Connect
Looking for help with radiation fibrosis; Tips?
Looking for help with radiation fibrosis following radiation of head and neck and a modified neck dissection . I have had PT and do daily exercises at home for neck fibrosis and trismus. I also have a mouth stretching device called a therabite. Is there anything else besides physical therapy that I can do to help with this worsening condition? I am also experiencing occasional muscle spams in the back of my neck and have read that Botox injections may help with that. Any suggestions would be much appreciated. Thank you.
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
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!
-
Like -
Helpful -
Hug
2 Reactions@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?
-
Like -
Helpful -
Hug
1 ReactionHi 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.
-
Like -
Helpful -
Hug
1 Reaction