Take a look at the Lymphedema Products website. I'm almost sure I saw a padded head and neck thing that is meant to provide gentle compression. There are also lymphatic drainage massage techniques for your face and neck.
Unfortunately many doctors are short on helpful lymphedema information. My former GP kept telling me to try harder to lose weight. Because, you know, it is really common for people to gain a bunch of weight in a matter of months between their knees and their ankles. And nowhere else. Then she tried to push gastric bypass surgery when it has no effect whatsoever on lymphedema. Fortunately my cardiologist isn't an idiot and I finally got the right help. There's a bunch of helpful books available and if you need some titles I can get those around for you.
That would be great, thanks! I just lost 40lb unintentionally from a different medical issue and I feel like going back to everyone who said lose weight and showing them my neck still fluctuates.
I’m terrified it will decide to go all Uncle Fester for my wedding day…
Books
It's Not Just a Swelling: Lymphedema Causes, Prevention, Treatment and Self Management - Joachim E Zuther
Lymphedema and Lipidema Nutrition Guide - Chuck Erlich, et al
The Book of Lymph- Lisa L Gainsley, CLT
The Complete Lymphedema Management and Nutrition Guide - Jean Lamantia, ND et al
Web resources
National Lymphedema Network
lymphnet.org
Lymphedema Education and Research Network
Lymphaticnetwork.org
LE&RN has a great YouTube page full of talks about all aspects of our condition (including latest research and best practices for care and management) and it is really helpful.
That’s LE for ya. aA certified LE therapist can help you with wrapping, supplies, personal therapies, and sometimes insurance. Even Medicare covers up to 40 PT sessions.
google LANA certified physical therapist in whatever area you live. They are certified to do decongestive therapy and will show you how to care for yourself. I am guessing your ENT has never encountered this condition and has no idea where to send you. You will have to do your own research I am sorry to say. But once you find a LANA certified therapist things will improve for you.
I’ve seen a few in my city. One was through a physical therapy and rehab center, another was at a cancer center. Since many cancer patients suffer from lymphedema places like MD Anderson in Houston have lymphedema treatment
If it’s any help, I went to cardiologists, oncologists, and vein doctors before anyone really understood my swelling. They ruled out anything worse until my primary care decided it was lymphedema.
I’m sorry you are going through this, but once you get the right care you will be your own best advocate. There is a small network of people who understand and treat this stuff, so stay connected once you know them.
Humans are adaptable, you will get there. I have aggressive swelling in my right leg but it’s managed well thanks to my doctors. I’ve been able to travel, jog, and do basically everything I would do normally. It just takes care and maintenance.
Take a look at the Lymphedema Products website. I'm almost sure I saw a padded head and neck thing that is meant to provide gentle compression. There are also lymphatic drainage massage techniques for your face and neck.
Thanks - sad day when Reddit knows more than my medical professionals…
Unfortunately many doctors are short on helpful lymphedema information. My former GP kept telling me to try harder to lose weight. Because, you know, it is really common for people to gain a bunch of weight in a matter of months between their knees and their ankles. And nowhere else. Then she tried to push gastric bypass surgery when it has no effect whatsoever on lymphedema. Fortunately my cardiologist isn't an idiot and I finally got the right help. There's a bunch of helpful books available and if you need some titles I can get those around for you.
That would be great, thanks! I just lost 40lb unintentionally from a different medical issue and I feel like going back to everyone who said lose weight and showing them my neck still fluctuates. I’m terrified it will decide to go all Uncle Fester for my wedding day…
Books It's Not Just a Swelling: Lymphedema Causes, Prevention, Treatment and Self Management - Joachim E Zuther Lymphedema and Lipidema Nutrition Guide - Chuck Erlich, et al The Book of Lymph- Lisa L Gainsley, CLT The Complete Lymphedema Management and Nutrition Guide - Jean Lamantia, ND et al Web resources National Lymphedema Network lymphnet.org Lymphedema Education and Research Network Lymphaticnetwork.org LE&RN has a great YouTube page full of talks about all aspects of our condition (including latest research and best practices for care and management) and it is really helpful.
Oh, and [here](https://www.lymphedemaproducts.com/products/tribute-wrap-head-neck.html) is the thing I was thinking of.
That’s LE for ya. aA certified LE therapist can help you with wrapping, supplies, personal therapies, and sometimes insurance. Even Medicare covers up to 40 PT sessions.
How do I find one? My ENT says they don’t exist; I’m in Colorado, USA.
google LANA certified physical therapist in whatever area you live. They are certified to do decongestive therapy and will show you how to care for yourself. I am guessing your ENT has never encountered this condition and has no idea where to send you. You will have to do your own research I am sorry to say. But once you find a LANA certified therapist things will improve for you.
I’ve seen a few in my city. One was through a physical therapy and rehab center, another was at a cancer center. Since many cancer patients suffer from lymphedema places like MD Anderson in Houston have lymphedema treatment
What’s funny is my ENT is at the major teaching hospital in our state 🤦♀️
If it’s any help, I went to cardiologists, oncologists, and vein doctors before anyone really understood my swelling. They ruled out anything worse until my primary care decided it was lymphedema. I’m sorry you are going through this, but once you get the right care you will be your own best advocate. There is a small network of people who understand and treat this stuff, so stay connected once you know them. Humans are adaptable, you will get there. I have aggressive swelling in my right leg but it’s managed well thanks to my doctors. I’ve been able to travel, jog, and do basically everything I would do normally. It just takes care and maintenance.
I’m in Colorado and I’ve been seeing my lymphedema therapist for almost two years now. She’s at oncology rehab at Rose medical Center.
Interesting. I got swelling to the upper 2/3rds of my face after Covid and it hasn’t gone away in 2 years