Ear problems after neck dissection

Hi KitiKat

I am so so sorry you are in this fix. I well remember the long conversation about sentinel node biopsy you had four months ago.....

Don't despair.

It all must feel overwhelming but surgery was only a short while ago and with time and some proper physiotherapy there should be a lot of improvement. You need to get that physio going. From what I've read of others' experiences it helps tremendously though it can be hard work.

Your scar will fade. Nothing to do with my cancer but I have a surgical wound that is healing and  will scar so I am using medical grade silicone cream to mitigate damage. Bio oil is supposed to be good too. Do ask if you can massage either of these in.

Meanwhile maybe get the grommet in to give you some relief while the situation resolves itself

All the best

Hi kitiKat

very early days yet with regards to your scar as Dani says, be assured the scar will definitely fade.  I used Bio-Oil, very gently after a month from my dissection, I would say probably within the year you really had to look extremely closely to see anything.  I still use by the way every night ‘cause it feels nice on my skin!  As regards your ear, sorry to hear about your problem - my ear now, after coming up two years from jaw surgery and neck dissection, just feels odd most of the time, sometimes I can touch it without a problem, but there are days were it still feels quite tender and even sore, but I put this down to nerve damage.  Do hope things improve for you soon.

June

Hi KitKat

I had a large scar from my neck dissection, I rubbed bio oil into mine. I’m in my third year since operation, and it’s hardly visible now 

Hi KitKat

I had the same issue with fluid in my ear as a result of one of my surgeries  and I was totally deaf in the ear on the side where I had the surgery. I discussed with my consultant and he put a grommet in that ear and as a result the fluid drained and I got full hearing back in my ear. The grommet stayed in place for a year and then my consultant took it out in his surgery with no issues. It has been fine since then so go ahead and get the grommet put in.

Sorry you are feel you weren't given the most appropriate treatment. However we have to be guided by our medical team. They are very experienced and normally meet with a group of their peers to discuss treatment options before proceeding. This means that it is the opinion of the group rather than the individual about the best course to take.

Initially after my first cancer op I was rather surprised about the amount of my jaw that was removed as I thought in my head that it would just be a small amount. I had not taken in what my consultant told me properly. However he re-explained that they had to get clear margins to make sure that the cancer had been removed completely or as near to that as possible and that makes a lot of sense.

I had a neck dissection also even though there was no spread to the lymph nodes. This was done as a precaution to reduce the risk of a spread later. I think anything that reduces the risk of a spread is worth doing   I now only have a very thin scar that is hardly noticeable.

It takes a while to adjust to a change in appearance but it is early days and  I am sure over time the scar on your neck will reduce quite a lot and probably like mine will  be hardly noticeable. You are still the same person you were before the op and you will draw on your inner resources to get through this. It is amazing how time helps with any adjustments we have to make. Holding onto resentment towards your medical team is not helpful psychologically and will slow your recovery. Dwelling is very counterproductive. It is something that has happened and cannot be changed. It is time to be proactive and go to that physiotherapist and do whatever you need to do to mentally and physically improve things. Take back control of your life. Get involved in something that makes you feel more positive about things. I joined an over 50's exercise group to try and improve my fitness after one of my ops. I wore a mask the whole time I was going as I was waiting for reconstructive surgery on my upper jaw but thought that I can't just suspend my life and put it on hold while waiting for surgery, What can I do to make the waiting time more productive.

If you are finding it hard to move on seek some counseling support through Macmillan as I am sure that it will really help.

Wishing you all the best and sending hugs.

Lyn

Thanks Dani for your reply. You've always been very supportive and helpful to me from the start, just as you are with others. When you say physio, what sort do you mean? I've been using Kelcote silicone cream on my scar and started using bio oil. To be honest  I'm more distressed about how the skin under my jaw looks with the sagging on one side and indentation in the other. I also have a sort of pouch under my chin. I hate the way it looks so much and my confidence is shattered. I just don't find any joy in life and getting any sort of help from the hospital is incredibly difficult as they just dont want to know.. 

Hi again. You might have to find some private physiotherapy. You likely need a tailored exercise regime 

It sounds like you have some lymphodema too.

I’ll ring around a few contacts and see if there might be a late effects clinic near you. Meanwhile contact the hospital to see if they know of a physiotherapist familiar with this. 
I’ll get back to you. 

 KitiKat 

Ive been assured that any physio who understands fibrosis will be able to help so it’s a question of emailing round some local ones and asking your GP if they have somebody. Your hospital should have a lymphodema clinic. Let me know if you get nowhere. Xx

Hi KitiKat,

I'm sorry to hear the impact this has had on you. The decisions on what to recommend a patient must be very difficult to make. My father in law had exactly the opposite as you: partial glossectomy, enough margins, no further action recommended. Five months later they found a lump on his neck through an ultrasound. He went through partial neck dissection in December and started radiotherapy today. In some way I wish he would've been recommended what you were.

I am very glad they didn't find spread to the nodes in your neck, and I hope that in time, you will be give solution to your ear issues.

3 years on from the Full Monty of treatment - (at my own request) -  and you’d have to look very closely to spot my dissection scar now, which I massage every day still with various creams, including the beautifully fragrant BioOil.  I do neck exercises every day too, as my neck gets stiff if I don’t, and the jelly bag under my chin has all but disappeared with the lymphodema massage exercises that the hospital (and Dani) showed me. OK, my neck is not as youthful looking as it once was but hell, I’m  67 next week so am not much bothered. I will be honest and say it doesn’t look quite as it did BC, but given the battering it’s had from chemoradiation and surgery it’s not half bad and is much better than I hoped. Good luck, and please be patient and do your exercises 

Thanks June. I've started using bio oil and have been using silicone since I had my stitches out.