Relief from Radiation Fibrosis Syndrome

@chubbell42 It seems like if you were treated at Mayo, your oncologist should be able to provide a reference. Second thought, get your PCP to refer you to Plastic Surgery or PT to talk with Dr. Keole.

@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.

Hello Stephen, I too suffer from neck fibrosis from radiation and I was going to physical therapy for hard deep massage a long time and it helped a lot. I couldn't keep going so I bought a SKG H7 Cordless Neck Massager on Amazon for $100. And I also bought a Plantifique Gua Sha facial massage which I use with Hawk Grips massage lotion. I use them once a day or every other day. I also do a lot of neck stretching. It's a little investment, but I think they all help a lot. It's painful at times, but the neck feels much better in the morning. Lastly, I also go to Acupuncture. Along with the Acupuncture, my doctor gives my trigger point shots in the neck hard areas. I haven't tried Botox, but I'm going to ask my doctor on my next visit.

@harleytiger had radiation & chemo nasopharyngeal treatment in 2006 - and in mid 2020 diagnosed with late effects of radiation - severe neck fibrosis, dysphagia - swallowing, dysarthria - speech, numbness in lowere jaw and lip, and drooling - all stems from late effects.
Just like you - have been doing exercises to neck, and mouth stretching, going for myofascial once every 2 weeks, and lately got a red light therapy device to assist - in the hope that I going forward I will not have the need for a feeding tube to assist in nutrition!!
I have brought this Botox injection to my oncologist a year ago - but, have not have any referral from him.
Good luck with your Botox !

@josk The doctors don't tell how radiation takes the good out of everything almost. Their only care is that the cancer is gone, side effects don't concern them. I wish I knew then what I know now. It would be different.

I find this conversation interesting. I've dealt with this issue for 2 decades and have become so accustomed to the limitations that it hadn't occurred to me there might be a solution. I'm not sure how invasive I'm willing to go, such as surgery, but massages and acupuncture seem reasonable. I guess I'll have to do some more reading to see if it's worth the trouble. None of this information has been made available to me by the doctors I've seen over the years. I'm glad I found the Mayo site.