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Looking for help with radiation fibrosis; Tips?

Posted by Ellen2007 @nnurse, Jan 29, 2023

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.

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sandy8043 | @sandy8043 | Apr 28 7:10am
In reply to @steve1947s "Almost a year since joining this "blog thread"..... so far, no good. 2015 radiation to my..." + (show)
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Almost a year since joining this "blog thread"..... so far, no good. 2015 radiation to my neck and the effects are getting worse. Change in voice and trouble swallowing, I live with. Fluctuating BP and carotid artery blockage, I'm doing my best to deal with. Thyroid, so far, so good. Back of neck fibrosis is getting worse as time goes by.
Physical therapy seems a no brainer for range of motion and posture work. Chiropractor is working to break up the muscle tissue and feels great. I even tried acupuncture to no avail. Pain management center started with trigger point injections followed by injection into the "neck joint" followed by steroid trigger point injections and now on to botox injections. It's only been two months and I'm told to wait six months. I've still got to investigate fat grafting technique. Good luck to us all.

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@steve1947s I fell your pain. I've had two different OTs perform Myofascial Release Therapy/Massage. The first one used firm pressure and that worked very well. She retired.😥 My second OT used light pressure and that didn't help much. But the idea is that the connective tissue between the skin and muscle needs to move hence the " release". My fibrosis is worsening as well. Not sure what to do about it. Stretches and self massage don't seem to work anymore.

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atherton | @atherton | Apr 30 11:25am

My husband was diagnosed in 2004 with SCC, stage 4 with a 20% prognosis.

My two suggestions:

1). Go to MD Anderson and map out a very good plan of care. They have so many resources there.
2). We fly from San Diego to West Orange New Jersey every 3 months for my husband's severe radiation fibrosis - as it's been 21 years since diagnosis. We HIGHLY recommend Dr. Stubblefield at Kessler Rehab . He is considered a leading expert on radiation fibrosis. He informed us that traditional PT was only making things worse. His PT, OT and Speech are specific trained in the treatment of radiation fibrosis and is able to relieve my husband's pain.
3). Look up articles on the NIH regarding treatment for radiation fibrosis - that's how we found Dr. Stubblefield in New Jersey.
4). Look up Cancer Rehab PT on you tube - PT has some great gently exercises - make sure to seek advise from MD first before starting any exercises.
5). Exercise now, get a great myofascial therapist - put in as much time to treat yourself now so that in 20 year you will be thankful that you did.
OK...that was more than 2 things but.....

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atherton | @atherton | Apr 30 11:32am

Please look up lymphedema. We received a tactile medical pneumatic compression machine with head and neck garmets. My husband neck did not look swollen so I thought it was strange that Dr. Stubblefield recommend lymphedema therapy. Holy cow was I wrong. My husband had a 20 minute therapy session with the compression machine and he felt so much better and could turn his neck much farther than before the session. He had to get a doppler of his carotids before using the pneumatic compression machine by Tactile Medical. He now uses it every morning and it has really helped ! Look it up on the NIH - National Institute of Health - lymphedema treatment for head and neck cancer.

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sandy8043 | @sandy8043 | Apr 30 1:06pm
In reply to @atherton "Please look up lymphedema. We received a tactile medical pneumatic compression machine with head and neck..." + (show)
Profile picture for atherton @atherton

Please look up lymphedema. We received a tactile medical pneumatic compression machine with head and neck garmets. My husband neck did not look swollen so I thought it was strange that Dr. Stubblefield recommend lymphedema therapy. Holy cow was I wrong. My husband had a 20 minute therapy session with the compression machine and he felt so much better and could turn his neck much farther than before the session. He had to get a doppler of his carotids before using the pneumatic compression machine by Tactile Medical. He now uses it every morning and it has really helped ! Look it up on the NIH - National Institute of Health - lymphedema treatment for head and neck cancer.

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@atherton I'm a Mayo Rochester patient. Ive had my Tactile Medical Lymph pump for 2 years. Mine is a head piece and vest. It really does help so much with my lymphedema. When my lymphedema is bad it affects my saliva, swelling and even my taste. If I keep it in check I find I have more neck movement and flexibility, too.

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