Relief from Radiation Fibrosis Syndrome

@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.

@stephenrfleury how are you doing now? My husband and I are flying in on 12/23 to have him evaluated by Dr. Patrick Garvey for this procedure. (Your doctor is on leave). We are separately doing Botox treatment in San Antonio. Would love to hear if you are still feeling the improvement.

I was about 4 and a half years out when I had the surgery. I started Botox at about the same time.

I wasn't told anything about the timing so I really don't know. I would check with your care team to see what your options are

@stephenrfleury how are you doing now? My husband and I are flying in on 12/23 to have him evaluated by Dr. Patrick Garvey for this procedure. (Your doctor is on leave). We are separately doing Botox treatment in San Antonio. Would love to hear if you are still feeling the improvement.

@leahmary29 I'm sorry that you have become another member of the club no one really wants to join. I'm not sure that this procedure would be of much help to me after 20 years, but I wonder what the primary motive was for your having the procedure. My range of motion is limited, but the pain is tolerable for the most part. I wonder if I am missing something. As much as I would like to enjoy more movement, I've grown accustomed to my limitations. Thanks for any advice you can share.