swallowing after partial larengectomy

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

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.

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

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.

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

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