Problems with neck Lymphoedema following cancer surgeries

Hi Mike

Just read your posts and other similar ones recently.  Sorry I can't be of any help but wanted to say I'm having (and getting worse), the same issuras yourself, (it's now just over 5 years since my full thyroidectomy for PTC, tall cell variant) and I know exactly how you feel but nobody is saying anything..simply that it could be due to the internal scarring!.

Like yourself, I don't know what to do as nobody is offering me any explanation or help with the symptoms which are really debilitating, especially as you say, leaving us breathless and with lack of a good night's sleep.

I hope somenody on here can shed more light on this issue.

Can I ask, do you have a frequent cough and more croaky voice?  I do, but the oncologist doesn't seem particularly worried as my bloods seem fine.  Given all this, I've pushed for am ultrasound on the neck area and a ct of basically my torso, as I'm continuously feeling like I'm being constricted. ..so stressful

Take care

Diane

Hi Mike, welcome to the forum but sorry to read your post. That's dreadful that they can't give you an appointment for your lymphodaema until summer but sadly I'm not surprised. I had a bilateral neck dissection aswell and had complications (not lymphodaema) but I found more help from the members on the Head and Neck forum as they often have neck dissections for lymph nodes removal with H&N cancers aswell and it's a bit more of an active forum. Whereas I found not so many on the thyroid forum with similar experience. 

I'm sure I've seen H&N posts referring to a really good video to help self massage. Also I believe there are lymphodaema massage specialists you can find privately but do your research into whether they're experienced with post cancer surgery. Also I believe some have tried a neck compression bandage of some sort. 

Anyway if I were you I would rewrite a post including lymphodaema and neck dissection in the title on the H&N forum and you'll get lots of help pretty quickly I'm sure. I'll also tag Peter PFJTHS  who often gives great advice regarding his neck dissections and see if he can help.

Hope that hel

ps.

Hi Diane,

The neck constriction is truly awful, I'm sorry you're going through this too. I've had no answers either. I woke up from surgery with the strangling feeling, so I know scar tissue doesn't explain mine. Mine's not lymphodaema either though and seems to ease a bit when I lie down and rest my head, so luckily I can actually sleep. I'm sorry you find you can't. I've only ever been told "it'll get better with time" no explanation. I actually just think my brain has adapted and I just I think about it slightly less now (20 months) but in the early days it affected my mental health badly. It's so hard to explain to anyone else what it's like to live every day with a feeling like being strangled!! I desperately searched the internet for answers, as you probably have and although I came across a few forum posts with sufferers, there didn't seem to be any solutions. So I guess this is what they term my "new normal" and when it gets bad, I'm learning to try to get myself to focus on being grateful for still being here for my daughter.

I wish you luck with the scans and would be so interested if you do get an answer from them, so please post any updates.

Hi Diane,

I don't have a cough but my voice has gone quite husky.

Sorry to hear you are going through the same; I'm currently looking locally (Lancashire) for some certified lymphatic massagers to see if I can go privately but no luck so far.

best wishes

Mike

Thanks k9crazy,

I'll do a post in the H&N Forum