Lymphedema of the neck: What did you do?

Posted by lilypilly @lilypilly, Jan 2 9:16am

Hello I have Lymphedema of the neck amd face following radiation/chemo for base of tongue cancer. Has anyone else experienced this? What did you do?
I get regular massage on it but I need more.
Also a very dry mouth and phlemn in the throat. Help?

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mattbrolly | @mattbrolly | 1 day ago

I am sorry to hear what you are going through. I have the same symptoms. Ask your radiologist or oncologist for a script for physical therapy. The therapist will massage you and provide self MLD exercises for you to do on your own. It isn’t perfect but it sure helps. Best of luck to you!

niml | @niml | 2 days ago

In reply to @lilypilly "Wow thank you so much for the info!" + (show)

Yes. I'm certainly going to check this out. Thank you so much. My neck is so bad and feels like a tree trunk. It is keeping me from being able to swallow properly.

lilypilly | @lilypilly | May 22 5:54pm

In reply to @lollie "No- I do not...definitely worth an inquiry though! They're located in MN so a close neighbor..." + (show)

Thank you but only in the US. I will need a script from a US Dr.
Guess I am out of Luck.
Thanks again

lollie | @lollie | May 22 1:36pm

In reply to @lilypilly "Wow. I am in Canada do you know if that would make a difference?" + (show)

No- I do not...definitely worth an inquiry though! They're located in MN so a close neighbor 🙂 Good luck to you!

lilypilly | @lilypilly | May 22 10:17am

In reply to @lollie "Tactile Medical (the manufacturer of Flex touch pumps) offers financial help to pay for their machine...the..." + (show)

Wow. I am in Canada do you know if that would make a difference?

witcat | @witcat | May 22 9:09am

My lymphodema on my neck is hard and swollen. Tried PT, but radiation caused a bleed and hole in my neck so in wound care for that. I am waiting for the Tactile pump to get approved from insurance. I've heard this helps a lot.

roblem | @roblem | May 21 2:10pm

In reply to @lollie "Tactile Medical (the manufacturer of Flex touch pumps) offers financial help to pay for their machine...the..." + (show)

Hi @lollie,
I am going through the same exact thing too as I started my appeal process just last week to get the Flex touch pumps. This is crazy that insurance does not want to cover this as it would save them in the long run as we wouldn't need as many if not any at all lymphedema and myofascial massages. Perfect example, why health insurance gets a bad reputation.

Did not know about the possible financial help from Tactile so thank you.

lollie | @lollie | May 21 12:41pm

Tactile Medical (the manufacturer of Flex touch pumps) offers financial help to pay for their machine...the paperwork was pretty straightforward. My sales rep recommended this option in case insurance was lame (which it was; they wouldn't cover it because it was made out of network...ridiculous!) Tactile Medical ended up covering 100% of the cost of my machine!

sandy8043 | @sandy8043 | May 20 5:12pm

In reply to @witcat "My insurance denied this, but we have an appeal. I hope this works, my lymphedema in..." + (show)

My surgeon also prescribed weekly massage. I see an OT for lymphedema massage and for Myofacial Release Massage. A weekly massage by my OT is about $500. Your insurance company would save $$ by providing the machine.

witcat | @witcat | May 20 4:28pm

In reply to @sandy8043 "I have had this as well following tongue cancer surgery, chemo and radiation. I use a..." + (show)

My insurance denied this, but we have an appeal. I hope this works, my lymphedema in my neck caused by radiation is very painful and not going away! thanks

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