Wonderfully explained....very precise to the topic and includes every minute detail of post laryngectomy care.. thanks a lot from all the budding SLPs..
Hi Barbara, I am a 72 year old total laryngectomee. My surgery was on December 1, 2014 , at GWU Hospital in Washington DC. Nice presentation , in detail , about Laryngectomy and speech post-op. At GWU, they were not as thorough leading up to the operation as you all seem to be at John Hopkins. My surgery saved my life. I would encourage anyone who is advised to get this surgery, to do so. Watch videos of the procedure and read about what may be the reason that they need it. In my case it was infection from a dental accident, that took 2 years to migrate through my jaw bone and reach the jaw joint. Then another 4 years for the infection to erupt into my esophagus paralyzing my epiglottis and entering the voice box. I read all about this and this is my theory. The surgeon didn't need to try to figure out how it got to where it was, but how he could remove it and save my life. He knew I had already researched laryngectomy and viewed videos of it. He said he would create a permanent stoma, and I would talk like Laryngectomees do. Patients instinctively know they are in serious trouble and only serious intervention will save them. At least I knew. I had only one question for the surgeon ; " Will chemo and radiation kill anaerobic bacteria?" I knew that is what caused my condition, ( a breached tooth root in a root canal reaming procedure that deposited bad bacteria deep in my jaw bone). He said, " No it won't and you will likely have to have a laryngectomy anyway, and the tissue will be damaged by radiation, that will cause healing issues." My decision was easy. Life, or death. Fool around with radiation, or, get it done and move on. I had a long time to figure out how and why. I was satisfied with my choice. The point of me writing this is to explain how my mind worked 8 and 1/2 years ago. It has not been easy , but is doable. I even hooked up with a long lost girlfriend , post-op, and we had a three year relationship until she passed in June 2020. I am saying to people who think they may need this surgery; if it is advised, consider it may increase your life expectancy. I still play drums, just can't sing anymore. I hadn't gone swimming in 20 years , although I grew up swimming and diving, now that is not possible. Less than one year after my surgery, I went wade fishing in The Shenandoah River. Only dangerous to your life if your head goes under. My head never went under in 50 years of wade fishing. I may have stumbled or fell on my butt a couple times in all those years. I'm also a mechanic, handyman, yardman ( cutting three yards for exercise and extra money since my surgery). I Wear a scarf/ handkerchief, to keep dust and pollen out . Irrigate the trachea and cough out the mucus, Keep the irrigation water / saline solution, bacteria -free. I only use that if mucus seems stuck and not coming up . I hope this helps someone/ anyone out. People seem to really be nice to me, and I can flirt all I want now. What are they going to do,? Slap me? They act like this poor old guy has been through enough, so I'll give him a pass. There is life after laryngectomy. You have to deal with mucus, often, at first, then less as time goes on. But it is part of living. I hardly ever even cough overnight. I cough oit a lot before bed then upon waking 8 hours later, then only a couple times a day No more clearing your throat the easy way by going Ummmmmmm, then swallowing it. Now I pull out the larytube , , try to blow it out , and then , always, clean out the tube, reinsert and live on. Good Luck! Jerry in Maryland
Thanks for the info. I'm glad you're doing OK. I'm going to be getting a laryngectomy soon. I heard that after the laryngectomy your breathing is easier than before. Is this true?
@@MKS700-vv3tt Barbara, yes, the breathing easier is what was the most noticeable. I didn't look or read what all I wrote. I am torn with emotion, that you are choosing to try to go on living. A brave survivor you are, to do this. The first couple months is all trying to adjust. There is the constant thing you feel in your lost voice box area and after 9 years, that has not completely gone away. Not any pain, but nerve damage still makes my ear feel a bit numb. It is a little better these days. My esophagus was 50% blocked, so if you are something like that, you will notice the breathing ease up. And as you meditate on living and life after this change and really get into it over time, you will really calm down and breathe in a slower rhythm. I was reunited with an old girlfriend who I hadn't seen in 36 years. She said some nights, she had to check to see if I was still breathing. That is how shallow and easy the breathing will be. There was something I knew could be a problem, after the surgery; all surrounding air is breathed directly into the lungs without the help of the mucus in your nose and saliva in your mouth and throat to catch contaminants. What happened to me in year-5 , post-op, I found out the hard way over a 4-month period, I was deathly allergic to her cat. Anaphylactic shock. I figured it out. Not the hospital in my 11 days on 24 hour -a-day I-V antibiotics. This is ,"beyond- laryngectomy" talk I am doing now. You are at the greatest fear stage now. I was like putting my total trust in the procedure, the doctors, the hospital, and in my savior. You'll pray that he gives you the strength to survive, and that you'll do the rest (is what I prayed). Lots of mucus the first few months as you learn how to clear it for the best breathing post-op. Believe me, it is how you have to learn to live. No easy throat clearing like normal people. I coughed about 4 times today, clearing the mucus. I have an indwelling voice prothesis (TEP) and the surgeon and speech therapist said, I had great hygiene practices to keep it so clean. My secret was never missing my bedtime routine of coughing out mucus, irrigating and coughing out the trachea, always flushing out the voice valve, brushing my teeth, and then using mouth wash. Lots of steps. Done, without fail every night. I never worried about daytime brushing, rinsing, etc., just the bedtime routine. When my surgeon said I'd be getting the laryngectomy he said, " Jerry, you are going to be a Rock Star!" I thought, " I always wanted to be one because I have been a lifetime drummer with some success in several different bands, and I still play to this day.... just can't sing anymore. Just turned 73 a week ago. I hope you'll at some point in your journey, get back in touch with me if you remember. I just met my 2nd laryngectomee at NIH in Washington DC, a black woman who was 46. She had her operation at age 14. That brought a tear to my eyes (just like seeing you responded to me) She saw me from a long way away sitting in the cafeteria area waiting on my baby sister, 62, having cataract surgery. So, in 9 years only bumped in to 2 like me. I went to one ATOS meeting and saw 20-30 there and talked to a couple males and females. It's an exclusive club. I imagine you have well researched this operation. I did, and that made the nurses, doctors, interns, speech therapists, etc., impressed that I knew about it. The Lord brought you to me on Christmas Eve to talk to you. In my 11 days hospitalization post laryngectomy, I did not watch TV. I even refused the oral pain meds around the second to third day. I wanted to see what kind of discomfort I may encounter, and to live without TV distraction and all the BS in the news. I laughed a lot in the hospital at this mess. My neck was swollen really bad with fluids. That got better around a week later and then I was allowed to try to eat after a swallow test. I remember the drainage suction bulbs and tubes, the nose feeding tube removed after a couple days, The new way I had to gulp to swallow. The upper esophageal sphincter was removed. So, I couldn't drink fluids and bend over at my waste or the fluid ran out my nose and mouth. I found that out bending over to pick up firewood after a bowl of cereal in my first week at home. Only did that once. Can't lay down for 30 minutes after eating or drinking. Can't talk laying down, either. Head needs slight elevation. Showering, I learned to trickle the water on low, and can wash my hair (says the bald guy), by bending over. They had me worried about getting water in the stoma. Even one drop will make you cough. So, I would tape on the stoma shower thing, and it always came off. To get mucus out causing difficult breathing, you use a solution of non-iodized salt water in a spray bottle and spray in the stoma a couple squirts that make you cough and helps immensely to breath smoother. I was not told this until a couple months post- op. In a couple months I was sleeping through the night. But I have never been able to fully put thinking about the lost voice box out of my mind. The dreams of being able to speak normally, I still have. That's very odd. if you have a husband, have him read this as it may help in the years post recovery. Not a recovery but more of a new way of living. As for your original question, you will be happy the struggling to breathe is over with. It then becomes the mucus you have to get out to have clearer, easier breathing. I always cough right onto the bathroom mirror. I know it sounds gross. Don't worry. You will find that grabbing a tissue, won 't matter when you work in front of the bathroom mirror, looking in the stoma to clean the trachea. You may join the support group in your area and have other laryngectomees to talk to. Everyone is in this together. There is life after this surgery. Nothing I ever thought I would have dreamed of. I'm wishing you the best outcome possible. I talk to and flirt with everybody now and I know they all love me for speaking to them. You be a Rock Star, too! Strange Christmas Eve recalling some of this for you. There is loads more you will learn about. The post-op surgeon visits went on for 5 years twice a year. Voice prothesis changes were frequent the first couple years as I had complications of aspirating some fluids. This stuff seemed like it would never end, and then it did, finally, no more surgeon, no more speech therapist or prosthesis changes. ALL THE BEST TO YOU, Barbara! Jerry
@@geralddicarlo3249 Merry Christmas! Thanks for your prompt response. I appreciate your information, especially on the breathing. I only asked about the breathing because I had a recent Tracheostomy where I now have a "Trach" 'tube that I breathe through that comes from my neck/windpipe. So I have a hole in my neck to help me breathe along with partial help from my nose and mouth. But when I get the Laryngectomy, there will be no air access to my nose and mouth....and that's what I was concerned with. I just want to make sure that the Laryngectomy hole is wide enough and provides ample air to breathe. My doctor said it should.....because unlike what I have now which is a Trach tube going into my windpipe (and the tube itself takes up space that could be used for airway)....... with a Laryngectomy.....the wind pipe itself is brought to the surface of the neck (so I don't have to worry about a wide enough tube going into the wind pipe). My doctor said this should provide ample air. My doctor said with this kind of configuration, it will actually provide me with more air to breathe....than if I had a healthy larynx. I thought that was interesting. I used to go to the gym and I hope that after I heal up, that I can have enough breathing capacity to be able to work out again. Of course I'm not going to over exert myself and try to be some kind of Olympic athlete or anything like that. I just want to be in above average shape to enhance my overall health.
@@MKS700-vv3tt There is a plenty large enough breathing hole with a stoma and Lary-tube with an HME. Very mild exercise is about all I think you'll ever be able to do. Like walking and taking lots of breaks. All breathing is in and out of the neck stoma. Also, all mucus comes through that stoma. That is constant. All day and sometimes there are nights I have to clear it the best I can.
Major cities have local groups that get together which I prefer over national groups ..contact them through your hospitals or speech pathologist..you my have to drive to meetings is the only problem
New SLT student here, and this video has been so helpful! Thank you!
Wonderfully explained....very precise to the topic and includes every minute detail of post laryngectomy care.. thanks a lot from all the budding SLPs..
Excellent presentation 👏
Amazing video and very helpful user experience videos. Thanks from ent student.
Hi Barbara, I am a 72 year old total laryngectomee. My surgery was on December 1, 2014 , at GWU Hospital in Washington DC. Nice presentation , in detail , about Laryngectomy and speech post-op. At GWU, they were not as thorough leading up to the operation as you all seem to be at John Hopkins. My surgery saved my life. I would encourage anyone who is advised to get this surgery, to do so. Watch videos of the procedure and read about what may be the reason that they need it. In my case it was infection from a dental accident, that took 2 years to migrate through my jaw bone and reach the jaw joint. Then another 4 years for the infection to erupt into my esophagus paralyzing my epiglottis and entering the voice box. I read all about this and this is my theory. The surgeon didn't need to try to figure out how it got to where it was, but how he could remove it and save my life. He knew I had already researched laryngectomy and viewed videos of it. He said he would create a permanent stoma, and I would talk like Laryngectomees do. Patients instinctively know they are in serious trouble and only serious intervention will save them. At least I knew. I had only one question for the surgeon ; " Will chemo and radiation kill anaerobic bacteria?" I knew that is what caused my condition, ( a breached tooth root in a root canal reaming procedure that deposited bad bacteria deep in my jaw bone). He said, " No it won't and you will likely have to have a laryngectomy anyway, and the tissue will be damaged by radiation, that will cause healing issues." My decision was easy. Life, or death. Fool around with radiation, or, get it done and move on. I had a long time to figure out how and why. I was satisfied with my choice. The point of me writing this is to explain how my mind worked 8 and 1/2 years ago. It has not been easy , but is doable. I even hooked up with a long lost girlfriend , post-op, and we had a three year relationship until she passed in June 2020. I am saying to people who think they may need this surgery; if it is advised, consider it may increase your life expectancy. I still play drums, just can't sing anymore. I hadn't gone swimming in 20 years , although I grew up swimming and diving, now that is not possible. Less than one year after my surgery, I went wade fishing in The Shenandoah River. Only dangerous to your life if your head goes under. My head never went under in 50 years of wade fishing. I may have stumbled or fell on my butt a couple times in all those years. I'm also a mechanic, handyman, yardman ( cutting three yards for exercise and extra money since my surgery). I Wear a scarf/ handkerchief, to keep dust and pollen out . Irrigate the trachea and cough out the mucus, Keep the irrigation water / saline solution, bacteria -free. I only use that if mucus seems stuck and not coming up . I hope this helps someone/ anyone out. People seem to really be nice to me, and I can flirt all I want now. What are they going to do,? Slap me? They act like this poor old guy has been through enough, so I'll give him a pass. There is life after laryngectomy. You have to deal with mucus, often, at first, then less as time goes on. But it is part of living. I hardly ever even cough overnight. I cough oit a lot before bed then upon waking 8 hours later, then only a couple times a day No more clearing your throat the easy way by going Ummmmmmm, then swallowing it. Now I pull out the larytube , , try to blow it out , and then , always, clean out the tube, reinsert and live on. Good Luck! Jerry in Maryland
Thanks for the info. I'm glad you're doing OK. I'm going to be getting a laryngectomy soon. I heard that after the laryngectomy your breathing is easier than before. Is this true?
@@MKS700-vv3tt Barbara, yes, the breathing easier is what was the most noticeable. I didn't look or read what all I wrote. I am torn with emotion, that you are choosing to try to go on living. A brave survivor you are, to do this. The first couple months is all trying to adjust. There is the constant thing you feel in your lost voice box area and after 9 years, that has not completely gone away. Not any pain, but nerve damage still makes my ear feel a bit numb. It is a little better these days. My esophagus was 50% blocked, so if you are something like that, you will notice the breathing ease up. And as you meditate on living and life after this change and really get into it over time, you will really calm down and breathe in a slower rhythm. I was reunited with an old girlfriend who I hadn't seen in 36 years. She said some nights, she had to check to see if I was still breathing. That is how shallow and easy the breathing will be. There was something I knew could be a problem, after the surgery; all surrounding air is breathed directly into the lungs without the help of the mucus in your nose and saliva in your mouth and throat to catch contaminants. What happened to me in year-5 , post-op, I found out the hard way over a 4-month period, I was deathly allergic to her cat. Anaphylactic shock. I figured it out. Not the hospital in my 11 days on 24 hour -a-day I-V antibiotics. This is ,"beyond- laryngectomy" talk I am doing now. You are at the greatest fear stage now. I was like putting my total trust in the procedure, the doctors, the hospital, and in my savior. You'll pray that he gives you the strength to survive, and that you'll do the rest (is what I prayed). Lots of mucus the first few months as you learn how to clear it for the best breathing post-op. Believe me, it is how you have to learn to live. No easy throat clearing like normal people. I coughed about 4 times today, clearing the mucus. I have an indwelling voice prothesis (TEP) and the surgeon and speech therapist said, I had great hygiene practices to keep it so clean. My secret was never missing my bedtime routine of coughing out mucus, irrigating and coughing out the trachea, always flushing out the voice valve, brushing my teeth, and then using mouth wash. Lots of steps. Done, without fail every night. I never worried about daytime brushing, rinsing, etc., just the bedtime routine. When my surgeon said I'd be getting the laryngectomy he said, " Jerry, you are going to be a Rock Star!" I thought, " I always wanted to be one because I have been a lifetime drummer with some success in several different bands, and I still play to this day.... just can't sing anymore. Just turned 73 a week ago. I hope you'll at some point in your journey, get back in touch with me if you remember. I just met my 2nd laryngectomee at NIH in Washington DC, a black woman who was 46. She had her operation at age 14. That brought a tear to my eyes (just like seeing you responded to me) She saw me from a long way away sitting in the cafeteria area waiting on my baby sister, 62, having cataract surgery. So, in 9 years only bumped in to 2 like me. I went to one ATOS meeting and saw 20-30 there and talked to a couple males and females. It's an exclusive club. I imagine you have well researched this operation. I did, and that made the nurses, doctors, interns, speech therapists, etc., impressed that I knew about it. The Lord brought you to me on Christmas Eve to talk to you. In my 11 days hospitalization post laryngectomy, I did not watch TV. I even refused the oral pain meds around the second to third day. I wanted to see what kind of discomfort I may encounter, and to live without TV distraction and all the BS in the news. I laughed a lot in the hospital at this mess. My neck was swollen really bad with fluids. That got better around a week later and then I was allowed to try to eat after a swallow test. I remember the drainage suction bulbs and tubes, the nose feeding tube removed after a couple days, The new way I had to gulp to swallow. The upper esophageal sphincter was removed. So, I couldn't drink fluids and bend over at my waste or the fluid ran out my nose and mouth. I found that out bending over to pick up firewood after a bowl of cereal in my first week at home. Only did that once. Can't lay down for 30 minutes after eating or drinking. Can't talk laying down, either. Head needs slight elevation. Showering, I learned to trickle the water on low, and can wash my hair (says the bald guy), by bending over. They had me worried about getting water in the stoma. Even one drop will make you cough. So, I would tape on the stoma shower thing, and it always came off. To get mucus out causing difficult breathing, you use a solution of non-iodized salt water in a spray bottle and spray in the stoma a couple squirts that make you cough and helps immensely to breath smoother. I was not told this until a couple months post- op. In a couple months I was sleeping through the night. But I have never been able to fully put thinking about the lost voice box out of my mind. The dreams of being able to speak normally, I still have. That's very odd. if you have a husband, have him read this as it may help in the years post recovery. Not a recovery but more of a new way of living. As for your original question, you will be happy the struggling to breathe is over with. It then becomes the mucus you have to get out to have clearer, easier breathing. I always cough right onto the bathroom mirror. I know it sounds gross. Don't worry. You will find that grabbing a tissue, won 't matter when you work in front of the bathroom mirror, looking in the stoma to clean the trachea. You may join the support group in your area and have other laryngectomees to talk to. Everyone is in this together. There is life after this surgery. Nothing I ever thought I would have dreamed of. I'm wishing you the best outcome possible. I talk to and flirt with everybody now and I know they all love me for speaking to them. You be a Rock Star, too! Strange Christmas Eve recalling some of this for you. There is loads more you will learn about. The post-op surgeon visits went on for 5 years twice a year. Voice prothesis changes were frequent the first couple years as I had complications of aspirating some fluids. This stuff seemed like it would never end, and then it did, finally, no more surgeon, no more speech therapist or prosthesis changes. ALL THE BEST TO YOU, Barbara! Jerry
@@geralddicarlo3249 Merry Christmas! Thanks for your prompt response. I appreciate your information, especially on the breathing. I only asked about the breathing because I had a recent Tracheostomy where I now have a "Trach" 'tube that I breathe through that comes from my neck/windpipe. So I have a hole in my neck to help me breathe along with partial help from my nose and mouth. But when I get the Laryngectomy, there will be no air access to my nose and mouth....and that's what I was concerned with.
I just want to make sure that the Laryngectomy hole is wide enough and provides ample air to breathe. My doctor said it should.....because unlike what I have now which is a Trach tube going into my windpipe (and the tube itself takes up space that could be used for airway)....... with a Laryngectomy.....the wind pipe itself is brought to the surface of the neck (so I don't have to worry about a wide enough tube going into the wind pipe).
My doctor said this should provide ample air. My doctor said with this kind of configuration, it will actually provide me with more air to breathe....than if I had a healthy larynx. I thought that was interesting.
I used to go to the gym and I hope that after I heal up, that I can have enough breathing capacity to be able to work out again. Of course I'm not going to over exert myself and try to be some kind of Olympic athlete or anything like that. I just want to be in above average shape to enhance my overall health.
@@MKS700-vv3tt There is a plenty large enough breathing hole with a stoma and Lary-tube with an HME. Very mild exercise is about all I think you'll ever be able to do. Like walking and taking lots of breaks. All breathing is in and out of the neck stoma. Also, all mucus comes through that stoma. That is constant. All day and sometimes there are nights I have to clear it the best I can.
Im doing a presentation on alaryngeal speech for my speech science class and this video has been the most helpful so far. Thank you!
hey speaking of your presentation how did it go ???
Very informative video - thank you.
Very good video 😊
good speech to return somestage larngectomy opertations can get better some stage
Ty
is there a group I can join I have a total laryngectomy
I hadn't too
Sorry ment I had one too
Major cities have local groups that get together which I prefer over national groups ..contact them through your hospitals or speech pathologist..you my have to drive to meetings is the only problem
Me too I wanna join I have a total laryngectomy.
time factor inthis caes takes time