Good news and bad (frustrating) news

Greend
Greend Member Posts: 678
edited March 2014 in Head and Neck Cancer #1
Let me give a little background. 13 years ago I was treated for tonsil cancer, standard chemo and radiation. I suffered all the symptoms that I see here and after time I got used to the dry mouth and the constant need for water. About two 1/2 years ago my chin became totally numb. I went to a neurologist and he said I'd probably had a TIA, put me on asprin and started watching blood pressure more closely. Last year I had to have a spur removed from my shoulder which required anesthesia and the passing of a tube down my throat. Shortly after that my voice suddenly became very raspy, I attributed it to the anesthesia. I went to a local ENT and he told me I had a paralyzed left vocal cord but offered no explanation or treatment. I failed to mention that all this time I am having more difficulty swallowing and lost a significant amount of weight. My GP Dr scheduled me to go to UAB in Birmingham where they ran all sorts of tests (all that did was show me how to hold my head when swallowing to get maximum swallowing capability - looks dumb but did help). I had a peg inserted and all was going as well as could be expected. Two weeks ago I mentioned that I was getting numbness in my lower right neck area and a tingling in the lower lobe of my right ear. While I wasn't all that concerned about it the Dr was. He hdd told me earlier that the numbness in my chan and the lost vocal cord was a side affect of the radiation, one that normally shows up around the seven year point if it is going to happen. He is also certain that the tingling is being caused by scar tissue on the trigeminal nerve (or a tumor)not the results of a TIA and he scheduled me for an MRI which I had done this past Friday.

Now the good news - bad news. Good news is there is no tumor or scar tissue. The frustrating news is that once again I don't know what is causing this. I was totally prepared for the affects of nerve damage (which is not pleasant) and now I'm back to wondering and not knowing. The tingling in my neck is becoming more constant and just this past weekend the end of my tongue started getting numb (Dr doesn't know this yet)

Any past experience, thoughts or recommendations appreciated. I'll be going back to see the Dr next week if they can get me on his cal;endar.


Sorry for the long post but it really depressed me and thought I'd ask.

Denny

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Denny

    The numbness in my tongue gets so bad that I can speak, eat or swallow, it start right under the left part of the Jaw bone in the neck and moves to the right side taking everything out in its path. I too can’t get anyone to explain why this is happing, all they say is side affects
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    numbness
    In the absence of a tumor or scar tissue, it could be that it is just the effects of the radiation coming into play late in the game.

    Perhaps it is time to see a neurologist for these symptoms. Several years ago I was diagnosed with "silent migraines". There is no headache, sometimes ocular symptoms but always numbness in my chin and my tongue. It can last for several hours or several days, dependent upon the severity. Not saying that's what you have going on but it took a neurologist to diagnose this.

    Worth considering, I think. It at least let me know I was not having TIAs which was my concern.

    By the way, I've noted you live in Alabama. Jim and I live in Huntsville - have all our lives.
  • Greend
    Greend Member Posts: 678
    #4
    Noellesmom said:

    numbness
    In the absence of a tumor or scar tissue, it could be that it is just the effects of the radiation coming into play late in the game.

    Perhaps it is time to see a neurologist for these symptoms. Several years ago I was diagnosed with "silent migraines". There is no headache, sometimes ocular symptoms but always numbness in my chin and my tongue. It can last for several hours or several days, dependent upon the severity. Not saying that's what you have going on but it took a neurologist to diagnose this.

    Worth considering, I think. It at least let me know I was not having TIAs which was my concern.

    By the way, I've noted you live in Alabama. Jim and I live in Huntsville - have all our lives.

    Huntsville
    I'm up there all the time. Just got back from a two week effort in fact. Our corp hq is there.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #5
    Greend said:

    Huntsville
    I'm up there all the time. Just got back from a two week effort in fact. Our corp hq is there.

    What a very small world!
    Good to know of others in the area with such treatment success.
  • dennis318
    dennis318 Member Posts: 349 Member
    #6
    Greend said:

    Huntsville
    I'm up there all the time. Just got back from a two week effort in fact. Our corp hq is there.

    Left side of Larynx paralysis as well
    Mine started out we thought as sinus infection, after a few months we went to a specialist, we tried steroids, then we ran all stand cancer tests, , we eventually tired a spacer in the vocal chord, that didn't work, he finally got tired of not fixing this easy fix, sent me to a larger hospital, after he enjoyed my insursance. they found the tumor on my larynz, but they still have no idea how it quit, so, they removed teh implant. and did the standard cancer chemo and radiation, which nealry did me in, I live near the Alabama and Tennesses Border, so it is a small world, I can breaths it's difficult, and I can talk, but they seem to encourage a mototrized version of speaking, I couldn't do this. I had half a good vocal mechanism, and breathing gets a little hard at times. but I feel the Doctors previously did the damage, they ran all test which came back negative, and they rescope and bam, there's a tunor, you go figure, wasted 2 months, and they started the testing back over again, after he sliced into tumor to put the implant in, that they had to remove......There's a horror story I am sure that's worst..Please share, I thought I was a Guinney Pig. Dennis in Tennessee
  • Scambuster
    Scambuster Member Posts: 973
    #7
    dennis318 said:

    Left side of Larynx paralysis as well
    Mine started out we thought as sinus infection, after a few months we went to a specialist, we tried steroids, then we ran all stand cancer tests, , we eventually tired a spacer in the vocal chord, that didn't work, he finally got tired of not fixing this easy fix, sent me to a larger hospital, after he enjoyed my insursance. they found the tumor on my larynz, but they still have no idea how it quit, so, they removed teh implant. and did the standard cancer chemo and radiation, which nealry did me in, I live near the Alabama and Tennesses Border, so it is a small world, I can breaths it's difficult, and I can talk, but they seem to encourage a mototrized version of speaking, I couldn't do this. I had half a good vocal mechanism, and breathing gets a little hard at times. but I feel the Doctors previously did the damage, they ran all test which came back negative, and they rescope and bam, there's a tunor, you go figure, wasted 2 months, and they started the testing back over again, after he sliced into tumor to put the implant in, that they had to remove......There's a horror story I am sure that's worst..Please share, I thought I was a Guinney Pig. Dennis in Tennessee

    N.O.T.
    It seems no one has the answers to many of these problems. If I were in your situations, I would try to find an N.O.T. practitioner. N.O.T. is Neural Organization Therapy, a form of applied Kinesiology.

    Through a series of muscle testing, they can determine what circuits in the nervous system are not functioning and isolate the problem, then work on getting it working or helping the body find a way to repair the damage.

    It may be a bit 'out there' for some people, but I have used it and it worked for me. I am sure you can track down someone within reasonable distance and perhaps you can call first to discuss your case. There are other sites but this one popped up first.

    Hope this may be of some help.

    Scam

    http://www.neuralorganizationtherapy.com/What_is_N.O.T.html
  • Greend
    Greend Member Posts: 678
    #8
    Scambuster said:

    N.O.T.
    It seems no one has the answers to many of these problems. If I were in your situations, I would try to find an N.O.T. practitioner. N.O.T. is Neural Organization Therapy, a form of applied Kinesiology.

    Through a series of muscle testing, they can determine what circuits in the nervous system are not functioning and isolate the problem, then work on getting it working or helping the body find a way to repair the damage.

    It may be a bit 'out there' for some people, but I have used it and it worked for me. I am sure you can track down someone within reasonable distance and perhaps you can call first to discuss your case. There are other sites but this one popped up first.

    Hope this may be of some help.

    Scam

    http://www.neuralorganizationtherapy.com/What_is_N.O.T.html

    thanks scam
    I'll check it out. Nothing to lose - well excepy my voics :>)

    Denny
  • dennis318
    dennis318 Member Posts: 349 Member
    #9
    Greend said:

    thanks scam
    I'll check it out. Nothing to lose - well excepy my voics :>)

    Denny

    What was your outccome????
    Denny,
    after the months of recouping, what was your outcome, do you have a voice, or half, how is your breathing?....Please anyone with the same l/s larnyz paralysis, let me no. Thanks Dennis In Tennessee
  • Scambuster
    Scambuster Member Posts: 973
    #10
    Greend said:

    thanks scam
    I'll check it out. Nothing to lose - well excepy my voics :>)

    Denny

    Update on N.O.T.
    Denny,

    I called my NOT Guy and he said they get very good results with physical trauma patients but more limited outcomes with Radiation damaged patients. He did mentioned certain vitamin supplements were very important for nerve damage repair namely all the B Vitamins and a few other specific ones but you should seek advice as some of these are not to be applied in a generic manner. These all would taken in quite high doses.

    Regds
    Scam
  • Greend
    Greend Member Posts: 678
    #11
    dennis318 said:

    What was your outccome????
    Denny,
    after the months of recouping, what was your outcome, do you have a voice, or half, how is your breathing?....Please anyone with the same l/s larnyz paralysis, let me no. Thanks Dennis In Tennessee

    Yes I still have my voice since only the left vacal cord is paralyzed however I can't raise it more than a low conversation and it is very raspy. Example: I can't order food through a drive-up window any more because they can't understand me. It is strange in that the left side is also where I seem to lose stuff (pills) under my tongue (remember that my lower lip and chin are numb) yet my right side is where I'm getting the constant tingling and neck spasms (also sometimes a tic in my right eye, no idea if it is related). I have also lost the ability to enunciate some sounds such as the "GRR" sound - this really gets interesting since my last name is Green. Dr says the nerve damage is causing the problems with speech as well as the numbness in the chin area. He also says I may lose the ability to enunciate totally but I haven't gotten into that much with him yet, I was hoping the MRI would explain it all. My next visit I will have a ton of questions. I learned from my treatment 13 years ago that I should have asked more questions and believe me, now I do. I wonder how many of us heard "dry mouth" and just thought "well thats not that bad"...:>)

    I'll let you know what I learn after my next visit.
  • dennis318
    dennis318 Member Posts: 349 Member
    #12
    Greend said:

    Yes I still have my voice since only the left vacal cord is paralyzed however I can't raise it more than a low conversation and it is very raspy. Example: I can't order food through a drive-up window any more because they can't understand me. It is strange in that the left side is also where I seem to lose stuff (pills) under my tongue (remember that my lower lip and chin are numb) yet my right side is where I'm getting the constant tingling and neck spasms (also sometimes a tic in my right eye, no idea if it is related). I have also lost the ability to enunciate some sounds such as the "GRR" sound - this really gets interesting since my last name is Green. Dr says the nerve damage is causing the problems with speech as well as the numbness in the chin area. He also says I may lose the ability to enunciate totally but I haven't gotten into that much with him yet, I was hoping the MRI would explain it all. My next visit I will have a ton of questions. I learned from my treatment 13 years ago that I should have asked more questions and believe me, now I do. I wonder how many of us heard "dry mouth" and just thought "well thats not that bad"...:>)

    I'll let you know what I learn after my next visit.

    Same Here
    I had the same thing happen at Sonic's, they can't understand me at the ordering machine, but they do send someone out to help me, I'm a celeb I guess you could say, How's your breathing, you never answered me back?...I Can't do anything real strenuous, i have to sit and let my body catch up with itself. Tired of of having life pulled fom me, My neck is extremely tight from where they did a implant, then a trache implant, and thenanother implant, I am trying to stretch my throat muscles, and neck to relieve this tightness....think of it as a kink in a garden hose.My voice has improved though, I have had alot of people comment on it. Like I said efore I was given the option of the throat prothesis, but passed it, I am glad I did, Right now I am trying to keep sane and my head above the water, I haven't never came across such tides of frustration and anger before...Best to all. Dennis. I appreciate anyone with similar paraylisis as Greend or myself have to share.

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