pain meds

I am posting tis to ask for any info on what others are using for pain managment. I was diagnosed with adenoid cycstic carsonoma in sept 03 had radiation and was told I was good to go. Unfortunatly its not turning out that way. In the last 2 and a half years I've had 3 more operations and 5 teeth removed because of oesteoradionecrosiss, a bone infection in my jaw, hbo therapy twice, and now my jaw is broken. The doctor thinks it might heal so we are waiting on the jaw replacment. As you can imagine I'm in a pretty fair amount of pain between the broken jaw, bad teeth,and severe jaw and neck cramps. When I mention this to my doctors they tell me to take a tylenol. This is not working and I feel I have endured long enough.Any info would be appreciated as I'm seeing the doctor soon and would like some ammo to help, thank you

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Tylenol
    Damn, that's a tough crowd you hang with.... I think I might seek some other opinions from a different set of MD's.

    Welcome and sorry for that pain....it has got to be miserable.

    There are a few on here that have gone though much the same as you. Hopefully they'll chime in soon and be able to help you out.

    Thoughts & Prayers,
    John
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Pain meds for me
    I have had a lot of your pain symptoms in the nearly three years since my chemo and rads treatments for BOT cancer. I have also developed ORN and have had only one tooth extracted--so far. I will see a new doctor in two days who specializes in jaw ORN--I could be looking at a jaw resection. I have a constant pain level of 2/3 out of 10, with spikes to 5/6 on some days. I can handle the 2/3 range with no meds, but use liquid Roxicet for the spikes, and have found that to be very effective during the day. But, I think it has some kind of stimulant in it that keeps me awake if I take it past 8 PM. OTC meds have not helped with this level of pain, so I have used the Roxicet as needed.

    mike
  • adventurebob
    adventurebob Member Posts: 691
    ouch
    Pain isn't ok and if what you're taking isn't getting rid of it then something else can. I had to use dilaudid when it got bad. Started with vicodin, went to percoset, ended up with dilaudid. There's a progression of pain meds. The idea is to not take anything stronger than you need. Tylenol is a good place to start but obviously isn't cutting it. Vicodin would probably be the next step. Sometimes it takes insistence and persistence to make your docs understand what you need. Healing can't happen when you are in pain. Docs should know that. Wishing you freedom from pain and speedy healing.

    AB
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    The potential conflict between patient and doctor
    with regard to pain control is partly caused by the doctor's own biases regarding pain. Some are quite empathetic toward the issue, and some are simply not. There is a tendency on the part of healthcare providers to underprescribe for pain, in the mistaken assumption that we may be drug-seeking.

    You have a valid reason to be experiencing a significant degree of pain. And you need help with this. To that end there are several options available to you. These in part depend on what your relationship to your current doctor is, and that's something you will have to judge.

    If you have an otherwise good relationship with him, and don't want to burn a bridge with him you should first start by describing the amount of pain and incapacity you are having in detail, and make specificc requests. Both my medical and nuclear oncologist ask me what pain pill I wanted prescribed, were very liberal in the number they alloted me, and made it plain if that was inadequate they could increase dose and/or change meds. They ask me each visit if I need refills.

    If it is your sense that your doctor is simply not going to play ball with you on this, you might requests referral to a pain specialist. A pain specialist would look at ORN complications, then look at you taking tylenol, and conclude your pain management was inadequate.

    As a last resort you could simply start over and see another treatment physician. That might work, but it might not as well. Patients who self refer to a similar specialist for pain control alone are generally viewed as drug seekers, so this may produce neutral or negative results.

    If it were me, I'd try to work this out with my current doctor first, unless he'd given me other reasons to want to change.

    Best wishes,

    pat
  • tommyodavey
    tommyodavey Member Posts: 726 Member

    The potential conflict between patient and doctor
    with regard to pain control is partly caused by the doctor's own biases regarding pain. Some are quite empathetic toward the issue, and some are simply not. There is a tendency on the part of healthcare providers to underprescribe for pain, in the mistaken assumption that we may be drug-seeking.

    You have a valid reason to be experiencing a significant degree of pain. And you need help with this. To that end there are several options available to you. These in part depend on what your relationship to your current doctor is, and that's something you will have to judge.

    If you have an otherwise good relationship with him, and don't want to burn a bridge with him you should first start by describing the amount of pain and incapacity you are having in detail, and make specificc requests. Both my medical and nuclear oncologist ask me what pain pill I wanted prescribed, were very liberal in the number they alloted me, and made it plain if that was inadequate they could increase dose and/or change meds. They ask me each visit if I need refills.

    If it is your sense that your doctor is simply not going to play ball with you on this, you might requests referral to a pain specialist. A pain specialist would look at ORN complications, then look at you taking tylenol, and conclude your pain management was inadequate.

    As a last resort you could simply start over and see another treatment physician. That might work, but it might not as well. Patients who self refer to a similar specialist for pain control alone are generally viewed as drug seekers, so this may produce neutral or negative results.

    If it were me, I'd try to work this out with my current doctor first, unless he'd given me other reasons to want to change.

    Best wishes,

    pat

    Pain and Treatment
    It's hard to believe your doctor would not treat your pain correctly. My RT Oncologist said he would give me whatever I need to get through the painful part of radiation. But my PCP said to go to a Pain Clinic and they would manage it. My Oncologist said either way is fine with him. I meet with the Pain Clinic tomorrow. See if you can get a referral to one from your doctor. Some physicians are really afraid of patients getting hooked on the opiate medicine and opt not to prescribe.

    Get proactive and you should be able to get decent relief.

    Good Luck,

    Tommy
  • Ingrid K
    Ingrid K Member Posts: 813

    Pain and Treatment
    It's hard to believe your doctor would not treat your pain correctly. My RT Oncologist said he would give me whatever I need to get through the painful part of radiation. But my PCP said to go to a Pain Clinic and they would manage it. My Oncologist said either way is fine with him. I meet with the Pain Clinic tomorrow. See if you can get a referral to one from your doctor. Some physicians are really afraid of patients getting hooked on the opiate medicine and opt not to prescribe.

    Get proactive and you should be able to get decent relief.

    Good Luck,

    Tommy

    pain management
    telling you to take Tylenol for jaw pain is just plain crazy. You need to find a new doc or like others have said, get yourself to a pain specialist. You are not going to heal if you are in pain. AND you will not get hooked on the opiates if they are taken for real pain. I feel bad for you because you should not be suffering with pain after what you have already been through. I hope you can get some help. If you can't swallow the pain pills, ask for liquids.
  • robinleigh
    robinleigh Member Posts: 297
    Oh wow
    Tylenol? That's a joke for the degree of pain you are experiencing. Every doctor we have encountered has been more than willing to prescribe medicine to address pain issues. My husband was prescribed the fentanyl patch and liquid roxicet for breakthrough pain. It is quite appropriate in this situation. You certainly need more than Tylenol. Hope you get prescriptions very soon and get your pain under control. No need to suffer like that!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Oh wow
    Tylenol? That's a joke for the degree of pain you are experiencing. Every doctor we have encountered has been more than willing to prescribe medicine to address pain issues. My husband was prescribed the fentanyl patch and liquid roxicet for breakthrough pain. It is quite appropriate in this situation. You certainly need more than Tylenol. Hope you get prescriptions very soon and get your pain under control. No need to suffer like that!

    Roxanol..
    Yup, I agree, I had the Roxanol, liquid Morphine but couldn't tolerate it and it did nothing for my pain.... ground up and dissolved percocets, oxy or hydorcodon worked for me...or the liquid form of those.

    One thing that I really appreciated...

    My Chemo MD always told me, "Anything you have as for pain or symptoms with let me know, I have something for it...." and she always did.

    Best,
    John
  • brutusftw
    brutusftw Member Posts: 2
    Skiffin16 said:

    Roxanol..
    Yup, I agree, I had the Roxanol, liquid Morphine but couldn't tolerate it and it did nothing for my pain.... ground up and dissolved percocets, oxy or hydorcodon worked for me...or the liquid form of those.

    One thing that I really appreciated...

    My Chemo MD always told me, "Anything you have as for pain or symptoms with let me know, I have something for it...." and she always did.

    Best,
    John

    a step in the right direction
    thank you everyone for your comments and advice. I seen my doctor and got a presciption for oxycodone, its helping some and I was able to eat a decent meal and finally got some sleep (13 hours straight!) I will have to find a new doctor as my curent one is moving away so I am hopful this wont effect my future treatment negatively. Its been a long road but is looking a bit better for now. Thanks again to all of you your help is greatly appreciated. sincerly,
    Tony
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    brutusftw said:

    a step in the right direction
    thank you everyone for your comments and advice. I seen my doctor and got a presciption for oxycodone, its helping some and I was able to eat a decent meal and finally got some sleep (13 hours straight!) I will have to find a new doctor as my curent one is moving away so I am hopful this wont effect my future treatment negatively. Its been a long road but is looking a bit better for now. Thanks again to all of you your help is greatly appreciated. sincerly,
    Tony

    Titration of pain meds
    So oxy comes in several different doses. If you are getting ADEQUATE pain relief at your current dose that's great. If not, you need to follow up right away for adjustment of dosage or represcription. BTW, watch out for constipation on these drugs. To me, that was sometimes more painful than the underlying condition:)