Hondo

Dav1965
Dav1965 Member Posts: 132
in Head and Neck Cancer #1
I got you beat. I can open my mouth to 21mm. I understand where you are coming from. This jaw bone thing sucks. Plus i have a lot of pain in mine. Good luck in the future. David

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Dav

    Did you use a Dynaspline or Therabit to help with Jaw opening? I use the Therabit for a few years after that did not work my dentist told me to try the Dynasplint and I did get a little opening but not much more.

    It is hard living with just 20mm of opening but I make it, just takes twice as long to eat and keeps me lean and mean… lol On the pain it is hard for people to understand how it is, while eating the pain can come at anytime and all I can do is to hold my throat when it knots up and walk away. But I am so thankful it only last for a few mins but the numbness from it can last for hours.

    It you find anything that help with more opening please let me know and I will do the same if I find anything.

    Wishing you the best my friend
    Hondo
  • Dav1965
    Dav1965 Member Posts: 132
    #3
    Hondo said:

    Hi Dav

    Did you use a Dynaspline or Therabit to help with Jaw opening? I use the Therabit for a few years after that did not work my dentist told me to try the Dynasplint and I did get a little opening but not much more.

    It is hard living with just 20mm of opening but I make it, just takes twice as long to eat and keeps me lean and mean… lol On the pain it is hard for people to understand how it is, while eating the pain can come at anytime and all I can do is to hold my throat when it knots up and walk away. But I am so thankful it only last for a few mins but the numbness from it can last for hours.

    It you find anything that help with more opening please let me know and I will do the same if I find anything.

    Wishing you the best my friend
    Hondo

    Pain
    I did find a way to make pain better. I dont know if this will work or not but i will try. When you are eating and get the pain that comes what the physical therapist told me to do and it works for me at least. Take your pointing finget and push in a little bit and open your mouth about 10 times and the pain should go away. Mine comes from a deteriated jaw bone. When i open my mouth to wide it pops and hurts like the devil.

    If you want i will look for the paper she gave me so i can send it in a e-mail. People dont understand i hurt worse now than before i had cancer. Sorry you have these problems because i know how bad i feel. So i assume you feel the same. My doctor seems to think arthritis might be some of the problem from my 15 hour operation with my jaw cranked open.

    If you dont mind me asking how well can people understand you. I think im about 40 % where i want to be. My doctor told me he is probaly through with my tongue shaping because of my messed up jaw. He thinks he will cause more jaw problems and eating problems than he can get out of helping me talk. So the bad out does the good.

    God bless you because i know exactly where you are at. My jaws get tired and hurt before i get full. I live off of choclate milk. If i have any better information i will definatly let you know. I did see a physical therapist and she helped some. Good luck. David
  • Dav1965
    Dav1965 Member Posts: 132
    #4
    Dav1965 said:

    Pain
    I did find a way to make pain better. I dont know if this will work or not but i will try. When you are eating and get the pain that comes what the physical therapist told me to do and it works for me at least. Take your pointing finget and push in a little bit and open your mouth about 10 times and the pain should go away. Mine comes from a deteriated jaw bone. When i open my mouth to wide it pops and hurts like the devil.

    If you want i will look for the paper she gave me so i can send it in a e-mail. People dont understand i hurt worse now than before i had cancer. Sorry you have these problems because i know how bad i feel. So i assume you feel the same. My doctor seems to think arthritis might be some of the problem from my 15 hour operation with my jaw cranked open.

    If you dont mind me asking how well can people understand you. I think im about 40 % where i want to be. My doctor told me he is probaly through with my tongue shaping because of my messed up jaw. He thinks he will cause more jaw problems and eating problems than he can get out of helping me talk. So the bad out does the good.

    God bless you because i know exactly where you are at. My jaws get tired and hurt before i get full. I live off of choclate milk. If i have any better information i will definatly let you know. I did see a physical therapist and she helped some. Good luck. David

    Hondo
    I read where you still have your salavirary glands congrats because i lost mine during radiation. I am always getting colder than my wife. Before cancer she was the one always cold. I dont know if i have thyroid issues or i just lost 30 lbs and that makes a difference. What would be your guess. Thanks David
  • HAWVET
    HAWVET Member Posts: 318
    #5
    Dav1965 said:

    Hondo
    I read where you still have your salavirary glands congrats because i lost mine during radiation. I am always getting colder than my wife. Before cancer she was the one always cold. I dont know if i have thyroid issues or i just lost 30 lbs and that makes a difference. What would be your guess. Thanks David

    Hi Dav and Hondo
    I just am glad to have this site available. I seldom post because most of the topics are beyond me. Although I do not have the open mouth problem, my mouth is very dry. It has gotten worse (mine is probably old age). The interesting part is how some folks really do not understand.

    Just last month, there was a lady who tried to convince me that I needed to drink more water. She has a saliva problem, but her's slight due to aging. I did not prolong it and gave up the discussion.

    Dav, your cold problem caught my eye. Before my cancer, my wife was always cold. Like you, we are now the opposite. Back then, I was between 170-180 pounds at 5'8". She was probably about 120. We are about the same weight now, but I am taller...oops, not that heavy but just above 150. My guess is by comparison to body fat, your wife's is higher than yours. That is just Johnny's thoughts and not a scientific conclusion. :)
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Dav1965 said:

    Pain
    I did find a way to make pain better. I dont know if this will work or not but i will try. When you are eating and get the pain that comes what the physical therapist told me to do and it works for me at least. Take your pointing finget and push in a little bit and open your mouth about 10 times and the pain should go away. Mine comes from a deteriated jaw bone. When i open my mouth to wide it pops and hurts like the devil.

    If you want i will look for the paper she gave me so i can send it in a e-mail. People dont understand i hurt worse now than before i had cancer. Sorry you have these problems because i know how bad i feel. So i assume you feel the same. My doctor seems to think arthritis might be some of the problem from my 15 hour operation with my jaw cranked open.

    If you dont mind me asking how well can people understand you. I think im about 40 % where i want to be. My doctor told me he is probaly through with my tongue shaping because of my messed up jaw. He thinks he will cause more jaw problems and eating problems than he can get out of helping me talk. So the bad out does the good.

    God bless you because i know exactly where you are at. My jaws get tired and hurt before i get full. I live off of choclate milk. If i have any better information i will definatly let you know. I did see a physical therapist and she helped some. Good luck. David

    Peoples understanding

    Like you said it is a very hard thing for someone to understand what we go through everyday. One of my bosses told me a few years ago. OK now that you are normal again and treatment is over and you going to live, it is time to get back to how things were before. I tried but just could not pull the load. Understand I been working in the Oil Field for over 39 years and moving up the ladder till C. I never stopped working through my treatment, but some days would come into work just too sleep on my desk. It was not long before I realize that what I do was too much for me, so my company was very good about it and just moved me down the line a little. About 8 months ago they had to move me down the line again to a supervisor. But the good thing in all of this is they never change my pay. We had a big layoff a month ago over 100 people but they left me here doing what I do; all I can say is thank you Lord for watching over and protecting me.

    If you see and lot of misspelling words and backwards letters it is because my dyslexia that I had as a kid and have learned to overcome as an adult is part of my life again thanks to C.

    But I am glad that I am still here and that my faith in God is stronger then ever.

    All the best my friend
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Dav1965 said:

    Hondo
    I read where you still have your salavirary glands congrats because i lost mine during radiation. I am always getting colder than my wife. Before cancer she was the one always cold. I dont know if i have thyroid issues or i just lost 30 lbs and that makes a difference. What would be your guess. Thanks David

    Cold

    I too like Johnny believe it is a side effect of losing too much weight during treatment. I was 230lbs before C and now I am 156lbs and cold all the time, I sleep with three blankets and my wife sleeps with nothing. I love spring, summer, and fall, but hate winter time because it is just too cold.

    God bless you while in His workshop
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    HAWVET said:

    Hi Dav and Hondo
    I just am glad to have this site available. I seldom post because most of the topics are beyond me. Although I do not have the open mouth problem, my mouth is very dry. It has gotten worse (mine is probably old age). The interesting part is how some folks really do not understand.

    Just last month, there was a lady who tried to convince me that I needed to drink more water. She has a saliva problem, but her's slight due to aging. I did not prolong it and gave up the discussion.

    Dav, your cold problem caught my eye. Before my cancer, my wife was always cold. Like you, we are now the opposite. Back then, I was between 170-180 pounds at 5'8". She was probably about 120. We are about the same weight now, but I am taller...oops, not that heavy but just above 150. My guess is by comparison to body fat, your wife's is higher than yours. That is just Johnny's thoughts and not a scientific conclusion. :)

    Hi Johnny

    I always love when you post my friend, and I look to you as the big brother of NPC. That is what gives me and many more NPC victims hope for a long life ahead with our new normal.

    Thanks for being a friend
    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    HAWVET said:

    Hi Dav and Hondo
    I just am glad to have this site available. I seldom post because most of the topics are beyond me. Although I do not have the open mouth problem, my mouth is very dry. It has gotten worse (mine is probably old age). The interesting part is how some folks really do not understand.

    Just last month, there was a lady who tried to convince me that I needed to drink more water. She has a saliva problem, but her's slight due to aging. I did not prolong it and gave up the discussion.

    Dav, your cold problem caught my eye. Before my cancer, my wife was always cold. Like you, we are now the opposite. Back then, I was between 170-180 pounds at 5'8". She was probably about 120. We are about the same weight now, but I am taller...oops, not that heavy but just above 150. My guess is by comparison to body fat, your wife's is higher than yours. That is just Johnny's thoughts and not a scientific conclusion. :)

    Johnny
    Yeah, nobody gets the extreme dry mouth thing with me, either. It's hard for me to carry on any kind if conversation. I have to drink a sip after every other sentence. Squirt biotene spray to try and keep talking. I get so dry from just a little bit of talking that it starts off a whole chain reaction, where my lips stick to my teeth, my tongue dries out even more that it already is, I get a constant dry tickle back there in a spot that is impossible to soothe or quench, then my right eye starts watering and tearing like mad, then I cough, sneeze and dry heave. Fun, no?

    Water doesn't help. I do take sips of it through out the day, but honestly, my mouth feels worse, and even more dry after I drink it. Almost like it strips off what ever little saliva enzymes I do have. The dry mouth and stricture are really the two worst side effects I have. The dry mouth thing may be why my tongue still hurts and it's sore after two years. I have a constant hacking dry cough despite all the dry mouth products and teeth brushing. It sucks. When ever docs have to look in my mouth for whatever reason, their first comment is always about how dry my mouth is. Blah.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #10
    sweetblood22 said:

    Johnny
    Yeah, nobody gets the extreme dry mouth thing with me, either. It's hard for me to carry on any kind if conversation. I have to drink a sip after every other sentence. Squirt biotene spray to try and keep talking. I get so dry from just a little bit of talking that it starts off a whole chain reaction, where my lips stick to my teeth, my tongue dries out even more that it already is, I get a constant dry tickle back there in a spot that is impossible to soothe or quench, then my right eye starts watering and tearing like mad, then I cough, sneeze and dry heave. Fun, no?

    Water doesn't help. I do take sips of it through out the day, but honestly, my mouth feels worse, and even more dry after I drink it. Almost like it strips off what ever little saliva enzymes I do have. The dry mouth and stricture are really the two worst side effects I have. The dry mouth thing may be why my tongue still hurts and it's sore after two years. I have a constant hacking dry cough despite all the dry mouth products and teeth brushing. It sucks. When ever docs have to look in my mouth for whatever reason, their first comment is always about how dry my mouth is. Blah.

    Sweet... I resemble these remarks...
    Yep, tongue still hurts at times... most times...

    Gotta love the new normal, um 'abi' normal.

    Deb
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    D Lewis said:

    Sweet... I resemble these remarks...
    Yep, tongue still hurts at times... most times...

    Gotta love the new normal, um 'abi' normal.

    Deb

    Deb
    I remember reading your blog entry a couple of months ago about your frustration. Yep. I could have wrote what you did. We are in the same boat I suppose. We should christen it the SS Abi-Normal. My ship is sailing outta Crapville. ;-)
  • CajunEagle
    CajunEagle Member Posts: 408
    #12
    sweetblood22 said:

    Johnny
    Yeah, nobody gets the extreme dry mouth thing with me, either. It's hard for me to carry on any kind if conversation. I have to drink a sip after every other sentence. Squirt biotene spray to try and keep talking. I get so dry from just a little bit of talking that it starts off a whole chain reaction, where my lips stick to my teeth, my tongue dries out even more that it already is, I get a constant dry tickle back there in a spot that is impossible to soothe or quench, then my right eye starts watering and tearing like mad, then I cough, sneeze and dry heave. Fun, no?

    Water doesn't help. I do take sips of it through out the day, but honestly, my mouth feels worse, and even more dry after I drink it. Almost like it strips off what ever little saliva enzymes I do have. The dry mouth and stricture are really the two worst side effects I have. The dry mouth thing may be why my tongue still hurts and it's sore after two years. I have a constant hacking dry cough despite all the dry mouth products and teeth brushing. It sucks. When ever docs have to look in my mouth for whatever reason, their first comment is always about how dry my mouth is. Blah.

    Amazing
    After two years and two months after treatment, I'm in the exact same condition as you as far as the dry mouth is concerned. At one time, this past Spring, I thought I was doing much better at saliva production, but this Summer, and all it's high heat indexes, have left me with the Sahara Desert for a mouth. I'm not coughing too badly, but more of a gagging up junk from deep in my throat.....( I know. Too much information.) Maybe I've taken a step or two backward, but hopefully things will get better when it cools down.

    Larry

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