Relief from Radiation Fibrosis Syndrome

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.

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.

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.

Would love to hear more about your experience. I have been suffering from neck stiffness and pain for 4 years.

Billy

@leahmary29 So here is a bit more info on fat grafting surgery.

So I am 5 and a half years out from SCC on the base of my tongue and in a couple of lymph nodes on the left side. I was treated with proton radiation (33 treatments and 70 gys) and chemo (7 treatments of Taxol and Carboplatin) at Phoenix Mayo. Good news is that all my scans have been clean and I have been declared cancer-free.

Like many people, I had/have a handful of side effects including a very stiff neck with constant low grade pain. I tried stretching, etc. but it didn't make much difference.

I was referred to the Plastic Surgery group for an evaluation and was offered 2 things - Botox injections every 90 days, combined with fat grafting surgery. So about 8 weeks before my surgery, I had the first set of Botox injections to loosen or soften up my neck.

The surgery itself takes about 90 minutes as an outpatient. Please remember I am not a doctor so I don't know the real medical terms, but I think you'll get the idea. First, they harvest fat, in my case from my stomach via liposuction. They purify it so they could reinject it into my neck.

Then they make a couple of incisions, one on each side of your neck, kind of in the crease of your lower neck. They then do a few things. First, they make incisions in the sheath that resides under the skin that allows additional range of motion. Then they "cut" the fibrous cords that formed from the radiation, I guess it's really scar tissue. Then they clean up other scar tissue. Then they inject the purified fat under the skin.

For me (and I believe most people), the liposuction was quite painful for perhaps two weeks. During that time, I wore a corset (?) around my waste that covered from the bottom of my rib cage to just below my belly button. The surgery pain was reasonably non-existent since the incisions are small. The pain from the stiffness was gone right away. The skin felt soft and elastic on the right side. The pain was gone on both sides was but the skin wasn't as pliable on the left. I started PT the next day, for a month or so. My flexibility was just under the low range of normal.

About 6 months later, I had it done again, same process as the first time. The pain is still gone and my flexibilty is normal, except the movement when you tilt your head and move your ear towards your shoulder. It improved, but just below normal. For example looking up, prior to the surgery I was at 21 degrees, after the first one 47 degrees and after the second 57 degrees.

I had the first surgery in April of 2025 and the second in October. I continue to get Botox Injections quarterly.

I hope that helps. Let me know if you have any other questions.

Some folks on this forum have used Red Light Therapy and report great results. I have not tried it yet. But this article came from the Sloan Kettering Cancer newsletter. Evidently they offer it to radiation patients. Its worth a read and maybe ask your cancer team to read it, too.
https://www.mskcc.org/cancer-care/patient-education/about-your-photobiomodulation-therapy

@stephenrfleury

Do you continually have to get these Botox and Fat Grafting procedures forever or does it end after so many times?

Thanks,

Rob

@roblem You can get Botox injections every 90 days for every if they help you. For me, I pretty tired of dealing with discomfort or even the threat of discomfort and have decided to get for the foreseeable future.

As far as the fat grafting, I don't think there is a limit and you can get it again if need be. For me, I'm good after the two.

@stephenrfleury

Thanks for the quick reply. I really appreciate it.

Rob

Stephen, it is great to hear about your success. My treatment was in 2012 and my fibrosis has been getting worse and worse for the last 6-7 years. Been getting botox for 3 years with varying relief. I can get injections every 12 weeks but I have never had more than 6 or 7 weeks of relief. The last round in February did nothing. I would love to hear more on the plastic surgery option. Any insight on how to get into the Mayo Clinic? I can get a referral but would love to know the process.