trach

larry447
larry447 Member Posts: 22
edited March 2014 in Head and Neck Cancer #1
I am new at this and this is my first post. I had stage
iv cancer of the throat and had a trach put in before
treatments started. I am now 5 months post treaments and
having problems speaking eating and drinking. Up until a
week ago I was unable to swallow causing me to aspirate.
The doctor was able to dilate my esophagus and now i can
sip a little water. My swallow test following dilation still
shows aspiration however after tow weeks of Shaker exerice
i am now able to drink a little water with no apparent
aspiration. I am being told that due to the radiation the
swelling in my airways is preventing me from being able to
speak and breath normally. At this time they are not sure
if the swelling will subside and I may have to live with
a trach the rest of my life. My pet scan and biopsy was
negative for any active cancer at this time however I am
devastated that i may have to live with the trach. Has
anyone in this network experinced the swelling problems
like me and eventually had their trach removed. I am 66 yrs
old and hoping for some type of quality of life to keep me going.

Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #2
    Welcome
    Congrats on what is the most important, no evidence of disease (NED). That is great news.

    I certainly believe with time and alot of effort your swallowing and speaking problems will get better, I took almost 20 months to get to a bearable point. You may have to have more dilations but hopefully not. I have a local friend that has had 13 and another who has only 4.

    I did not get my trach until 12 plus years post treatment not because of the swelling. That was 30 months ago. Lets make this clear, it is not the most fun to deal with and certainly I would give it up if I could. The first year was the worst, but with time it has become a more bearable and what I call a part of my "New Normal". It certainly helps me breath much easier that before, I also rest better than prior to having it.

    My important part of quality of life is being here, the few/many little bumps in road are all my new normal.

    Welcome to the best place to get information and unconditional support.

    John
  • larry447
    larry447 Member Posts: 22
    #3
    fisrpotpe said:

    Welcome
    Congrats on what is the most important, no evidence of disease (NED). That is great news.

    I certainly believe with time and alot of effort your swallowing and speaking problems will get better, I took almost 20 months to get to a bearable point. You may have to have more dilations but hopefully not. I have a local friend that has had 13 and another who has only 4.

    I did not get my trach until 12 plus years post treatment not because of the swelling. That was 30 months ago. Lets make this clear, it is not the most fun to deal with and certainly I would give it up if I could. The first year was the worst, but with time it has become a more bearable and what I call a part of my "New Normal". It certainly helps me breath much easier that before, I also rest better than prior to having it.

    My important part of quality of life is being here, the few/many little bumps in road are all my new normal.

    Welcome to the best place to get information and unconditional support.

    John

    thanks for your reply, what
    thanks for your reply, what my problem is i was not fully aware of the
    possible side effects from the radiation. Everything went so fast after
    being diagnosed no one really informed me of the horrible effects. I really
    thought I was doing good up until half way through the radiation treaments
    when i stared having swallowing problems. i realize after reading many of
    the informative post that not everyone reacts the same from the radiation.
    Like I stated in my post I am hoping for some type of normalcy.
    Larry
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #4
    Swelling
    Larry,

    This discussion comes up every once in awhile. Swelling and not being able to swallow. I have a question or two for you. Do you sleep laying flat at night? Did you have a neck disection? If so, how many Lymphnodes were removed ?

    I ask these questions because if your Lymphnode system has been altered, the fluids don't move like they did before, causing the fluid to back up and build up in your face and neck area. There is a gentle massage and some stretching exercises that can be taught to you by a Cancer Physical Therapist and that will in turn reduce the swelling in the inside as well as the outside of your neck. This will help with the passageway so you will be able to eat orally again.

    If you sleep in a flat position, the fluid then builds up in the neck area as well. You can purchase a foam wedge at different angles and elevate your back and shoulders somewhat and have you head above your heart level. During the day as we walk around, gravity helps us as the fluids will drain from our necks.

    There was a gentleman on another site that had the same issues about 2 years ago. He did the exercise and massage and finally had the trach removed. He had his in for nearly a year before starting the exercises. Radiation also can cause alot of damage and change the DNA in our tissue.

    My Best to You and Everyone Here
  • larry447
    larry447 Member Posts: 22
    #5
    MarineE5 said:

    Swelling
    Larry,

    This discussion comes up every once in awhile. Swelling and not being able to swallow. I have a question or two for you. Do you sleep laying flat at night? Did you have a neck disection? If so, how many Lymphnodes were removed ?

    I ask these questions because if your Lymphnode system has been altered, the fluids don't move like they did before, causing the fluid to back up and build up in your face and neck area. There is a gentle massage and some stretching exercises that can be taught to you by a Cancer Physical Therapist and that will in turn reduce the swelling in the inside as well as the outside of your neck. This will help with the passageway so you will be able to eat orally again.

    If you sleep in a flat position, the fluid then builds up in the neck area as well. You can purchase a foam wedge at different angles and elevate your back and shoulders somewhat and have you head above your heart level. During the day as we walk around, gravity helps us as the fluids will drain from our necks.

    There was a gentleman on another site that had the same issues about 2 years ago. He did the exercise and massage and finally had the trach removed. He had his in for nearly a year before starting the exercises. Radiation also can cause alot of damage and change the DNA in our tissue.

    My Best to You and Everyone Here

    swelling
    I did not have a disection however I do have lymphedema and I do the
    massages and exercises everyday. And yes I do not sleep in a flat position
    which helps with the swelling in the mornings when i wake up. I can only
    for now relate the swelling to the radiation based on what my doctor is
    telling me. I thank you for your input and hope i turn out like the gentleman
    you referred to who had his trach removed. I will continue the massages and
    exercises and hopefully taht will help.
    Larry
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Hi Larry
    I have a different type of cancer but I like many here would like to welcome you to the family here on CSN.
  • dennis318
    dennis318 Member Posts: 349 Member
    #7
    larry447 said:

    swelling
    I did not have a disection however I do have lymphedema and I do the
    massages and exercises everyday. And yes I do not sleep in a flat position
    which helps with the swelling in the mornings when i wake up. I can only
    for now relate the swelling to the radiation based on what my doctor is
    telling me. I thank you for your input and hope i turn out like the gentleman
    you referred to who had his trach removed. I will continue the massages and
    exercises and hopefully taht will help.
    Larry

    WelCome Larry
    You came to the right place and have talked to well informed guys here, we all have had the trach, and I have dealt with what you have gone threw, Mine was Cancer 4, the doctor miss it 5 times and cut my vocal chords, and the tumor, my l/s larnyx is a goner, i lived with teh trach twice, and forstrope and I now how we both feel about this, I fought the dam thing, mentally I couldn't hack it, and finally won the battle, but i pay the price of running out of air, having to take it easy to catch up, I work part time and still can receive dissability, the first check comes next week, it's taken 6 months, I as a male the first time with the trach was given choices i am greatful I didn't take, I had one doctor who wanted to take everything out, why in the hell would you take the total vocal chord out? I can speak, I do have sinus build up at nights, humidifier, Robitussin, and water breaks the phlem. I know what you mean, society looks at us like whats that? I referred it to my PVC Piping. I agree with it you do gain air to breath easier, some haven't got that choice, they still would be my best friend with it, I sleep the best on my right side, i grow tired in the noon, but still, i ruined most my shirts with the trach, remember the gagging from tube hitting. Or i would tape the front with medical tape and by bypass that velcro strip that stood out like a flag, and got wet. Like I told the doctors, it's a different story when you walk the walk, there not having to do it we do and try to help the next guy out, I'm upset from what i was given, Hang in there, Marine and fistrophe and who ever here no what we go threw..anymore questions fire away...Dennis...Take Care Everyone, It took 6-8 for swelling to go down from radiation, maybe longer, but they tried to early with mine and infection set in and swelled my airwaves, they reinserted the trach, I started to ask the doctor for the shut off cap to see during the day i could breath ok, and progress to 24 hours, give it a shot, ask your doctor to see if you can handle it after your next scope...take care
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #8
    larry447 said:

    swelling
    I did not have a disection however I do have lymphedema and I do the
    massages and exercises everyday. And yes I do not sleep in a flat position
    which helps with the swelling in the mornings when i wake up. I can only
    for now relate the swelling to the radiation based on what my doctor is
    telling me. I thank you for your input and hope i turn out like the gentleman
    you referred to who had his trach removed. I will continue the massages and
    exercises and hopefully taht will help.
    Larry

    Larry
    Seems like you are doing all the right things and as many have mentioned in the past, we all heal at a different rate. The amount of Radiation that each of us receives plays a big part of the healing process as well. You have already mentioned that in your post.

    I don't know what you do during the day as far as activity, but I found that if I got busy doing anything that required me to bend over and look under shelfing at work, my neck would really balloon up the next day. Then I would have to do the massage several times the following day. Lifting heavy boxes caused me to swell up also. Anytime we do any activity using our shoulder muscles, the blood flows to that area as well as the fluids from the lymph system. Just mentioning this for your knowledge. This was explained to me by my Physical Therapist years ago.

    I too, hope that you will be able to rid yourself of the trach down the road.

    My Best to You and Everyone Here
  • larry447
    larry447 Member Posts: 22
    #9
    dennis318 said:

    WelCome Larry
    You came to the right place and have talked to well informed guys here, we all have had the trach, and I have dealt with what you have gone threw, Mine was Cancer 4, the doctor miss it 5 times and cut my vocal chords, and the tumor, my l/s larnyx is a goner, i lived with teh trach twice, and forstrope and I now how we both feel about this, I fought the dam thing, mentally I couldn't hack it, and finally won the battle, but i pay the price of running out of air, having to take it easy to catch up, I work part time and still can receive dissability, the first check comes next week, it's taken 6 months, I as a male the first time with the trach was given choices i am greatful I didn't take, I had one doctor who wanted to take everything out, why in the hell would you take the total vocal chord out? I can speak, I do have sinus build up at nights, humidifier, Robitussin, and water breaks the phlem. I know what you mean, society looks at us like whats that? I referred it to my PVC Piping. I agree with it you do gain air to breath easier, some haven't got that choice, they still would be my best friend with it, I sleep the best on my right side, i grow tired in the noon, but still, i ruined most my shirts with the trach, remember the gagging from tube hitting. Or i would tape the front with medical tape and by bypass that velcro strip that stood out like a flag, and got wet. Like I told the doctors, it's a different story when you walk the walk, there not having to do it we do and try to help the next guy out, I'm upset from what i was given, Hang in there, Marine and fistrophe and who ever here no what we go threw..anymore questions fire away...Dennis...Take Care Everyone, It took 6-8 for swelling to go down from radiation, maybe longer, but they tried to early with mine and infection set in and swelled my airwaves, they reinserted the trach, I started to ask the doctor for the shut off cap to see during the day i could breath ok, and progress to 24 hours, give it a shot, ask your doctor to see if you can handle it after your next scope...take care

    thanks dennis
    Sounds like you went through the ringer but you are doing much better. I am
    happy for you and i hope the best for you. You mention that the l/s larnyx is
    goner, are you able to speak well. Also are you telling me that without the
    trach you are having problems breathing . When i was getting my radiation
    treatments i met two other guys who had similar type throat cancer as me. We
    all finished treatments around the same time. One of them had a trach and peg
    and has already had them removed. The other guy had a peg but no trach. He is
    doing pretty good with his eating and uses his peg tube sometimes. I have tried
    using the cap (passy muir) but i cannot breath with it. I was doing good with it
    up until about 4 weeks of my 8 weeks treatments. About a month ago the doctor gave
    me some prednisone and my swelling went down some and i was able to wear the cap
    for about 10 minutes. I also was able to speak a lot better than now. Actually I
    am limited on my activites because of my feeding and exercises i have to do daily.
    Glad to hear you are starting to receive your dissability soon and know that will
    help .
  • dennis318
    dennis318 Member Posts: 349 Member
    #10
    Hondo said:

    Hi Larry
    I have a different type of cancer but I like many here would like to welcome you to the family here on CSN.

    Hey Larry
    They gave me a choice on the trach or not having it, without it has it's draw backs, but, i got tied of changing and cleaning, and then trying to talk with teh cap on leaking air was a constant pain, they want to try to tie back teh l's of my larnyx, to open it more, for more oxygen, draw back on this is i could flood my lungs, or lose what i have a fo a voice as of right now. As you can see this one Specialist really screwed things up for me, and tey told me now to even consider a lawsuit, money and time against a large hpsital will drain you dry in a heart beat, but it's sad he continues and I hope that too many have faced his skillful surgery techniqus..Hang in there Dennis

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