Post Treatment Nerve Damage

lyolan1
lyolan1 Member Posts: 95
edited March 2014 in Head and Neck Cancer #1
Hello Everybody,
I hope this post finds people doing well and fighting hard to beat this ugly head and neck cancer. the surgery, chemo, and radiation were just debilitating and brutal. I finished treatments for tonsil cancer 11/1/09. I had a neck dissection surgery 7/24, not radical. Immediately after surgery, my left shoulder was extreemly sore, a nerve was cut. Also, I lost control of my left lower lip, another nerve damaged. My question is, once these nerves are cut/damaged, do they repair themselves? Has anyone experienced these symptoms after surgery? the crooked smile is livable, but annoying. Please let me know how similar cases have turned out. Peace and good luck. Alex.

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Alex
    Some very good questions, as you know I am almost 4 ½ years from my last treatment and I am just now starting to have problems with the nerves in my Jaw and face. The doctors tell me it is just side affects of the radiations. Form what I am seeing I believe the damage from the nerves will be permanent. I get a lot of numbness in my face and tongue to where I can’t talk and the paid under the jaw in the neck gets to where I can’t move. I guess it is all part of the new me now, please let me know if you find anything that can help.

    Take care and God be with you.
  • Scambuster
    Scambuster Member Posts: 973
    #3
    Applied Kinesiology
    Hi Hondo & Alex,

    I am waiting for a call back from my brother who does a specialized type of Applied Kinesiology (N.O.T.). I know they would certainly diagnose the damage but I am unsure how effective they would be to regenerate damaged nerves.

    UPDATE: I spoke with my brother and the general opinion is mixed. There is often some recovery of damaged nerves possible through Applied Kinesiology and N.O.T. (Neurological Organization Therapy). It depends on severity, time past since damage occurred, age of patient and severity of the damage. Saying this, he said there have been some phenomenal recovery stories, even of paraplegic patients. My brother has treated people scheduled for both neck and lower back 'vertebra fusion surgery', and sent them off fully recovered and back on their bikes ... surgery cancelled ;0)

    Because most of us have had surgery so close to the head, the affect on the Central Nervous System is often involved and can be harder to treat than nerve damage to the peripheral parts of the body.

    in summary, it is something I would personally look into as I have had successful results from various alternative therapies.

    We don't need a debate here on the merits of alternative treatments, it's a personal choice and up to the individual to become informed and seek such treatment. If this scenario is not your bag, stay with your Doctors.

    As we are often left with side effects our Doctors didn't inform us of prior to treatment, they can be hard to accept and drive us to seek a solution. Some of these searches may prove successful, some not. If I am in pain, I seek relief and in some cases have resorted to unconventional treatments and found permanent relief.

    Regds
    Scambuster
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Scambuster said:

    Applied Kinesiology
    Hi Hondo & Alex,

    I am waiting for a call back from my brother who does a specialized type of Applied Kinesiology (N.O.T.). I know they would certainly diagnose the damage but I am unsure how effective they would be to regenerate damaged nerves.

    UPDATE: I spoke with my brother and the general opinion is mixed. There is often some recovery of damaged nerves possible through Applied Kinesiology and N.O.T. (Neurological Organization Therapy). It depends on severity, time past since damage occurred, age of patient and severity of the damage. Saying this, he said there have been some phenomenal recovery stories, even of paraplegic patients. My brother has treated people scheduled for both neck and lower back 'vertebra fusion surgery', and sent them off fully recovered and back on their bikes ... surgery cancelled ;0)

    Because most of us have had surgery so close to the head, the affect on the Central Nervous System is often involved and can be harder to treat than nerve damage to the peripheral parts of the body.

    in summary, it is something I would personally look into as I have had successful results from various alternative therapies.

    We don't need a debate here on the merits of alternative treatments, it's a personal choice and up to the individual to become informed and seek such treatment. If this scenario is not your bag, stay with your Doctors.

    As we are often left with side effects our Doctors didn't inform us of prior to treatment, they can be hard to accept and drive us to seek a solution. Some of these searches may prove successful, some not. If I am in pain, I seek relief and in some cases have resorted to unconventional treatments and found permanent relief.

    Regds
    Scambuster

    N.O.T.

    Thanks my friend, I will look into this and see what I can find here in the US. Sometimes our doctors are so involved in curing our cancer they forget that we are human and have other needs. I wish your brother lived here in the US.

    Alex: If I find out anything more on this I will let you know, please do the same if you find out anything more.

    Take care and God be with you.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #5
    "A kiss is just a kiss"
    I had a radical neck dissection in October of '05, Alex, along with replacement of half of my tongue with tissue and nervesfrom my left arm.

    I am happy with the results, do not have a droopy lip, and were it not for the thinning effects of a subsequent bout with lung cancer would have little to complain about: they did a good job.

    Still, there are small parts of my right neck, in particular, that do not feel. I am fortunate that no hair grows on the underside of my jaw, frankly, since shaving over there would be a risky routine.

    Still, I cannot whistle.

    Still, I cannot kiss like I did before.

    That said, you must be aware that doctors have found many instances of nerves growing back, either on their own or as the result of therapy.

    My advice would be to see a physical therapist, Alex, armed with fortitude and a clear goal: to fix that droopy lip.

    I wish you the best.

    Take care,

    Joe
  • lyolan1
    lyolan1 Member Posts: 95
    #6
    Hondo said:

    N.O.T.

    Thanks my friend, I will look into this and see what I can find here in the US. Sometimes our doctors are so involved in curing our cancer they forget that we are human and have other needs. I wish your brother lived here in the US.

    Alex: If I find out anything more on this I will let you know, please do the same if you find out anything more.

    Take care and God be with you.

    Nerve Damage
    HI Hondo, I'm glad to hear that you are doing well. I admire your determination to beat this cancer. It is a little ironic that when you beat hnc, there are often other detrimental colateral damage. I believe that simple pt can fix my shoulder problem. My lip is unnoticeable to other people, only to myself. I have the same problem as Soccer Freak. I cannot kiss my wife the way i used to, I haave a crooked smile, and cannot whistle. Again, all these gripes are minor, but annoying. I just want to get back to normal. I appreciate everyones concern and support. The doc thinks that the lip nerve will regenerate. Like you Hondo, it feels like it is going to be permanent. I will definitely look into alternative treatnents. Thanks guys. Alex
  • delnative
    delnative Member Posts: 450 Member
    #7
    soccerfreaks said:

    "A kiss is just a kiss"
    I had a radical neck dissection in October of '05, Alex, along with replacement of half of my tongue with tissue and nervesfrom my left arm.

    I am happy with the results, do not have a droopy lip, and were it not for the thinning effects of a subsequent bout with lung cancer would have little to complain about: they did a good job.

    Still, there are small parts of my right neck, in particular, that do not feel. I am fortunate that no hair grows on the underside of my jaw, frankly, since shaving over there would be a risky routine.

    Still, I cannot whistle.

    Still, I cannot kiss like I did before.

    That said, you must be aware that doctors have found many instances of nerves growing back, either on their own or as the result of therapy.

    My advice would be to see a physical therapist, Alex, armed with fortitude and a clear goal: to fix that droopy lip.

    I wish you the best.

    Take care,

    Joe

    Hey, Alex
    I had a modified radical neck dissection on Jan. 20, 2009 -- just as Obama was taking the oath of office.
    My shoulder came through just fine, but I do have the lopsided smile. If I try to open my mouth as wide as I can, the left side works fine but the right side doesn't open as wide as the left. It's a minor annoyance.
    When I noticed it right after surgery, my doc said it would probably get better by July 2009. Unfortunately, there's been no change. But like I said, it's only a minor annoyance and not a big deal.
    Thankfully, I was spared any shoulder problems.
    Good luck!

    --Jim in Delaware
  • micktissue
    micktissue Member Posts: 430
    #8
    lyolan1 said:

    Nerve Damage
    HI Hondo, I'm glad to hear that you are doing well. I admire your determination to beat this cancer. It is a little ironic that when you beat hnc, there are often other detrimental colateral damage. I believe that simple pt can fix my shoulder problem. My lip is unnoticeable to other people, only to myself. I have the same problem as Soccer Freak. I cannot kiss my wife the way i used to, I haave a crooked smile, and cannot whistle. Again, all these gripes are minor, but annoying. I just want to get back to normal. I appreciate everyones concern and support. The doc thinks that the lip nerve will regenerate. Like you Hondo, it feels like it is going to be permanent. I will definitely look into alternative treatnents. Thanks guys. Alex

    Alex: nerve damage
    Hi Alex. My brother is a zoo vet and says that superficial nerves (not major nerves controlling movement) grow back at a rate of 1mm a day. In my case I have no sensation from below my chin to my collar bone and from about the middle of my neck to my ear. If what my brother says is true for humans, then I can expect about a 3 month regrowth. My surgeon says yes it "should" all come back, so perhaps it all will. I agree this lack of sensation is annoying in perspective (the alternative is not an option!).

    As far as major nerves I do not know the time line for recovery but will ask.

    Warmly,

    Mick

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