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Relief from Radiation Fibrosis Syndrome
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.
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I've never received such a diagnosis, nor is this something I've ever heard of or have been offered over the past 19 years. The silver lining in the uptick of neck cancer is the new treatments being tried. I'm glad it worked for you. If you haven't seen my post, keep an eye on your BP. Up to 80% of patients experience baroreceptor failure after neck cancer treatment, causing one's BP to fluctuate wildly. Good luck!
Thanks for the heads up
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1 ReactionHi Stephen, that is wonderful to hear you have been relieved of the pain! Could you please tell me the name of your physician at Mayo in Phoenix? My husband has been dealing with the exact same issue as yourself along with other issues that comes with the treatment of SCC. I would really appreciate it if you could provide me that information so we can make an appointment as well. Thanks! Vicky
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1 ReactionI started with Dr. Keole in Physical Therapy who was kind of the project leader. She helped me get into a PA named Alexandria Leovic, P.A.-C for the Botox injections. The surgery was with a plastic surgeon named Dr. Alanna Rebecca.
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4 ReactionsHi Stephen
Just like @56tburd - I have never heard of any nor been aware of treatments for fibrosis.
I am from Toronto - treated with Stage IV nasopharyngeal carcinoma in 2006, and in mid 2020 I realised that I was not able to form words clearly - and that was when I was diagnosed with dysphagia and dysarthria and severe neck fibrosis.
My understanding was that nothing can be done to improve on the speech and swallowing of food or liquid - and that eventually I might have to end up with a feeding tube - for nutrition.
Currently I am taking physio therapy every other week, and also doing dysphagia exercises daily - hoping to stop my situation from deteriorating.
Is the treatment you are getting has connection to dysphagia and dysarthria?
Thanks!
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1 ReactionFor me, it is for the neck fibrosis, although I don't know whether it helps dysphagia and dysarthria. Please ask your care team and report back to the group.
From what I had goggled - "... severe neck fibrosis can lead to dysphagia (difficulty swallowing) and dysarthria (difficulty speaking) due to the stiffening of tissues and muscles in the neck and throat. This can impact the range of motion and coordination needed for both swallowing and speech...."
I will bring this up with my doctor in PMCC in my next follow-up appt - which is start of next year.
Thank you very much Stephen!