!!
    Denice
    Denice,

    thank you for that information. It is very interesting to learn something new. Of all the things I've read on the web, I hadn't heard about this. I thought it very encouraging that my new doctor is the type who looks beyond the "expected" and tries to find out the real problem. He wants me to be off Celebrex for three weeks just in case this is some sort of long-term reaction to Celebrex (since I'm allergic to aspirin). Then he is going to do a bronchoscopy.

    Could you tell me what your exact symptoms are (were)? Did you feel slightly short of breath for quite a while, and it slowly got worse? Or did yours come on fairly quickly?You mentioned having six laser surgeries. Are you going to have the resection done at some point?

    I don't believe I have a problem with GERD or reflux. I don't cough at all.

    Any further information you can give will be greatly appreciated. Thanks.

     
    Old 02-17-2004, 02:55 AM   #10
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    Re: Scar tissue? Samter's syndrome? anybody?

    Since everyone is on the subject of scarring of the lungs.Maybe someone can explain to me what this means........Ok had penumonie a while back in my left lung.Xray stated I had Chronic changes Bilaterally...Chronic interstitial changes.I freaked out I thought I had interstitial lung disease..So my Dr gives me a full PFT everything came back fine she said go back for another chest x ray in 3 months so I did. I guess the pneumonia left a nasty scar in my left lung and the x ray stated once again Chronic Changes Bilaterally , but atleast they didnt mention interstital changes.
    My question is does CHRONIC MEAN SOMTHING OLD like my dr said or is it something thats progressing.Could it be scarring from my asthma? If anyone has any input I would really appreciate it b/c this is really eating at me.

     
    Old 02-17-2004, 05:26 AM   #11
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    Re: Scar tissue? Samter's syndrome? anybody?

    Quote:
    Originally Posted by likeme28
    Since everyone is on the subject of scarring of the lungs.Maybe someone can explain to me what this means........Ok had penumonie a while back in my left lung.Xray stated I had Chronic changes Bilaterally...Chronic interstitial changes.I freaked out I thought I had interstitial lung disease..So my Dr gives me a full PFT everything came back fine she said go back for another chest x ray in 3 months so I did. I guess the pneumonia left a nasty scar in my left lung and the x ray stated once again Chronic Changes Bilaterally , but atleast they didnt mention interstital changes.
    My question is does CHRONIC MEAN SOMTHING OLD like my dr said or is it something thats progressing.Could it be scarring from my asthma? If anyone has any input I would really appreciate it b/c this is really eating at me.
    You probably need to start a new message thread with your question. You will be more likely to get answers. Give your thread a good title so people will read it. There is also a good message forum at [url]www.copd-support.com[/url].

     
    Old 02-17-2004, 03:35 PM   #12
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    Re: Scar tissue? Samter's syndrome? anybody?

    PLM,

    At first I really didn't notice any symptoms. Those around me did. They said that I sounded as if I smoked five packs of cigarettes a day. I would notice that I would sometimes wheeze when I was doing my daily exercise routine and had even asked my doctor about it during a visit. He could not hear anything out of the ordinary. Three months after this I was starting to have a hard time breathing and at that time I could also hear what every one had been talking about as far as hearing my breathing. I went to the doc for a follow-up on something else and again mentioned the wheezing and this time he could hear it. He had me do a peak flow meter test there in the office and he said I had the lung capacity of a nine year old. They gave me a nebulizer treatment and sent me for xrays, put me on prednisone and a couple of inhalers to see if that would help. He thought it was most likely allergies or asthma. Xrays came back all clear and the medicines did not help me. This was towards the end of the year so I opted to wait until a new year as far as deductibles go to see an allergist. He listened to all of my symptoms and did the scope up the nose and down the throat and saw a webbing past my vocal cords. He then referred me to an ENT who did the same thing and also saw the narrowing. Then came two CT's, which did not show anything. Then came the bronchoscopy in which the narrowing was visible. Two weeks later I had my first laser surgery. The ENT said it had looked as if I had been kicked in the throat at some point in my life. I have some kind of shelf thing happening around my crichoid. I became too much for him to handle and he then referred me to another ENT in Denver. So, now I have had six laserings done and am going for my resection as soon as the scar tissue "looks" right.

    I guess the first symptoms were wheezing or stridor. The out of breath feeling was more like a panic attack feeling to me. Then, since your body is working so hard to get air, you are completely exhausted. You cannot complete a sentence without taking a couple of breaths. It is a condition that is not diagnosed correctly in most cases. More women tend to get it than men..... why? no one seems to know. Hope this helps.... sorry it was soooooo long... It could be longer!!!

    Denice

     
    Old 02-17-2004, 03:54 PM   #13
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    Re: Scar tissue? Samter's syndrome? anybody?

    Quote:
    Originally Posted by ldolson
    PLM,

    At first I really didn't notice any symptoms. Those around me did. They said that I sounded as if I smoked five packs of cigarettes a day. I would notice that I would sometimes wheeze when I was doing my daily exercise routine and had even asked my doctor about it during a visit. He could not hear anything out of the ordinary. Three months after this I was starting to have a hard time breathing and at that time I could also hear what every one had been talking about as far as hearing my breathing. I went to the doc for a follow-up on something else and again mentioned the wheezing and this time he could hear it. He had me do a peak flow meter test there in the office and he said I had the lung capacity of a nine year old. They gave me a nebulizer treatment and sent me for xrays, put me on prednisone and a couple of inhalers to see if that would help. He thought it was most likely allergies or asthma. Xrays came back all clear and the medicines did not help me. This was towards the end of the year so I opted to wait until a new year as far as deductibles go to see an allergist. He listened to all of my symptoms and did the scope up the nose and down the throat and saw a webbing past my vocal cords. He then referred me to an ENT who did the same thing and also saw the narrowing. Then came two CT's, which did not show anything. Then came the bronchoscopy in which the narrowing was visible. Two weeks later I had my first laser surgery. The ENT said it had looked as if I had been kicked in the throat at some point in my life. I have some kind of shelf thing happening around my crichoid. I became too much for him to handle and he then referred me to another ENT in Denver. So, now I have had six laserings done and am going for my resection as soon as the scar tissue "looks" right.

    I guess the first symptoms were wheezing or stridor. The out of breath feeling was more like a panic attack feeling to me. Then, since your body is working so hard to get air, you are completely exhausted. You cannot complete a sentence without taking a couple of breaths. It is a condition that is not diagnosed correctly in most cases. More women tend to get it than men..... why? no one seems to know. Hope this helps.... sorry it was soooooo long... It could be longer!!!

    Denice
    Denice,

    Thanks so much for the info. I don't mind that it's a long message. I think it is great to learn more about what can be causing problems. I think it is a real shame that people waste so much time (and money) doing treatments that don't help.

    I think that is interesting that an allergist figured this out and sent you to an ENT. I went to an allergy/asthma clinic. He never looked for anything like that. In fact, he admitted that he's never seen asthma behave like my lungs -- just a constant slight shortness of breath. He didn't think asthma would be the problem. But when he saw that my methacholine challenge had been positive (even though I'ven ever had an asthma attack), he said maybe the allergy shots would help. So I've spent 9 months, and LOTS of dollars on those. I think it's a complete waste of money. I tested positive to quite a few allergens, but I don't have a runny nose or watery eyes or anything like that. And these shots haven't made a BIT of difference in my breathing. So frankly, even though I test positive to these allergins, I don't think they bother me.

    Too bad my allergist wasn't like yours. He should have said, "You know, this just doesn't add up. I've never seen asthma act like this before. Let's look into this and see if we can figure something else out." Instead, he just saw dollar signs and talked me into getting shots. I'm sure it's been over $2000 by now. I think you were lucky to have found the allergist you went to!!

    The two pulmonary doctors I saw said pretty much the same thing -- never saw asthma behave like this. Yet they insisted on treating me for asthma!! The last time I saw that pulmo, I asked if she had any other ideas, and she said no, but she'd be happy to send my records to another doctor. I asked about a CT scan. She said "I don't think it's indicated, but I'll order one if you want." So I said let's wait a few weeks and see if Advair helps. It didn't, and I called back. Then she said no, she wouldn't order a CT scan!! And wouldn't even get on the phone and discuss it with me, just passed the message through the receptionist!

    Thank goodness I have now found a doctor who seems willing to try to get to the bottom of this. I hope he figures it out.

     
    Old 02-17-2004, 06:53 PM   #14
    ldolson
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    Join Date: Aug 2003
    Location: Cheyenne, Wyoming
    Posts: 170
    ldolson HB User
    Re: Scar tissue? Samter's syndrome? anybody?

    I can absolutely relate to all of the money that this stuff costs!! I was one of those people who never got sick. When I had my $350 deductible, I never met it. So I had raised my deductible to $1000. Well of course that is when all of this hit. So along with my deductible, there was the $5000 copay and then the costs that were "above usual and customary" charges. So my first year, out of pocket was over $7000. Last year I went back to the $350 deductible and then I had a copay of $2000. And now we start another year <sigh>. I guess I could look at the bright side and be thankful that I didn't have to pay the whole $200,000.00 this thing has ended up costing with all of the testing and hospital stays. That and I was VERY lucky to be diagnosed so quickly by that great allergist. Many women that I have talked with on an online support group for this silly condition have been treated for asthma for 5 - 10 yrs before properly diagnosed.

    Some people who get the stenosis get it from trauma, as I previously mentioned. Trauma can be from prior intubations. I would suggest that your doc at least listens to your throat with a stethiscope.... not your lungs, but your throat..... some of the docs have picked up on a stenosis in that fashion. I can understand your frustration with all that is going on. Some people just don't know what it means not being able to breathe. I remember being embarrassed about "sounding" out of shape. I worked out every day and sounded like I hadn't exercised in years, if ever. I really did not realize how close to dying I was. A 4mm opening to breathe through is not much. Thank goodness I didn't catch a cold before I was lasered. I think in retrospect I was very much in denial that there was something wrong with me. And now that I have had this for just over two years, everything seems to be wrong with me!! After being on steroids countless times during the last two years my immune system is shot to heck. I don't remember what it feels like to feel good or normal anymore.

    I wish you the best of luck at being diagnosed correctly. Keep me informed. And if you ever do get that CT scan, insist on a fine cut one. Most CT's are done with scans every 3mm.... a fine cut one scans every 1mm. And most of all, remember you are your own best advocate. Keep those docs on their toes!!

    Denice

     
    Old 02-17-2004, 07:06 PM   #15
    plm
    Senior Member
    (female)
     
    Join Date: May 2003
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    Re: Scar tissue? Samter's syndrome? anybody?

    Denice,

    I'm glad you found an online support group. They are great!

    I did get a high resolution CT scan from this new doc. About a week ago. It said there were no emphysemous type changes, but said something about a lateral line in the middle lobe. Or something like that; I don't quite remember. But he said whatever that is wouldn't be causing this feeling. And he didn't sound horribly concerned about whatever it was.

    One of the big mysteries is why my lungs are hyperinflated, like someone with emphysema. And my small airways are obstructed, like someone with emphysema.

    Did your x-rays show hyperinflated lungs? I'm wondering if struggling to get air through a little hole could cause that. Doesn't seem like it could.

     
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