To Dilate or not to Dilate?

SamandIrene
SamandIrene Member Posts: 10
in Head and Neck Cancer #1
Hi Everyone - my husband Sam and I are new to this site. He was diagnosed with Stage 4 Throat cancer in May; had a growth surgically removed that was just above his vocal chords and had some in his lymph nodes - no surgery there. He finished with his chemo and 37 RAD treatments 2 month ago and although his spirits are high; he is so very disappointed with the inability to eat again. I found this website and want to say THANK YOU to all of you - what great information and encouragement here!! (That superthread is awesome!) The doctors and nurses did not prepare us for this challenging recovery stage (God Bless them for all they do) and nor do they have much in the way of helpful 'tips' in managing all the day-to-day trials. So I am here looking for ways to help my husband manage and to have the highest quality recovery possible! He is not a big computer person, so I am relaying the information to him that I find here! His biggest issues right now are massive amounts of mucous, which I can see is a very common problem AND no feeling when he eats solid foods. Most of his nutrition is coming from cans of glucerna (he is a Stage 2 diabetic) and after reading the discussions on this site he just started to eat small amount of solids - like a scrambled egg, mashed potato, small smoothie. He cannot feel the food going down his throat - and he can only tolerate very small amounts - but it seems to be going down. (This is better when he first tried and food would get stuck.) He had a speach therapist nurse start with throat excercizes and she suggested dilation. He doesn't like the sound of it, but if it is something he should do - he will! (He has a STRONG gag reflex that makes him very hesitant.) We would love to hear from any of you as to your experience with dilation. Should he continue on his own and or would it be better for him to get the dilation procedure done?

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Sam
    Wow you sound like you been through a lot and still doing well. I did have some of the same problems with swallowing but over time they have gotten a lot better. I too can only eat soft foods as anything else will get stuck and chock me, but I learned to how to get it back up. I am 9 years passed my first treatment and just now looking into dilation as I see everyone else who has done it doing a lot better then I am. My problem is finding an ENT who will do it with all the problems I have with my mouth and Jaw. That is all I can help you with but there are lot of others here who can help a lot more.

    Take care and welcome to the family here on CSN
    Hondo
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #3
    Humidifyer.
    No experience and cannot comment on dilation. However, I've gad a trachetomy last week. The procedure produces so much mucus that Medicare has provided both a suction machine and a moisture producing contraption for my home. Breathing in high humidity air cuts down on the mucus. But it takes a lot of dedication; I must have the moisture machine on most of the time. You may want to look at a humidifyer, like those used for children. It takes hours in front of the humidifyer to get any results.

    My contraption allows me to sleep in a high humidity area. I use it almost all day, and try to be absent from the humidity for only 15 minutes at a time.

    The humidity does not cut down the amount of mucus, but it changes the quality of the mucus. Without humidity, the mucus is thick like honey. With humidity, it is more runny, like pea soup. Warning again: It takes many hours in the high humidity envuribnebt to naje any difference.

    Again, Our situations may be different. My mucus originates in my airway. Your husbands mucus may have another source and not be as helped by high humidity air. Something to think about. Rick
  • nwasen
    nwasen Member Posts: 235 Member
    #4
    the joys of after effects
    Oh I cannot say enough good about having the old stretch!!! I had my last treatment the week before Xmas. Had a PEG tube. Came home and was scared to eat. Choked on cream of potato soup on Jan. 7th (my 61st birthday). Decided to never eat again and just use the feeding tube. A week later I came to my senses (I am a foodie plus I had loved to cook). Called my local ENT (my angel) and he directed me to our local Rehab. I met the coolest therapist who was like a cheerleader. I had two months of electrode therapy and two stretches.I had my PEG removed in July and never looked back... Here it is November and I eat everything except for white meat of chicken!
    the procedure itself was painless; they put you in twilight and my two times, when I came too I just had a small sore throat.
    Please don't be afraid and go for it. I don't think you will regret it!!
    (I had swallow tests before each dilation to determine where my food was hanging up). That is painless also..
    Tell Sam go for it and let us know how he does!
    Peace, Nancy aka toughcookie
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    #5
    Dilated Twice
    Sam & Irene,

    After completion of radiation in 03/10 I was having a difficult time swallowing even a baby aspirin. Everything would get caught in my upper esophagus. I was given a swollow test and was diagnosed with a throat stricture caused by radaition scarring. My esophagus was less than half the normal size. I was refered to a local gastro guy and he dilated my esophagus twice, three weeks apart. They need to be careful not to tear the walls by over doing it in one shot. I now have about 75% of what is normal but I still cannot eat meat or chicken without it getting caught. They knock you out for the procedure and the only side effect was a slightly sorer,already sore throat. All's well now and I'm considering having them go back down again to see if it can be stretched any further now that all has healed in the area.

    Best wishes & hang tough,
    Ed
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #6
    Friends
    I have 7 maybe more local head and neck cancer survivors who have had the dilation, many more than once and one that has over 10. Each time they say it was successful for them. I have not had it done, they did not offer it as option back in late 90's.
    From all that I have read about Sam he is well on the way to an good recovery. It does not surprise me that he can not feel it go down after all the damage that happen from the treatments.
    Welcome to CSN

    John
  • SamandIrene
    SamandIrene Member Posts: 10
    #7
    Hondo said:

    Hi Sam
    Wow you sound like you been through a lot and still doing well. I did have some of the same problems with swallowing but over time they have gotten a lot better. I too can only eat soft foods as anything else will get stuck and chock me, but I learned to how to get it back up. I am 9 years passed my first treatment and just now looking into dilation as I see everyone else who has done it doing a lot better then I am. My problem is finding an ENT who will do it with all the problems I have with my mouth and Jaw. That is all I can help you with but there are lot of others here who can help a lot more.

    Take care and welcome to the family here on CSN
    Hondo

    Thank you everyone!!
    All your comments are so very helpful! Thanks so much!! Sam has an appointment with his ENT in about a week; he is definitely going to ask him about the dilation. We like the humidifier idea too - we will check into that. Oh, and important matter I forgot to mention in my first post...Sam's first after treatment CT Scan showed NO signs of cancer!

    I am so impressed by the courage of everyone on this site. I am so happy to have found all of you :-)

    God Bless!!
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    have it stretched
    There is no problem with gag reflex. They spray a solution that numbs the reflex into your throat and you are out anyway. I have had it sone twice. I did not have a sore throat either time but everyone is different. Welcome to the site.

    Blessings, Debbie
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    Ed_PortOrange said:

    Dilated Twice
    Sam & Irene,

    After completion of radiation in 03/10 I was having a difficult time swallowing even a baby aspirin. Everything would get caught in my upper esophagus. I was given a swollow test and was diagnosed with a throat stricture caused by radaition scarring. My esophagus was less than half the normal size. I was refered to a local gastro guy and he dilated my esophagus twice, three weeks apart. They need to be careful not to tear the walls by over doing it in one shot. I now have about 75% of what is normal but I still cannot eat meat or chicken without it getting caught. They knock you out for the procedure and the only side effect was a slightly sorer,already sore throat. All's well now and I'm considering having them go back down again to see if it can be stretched any further now that all has healed in the area.

    Best wishes & hang tough,
    Ed

    I have had three dilations.
    I had one before I even had cancer. I have had two since radiation. I have a stricture in my upper esophagus, which is a little harder to stretch. Its due to damage from the radiation. I know that they told my dad they stretched me from only 2 mm to 9 mm. It still wasn't enough, I could only drink liquids and eat stuff like yogurt and pudding, so I had it done again. I still struggle with eating, but I was able to get rid of my peg tube after 18 months, and I am also a healthy weight, so it was way worth it.

    Usually you have a swallow study done, to see what the issue is. Good luck. Glad the superthread was helpful.
  • SamandIrene
    SamandIrene Member Posts: 10
    #10
    Sounds like Dilation is a good idea
    Many of you have posted positive results with the dilation procedure - I thank you for taking the time to respond - you are all a Godsend! Got another question - my husband is wondering if there is a suggested timeframe after treatment when the Dilation should be done?? (Again, he is 2 months post treatment) Is there a time when it is too soon after treatment or are there benefits to doing it sooner rather than later?? Any input is appreciated!
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    #11
    SamandIrene said:

    Sounds like Dilation is a good idea
    Many of you have posted positive results with the dilation procedure - I thank you for taking the time to respond - you are all a Godsend! Got another question - my husband is wondering if there is a suggested timeframe after treatment when the Dilation should be done?? (Again, he is 2 months post treatment) Is there a time when it is too soon after treatment or are there benefits to doing it sooner rather than later?? Any input is appreciated!

    Waited 3 Months
    It was at my first 3 month check up that I mentioned to my Rad/Onco that I could only swallow liquids. He then ordered the swallow study, that wasn't fun, where they were able to show me on the monitor the stricture which was causing this problem. The key in having it done is that most of the swelling caused by the radiation has subsided.

    Go for it if they feel the esophagus can be dilated. They can tell you based on the study if your a candidate.

    Best of luck,
    Ed
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #12
    SamandIrene said:

    Sounds like Dilation is a good idea
    Many of you have posted positive results with the dilation procedure - I thank you for taking the time to respond - you are all a Godsend! Got another question - my husband is wondering if there is a suggested timeframe after treatment when the Dilation should be done?? (Again, he is 2 months post treatment) Is there a time when it is too soon after treatment or are there benefits to doing it sooner rather than later?? Any input is appreciated!

    That's a question for his team. :)
    No one but your husband's doctors can really answer that. My throat and mouth were so bad that I had to wait 5 months to get the first one. I had extreme mouth sores though, and my healing was exceedingly slow. So in my case, they didn't want to go in and make things worse. As a matter of fact, the first time they did it after treatment, they went in through my peg tube hole. I have issues and problems with getting my mouth open far enough to establish an air way and stuff, so in my case, it's a more risky proceedure. But that is unique to my situation. I chanced it the third time, because I felt like I did not have a quality of not being able to swallow and eat.

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