Post op help

Hello

I had a neck dissection and the swelling was due to surgery which they have said may take a year or so to get back to a "norm". I also have lymphodoema due to radiotherapy, but I am managing to massage that down myself. I am 5 months post treatment and although I was concerned about swelling and lack of neck movement due to the surgery, the Physio and the lymph clinic were both telling me it was early days when I was starting to wonder if it would ever get any better at 2 months post treatment. I am trying to think back but, I seem to remember that everyone was reluctant to do anything much for a couple of months until the skin had healed from surgery and RT. I asked about acupuncture for swelling and again, they said nothing would be considered until I was 6 months post (that's obviously on hold for now). And any exercises from the physio were very very gentle to start.

I had a radical neck dissection (ear to neck and across to middle of throat) with lymph nodes removed but for a cancer around my tonsil area they think, so I am sorry I can't help with tongue questions. Please do phone your team and ask for help, the same with speech and diet. They are a wealth of support and info.

I do remember thinking I wasn't going anywhere fast because after treatment, the whirlwind it scoops you up into, is suddenly gone and the world seems to be on a go slow. It does get better, just that it takes time.

Tricia (I hope something in my rambling post is of help)

Hi cyberkat 

You need to heal properly before you do anything for your neck but there are exercises that will help. 
You will have some lymphedema due to the surgery as the normal flow of lymph has been disrupted.
Whst sort of surgery did you have to your tongue?  

I had half my tongue removed and a section taken from my right leg sewn on to it . They took lymph nodes out even though my scan showed nothing as a precaution .im only four week on Wednesday post surgery and only spent 10 days in hospital cos they wanted everyone home with this virus understandably . Thanks for reply just so much to get my head round and when it’s all over the telephone it’s easily forgotten too.

O poor you. There is a lady who posted here who had something similar. She had links to a video she made. I’ll try to find it

Chris might know. 

Thanks for reply and yes maybe it’s far too early yet for anything I need to heal properly first 

Hi Cyberkat,

Lots of reasons for post-op swelling but so difficult for you at present with no hospital follow up in person. I’m sorry for that. 4 weeks seems a bit late for post-op swelling, but may not be, and yet too early for lymphoedema. Another possibility is a collection of saliva, but only by seeing it can your team help. I would take a photo and send to your Team - secretary or Head & Neck nurse should be able to give you an email address to send to. The hospitals are doing many many telephone appointments and maybe you could get a video one? Or could someone speak for you if that is currently challenging? I feel there is/should be more support for you at the moment, but maybe you will have to be a bit demanding.......All the staff you need are there but unable to see you in the hospital, but they should be able to talk you through  your current situation. Please ask for more support, I think they’ll be glad to give it.

Good luck,

Hilary

Hi I have a friend on the Cancer research chat who has similar experience to you I will message her to ask or if you are in that forum her name is Clara56 she may be able to help.She has tongue surety no radiotherapy or chemo .

Hazel x

Hi Cyberkat, i only had a small bit of my tongue removed, the main tumour was for the floor of the mouth cancer but it affected a bit of my tongue and some lymph nodes, I had a lot of skin borrowed from my leg and stomach to rebuild my gums and inside my mouth. Also, my wounds leaked puss around the staple area so was put on antibiotics which done the job as the swelling went down. You will in time need to do exercises for your tongue as they help build up the muscles again, as Hellebore1 has stated you should try and contact your team to check up on you, maybe they can get in contact with the speech and language department as well as a dietician as you cannot do it alone. Im sure they will be only too happy to help and get you back on the right tracks. Wishing you all the best , good luck.

                                               Chris