swallowing after partial larengectomy

aruba

Hi I am new here and writing for my husband who is 62 and need help/info regarding relearning to swallow.

My husband had surgery November 24 and had epiglotis removed, reconstruction and neck disection.  Dr says went well and all looks good.  Had trach and feeding tube inserted.   Although the surgery went ok there were several trach displacements and on Christmas day the feeding tube was also displaced.  Went to emergency room and had surgery the next day to take that one out, treat the infection and put a new one in.  He has recovered from all of this and had 33 radiation treatments and 6 cisplatin chemo treatments.  As I am sure you all know this was awful but he got through it.

Radiation and chemo has been over for 2 weeks.  Have been doing two swallowing exercises along the way but still not able to complete going down the right way so not approved to take anything by mouth yet.

We are working with a speach pathologist but how long does this take ?   Any advise on what to do to make it happen faster ?  Any info would be greatly appreciated.   Thanks !

MrsBD

Welcome

Welcome to the group. While I did not have surgery or a PEG tube, I can tell you that recovery from radiation and chemo is a slow process. It took about four months for my throat to start feeling better and several more months to be able to swallow normally. My speech and swallowing therapist was instrumental in providing suggestions for types of food that she felt I would be able to handle. The exercises really helped too. Healing will be an exercise in patience for both of you. Encourage your husband to keep up with the exercises,  stay well hydrated,  and start experimenting with different foods once he gets the approval. Come here any time for support. There is always someone who has similar experience and can offer good advice. It's going to be a bumpy road, but you can make it!

wmc

Welcome to H&N group

Welcome to the group, but also sorry you nrrd to be here. Not sure I will have answere, as I may have more questions.        You see I had a full Lartngectomy and removed all of my larynx, vocal cords and my epiglottis as it was damaged. So I will ask did they rebuild an epigolttis, as that is what keeps food from going into the lungs and asperating which is extreamly dangerous. I understand having the trach which is just temporary until he is healed and then they will remove it and close the hole. Now mine is a full seperating of the airway and throat. Mine is a stoma and not a trach, differance is the seperation and the hole is forever and with that it changes to a stoma. He should have been given a swallow study where the x-ray him swallowing and it is like a short movie. Really only 20 seconds or so, but that see where there is a problem. I wish I had an answer as how long it will take. I never needed any speach or swallowing help. I was just very lucky and my doctor said take a big breath and put your thumb over the hole and block it then say, 1,2,3,and4. So I did. He just looked as me and smiled and said you don't need any therapy so I never got any. Again my case is not the normal and your husband is closser to normal. My surgeon just shook his head and said, on a scale from 1 to 10, you are a 14.

His radiation might be over, but he is still cooking inside and will for about 6 to 8 weeks. Now I am one of the very few that never had ration or even chemo. He has or will have some damage to the tissue due to radiation. It does a number on tissue as well as the tumor. Does he have one vocal cord or was he able to save more. He may have still some swelling, an will have some radiation damage, but it slowly will get better. If he can swallow liquid, do that all day and just keep sipping. A lot of his swallowing problems is fear. Before my surgery I blead a lot and so many foors made it worse. At the end it was lots of cold milkshakes or popsicles as they numbed it some and I cidn't cough up blood that way. After the surgery, I was afraid to swallow and really had to think about each and every time I swallowed anything even liquid. I have a prosthesis in my neck that is a oneway valve so I can divert air into my throat and talk. That can leak on and off and has to be replaced often the first year, then about every 6 months. So I still have to think with every time I swallow anything. It has been 28+ months and I still think about swallowing, just not every time. It has gotten better. Now his oice may change and even be hoarse sounding and even may have a lower volume. Trust me, be happy he can speak. Loosing your larynx is a major adjustment, I can never smell as no air goes through my nose. It just holds up my glasses. Just let him know it gets better, it really does. You both will be in my thoughts and prayers. I can do everything I did before. I have to be more careful with sprays and dust, because it all goes straight to my lungs. He will not have that. For me, what is strange is when it is cold outside and you can see your breath. Mine comes out my neck. I also have to cover my neck, not mouth, if I cough. That took months to get used to that. I also scarred my brother the first time, there is NO sound, just my chest moving.

Bill

aruba

MrsBD said:

Welcome

Welcome to the group. While I did not have surgery or a PEG tube, I can tell you that recovery from radiation and chemo is a slow process. It took about four months for my throat to start feeling better and several more months to be able to swallow normally. My speech and swallowing therapist was instrumental in providing suggestions for types of food that she felt I would be able to handle. The exercises really helped too. Healing will be an exercise in patience for both of you. Encourage your husband to keep up with the exercises,  stay well hydrated,  and start experimenting with different foods once he gets the approval. Come here any time for support. There is always someone who has similar experience and can offer good advice. It's going to be a bumpy road, but you can make it!

Thanks

Yes, it will be an exercise in patience - I see that now - we were told he would be swallowing after surgery before radiation so he is thinking something is wrong but think it will just take time.   Did you have excessive mucus and coughing ?  He has had a lot since the surgery and trach inserted but then lessened up a bit.  Now the past two days is just awful.   Was going to start a cork on the trach today which we tried but with having to spit the muscus out and going to hydration for hours today we are holding off until tomorrow.

aruba

wmc said:

Welcome to H&N group

Welcome to the group, but also sorry you nrrd to be here. Not sure I will have answere, as I may have more questions.        You see I had a full Lartngectomy and removed all of my larynx, vocal cords and my epiglottis as it was damaged. So I will ask did they rebuild an epigolttis, as that is what keeps food from going into the lungs and asperating which is extreamly dangerous. I understand having the trach which is just temporary until he is healed and then they will remove it and close the hole. Now mine is a full seperating of the airway and throat. Mine is a stoma and not a trach, differance is the seperation and the hole is forever and with that it changes to a stoma. He should have been given a swallow study where the x-ray him swallowing and it is like a short movie. Really only 20 seconds or so, but that see where there is a problem. I wish I had an answer as how long it will take. I never needed any speach or swallowing help. I was just very lucky and my doctor said take a big breath and put your thumb over the hole and block it then say, 1,2,3,and4. So I did. He just looked as me and smiled and said you don't need any therapy so I never got any. Again my case is not the normal and your husband is closser to normal. My surgeon just shook his head and said, on a scale from 1 to 10, you are a 14.

His radiation might be over, but he is still cooking inside and will for about 6 to 8 weeks. Now I am one of the very few that never had ration or even chemo. He has or will have some damage to the tissue due to radiation. It does a number on tissue as well as the tumor. Does he have one vocal cord or was he able to save more. He may have still some swelling, an will have some radiation damage, but it slowly will get better. If he can swallow liquid, do that all day and just keep sipping. A lot of his swallowing problems is fear. Before my surgery I blead a lot and so many foors made it worse. At the end it was lots of cold milkshakes or popsicles as they numbed it some and I cidn't cough up blood that way. After the surgery, I was afraid to swallow and really had to think about each and every time I swallowed anything even liquid. I have a prosthesis in my neck that is a oneway valve so I can divert air into my throat and talk. That can leak on and off and has to be replaced often the first year, then about every 6 months. So I still have to think with every time I swallow anything. It has been 28+ months and I still think about swallowing, just not every time. It has gotten better. Now his oice may change and even be hoarse sounding and even may have a lower volume. Trust me, be happy he can speak. Loosing your larynx is a major adjustment, I can never smell as no air goes through my nose. It just holds up my glasses. Just let him know it gets better, it really does. You both will be in my thoughts and prayers. I can do everything I did before. I have to be more careful with sprays and dust, because it all goes straight to my lungs. He will not have that. For me, what is strange is when it is cold outside and you can see your breath. Mine comes out my neck. I also have to cover my neck, not mouth, if I cough. That took months to get used to that. I also scarred my brother the first time, there is NO sound, just my chest moving.

Bill

grateful for the voice box

Yes the surgeon was able to save the vocal cords and did reconstruction after removal of epiglotis and areas around but did not use other parts from body to do so.   Since the surgery he cannot take anything by mouth as it is asperated right away.  Had no problems swallowing before.   The exercises consist of holding breath to close vocal chords swallow, cough and swallow again but it is not working for him.   They say he just has to strengthen the muscles which will take lots of practice.   Had no idea this was going to be such a long road.   And now encountering the excess muscus problem.

MrsBD

aruba said:

Thanks

Yes, it will be an exercise in patience - I see that now - we were told he would be swallowing after surgery before radiation so he is thinking something is wrong but think it will just take time.   Did you have excessive mucus and coughing ?  He has had a lot since the surgery and trach inserted but then lessened up a bit.  Now the past two days is just awful.   Was going to start a cork on the trach today which we tried but with having to spit the muscus out and going to hydration for hours today we are holding off until tomorrow.

Mucus

Excess mucus is caused by the trauma from radiation.  It is a scary side effect because it feels like you might choke and it leaves you with a very sore throat. My doctor recommended Mucinex (or a generic), staying well-hydrated and using a humidifier at night. All of those help thin the mucus so it is easier to spit out or swallow. The problem does improve in a few weeks, so tell your husband it is miserable but temporary. 

Kent Cass

aruba said:

grateful for the voice box

Yes the surgeon was able to save the vocal cords and did reconstruction after removal of epiglotis and areas around but did not use other parts from body to do so.   Since the surgery he cannot take anything by mouth as it is asperated right away.  Had no problems swallowing before.   The exercises consist of holding breath to close vocal chords swallow, cough and swallow again but it is not working for him.   They say he just has to strengthen the muscles which will take lots of practice.   Had no idea this was going to be such a long road.   And now encountering the excess muscus problem.

Very difficult

Your Drs never classified your husband's C as Hypopharyngeal? They usually do when the epiglottis is involved.

Few have been on this forum with your husband's particulars; but, of those that have, I remember the re-learning on how to swallow is something that takes therapy and awhile to be able to completely master. The Drs should have known and advised you of this, going-in. Follow-up rads and the excess mucous must certainly make it all the tougher. Just know that it is important that he does get as much of that mucous out of him as possisble- stuff is toxic. You are just going to have to be patient and take it slow- trying to make progress little by little, with all he is dealing with.

Please keep us updated on his progress.

kcass

wmc

aruba said:

grateful for the voice box

Yes the surgeon was able to save the vocal cords and did reconstruction after removal of epiglotis and areas around but did not use other parts from body to do so.   Since the surgery he cannot take anything by mouth as it is asperated right away.  Had no problems swallowing before.   The exercises consist of holding breath to close vocal chords swallow, cough and swallow again but it is not working for him.   They say he just has to strengthen the muscles which will take lots of practice.   Had no idea this was going to be such a long road.   And now encountering the excess muscus problem.

Just stay positive.

I new I was loseing my vocial cords, as that was the only choice I had. I was told I would be able to talk but so many things that I will never do. Nose does nothing so smell is gone. You make sure all smoke alarms are working, as I won't smell the fire. Said I can't whistle, which made no since, if I can divert air to talk then I can whistle. I can, it took two months working almost all day every day. No vocal cords so I can't hole my breath. So I exhale and it is almost the same so I can lift. I just found a way to get my ears to pop like when you are in the mountains. Don't know how, I just do it the same as before, but no air from my lungs are involved. 

This will tack some hard work. It will not happen overnight. Sorry, that is wrong, it will happen overnight. You just don't know which night. Not being funny, but all of a sudden one day it happens. You will feel this amazing emotions and feelings. To everyone else, it's no big deal because they can do it. But to him, wow, it is great. I almost woke up my family the night I figured it out on my way home from work. It is like a kid at christmas. Celabrate all the little things, because to you both, they are major. I will include a YouTube video my doctor asked me to do. Just let him know it will take time, but he will get there, and Never Give Up  [NGU] you both are not alone in this. You found the plase where people understand what you are feeling, saying, and going through.

https://www.youtube.com/watch?v=sL-ZuyhSMEM   Remember I have really bad lungs stage3 COPD and no vocal cords.

Bill

Duggie88

Aruba

I had my epiglottis removed and a small section of tongue, I believe it took me more than a month  of therapy to learn how to swallow again and even then they left the feeding tube in for a short time. They started me with applesauce but I craved water more than anything a nd the first sip of water I had, I thought I died and went to heaven. One thing to remember is that was me and we are all different when it comes to mile markers in our journey down recovery lane. The Doc also took my uvula out which I think helps because when food gets stuck it doesn't gag me.

Your husband and many of us on here will never be able to enter a wing eating contest but we enjoy the food much more than we did before cancer.

It will get better.

      Jeff

aruba

wmc said:

Just stay positive.

I new I was loseing my vocial cords, as that was the only choice I had. I was told I would be able to talk but so many things that I will never do. Nose does nothing so smell is gone. You make sure all smoke alarms are working, as I won't smell the fire. Said I can't whistle, which made no since, if I can divert air to talk then I can whistle. I can, it took two months working almost all day every day. No vocal cords so I can't hole my breath. So I exhale and it is almost the same so I can lift. I just found a way to get my ears to pop like when you are in the mountains. Don't know how, I just do it the same as before, but no air from my lungs are involved. 

This will tack some hard work. It will not happen overnight. Sorry, that is wrong, it will happen overnight. You just don't know which night. Not being funny, but all of a sudden one day it happens. You will feel this amazing emotions and feelings. To everyone else, it's no big deal because they can do it. But to him, wow, it is great. I almost woke up my family the night I figured it out on my way home from work. It is like a kid at christmas. Celabrate all the little things, because to you both, they are major. I will include a YouTube video my doctor asked me to do. Just let him know it will take time, but he will get there, and Never Give Up  [NGU] you both are not alone in this. You found the plase where people understand what you are feeling, saying, and going through.

https://www.youtube.com/watch?v=sL-ZuyhSMEM   Remember I have really bad lungs stage3 COPD and no vocal cords.

Bill

Wow

Thanks Bill - you are an inspiration on hard work and getting it done. 

aruba

Kent Cass said:

Very difficult

Your Drs never classified your husband's C as Hypopharyngeal? They usually do when the epiglottis is involved.

Few have been on this forum with your husband's particulars; but, of those that have, I remember the re-learning on how to swallow is something that takes therapy and awhile to be able to completely master. The Drs should have known and advised you of this, going-in. Follow-up rads and the excess mucous must certainly make it all the tougher. Just know that it is important that he does get as much of that mucous out of him as possisble- stuff is toxic. You are just going to have to be patient and take it slow- trying to make progress little by little, with all he is dealing with.

Please keep us updated on his progress.

kcass

oh yes that patience thing

Thanks, we were told he would be eating before radiation but with all the setbacks with the trach displacements and replacing feeding tube that was done wrong think it was not possible that it could happen.  Probably one of the drawbacks of being at a "teaching hospital "  feel certain they let a resident or intern do the feeding tube surgery as that is very routine and should have been easy.   

But yes, thank goodness he has a strong cough and getting the mucus out - having the trach actually helps there as much can come out that way but he is trying to wean off of that.  Need to do the patience thing here and I guess everywhere now.

Getting through week by week - hope to post progress in a few weeks.

 

 

 

aruba

Duggie88 said:

Aruba

I had my epiglottis removed and a small section of tongue, I believe it took me more than a month  of therapy to learn how to swallow again and even then they left the feeding tube in for a short time. They started me with applesauce but I craved water more than anything a nd the first sip of water I had, I thought I died and went to heaven. One thing to remember is that was me and we are all different when it comes to mile markers in our journey down recovery lane. The Doc also took my uvula out which I think helps because when food gets stuck it doesn't gag me.

Your husband and many of us on here will never be able to enter a wing eating contest but we enjoy the food much more than we did before cancer.

It will get better.

      Jeff

Yea !- it can - will be done

Thanks Jeff,

Sounds like your surgery was similiar - did you have radiation and chemo ?  How about a trach ?   Did therapy start after surgery or after radiation and chemo ?

Appreciate your input

Sue

Duggie88

aruba said:

Yea !- it can - will be done

Thanks Jeff,

Sounds like your surgery was similiar - did you have radiation and chemo ?  How about a trach ?   Did therapy start after surgery or after radiation and chemo ?

Appreciate your input

Sue

Will be done

Sue

I did not have to go through chemo just 30 radiation treatments. After three treatments I was ready to call it quits because I was already going through side effects they told me to expect after 10. I had a trach for about a month. Because I had a full neck disection I had 2 different therapies. The speech therapist is the one who taught me how to swallow again and I believe I started that a few weeks after surgery. I did about 6 months of therapy that started just after radiation for my neck and muscles they had to cut from the surgery. They had to find a certain type of therapist because of my situation. I will always remember her being a little thing and me being 6'2", she would massage my neck because of the water retention (forget the technical name) and she did so pretty rough like and it would hurt. I was bound and determined I would never let her know that she was getting the best of me and yell out because it hurt.

Tell your husband it does get better, never overnight, and never at the same pace as someone else.

Life is good

      Jeff

wmc

aruba said:

oh yes that patience thing

Thanks, we were told he would be eating before radiation but with all the setbacks with the trach displacements and replacing feeding tube that was done wrong think it was not possible that it could happen.  Probably one of the drawbacks of being at a "teaching hospital "  feel certain they let a resident or intern do the feeding tube surgery as that is very routine and should have been easy.   

But yes, thank goodness he has a strong cough and getting the mucus out - having the trach actually helps there as much can come out that way but he is trying to wean off of that.  Need to do the patience thing here and I guess everywhere now.

Getting through week by week - hope to post progress in a few weeks.

 

 

 

Aruba some things you might not know;

Yes in a teaching hospital they do have the resident do many of the things being done, and it is all under supervision. My Doctor [surgeon] was there all 8 hours of my surgery. Other doctors on his team came and their part and were not there for the whole time, as they told me. I don't know how the head doctor stayed the hole time, but I have all the surgery notes he sends to my refering doctors. I get a full copy of his notes for every visit as he knows I am involved in all dissions of my health and he is good with me. He is very honest and even a little blunt, but he is only giving me the facts and why he wants do do it this way. I even thinks he reads my mind. I wanted surgery first. I knew where mine was and even had photos of it. Of course tht Rad Onc, wanted to do radiation to shrink it, but I would not do that. Also had no choice because of my lungs. I wanted surgery first. As luck would have it I never needed radiation.

It is very good your husband has a strong cough. With a trach or Stoma [like I have] the cough is how we have to get rid of the mucus and it is collecting all the junk you breath in. For a person that breathes normal there is cilia which gets rid of the mucus. [This mucus is "swept up" toward the mouth by little hairs called cilia that line the breathing tubes. Cilia move mucus from the lungs upward toward the throat to the epiglottis. The epiglottis is the gate, which opens allowing the mucus to be swallowed.] The body produces 1.5 liters of mucus which includes nasil, sliva, and throat and lungs. Normal function you are not aware that you just swallow the excess, as it just goes up and over into the esophagus, thanks to the epiglottis we never know it happens. 

You both seem to be doing good even with the setbacks. Just one day at a time. Know you are not alone and on bad days it helps to come here and just write it down. In just getting it out and in writing just seems to help many. We're open 24/7

You both are in my thoughts and prayers.

Bill

aruba

Duggie88 said:

Will be done

Sue

I did not have to go through chemo just 30 radiation treatments. After three treatments I was ready to call it quits because I was already going through side effects they told me to expect after 10. I had a trach for about a month. Because I had a full neck disection I had 2 different therapies. The speech therapist is the one who taught me how to swallow again and I believe I started that a few weeks after surgery. I did about 6 months of therapy that started just after radiation for my neck and muscles they had to cut from the surgery. They had to find a certain type of therapist because of my situation. I will always remember her being a little thing and me being 6'2", she would massage my neck because of the water retention (forget the technical name) and she did so pretty rough like and it would hurt. I was bound and determined I would never let her know that she was getting the best of me and yell out because it hurt.

Tell your husband it does get better, never overnight, and never at the same pace as someone else.

Life is good

      Jeff

Made me smile

Jeff,

My husbands neck is beginning to swell and asked radiation oncologist and said he said lympodema just like you described with the water retention and if it gets worse there will be a therapist.  He had 30 lymph nodes removed from right side of neck with the disection so maybe it will not get that bad.   He is finally sleeping more than he has since the surgery back in November - think - hope this is good and healing.  

Thanks -nice to have a smile with the little therapist and 6 foot 2 big guy  So happy to hear you are doing well now- thought it would happen quicker for us but know it will be a long haul as he has to be 12 hours comfortable with trach plugged and there is no way at this point he would be awake for 12 hours.   We are doing 3 -4 hours a day now but I know will get there.   This is the year of healing.

Thanks !

Sue

 

aruba

wmc said:

Aruba some things you might not know;

Yes in a teaching hospital they do have the resident do many of the things being done, and it is all under supervision. My Doctor [surgeon] was there all 8 hours of my surgery. Other doctors on his team came and their part and were not there for the whole time, as they told me. I don't know how the head doctor stayed the hole time, but I have all the surgery notes he sends to my refering doctors. I get a full copy of his notes for every visit as he knows I am involved in all dissions of my health and he is good with me. He is very honest and even a little blunt, but he is only giving me the facts and why he wants do do it this way. I even thinks he reads my mind. I wanted surgery first. I knew where mine was and even had photos of it. Of course tht Rad Onc, wanted to do radiation to shrink it, but I would not do that. Also had no choice because of my lungs. I wanted surgery first. As luck would have it I never needed radiation.

It is very good your husband has a strong cough. With a trach or Stoma [like I have] the cough is how we have to get rid of the mucus and it is collecting all the junk you breath in. For a person that breathes normal there is cilia which gets rid of the mucus. [This mucus is "swept up" toward the mouth by little hairs called cilia that line the breathing tubes. Cilia move mucus from the lungs upward toward the throat to the epiglottis. The epiglottis is the gate, which opens allowing the mucus to be swallowed.] The body produces 1.5 liters of mucus which includes nasil, sliva, and throat and lungs. Normal function you are not aware that you just swallow the excess, as it just goes up and over into the esophagus, thanks to the epiglottis we never know it happens. 

You both seem to be doing good even with the setbacks. Just one day at a time. Know you are not alone and on bad days it helps to come here and just write it down. In just getting it out and in writing just seems to help many. We're open 24/7

You both are in my thoughts and prayers.

Bill

Strong Cough

Yep, everyone says how good the strong cough is and able to get the mucus out - we understand that but when I watch him cough uncontrollably, get so red in the face and chest and unable to breath I thing "this is good ?"  "is he going to have a heart attack ?"   I know it's getting it out but just can't wait for the day this becomes controllable.

So teaching hospitals have to do this but dont' think the resident that did his feeding tube was supervised but we have recovered from that and as you said I think we are doing well with the setbacks.   

We will slowly get there - with no epoglotis but will compensate for that.   Worry as his voice is getting weaker the past day or so and theapist says he must strenghten his vocal cords and get his voice stronger but still only three weeks out of radiation so that is still working against us.

You too are in my prayers !

Sue