Hereford collar. What now?

I never wore a collar Mark so can't say for sure but your assumption sounds plausible to me, certainly seems to be having an effect anyway. Got rid of my lymphodema in 2014 with just the massaging exercise, I have a small amount of it again now and am waiting for a referral like yourself.

Thanks for that Mike. How long were you doing the exercises for?

Crikey that's a tough one, it was a while ago now, I don't remember it taking ages, I'm very impatient with stuff like that and it didn't take long enough to seriously annoy me, so probably a few weeks at an educated guess.

Hi MarkEL 

Me again, the one thing I forgot to mention was the Lymphoedema nurses advised me to sleep with my head slightly raised, either by raising the bed onto blocks or sleeping slightly propped up with at least two pillows. I’ve  always slept using two pillows but the ones I use now are quite firm and raised. The other thing mentioned is the leaflet I was given is quote “ Manual Lymphatic Drainage is effective for most people but it can take time to “re-educate” the lymphatic system. It is also tailored to suit the individual patient and the amount of tread spends on the severity of the swelling and how ling you’ve had it. An intensive course is usually recommended and may last for a period of 2-6 weeks and may include intra-Oral drainage to help swelling inside the mouth”. It doesn’t say whether the 2-6 weeks treatment is daily, weekly etc. I’ve had 2 x1 hour sessions so far. Regarding the Hereford collar I wear mine around 4 hours a day too.

Carol

Thanks Carol. That’s useful to know. M

Hi Mark

Mine has mostly gone, i got rid of mine through normal massage, no collar

I was also advised to raise my head when sleeping, i bought a wedge pillow to use with my normal pillow and it seems to help

To answer you, yes it is very gradual - well it was for me

Hello Mark.

I was told by my Lymph nurses that I would have it forever but, told by my consultant that it can get a lot better and then might flare-such confusing advice. I found the Hereford collar annoying and just go through lymph drain and massage a couple of times a day and that seems to work for me. I also am having (just over 1 year post) accupuncture from my Marsden hospital for reviving saliva glands but, she is also trying to find a way to help with the lymphodema. That might be something you could look in to. Mine is always worst in the morning but feels symetrically great by the evening.

Tricia

How are you finding the acupuncture Tricia?

What good news that The Marsden are supplying it. I think a lot of great reports from patients are helping to drive the conversion. Dismissed by a lot of clinicians at first, many are being more believing.

Now we have to get it routinely on the menu DURING treatment.

Hi Mark, I’ve been given a set of exercises and told to wear the collar while I do them (3x a day). Also told I will have to do them for the rest of my life as there is a danger of fibrosis setting in. It would seem that advice varies depending who you ask!

Hazel has some fibrosis set in over two years after RT so you might be right. Maybe   It depends how bad the initial damage is.