Head aches, neck pain and ears ringing resulting from chemo and radiation.

Hi MOJOK9

I don't have much of an answer for you unfortunately but I'm replying so that your post gets bumped back up to the top of the list.  I missed it myself when I logged in yesterday so I expect others may have too.

All I've experienced myself is neck stiffness following a neck dissection.  I control this with regular exercises and not letting the neck get too cold.  I have heard of others suffering with ringing in the ears, which I believe can be a side effect of some chemo drugs.  So hopefully someone else will come along later and be able to help you more.

Best wishes xx

Hi MOJOK9, im much the same as Margaret and only had neck and upper arm pain but with excercise it gradually went , I believe a couple of people on here have had ringing in the ear due to the treatment but not sure what relief they have got for it so hopefully they will see this post . Have you spoke to your consultant about this as they should offer something for to give you a better quality of life. Wishing you all the best , take care .

                                                                                  Chris .

Hi MOJOK9. I’m shocked that your symptoms post chemoradio caused you to retire from your job. That seems tragic. I have some neck pain and tinnitus, but I guess nowhere as severe as yours. It is 21 months since I completed the same as you - high dose cisplatin and radio for tonsil & lymph node disease. I went back to work a year ago.

If the ringing in the ears you have is tinnitus, I’m sure you know it is as a result of the cisplatin chemo. Mine was terrible to start with and got worse when I got stressed, about 12 week scan time. I asked to be referred to a Hearing therapist - they usually work in an Audiology dept. She was really helpful - I kind of knew there was no “cure” for the sounds in my ears, but what she told me helped me to live with it. She offered a device I could use at night to mask the noise if it was interfering with sleep and a few other things. But since I saw her, the tinnitus is so much better - but I needed to hear what she had to say. It s a bizarre condition, but you can be helped - I would ask your GP or ENT cons for a referral to a Hearing or Audiology therapist. Because I also had hearing loss she recommended I try hearing aids (ENT had said nothing about this) and they also help to lessen the tinnitus.

As far as neck pain goes - mine started about 6 months after treatment and got gradually worse - painful on turning my head etc. I was referred for phytsio to a specialist in Head & neck physio. Really helpful. Much improved after about 6 months of some treatment and a lot of exercises. It hasn’t completely gone but is better. So again - this is very likely to be as a result of radiotherapy to your neck - so ask for a referral to a neck physio. We do have to live with a lot of side-effects after treatment and I feel the ENT teams are not very interested in asking or even knowing what we live with. But do explain your symptoms and ask for assistance in the way of referral. If ENT aren’t helpful go to GP.

I wish you well

Hilary

Hi MOJOK9, 

I’m a year post treatment now and I still have those symptoms amongst many others which have prevented me from being fit enough to return to work. I still feel pretty dreadful and fatigued but my stiff neck has worsened the past few weeks which adds to making any activities more difficult. I was incredibly fit and vibrant before this treatment. 

I’m telling my story to try and reassure you as we all respond so differently to the same treatment and there is no timescale for recovery. My GP said recovery is unpredictable and indeterminate however things should improve. So I’ll keep pushing forward but not compare my recovery to others (I know this is difficult) I’m nowhere near where I hoped to be by now. 

I think tinnitus is something you may have to get used too unless you opt for hearing aids. 

As for the stiff neck I believe daily exercises can help improve mobility and fibrosis. We’re you given any from a physio? 

There definitely isn’t a ‘one size fits all’ in our recoveries. All we can do is support one another. 

Best wishes 

Hi

I'm two years post treatment for throat cancer and about three months ago started experiencing really horrendous headaches.
Fearing the worst ie brain cancer and the like I went to my GP
She sent me for a ct scan which was clear, she diagnosed that it was due to the fibrosis causing tension headaches.
My neck was always a bit stiff so I went to the physiotherapist who has been manipulating my neck.

It seems to be working as my headaches are less severe.

Not helping matters for me is the fact that my Radio oncologist has cancelled all appointments because of the Corona virus and I was due to see him in a couple of weeks.

I would try to locate a Physiotherapist with experience in fibrosis induced problems.

Good luck

Paul

Hi Paul

its good that you are getting some relief with physio. I might suggest acupuncture as well though it’s unlikely that you will find a practitioner to help you at the present time. It’s nevertheless worth looking into for the future. I’m getting treatment for xerostomia and that has been put aside for now. 
Good luck fir your recovery.