Ear and jaw pain NORMAL?

rsp

My husband is 2 months post radiation for a tumor on his tongue, and has started getting a clogged ear and a lot of pain in his jaw (on the side of his radiation) from his ear down along his jaw. Has anyone experienced this?  I don't know if I should make him an appointment to see the dr.

 I feel like the time between being done with treatment and the 3 months until your PET scan you are on an island with no help or support from the doctors.  THANK GOODNESS I found this site!   

zaac23

jaw pain

call the docs office and tell them symtoms and let them decide

AnotherSurvivor

Yes, you are left largely to

Yes, you are left largely to yourself to work out recovery.  I've raised that with different med types including my doctor son, and the answer is that is medicine in this country.  It is empirically focused to the point of being mechanical.  Good news is they deliver that with incredible precision, bad news is humanistic perspective is not a priority.  A lot of it is cost, but some of it can be mitigated, it depends on your provider.   I'm with Kaiser-Colorado and their cancer team is emphatically working on addressing that.  I got what I feel was very good treatment with some handholding.  I'm coming out of my treatment an HMO zealot.  But, there are still many issues they don't help with, perhaps can't, like the return of taste, dry mouth, etc., and so I ended up here, looking for answers.   My oncols know cancer, my paliatives know withdrawal and pain management, have social workers for depression.  When I will feel like eating whole food again is not in their writ.

I second the recommendation you take it up with your doc.  My suspicion is that it is the scar tissue in his throat drying and tightening as he heals.  Radiation continues to actively work killing things for up to a couple of months after last treatment.  What it does during that time is in the realm of the oncols, tho if it is the scar tissue he will probably be referred to a Speech and Swallow Therapist for stretching and massage technique training.  I see mine every two weeks, and I can tell if I have been lazy and haven't done my exercises because things get tight.  I got very lucky with mine, she is a 20 year cancer nurse, who saw the head and neck market exploding and went on to specialize.  I get to ask her things like 'why does it seem like recovery is left to the individual'.

candyshapiro

AnotherSurvivor said:

Yes, you are left largely to

Yes, you are left largely to yourself to work out recovery.  I've raised that with different med types including my doctor son, and the answer is that is medicine in this country.  It is empirically focused to the point of being mechanical.  Good news is they deliver that with incredible precision, bad news is humanistic perspective is not a priority.  A lot of it is cost, but some of it can be mitigated, it depends on your provider.   I'm with Kaiser-Colorado and their cancer team is emphatically working on addressing that.  I got what I feel was very good treatment with some handholding.  I'm coming out of my treatment an HMO zealot.  But, there are still many issues they don't help with, perhaps can't, like the return of taste, dry mouth, etc., and so I ended up here, looking for answers.   My oncols know cancer, my paliatives know withdrawal and pain management, have social workers for depression.  When I will feel like eating whole food again is not in their writ.

I second the recommendation you take it up with your doc.  My suspicion is that it is the scar tissue in his throat drying and tightening as he heals.  Radiation continues to actively work killing things for up to a couple of months after last treatment.  What it does during that time is in the realm of the oncols, tho if it is the scar tissue he will probably be referred to a Speech and Swallow Therapist for stretching and massage technique training.  I see mine every two weeks, and I can tell if I have been lazy and haven't done my exercises because things get tight.  I got very lucky with mine, she is a 20 year cancer nurse, who saw the head and neck market exploding and went on to specialize.  I get to ask her things like 'why does it seem like recovery is left to the individual'.

I so agree on what is left to

I so agree on what is left to the patient to discover. Very frustrating. I have a question. I am 8 days out of surgery and home and yesterday I started with some bleeding for the first time. They said when I left the hospital there might be some bleeding if it is major go right to the hospital. ANswer to me you will know. Really? Not really. So now I eagerly await morning to call in and I want to be seen. I think that all patients should receive a what to expect, frequently asked questions, recommendations etc. I was lucky enough a week before I went to Boston and a friend is in charge of the after care with swallowing etc. I had a texting dialogue going and what a blessing. This is late and can't reach at this hour. 

rsp

candyshapiro said:

I so agree on what is left to

I so agree on what is left to the patient to discover. Very frustrating. I have a question. I am 8 days out of surgery and home and yesterday I started with some bleeding for the first time. They said when I left the hospital there might be some bleeding if it is major go right to the hospital. ANswer to me you will know. Really? Not really. So now I eagerly await morning to call in and I want to be seen. I think that all patients should receive a what to expect, frequently asked questions, recommendations etc. I was lucky enough a week before I went to Boston and a friend is in charge of the after care with swallowing etc. I had a texting dialogue going and what a blessing. This is late and can't reach at this hour. 

bleeding

I can't imagine how frustrated you must be (and afraid) waking up to some bleeding in the middle of the night.  I hope you did get to see the dr. even if it is "not enough" blood, it will ease your mind. 

I am going through something similar with my husband, but instead of blood, he is very nauseous and keeps throwing up.  I just got done sending a lengthy email to his doctor (who I don't think EVER reads the emails and they are left to the nurse to respond) begging for help... 

Please keep us posted as to how things work out for you.

We will get through this with the help of each other.  Again, I am so thankful for this site!