Relief from Radiation Fibrosis Syndrome

Posted by stephenrfleury @stephenrfleury, May 13 4:21pm

ad SCC on the base of my tongue and a couple of lymph nodes in 2020 and was treated with radiation and chemo. Like many of you, I had pretty severe fibrosis in my neck.

In the past month, I had a combination of 2 treatments at Mayo in Phoenix. First, I had Botox injections in my neck to relieve some of the stiffness in the muscles. Those were followed up with a surgery called fat grafting, where they harvest fat cells from your body (belly for me), and inject those cells into your neck to soften the fibrosis. They also breakup some of large fibrotic cords. It has relieved just about all of my pain and much of the stiffness.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

@lilypilly

Thank you @niml
I do have a speech therapist and she helps a great deal. I also requested to see an oral surgeon to see whT he can do for my tongue if anything.
Swallowing is very difficult but I push like crazy. I can have chunky soups and smoothies. That took a year!!
I also have Lymphedema which has swelling in the throat.
Weekly massage helps this.
What a looooong journey this is.
I wish you all the best and please continue to update the group with your progress.

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Hi lilypilly,

Got this from my PT is to use a compression suit (Flex-Touch by Tactile Medical) for Lymphedema. Here is the link: https://tactilemedical.com/our-lymphedema-solutions/for-head-and-neck/. I currently in process to see if my insurance will cover it.

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@roblem

Hi ewilde,

Did you have just regular acupuncture or ELECTRICAL SIMULATION ACUPUNCTURE? Also, I guest TCM stands for Traditional Chinese Medicine?

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Hi, in some sessions, it's just acupuncture, and in other sessions, it's acupuncture plus electrical stimulation. Yes, TCM stands for Traditional Chinese Medicine. The areas of focus for my case have been herbal teas to help alleviate inflammation and suggestions on additions to the tea, such as black sesame powder to support weight maintenance or gain.

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@roblem

Hi lilypilly,

Got this from my PT is to use a compression suit (Flex-Touch by Tactile Medical) for Lymphedema. Here is the link: https://tactilemedical.com/our-lymphedema-solutions/for-head-and-neck/. I currently in process to see if my insurance will cover it.

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Hi Roblem
I am in Canada. I reached out to Tactile Medical and unfortunately they do not shop to us. I will also need to see US physician to prescribe MD a US address.
I have reached out to Kurt Health Canada Government division to see uf they can assist in me getting this into Canada.
Thank you for your suggestion.

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