Relief from Radiation Fibrosis Syndrome

Has anyone had fat grafting to battle radiation fibrosis? Surgeon in Florida is using fat grafting to great effect. Patients have had voice, neck mobility and saliva return after grafting. I am still trying to contact doctors using fat grafting technique. Nearly impossible to get on waiting lists.

@josk I hear what you're saying. When I was confronted with the diagnosis and treatment plans I didn't have this blog to read and ask questions on. Radiation doesn't stop and it's a constant battle. Silly me when my radiation treatments were over I thought to myself, "that wasn't too bad?" Little did I know it was just the beginning. If I didn't do the hard, painful massages and Acupuncture treatments I don't think I'd be able to move my head? I massage my jaw muscles and open my mouth wide all the time to keep it from closing down. There has to be a better way. And doctors don't seem to care about the side effects, at least mine doesn't.

@chubbell42

I posted this a bit ago. DM me if you want more info.

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Had 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.

@harleytiger

I think you are over generalizing.

My doctors explained the radiation and how it works. We discussed at a high level the side effects, but deferred it until after the treatments as the impacts are different for each patient. As brutal as the treatments were and the side effect's impacts, they did save my life and I have been able to return to my normal life, albeit I different one.

@harleytiger

I get Botox injections every 90 days and had had fat grafting surgery at Mayo. The combination has almost eliminated the pain and greatly increased my neck's flexibility.

Hello Stephen, I am on a waiting list to consult wth Dr. Rebecca. Been over a month and still nothing. NoT easy finding doctors who are using fat grafting to battle RIF. even more difficult getting an appointment. Frustrating beyond words. Thanks for your input.

@chubbell42

The more about it, I thought someone post that Dr. Rebecca was on temporary leave. For me, Dr. Keole in the physical therapy group referred me to Dr. Rebecca. Perhaps you can find the name of the other doctor who does fat grafting or get a referral from Dr. Keole.

I will send a message to the person who did my PT. Perhaps she knows more.

@stephenrfleury
Thanks, I have a appointment with my ENT this week and I’ll ask to get started.

@stephenrfleury Stephen, I have a question. Which medical specialty are you going to for the botox and fat grafting? I have a local ENT out of UCLA who did my surgery. But, I have UCLA Health as my primary. I'm just trying to learn where to search? Plastic Surgery? Neurology?

The Botox injections are given by the ENT group at Mayo, while the fat grafting is done by the plastic surgery group.