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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.
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Some folks have used red light therapy for lymphedema and fibrosis. I don't have personal experience but I'm considering it. This PT offers this video on YouTube.
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1 ReactionI have been suffering from fibrosis for years and finally found a facility with treatments: South Shore Pain Management in Chestnut Hill, MA. The doctor said,”we see many patients with this condition, and have several treatment options!”
I thought I was going to cry.
I have started with trigger point injections. It’s the easiest starting point if it works. I need to be patient and give it more time but some relief is evident. I advise that you find a pain management clinic experienced in post radiation neck fibrosis.
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1 ReactionHi Steve
I managed to locate a couple of clinics in Toronto that provides trigger point injections.
I don't have any pain, but do have problems with swallowing and with speech (slurry and not able to articulate) - is consultation with your oncologist or family doctor required prior to embarking on this treatment?
Thx!
As far as I know, which isn’t very far at all, trigger point injections are limited to easing pain in larger muscles, like the ones running down the back of the neck. There may be other ways to treat our swallowing issues. Mine are not yet real bad…. One issue at a time for this old man.
Gotcha .. and thanks for info!
take care !!
My husband was diagnosed with head and neck cancer - SCC back in 2004. The Navy provided surgeries, however, they did not provide any preventive or even education on the devastating effects of radiation fibrosis.
he has been diagnosed with myelo-radiculo-plexo-neuro-myopathy complicated by dropped head syndrome with cervicalgia and dystonia to the left, lymphedema of the head and neck, dysphagia, trimus, and balance dysfunction. We have struggle to keep his pain under control. We finally found Dr. Stubblefield in New Jersey that's a leading expert in treating radiation fibrosis. I highly recommend them ! We fly from San Diego to New Jersey just to see Dr. Stubblefield. Their PT,OT,speech is something we have never experienced. I also found a very good article on the NIH that lists everything my husband has except one symptoms he does not have. The article explains everything include bareoreceptors causing fluctuating blood pressure. Due to being a new member - I'm not allowed to post messages that include links and URLs so google 'Late side effect of radiation treatment for head and neck cancer on the NIH by Itzhak Brook
@josk
Dr. Stubblefield in New Jersey at Kessler Rehab is the only one that we can get to provide trigger point injections lower in the neck where he needs it the most. I would highly recommend seeing Dr. Stubblefield at least for an eval. We fly back and stay for 2 week, get our Botox injections, have OT, PT, and Speech therapy for 2 weeks then fly back. It's worth it !! Dr. Stubblefield is national leader of treating radiation fibrosis and is never in a hurry to answers all of our questions. Highly recommend him !
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3 Reactions@atherton hey .... many thanks for info; unfortunately, I reside in Toronto, and I have brought this up with my doctors (two that I see on a regular basis) more than a year ago, but ... no response from either of them!!
Thanks .... and good to know!