5 months post neck dissection and suffering

Hi Hayley.  I see nobody has responded so I will try to give you some answers based on my experience.

Movement in neck/shoulder.  I have had 2 dissections for my cancer and yes the movement of your shoulder, arm and neck can be difficult after a dissection.  One of the main nerves, the Accessory nerve, is often damaged to a greater or lesser extent during the surgery and that can take around 2 years to heal very gradually.  It is 6 years since my last dissection and I still have a stiff neck.  You learn to manage these things and try to ensure there is a minimal impact on your life.  In my case the side effects no longer worry me to any great extent.

Fatigue.  This can be an ongoing issue but it should generally improve over time.  Most fatigue is associated with radiotherapy and lasts 6 to 9 months.  I was told by my Dr friends that post surgery you should allow at least one month for every hour you have been under for the body to heal.  You have had 2 major operations so I would imagine you are still in that long term healing phase.

The pressure around you neck could be from scarring or it may be lymphoedema - a build up of fluid as a result of the surgery blocking the normal drainage channels in the head and neck. You could speak to your team about it as being lymphoedema or have a look at my profile for some self massage techniques that helped me.

Deafness.  They may have moved some of the nerves associated with hearing and that may be causing it.  Again this may be temporary like your shoulder.  So much runs through the neck where we have dissections almost anything can happen.

Hearing your heartbeat.  This sounds like a form of tinnitus that I have.  Basically it is called something like pulsating tinnitus (but with a clinical name!).  I think mine was probably caused by the radiotherapy and may have been in existence before treatment, but exacerbated by the RT.  The did a CT to check mine out to make sure there was nothing serious going on - I was OK and I believe it is caused by a blood vessel moving closer to the ear and hence the sound.

Scans etc.  After my surgeries I did have scans, but I have a very unusual presentation of this cancer. I was on what they call watchful waiting for a few years before I ended up taking CRT having had 8 prior surgeries.  During the watchful waiting period I did not have routine scans (MRI/CT) instead it was nasal scoping and a good feel of my neck.  It was those that detected the cancer and on one occasion (you may need to look at my profile to understand) a positively biopsied tumor was too small to show in the scans...

Whatever you do, you must keep your clinical team in the loop as to how you are feeling and if need be become politely forceful in seeking answers.

I think much of what you are feeling including the sinking is par for the course.  Surgery or CRT are both very traumatic and you need time to heal both physically and mentally.

Stay with us as you continue your journey.

Thank you so much for taking the time to reply to me and sharing your experience. My cancer didn’t show in scans either which is why I was concerned when they said they will scan regularly to detect any reoccurrence. It’s pretty scary and something I am struggling to come to terms with. 

I am thinking maybe lymphodema, does it go away with time or once you have it you have it for life?

with the heartbeat in the ear, was there anything offered to help with that? 

thank you once again for all of your wisdom.

-Hayley

Hi Hayley

Lymphoedema can go away with time.  However to get there you normally need to self massage the fluid in order to start new drainage flows.  I think I was massaging for around 6 months on a regular basis.  I now do it subconsciously very occasionally.

I have had 2 "re-appearances" of my cancer.  Both times the routine visual and physical checks picked it up early so from experience I have put a lot of faith in them.  The first time I knew nothing of the tumour.  The second I thought it was tightening scar tissue from the dissections.  The doctors are the experts in finding these things, but you do need to keep on top of them and "own" your healthcare.

I also massage moisturising cream into my neck morning and night and feel for any changes.

I have not sought anything for the tinnitus as it does not really worry me.  It is "louder" at night but I can still sleep.  My main concern was getting it checked to see if there was any serious damage to the blood vessels from the treatment - there was not.  For the ringing tinnitus I believe they can sometimes use hearing aids to minimise the issue.  They tested my hearing and I don't need aids at the moment

Hi Haley, I’m sorry to hear that you’re in this position although everything you’ve mentioned is the same as I’ve had. I had 2 tongue ops for tongue cancer and neck dissection with 2 lymph glands cancerous. I’m now 1 year 8 months since radiotherapy and have only just started eating more and not relying on Fresubin that has been a godsend. I used my rig for over a year as eating has been difficult and still have a lisp although friends say that it’s not noticeable. The worst for me is at night (it’s 4.30 now!) when I wake up many times with no saliva. You should check your blood pressure as since RT I have low blood pressure that causes dizziness after food when the pressure drops. You’re not alone as these symptoms are the norm. Take care and I wish you well. Sue x