Seeing Speech for Vocal Cord Dysfunction
- Thread starter mamerth
- Start date
JennifersHope
New member
THough I do not have CF I am currently in the hospital I had a severe asthma attack that led me to be intubated in the MICU at MUSC. Once I was extubated on Saturday, I had horrible largneal spasms and I have true vocal chord dysfuction, I had a videostroboscopy done where they went into my mouth and studied my vocal chords, I have it so bad that even though I was not in an attack, just under normal conditions my vocal chords collapse over my airway,
Scarry, for me so far the only thing that has helped is being intubated and then after that being put on Helium oxygen called helioox, it works great at getting through the swollen areas,
They are currently considering putting botox in my vocal chords to shrink them back to help me and also there has been talk of a stent in my throat,
We will see, right now I am still in th hospital and tehy are trying other ways to get my throat and chords to calm down]
It is scary as anything to have your total throat close up on you, way worse then a plain old asthma attack,,,
Good luck, the test itself didnt hurt, they stick the tube in your mouth, the tube has a camera on the front of the tip and then make you say a whole bunch of differrent sounds and words to see how your chords react.. Mine did bad, Hope yours does better, because the tools they taught nme to use when it happends do not work
Scarry, for me so far the only thing that has helped is being intubated and then after that being put on Helium oxygen called helioox, it works great at getting through the swollen areas,
They are currently considering putting botox in my vocal chords to shrink them back to help me and also there has been talk of a stent in my throat,
We will see, right now I am still in th hospital and tehy are trying other ways to get my throat and chords to calm down]
It is scary as anything to have your total throat close up on you, way worse then a plain old asthma attack,,,
Good luck, the test itself didnt hurt, they stick the tube in your mouth, the tube has a camera on the front of the tip and then make you say a whole bunch of differrent sounds and words to see how your chords react.. Mine did bad, Hope yours does better, because the tools they taught nme to use when it happends do not work
JennifersHope
New member
THough I do not have CF I am currently in the hospital I had a severe asthma attack that led me to be intubated in the MICU at MUSC. Once I was extubated on Saturday, I had horrible largneal spasms and I have true vocal chord dysfuction, I had a videostroboscopy done where they went into my mouth and studied my vocal chords, I have it so bad that even though I was not in an attack, just under normal conditions my vocal chords collapse over my airway,
Scarry, for me so far the only thing that has helped is being intubated and then after that being put on Helium oxygen called helioox, it works great at getting through the swollen areas,
They are currently considering putting botox in my vocal chords to shrink them back to help me and also there has been talk of a stent in my throat,
We will see, right now I am still in th hospital and tehy are trying other ways to get my throat and chords to calm down]
It is scary as anything to have your total throat close up on you, way worse then a plain old asthma attack,,,
Good luck, the test itself didnt hurt, they stick the tube in your mouth, the tube has a camera on the front of the tip and then make you say a whole bunch of differrent sounds and words to see how your chords react.. Mine did bad, Hope yours does better, because the tools they taught nme to use when it happends do not work
Scarry, for me so far the only thing that has helped is being intubated and then after that being put on Helium oxygen called helioox, it works great at getting through the swollen areas,
They are currently considering putting botox in my vocal chords to shrink them back to help me and also there has been talk of a stent in my throat,
We will see, right now I am still in th hospital and tehy are trying other ways to get my throat and chords to calm down]
It is scary as anything to have your total throat close up on you, way worse then a plain old asthma attack,,,
Good luck, the test itself didnt hurt, they stick the tube in your mouth, the tube has a camera on the front of the tip and then make you say a whole bunch of differrent sounds and words to see how your chords react.. Mine did bad, Hope yours does better, because the tools they taught nme to use when it happends do not work
JennifersHope
New member
THough I do not have CF I am currently in the hospital I had a severe asthma attack that led me to be intubated in the MICU at MUSC. Once I was extubated on Saturday, I had horrible largneal spasms and I have true vocal chord dysfuction, I had a videostroboscopy done where they went into my mouth and studied my vocal chords, I have it so bad that even though I was not in an attack, just under normal conditions my vocal chords collapse over my airway,
<br />
<br />Scarry, for me so far the only thing that has helped is being intubated and then after that being put on Helium oxygen called helioox, it works great at getting through the swollen areas,
<br />
<br />They are currently considering putting botox in my vocal chords to shrink them back to help me and also there has been talk of a stent in my throat,
<br />
<br />We will see, right now I am still in th hospital and tehy are trying other ways to get my throat and chords to calm down]
<br />
<br />It is scary as anything to have your total throat close up on you, way worse then a plain old asthma attack,,,
<br />
<br />Good luck, the test itself didnt hurt, they stick the tube in your mouth, the tube has a camera on the front of the tip and then make you say a whole bunch of differrent sounds and words to see how your chords react.. Mine did bad, Hope yours does better, because the tools they taught nme to use when it happends do not work
<br />
<br />Scarry, for me so far the only thing that has helped is being intubated and then after that being put on Helium oxygen called helioox, it works great at getting through the swollen areas,
<br />
<br />They are currently considering putting botox in my vocal chords to shrink them back to help me and also there has been talk of a stent in my throat,
<br />
<br />We will see, right now I am still in th hospital and tehy are trying other ways to get my throat and chords to calm down]
<br />
<br />It is scary as anything to have your total throat close up on you, way worse then a plain old asthma attack,,,
<br />
<br />Good luck, the test itself didnt hurt, they stick the tube in your mouth, the tube has a camera on the front of the tip and then make you say a whole bunch of differrent sounds and words to see how your chords react.. Mine did bad, Hope yours does better, because the tools they taught nme to use when it happends do not work
My son was treated for vocal cord dysfunction but he didn't have it, so for us the experience was pretty negative. He was referred by his (former) cf pulmonologist because he had a persistent cough that wouldn't go away. He was only culturing staph aureus and his md didn't think that should have caused this cough. So in we went because he said we needed to, I tried very hard to keep an open mind.
If you see the md he may put that probe thing up your nose with some numbing beforehand. The guy we saw, not at National Jewish, jammed it up my poor sons nose 4 weeks post sinus surgery! His sinus ENT has used that probe thing a lot but he was always so gentle. So if you are concerned about this speak up early on and tell the md you are anxious to have that put up your nose. Maybe they could give you something to relax you. For us it all happened so fast and he did go right down to the vocal cord where my son had callouses from coughing.
Next we went to see the speech therapist who was very nice, calming, assured us she could help us with some methods and relaxation exercises. If you are going to learn to relax your vocal cord this may help you. It didn't help my son because this was really not a proper diagnosis for him. Basically she had him do some breathing exercises, blow bubbles which supposedly opens your vocal cords or something, some visualization exercises, swallowing exercises, and stuff like that. Now for us he was coughing the ENTIRE time and none of these things were helping. The worst part as his mother looking back was when we went home and he coughed I would say "swallow your cough", well he couldn't do that, I mean imagine having some cf related thing going on and someone telling you swallow your cough! I was trying to really be supportive of what this therapist was doing, she told me this was my line when he coughed. She did tell me she saw people with what they labeled "habit cough" all the time and she assured me these things would help him.
The story goes on and on, but be sure who ever works with you is very aware of your CF and how that may play a role in whatever you are experiencing. Our CF MD was working with us and with the speech therapist but they were really off the mark for us. Fortunately I think my son has forgiven me. ;-)
I wish you the best of luck and I hope my story has not discouraged you. Just go with your gut, and if they can help you great, but if it feels wrong advocate for yourself.
Tara
oh and the botox on the vocal cords, they did talk to us about this. For us it was to relax the muscle which gave my son the sensation he was going to cough. I was concerned about this because even though my son was coughing way too much, how would I know if he were sick and was supposed to cough ? They never really answered that one except to say not a lot of research has been done on that for people with CF. This was 2 years ago so maybe that has changed.
If you see the md he may put that probe thing up your nose with some numbing beforehand. The guy we saw, not at National Jewish, jammed it up my poor sons nose 4 weeks post sinus surgery! His sinus ENT has used that probe thing a lot but he was always so gentle. So if you are concerned about this speak up early on and tell the md you are anxious to have that put up your nose. Maybe they could give you something to relax you. For us it all happened so fast and he did go right down to the vocal cord where my son had callouses from coughing.
Next we went to see the speech therapist who was very nice, calming, assured us she could help us with some methods and relaxation exercises. If you are going to learn to relax your vocal cord this may help you. It didn't help my son because this was really not a proper diagnosis for him. Basically she had him do some breathing exercises, blow bubbles which supposedly opens your vocal cords or something, some visualization exercises, swallowing exercises, and stuff like that. Now for us he was coughing the ENTIRE time and none of these things were helping. The worst part as his mother looking back was when we went home and he coughed I would say "swallow your cough", well he couldn't do that, I mean imagine having some cf related thing going on and someone telling you swallow your cough! I was trying to really be supportive of what this therapist was doing, she told me this was my line when he coughed. She did tell me she saw people with what they labeled "habit cough" all the time and she assured me these things would help him.
The story goes on and on, but be sure who ever works with you is very aware of your CF and how that may play a role in whatever you are experiencing. Our CF MD was working with us and with the speech therapist but they were really off the mark for us. Fortunately I think my son has forgiven me. ;-)
I wish you the best of luck and I hope my story has not discouraged you. Just go with your gut, and if they can help you great, but if it feels wrong advocate for yourself.
Tara
oh and the botox on the vocal cords, they did talk to us about this. For us it was to relax the muscle which gave my son the sensation he was going to cough. I was concerned about this because even though my son was coughing way too much, how would I know if he were sick and was supposed to cough ? They never really answered that one except to say not a lot of research has been done on that for people with CF. This was 2 years ago so maybe that has changed.
My son was treated for vocal cord dysfunction but he didn't have it, so for us the experience was pretty negative. He was referred by his (former) cf pulmonologist because he had a persistent cough that wouldn't go away. He was only culturing staph aureus and his md didn't think that should have caused this cough. So in we went because he said we needed to, I tried very hard to keep an open mind.
If you see the md he may put that probe thing up your nose with some numbing beforehand. The guy we saw, not at National Jewish, jammed it up my poor sons nose 4 weeks post sinus surgery! His sinus ENT has used that probe thing a lot but he was always so gentle. So if you are concerned about this speak up early on and tell the md you are anxious to have that put up your nose. Maybe they could give you something to relax you. For us it all happened so fast and he did go right down to the vocal cord where my son had callouses from coughing.
Next we went to see the speech therapist who was very nice, calming, assured us she could help us with some methods and relaxation exercises. If you are going to learn to relax your vocal cord this may help you. It didn't help my son because this was really not a proper diagnosis for him. Basically she had him do some breathing exercises, blow bubbles which supposedly opens your vocal cords or something, some visualization exercises, swallowing exercises, and stuff like that. Now for us he was coughing the ENTIRE time and none of these things were helping. The worst part as his mother looking back was when we went home and he coughed I would say "swallow your cough", well he couldn't do that, I mean imagine having some cf related thing going on and someone telling you swallow your cough! I was trying to really be supportive of what this therapist was doing, she told me this was my line when he coughed. She did tell me she saw people with what they labeled "habit cough" all the time and she assured me these things would help him.
The story goes on and on, but be sure who ever works with you is very aware of your CF and how that may play a role in whatever you are experiencing. Our CF MD was working with us and with the speech therapist but they were really off the mark for us. Fortunately I think my son has forgiven me. ;-)
I wish you the best of luck and I hope my story has not discouraged you. Just go with your gut, and if they can help you great, but if it feels wrong advocate for yourself.
Tara
oh and the botox on the vocal cords, they did talk to us about this. For us it was to relax the muscle which gave my son the sensation he was going to cough. I was concerned about this because even though my son was coughing way too much, how would I know if he were sick and was supposed to cough ? They never really answered that one except to say not a lot of research has been done on that for people with CF. This was 2 years ago so maybe that has changed.
If you see the md he may put that probe thing up your nose with some numbing beforehand. The guy we saw, not at National Jewish, jammed it up my poor sons nose 4 weeks post sinus surgery! His sinus ENT has used that probe thing a lot but he was always so gentle. So if you are concerned about this speak up early on and tell the md you are anxious to have that put up your nose. Maybe they could give you something to relax you. For us it all happened so fast and he did go right down to the vocal cord where my son had callouses from coughing.
Next we went to see the speech therapist who was very nice, calming, assured us she could help us with some methods and relaxation exercises. If you are going to learn to relax your vocal cord this may help you. It didn't help my son because this was really not a proper diagnosis for him. Basically she had him do some breathing exercises, blow bubbles which supposedly opens your vocal cords or something, some visualization exercises, swallowing exercises, and stuff like that. Now for us he was coughing the ENTIRE time and none of these things were helping. The worst part as his mother looking back was when we went home and he coughed I would say "swallow your cough", well he couldn't do that, I mean imagine having some cf related thing going on and someone telling you swallow your cough! I was trying to really be supportive of what this therapist was doing, she told me this was my line when he coughed. She did tell me she saw people with what they labeled "habit cough" all the time and she assured me these things would help him.
The story goes on and on, but be sure who ever works with you is very aware of your CF and how that may play a role in whatever you are experiencing. Our CF MD was working with us and with the speech therapist but they were really off the mark for us. Fortunately I think my son has forgiven me. ;-)
I wish you the best of luck and I hope my story has not discouraged you. Just go with your gut, and if they can help you great, but if it feels wrong advocate for yourself.
Tara
oh and the botox on the vocal cords, they did talk to us about this. For us it was to relax the muscle which gave my son the sensation he was going to cough. I was concerned about this because even though my son was coughing way too much, how would I know if he were sick and was supposed to cough ? They never really answered that one except to say not a lot of research has been done on that for people with CF. This was 2 years ago so maybe that has changed.
My son was treated for vocal cord dysfunction but he didn't have it, so for us the experience was pretty negative. He was referred by his (former) cf pulmonologist because he had a persistent cough that wouldn't go away. He was only culturing staph aureus and his md didn't think that should have caused this cough. So in we went because he said we needed to, I tried very hard to keep an open mind.
<br />
<br />If you see the md he may put that probe thing up your nose with some numbing beforehand. The guy we saw, not at National Jewish, jammed it up my poor sons nose 4 weeks post sinus surgery! His sinus ENT has used that probe thing a lot but he was always so gentle. So if you are concerned about this speak up early on and tell the md you are anxious to have that put up your nose. Maybe they could give you something to relax you. For us it all happened so fast and he did go right down to the vocal cord where my son had callouses from coughing.
<br />
<br />Next we went to see the speech therapist who was very nice, calming, assured us she could help us with some methods and relaxation exercises. If you are going to learn to relax your vocal cord this may help you. It didn't help my son because this was really not a proper diagnosis for him. Basically she had him do some breathing exercises, blow bubbles which supposedly opens your vocal cords or something, some visualization exercises, swallowing exercises, and stuff like that. Now for us he was coughing the ENTIRE time and none of these things were helping. The worst part as his mother looking back was when we went home and he coughed I would say "swallow your cough", well he couldn't do that, I mean imagine having some cf related thing going on and someone telling you swallow your cough! I was trying to really be supportive of what this therapist was doing, she told me this was my line when he coughed. She did tell me she saw people with what they labeled "habit cough" all the time and she assured me these things would help him.
<br />
<br />The story goes on and on, but be sure who ever works with you is very aware of your CF and how that may play a role in whatever you are experiencing. Our CF MD was working with us and with the speech therapist but they were really off the mark for us. Fortunately I think my son has forgiven me. ;-)
<br />
<br />I wish you the best of luck and I hope my story has not discouraged you. Just go with your gut, and if they can help you great, but if it feels wrong advocate for yourself.
<br />
<br />Tara
<br />
<br />oh and the botox on the vocal cords, they did talk to us about this. For us it was to relax the muscle which gave my son the sensation he was going to cough. I was concerned about this because even though my son was coughing way too much, how would I know if he were sick and was supposed to cough ? They never really answered that one except to say not a lot of research has been done on that for people with CF. This was 2 years ago so maybe that has changed.
<br />
<br />If you see the md he may put that probe thing up your nose with some numbing beforehand. The guy we saw, not at National Jewish, jammed it up my poor sons nose 4 weeks post sinus surgery! His sinus ENT has used that probe thing a lot but he was always so gentle. So if you are concerned about this speak up early on and tell the md you are anxious to have that put up your nose. Maybe they could give you something to relax you. For us it all happened so fast and he did go right down to the vocal cord where my son had callouses from coughing.
<br />
<br />Next we went to see the speech therapist who was very nice, calming, assured us she could help us with some methods and relaxation exercises. If you are going to learn to relax your vocal cord this may help you. It didn't help my son because this was really not a proper diagnosis for him. Basically she had him do some breathing exercises, blow bubbles which supposedly opens your vocal cords or something, some visualization exercises, swallowing exercises, and stuff like that. Now for us he was coughing the ENTIRE time and none of these things were helping. The worst part as his mother looking back was when we went home and he coughed I would say "swallow your cough", well he couldn't do that, I mean imagine having some cf related thing going on and someone telling you swallow your cough! I was trying to really be supportive of what this therapist was doing, she told me this was my line when he coughed. She did tell me she saw people with what they labeled "habit cough" all the time and she assured me these things would help him.
<br />
<br />The story goes on and on, but be sure who ever works with you is very aware of your CF and how that may play a role in whatever you are experiencing. Our CF MD was working with us and with the speech therapist but they were really off the mark for us. Fortunately I think my son has forgiven me. ;-)
<br />
<br />I wish you the best of luck and I hope my story has not discouraged you. Just go with your gut, and if they can help you great, but if it feels wrong advocate for yourself.
<br />
<br />Tara
<br />
<br />oh and the botox on the vocal cords, they did talk to us about this. For us it was to relax the muscle which gave my son the sensation he was going to cough. I was concerned about this because even though my son was coughing way too much, how would I know if he were sick and was supposed to cough ? They never really answered that one except to say not a lot of research has been done on that for people with CF. This was 2 years ago so maybe that has changed.
I actually don't cough that much... by CF doctor standards. I am having the testing because I get a tight chest (like an asthma attack) and I loose my ability to talk. Nothing like being tight chested and not having the ability to communicate. FREAKS ME OUT!
Asthma medications don't help me. I am hoping that if it is something to do with my vocal cords then we can treat things. At this point the only thing that helps is warm tea and lots (and lots) of relaxing. We have been tempted to go to the ER a few times but the tea has calmed things down and I get my voice back. My throat has been giving me lots of fits lately (even swallowing).
Asthma medications don't help me. I am hoping that if it is something to do with my vocal cords then we can treat things. At this point the only thing that helps is warm tea and lots (and lots) of relaxing. We have been tempted to go to the ER a few times but the tea has calmed things down and I get my voice back. My throat has been giving me lots of fits lately (even swallowing).
I actually don't cough that much... by CF doctor standards. I am having the testing because I get a tight chest (like an asthma attack) and I loose my ability to talk. Nothing like being tight chested and not having the ability to communicate. FREAKS ME OUT!
Asthma medications don't help me. I am hoping that if it is something to do with my vocal cords then we can treat things. At this point the only thing that helps is warm tea and lots (and lots) of relaxing. We have been tempted to go to the ER a few times but the tea has calmed things down and I get my voice back. My throat has been giving me lots of fits lately (even swallowing).
Asthma medications don't help me. I am hoping that if it is something to do with my vocal cords then we can treat things. At this point the only thing that helps is warm tea and lots (and lots) of relaxing. We have been tempted to go to the ER a few times but the tea has calmed things down and I get my voice back. My throat has been giving me lots of fits lately (even swallowing).
I actually don't cough that much... by CF doctor standards. I am having the testing because I get a tight chest (like an asthma attack) and I loose my ability to talk. Nothing like being tight chested and not having the ability to communicate. FREAKS ME OUT!
<br />
<br />Asthma medications don't help me. I am hoping that if it is something to do with my vocal cords then we can treat things. At this point the only thing that helps is warm tea and lots (and lots) of relaxing. We have been tempted to go to the ER a few times but the tea has calmed things down and I get my voice back. My throat has been giving me lots of fits lately (even swallowing).
<br />
<br />Asthma medications don't help me. I am hoping that if it is something to do with my vocal cords then we can treat things. At this point the only thing that helps is warm tea and lots (and lots) of relaxing. We have been tempted to go to the ER a few times but the tea has calmed things down and I get my voice back. My throat has been giving me lots of fits lately (even swallowing).
JennifersHope
New member
My vocal chord dysfunction honestly comes from a trigger we are not sure what it is though. I think that is part of why I am still in the hospital, This is my second intubation in just a few months.
I can't get the treatments into my airways to help me, so I have to go to the ER and get magnesium IV to relax my asthma and then we have to try to work on the larygneal spasms and vocal chord dysfunction. The training they gave me did not work for one second, all the sounds they told me to make did not work, and taking a deep breath when moe then 90 percent of your airway is closed up is a joke.
I can't get the treatments into my airways to help me, so I have to go to the ER and get magnesium IV to relax my asthma and then we have to try to work on the larygneal spasms and vocal chord dysfunction. The training they gave me did not work for one second, all the sounds they told me to make did not work, and taking a deep breath when moe then 90 percent of your airway is closed up is a joke.
JennifersHope
New member
My vocal chord dysfunction honestly comes from a trigger we are not sure what it is though. I think that is part of why I am still in the hospital, This is my second intubation in just a few months.
I can't get the treatments into my airways to help me, so I have to go to the ER and get magnesium IV to relax my asthma and then we have to try to work on the larygneal spasms and vocal chord dysfunction. The training they gave me did not work for one second, all the sounds they told me to make did not work, and taking a deep breath when moe then 90 percent of your airway is closed up is a joke.
I can't get the treatments into my airways to help me, so I have to go to the ER and get magnesium IV to relax my asthma and then we have to try to work on the larygneal spasms and vocal chord dysfunction. The training they gave me did not work for one second, all the sounds they told me to make did not work, and taking a deep breath when moe then 90 percent of your airway is closed up is a joke.
JennifersHope
New member
My vocal chord dysfunction honestly comes from a trigger we are not sure what it is though. I think that is part of why I am still in the hospital, This is my second intubation in just a few months.
<br />
<br />I can't get the treatments into my airways to help me, so I have to go to the ER and get magnesium IV to relax my asthma and then we have to try to work on the larygneal spasms and vocal chord dysfunction. The training they gave me did not work for one second, all the sounds they told me to make did not work, and taking a deep breath when moe then 90 percent of your airway is closed up is a joke.
<br />
<br />I can't get the treatments into my airways to help me, so I have to go to the ER and get magnesium IV to relax my asthma and then we have to try to work on the larygneal spasms and vocal chord dysfunction. The training they gave me did not work for one second, all the sounds they told me to make did not work, and taking a deep breath when moe then 90 percent of your airway is closed up is a joke.