My pain meds and pain ?

Dav1965
Dav1965 Member Posts: 132
in Head and Neck Cancer #1
I take 2 30 mgs of Morphine 2 times a day and up to 6 hydrocodones 10 mgs for pain. All that does is make it almost bearable. My jaw is trashed from radiation. I have a cyst in my jaw bone now and bone deteriation in my jaw. Im only 46 and as time goes by i keep hurting worse. Along with that it seems all my bones are hurting now. Any ideas whats happening?

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Of course, the obvious best guess is osteoradionecrosis
    It is surprising you are being given all these pain meds without your treatment team having a firm diagnosis and treatment plan. I'm not criticizing you for this. If you haven't had a definitive visit to the right specialist to properly evaluate you and make firm recommendations, you need to do so asap.

    At least in my case, that would simply be a return visit to my ENT oncologist, who is a definitive expert in this area. ORN is a fairly common complication after radiation of the mandible, and you need help with this, or the future looks painful.


    Best to you.

    pat
  • Dav1965
    Dav1965 Member Posts: 132
    #3
    longtermsurvivor said:

    Of course, the obvious best guess is osteoradionecrosis
    It is surprising you are being given all these pain meds without your treatment team having a firm diagnosis and treatment plan. I'm not criticizing you for this. If you haven't had a definitive visit to the right specialist to properly evaluate you and make firm recommendations, you need to do so asap.

    At least in my case, that would simply be a return visit to my ENT oncologist, who is a definitive expert in this area. ORN is a fairly common complication after radiation of the mandible, and you need help with this, or the future looks painful.


    Best to you.

    pat

    Pain
    I have a great ENT doctor. I had stage 4 cancer and 95 % of my tongue removed. Along with 38 lymnphnodes that had cancer. They made a tongue out of my thigh. Later they operated and made my tongue smaller. 6 months later they were going to operate again but i got a real bad earache that would almost make me cry. After going to the ENT he did a cat scan or mri and found how bad of shape my jaw is in. I cant have any more surgeries to fix my tongue and help me swallow. He said that he will do more damage than good if he operates.

    I saw a arthritis doctor and that is what he gave me for pain. Both doctors said its going to do nothing but get worse.
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #4
    Dav1965 said:

    Pain
    I have a great ENT doctor. I had stage 4 cancer and 95 % of my tongue removed. Along with 38 lymnphnodes that had cancer. They made a tongue out of my thigh. Later they operated and made my tongue smaller. 6 months later they were going to operate again but i got a real bad earache that would almost make me cry. After going to the ENT he did a cat scan or mri and found how bad of shape my jaw is in. I cant have any more surgeries to fix my tongue and help me swallow. He said that he will do more damage than good if he operates.

    I saw a arthritis doctor and that is what he gave me for pain. Both doctors said its going to do nothing but get worse.

    Sounds like you need a
    Sounds like you need a referral to pain management. I've found that morphine makes some types of pain worst; same with the fent patch. I suffer back pain; nerves; muscle spasms; even the bone hurts. So far; oxycontin with brand percocet was the best. I was recently switched from percocet to oxycondone with no tylenol; so I take a few tylenol with it. You should try brand name; see if that makes a difference. If not; there is a pop called actiq that may work better; if you're able to put the pop in your mouth.

    There is also a new dilaudid type med that is longer acting.
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #5
    Daddisgrl said:

    Sounds like you need a
    Sounds like you need a referral to pain management. I've found that morphine makes some types of pain worst; same with the fent patch. I suffer back pain; nerves; muscle spasms; even the bone hurts. So far; oxycontin with brand percocet was the best. I was recently switched from percocet to oxycondone with no tylenol; so I take a few tylenol with it. You should try brand name; see if that makes a difference. If not; there is a pop called actiq that may work better; if you're able to put the pop in your mouth.

    There is also a new dilaudid type med that is longer acting.

    Pain and Treatment
    I was recently referred to a Pain Clinic to handle my pain during radiation and the nerve pain I have with my neck dissection.

    Couldn't believe what the pain Dr. said about radiation therapy. He said there is no need for narcotic pain relievers because there is very little pain from RT. I say what??

    So hopefully you'll find one that is more caring than mine. I'll just have my Onc handle it for me. He already offered and I declined because I knew I was seeing this new pain doctor. Nevermind, my RT Onc can take good care of me.

    Just keep trying until you find the right doctor who will treat you properly.

    Tommy
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    tommyodavey said:

    Pain and Treatment
    I was recently referred to a Pain Clinic to handle my pain during radiation and the nerve pain I have with my neck dissection.

    Couldn't believe what the pain Dr. said about radiation therapy. He said there is no need for narcotic pain relievers because there is very little pain from RT. I say what??

    So hopefully you'll find one that is more caring than mine. I'll just have my Onc handle it for me. He already offered and I declined because I knew I was seeing this new pain doctor. Nevermind, my RT Onc can take good care of me.

    Just keep trying until you find the right doctor who will treat you properly.

    Tommy

    Yes, but
    I agree with what you just said, but if you've seen doctors that are expert at this type of problem, then what is your diagnosis? It isn't enough to be given a diagnosis in terms of the complaint. It needs to be "this pain is caused by xxxxxxx" That's the only way to get to definitive treatment for whatever the underlying problem is.

    I'm not trying to bug you, but at the same time I promise you you aren't haven't this much trouble from an arthritic jaw. No way. The timing of your jaw problem, and the degree of pain indicates ORN until proven otherwise. AT least 10% of us get that after radiation to the jaw.

    Does your ENT doctor see and treat ORN??? If he is an ENT oncologist, he does. If not, he may actually not have much experience with it. Has there been any discussion of hyperbaric oxygen therapy? Maybe I'm missing something here, or maybe I'm just having a bad brain day, but lacking a diagnosis, you seem stuck in a problem you aren't going to get out of.

    Pat
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #7
    longtermsurvivor said:

    Yes, but
    I agree with what you just said, but if you've seen doctors that are expert at this type of problem, then what is your diagnosis? It isn't enough to be given a diagnosis in terms of the complaint. It needs to be "this pain is caused by xxxxxxx" That's the only way to get to definitive treatment for whatever the underlying problem is.

    I'm not trying to bug you, but at the same time I promise you you aren't haven't this much trouble from an arthritic jaw. No way. The timing of your jaw problem, and the degree of pain indicates ORN until proven otherwise. AT least 10% of us get that after radiation to the jaw.

    Does your ENT doctor see and treat ORN??? If he is an ENT oncologist, he does. If not, he may actually not have much experience with it. Has there been any discussion of hyperbaric oxygen therapy? Maybe I'm missing something here, or maybe I'm just having a bad brain day, but lacking a diagnosis, you seem stuck in a problem you aren't going to get out of.

    Pat

    Dav1965
    Pat is likely right about this- your Drs should know exactly what's what, and have a plan on dealing with it, and your pain. Not sure where you are, but you might need to visit another C med center- get thee to the nearest top-grade C center you can. I was treated in a metro area of around 325,000 people, but my Drs still made a couple errors; and, if the C returns- I am going to the U of Iowa to have the ENT and Oncos there form the plan to attack it. Sounds to me like you are already on quite a bit of pain meds, so the next option may be something radical to take care of the pain, if it is unbearable. Odds are you will not like that radical, though, so your best option just might be to just keep hitting the Drs up about the level of pain you are still experiencing- and seek a recognized Specialist's opinion on what other avenue you might take in dealing with your jaw problem.

    Hope and Pray things get better for you.

    kcass

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