Breathing problems with neck Lymphoedema following 2 radical neck dissections

Hi Mike, I also had right neck dissection last year before RT and 4 months on still suffer with lymphoedema on my neck that is much worse of a night. To help with swelling I use a marble roller brought from TKMaxx and a nebuliser for the mucus  from Amazon. Most exercises for my neck I do of a night which help otherwise I can’t move in the morning.

Hope that may be of help to you.

Sue 

Hello Mike

This isn’t really an answer…but is there any private provision near you?  You can’t go on without sleep for another nigh on 6 months.  If your team can’t get the appointment brought forward, would you be able to organise a private session?  Even one session would show you what the massage should feel like to be able to do it yourself.   I am lucky in that I only suffer this mildly and intermittently…but it’s really hard from the videos, good as some of them are, to know how hard you need to press, exactly what direction and what the process should feel like.

I really hope you get this sorted.

Liz

Hello Mike, like Liz I found private help just to show me the action and pressure required, just went the once, which I found really helpful and to be honest better than the lympho clinic at my hospital, where I eventually, after a six month wait got an appointment.  I continue even coming up to three years after surgery massage twice daily.  Do hope you feel some improvement soon.

best wishes

June

Hi Mike

I am so sorry  to hear about your situation.Lymphodema is a common condition after trauma to the head and neck area. 

Like liz has suggested I would try and find a qualified lymphodema Specialist or Nurse who can at least show you how to do a personalised lymphodema massage to help your needs. It’s essential people with Lymphodema get support asap!

Mine also pools internally pressing on windpipe so both neck garments I tried ( from my Lymphodema Nurse)sadly were too restrictive I now use sensitive neck tape after massage which helps.( I wear it for 2-3 days then take it off to give my skin a breather for a couple of days.

I’still have lymphodema 14 mths on after having radiotherapy treatment ( and chemo)on both sides.Like Sue I use a jade roller after being shown the best route to try and manoeuvre and help Lymphatic drainage.I do this every morning for 1 hr and the same every evening it really helps.I also have to sleep fairly upright with four big pillows.( started on 7) I do find this is essential in helping both drainage and mucus issues.Daily neck and shoulder exercises are also a must.

I am very lucky to have a wonderful Lymphodema Nurse ( couple of months after treatment)who I still see every 2/3 weeks this professional massage is essential in my lifelong management of this condition. Many people’s Lymphodema is mild after surgery or treatment but for some of us it’s an after effect and we have to learn how best to manage it and live with it.

You can private message me anytime I am happy to support you as best I can.

All the best

Debbie

Just wanted to say thank you to H&N members for your help with this post. I suggested he post here rather than thyroid forum as I knew you were such a friendly, supportive bunch (and more active forum) who often have neck dissections as part of the treatments too and who helped me back when I had mine. I was lucky not to get lymphodaema but remembered a few of you dealing with it and knew you'd respond promptly with any advice you had.

Thanks to k9crazy for suggesting I post here and also thanks to all of you for your lovely replies. I have found some fairly local lymphatic massage people so will be contacting them first thing tomorrow to arrange a session.

Thanks, have just ordered one of these from Amazon.

The neck tape sounds a good idea for the time being. Do you have a name for it and also where you get it from?

Hi Sue, do you have a link for the nebuliser that you have?

Thanks