Ear pain months after treatment

rsp

My husband is 10 weeks out of his 35 radiation/5 cicplatan treatments, and his ear (same side as base tongue tumor)has been KILLING him for the last 3 weeks. He said the pain is in his ear and radiates down his jaw.  We had a Dr's appt. today where they looked in his ear and found nothing... He is scheduled to get a CT scan of his ear next week to investigate further. They said maybe the pain is actually happening somewhere other than his ear, but to him it feels like it is his ear.

Just wondering if anyone else experienced this pain 2+ months after treatment?  I am very nervous that there is something more serious going on than an ear ache... Someone suggested maybe he has an absess in his mouth?? He doesn't have any tooth pain, so I don't know if an absess is still possible.  

I am going to be on pins and needles until the CT scan next Thursday...

Also, he has been getting nauseated over the last few weeks and throws up almost every day... He does not have a peg tube and has already lost 75 pounds.  He takes Zofran 3X a day for nausea, but it doesn't seem to be helping.  The dr's and nutritionist were at a loss as to why he was getting nauseated since he is taking the Zofran.  They did not send him for fluids (I thought he was dehydrated) and they did not suggest a peg at this time.  Maybe they are waiting for the results of the ear CT scan next week?  He can not afford to lose any more weight... he is 6'1 and is down to 180 pounds.  He is surviving on milkshakes (it takes him all day to get one down).  I purchased high cal Boost and Benecal thanks to suggestions from wonderful people on this site. 

Thanks!

chas688

I had it too

I am 4 months + out of treatment and I experienced exactly the same issues. Not only in my ear, but also radiating up my neck and into my scalp. The pain was severe enough that I had to bring out the pain meds I had used right out of treatment. I called in about this problem and my team was at a loss as well. The good thing is that after a couple or three days it went away on its own. It has come back, but not for as long and not as pronounced. 

I came to the conclusion that it had to do with whatever damage had been caused by the radiation to my nerves in the neck. But I think it was due to swelling or such as it went away.

What I'm dealing with now, more strange than a problem at this point, is when I go walking for more than 1/4 mile, I feel a strange tingling sensation down my spine and legs as I bend my head down. I called in on this and they said it was Lhermitte's sign. In case he develops anything like this as well, you'll know about it:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902147/

The thing is, that amount of radiation that we've had is going to cause some strange issues as things heal. I've experienced it and some issues I've had, they're at a loss to explain. 

Nausea is common, especially in the mornings. I went through the same thing 2 months out. This will get better as well. I went from 210 to 173 (where I am now) during the whole ordeal. I did have a PEG tube, it was taken out on my first post-visit. Chances are you're close to being over the hump, so hopefully the nausea will dissipate for you soon and you can start to eat. Tru-moo in Kroger chocolate milk that has 25gm protein / small bottle. Those have helped as I got sick of ensure.

Good luck and hang in there! It will get better.

Chas

phrannie51

I had ear pain and still do...

I think sometimes the rads constrict tissue around the eustachian tube and the nerves, causing ear pain. I've also heard of some folks where the rads hardened the ear wax to the point that only a wash can get it out. This can be very painful. praying the scan will be clear. 

P

rsp

chas688 said:

I had it too

I am 4 months + out of treatment and I experienced exactly the same issues. Not only in my ear, but also radiating up my neck and into my scalp. The pain was severe enough that I had to bring out the pain meds I had used right out of treatment. I called in about this problem and my team was at a loss as well. The good thing is that after a couple or three days it went away on its own. It has come back, but not for as long and not as pronounced. 

I came to the conclusion that it had to do with whatever damage had been caused by the radiation to my nerves in the neck. But I think it was due to swelling or such as it went away.

What I'm dealing with now, more strange than a problem at this point, is when I go walking for more than 1/4 mile, I feel a strange tingling sensation down my spine and legs as I bend my head down. I called in on this and they said it was Lhermitte's sign. In case he develops anything like this as well, you'll know about it:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902147/

The thing is, that amount of radiation that we've had is going to cause some strange issues as things heal. I've experienced it and some issues I've had, they're at a loss to explain. 

Nausea is common, especially in the mornings. I went through the same thing 2 months out. This will get better as well. I went from 210 to 173 (where I am now) during the whole ordeal. I did have a PEG tube, it was taken out on my first post-visit. Chances are you're close to being over the hump, so hopefully the nausea will dissipate for you soon and you can start to eat. Tru-moo in Kroger chocolate milk that has 25gm protein / small bottle. Those have helped as I got sick of ensure.

Good luck and hang in there! It will get better.

Chas

Good to know

Thank you for sharing!  I really appreciate it.  We go for a CT scan on Thursday and see the ENT on Friday.  So, I will let you know what they say.

Good luck to you!

rsp

phrannie51 said:

I had ear pain and still do...

I think sometimes the rads constrict tissue around the eustachian tube and the nerves, causing ear pain. I've also heard of some folks where the rads hardened the ear wax to the point that only a wash can get it out. This can be very painful. praying the scan will be clear. 

P

Ear pain

THank you for your comments.  My daughter is in her last year of grad. school to become an audiologist, and she also said the it could be the eustachian tube.  We go for a CT scan on Thursday and see the ENT on Friday.  I will keep you posted. I appreciate your sharing.  Good luck to you!

rsp

Ear pain update!

My husband had a CT scan yesterday for terrible ear pain on the side of his radiation treatments.  WONDERFUL NEWS!  We got a call today saying the CT scan was clear, and there was no cancer that spread to that area!  

So, why the ear pain?  We saw an ENT today, and phrannie51, you were right!  The pain is coming from my husband's Eustachian tube!  He was given a nose spray and told if the pain did not go away, then he would have to get an ear tube.  The dr. said to give it two months, but my husband said he could never take the pain for two months.  He said he will give the spray a week.  If there is no inprovement, he will be calling the ENT for that ear tube!

He is still nauseated and throws up every few days.  His throat and tongue are still very painful, and he is only eating milkshakes, Boost, and pudding.  We have a way to go, but can't help but smile after finding out the cancer did not spread to his ear!!!  

It's the little things!

watchtower

https://csn.cancer.org/discussion/comment/1573091#Comment_1573091

Thank you so much for the positive posts you shared perhaps my guy is going to be needing the tube as well. He is in his 2nd round of scans post treatment of about 5 month and they sare clear as well. Thank you for yr encouragement

motorcycleguy

I remember the Lhermitte's Reaction. Every time I put my head down, it would feel like a mild, electric shock in my legs.

I was worried that it might be permanent nerve damage - but it went away as suddenly as it came on!