Looking for help with radiation fibrosis; Tips?

Hello @pherlocher and welcome to the Head and Neck group. I myself had a bit of fibrosis and found the Speech and Swallowing work helped. However, we are all different in how our bodies react to radiation. At least you are getting Proton as opposed to traditional Photon radiation, which should drastically reduce the damage.
Let's see if anyone with more experience in fibrosis issues can jump in here.

hey ... glad that you have been offered palliative (I reside in Toronto and not aware or not been referred to such a program) - believe there is no such program in Toronto.
With the late effects of radiation in 2020 - it very much affects my lifestyle - in that I am not comfortable in meeting up with friends and family due to my 'invisible disabilities' - dysphagia, dysarthria, hearing.
Am doing my best to be 'ok' on my own meanwhile - and also doing my best to adapt to these late effects of ratiation.
ciao & take care!

@josk, Princess Margaret Cancer Center/UHN in Toronto has a fabulous Palliative Care center and team. You can find out more here https://www.uhn.ca/PrincessMargaret/Clinics/Palliative_Care

Palliative care teams include social work and support for the entire family as well as yourself as the patient. You may find it helpful.

The late side effects of treatment such as dysphagia, dysarthria, impaired hearing make interactions with others tough in so many ways. Sometimes withdrawing is just easier.

Josk, have you had a chance to work with a speech language specialist for swallowing and speaking issues? What hearing supports might improve the hearing impairment?

Hi Colleen
Many thanks for your input.
I believe I am one of the fortunate ones who has a great and supportive medical team at UHN. I have not checked out or looked into the Palliative Care yet - but after my 'panic' with onset of dysarthria - which occurred during the COVID - my oncologist referred me to the Head and Neck Survivorship Program - and believe this is where I will seek palliative care when the need arise.
And yes - I have tried a couple of speech language specialists for swallowing and speaking - but after the initial sessions - I find that they do not really meet my expectations. I currently do my best at exercises to the head and neck areas - hoping to maintain current situation and keep it from deteriorating (I had made known to my oncologist that I will never get a feeding tube in me when I get to the point where I cannot swallow!!)
Hearing impairment - was advised that nothing can be done - except for hearing aids (hearing on the left ear is at '0' - this is where radiation is more concentrated.
Since my speech and swallowing occurred in mid 2020 - and going through the 'panic' stage - I am now adapting to accept my current situation - and trying to be 'ok' on my own - and yes, I find that withdrawing and being on my own is less frustrating. (It is difficult to have people be aware and be understandable of my 'invisible disabilities' - not sure if this is the right choice!!)
Again - thanks for your input.

My Radiation following tongue cancer surgery ended Jan 2024. Since then I've managed my lymphedema to a certain extent and kept up with my stretches, etc. But fibrosis is becoming an issue.
My surgeon in Rochester suggested seeing an OT for massage. I've had two appts so far. She is skilled in Myofacial Release Massage. I am seeing very encouraging results. I have better flexibility and range of motion. Its pretty amazing. My OT said once the my Myofacial tissue has been released it should stay that way for the most part. Meaning the results should be long-lasting. I would recommend this treatment to anyone experiencing radiation fibrosis following head and neck cancer. She thinks I will need 5 or 6 visits total.

Hi Sandy
Since my onset and diagnosed in mid 2020 of dysphagia, dysarthria and severe neck fibrosis, I have been trying out various health therapies (including acupuncture), and now have resigned myself to a physio therapy session bi-weekly. Am also doing jaw, mouth, neck exercises daily - in the hope that it would help and delay my 'invisible' disabilities from deteriorating.
Good for you that you start your myofacial release massage early - believe it does help in preventing and/delaying the onset of late effects of radiation.
I have never looked into myofacial release massage - but will definitely look into this - helpful info.

To Pherlocher;
Can you tell me what NIVA ultrasound studies show ? How often do you have them? Thank you .

Yesterday, I attended an appointment at Brigham and Womens Hospital, Center for Pain Management in Chestnut Hill, MA (just outside Boston). The young MD said she reviewed my MRI, asked lots of questions, poked and prodded the back of my neck. Ten years ago, I received radiation to my neck and for the past few years, the resulting fibrosis is becoming more and more severe. She told me she has seen many patients with post-radiation fibrosis and has several treatment options. Trigger-point injections are the least invasive and are a one visit option. If it works would be the preferred method. Botox is actually several steps down the list for some reason. I liked her very much, seemed informed, experienced and compassionate. Good luck to us all. --- Steve

Thanks for update - trigger-point injections again is something new, and might not be available in Toronto. Nevertheless will check with my doctor.
Take care!!

@josk I too would like to know if it is available in Toronto. Suffering with neck and face fibrosis from radiation.
Will you post any info you find out. I will also ask my GP.
Thank you