Late Onset Cervicoscapular Muscular Atrophy--Anyone heard of it?

Mikemetz

About two years ago, my left shoulder (the side that got radiated) started to get noticeably weaker and is now sagging about 3 inches lower than my right shoulder.  I have limited range of motion when the trapezius muscle needs to be involved--pulling a t-shirt or polo shirt over my head hurts like hell.  I did some searching on line and came across an article on late onset cervicoscapular muscular atrophy.  It comes from the neck and shoulder area having been radiated which eventually kills some of the nerves that make the trapezius fire.  So, it atrophies and sags.  I can lift my left arm up to the front, but when I try to lift it directly laterally, I can't get it even up to shoulder level.

Has anyone heard of this or experienced it?  If so, can you tell me if theire's any treatment?  I saw a osteopath when this first started and he said it was arthritis, and treated it with steriodal injections.  It helped a bit for a while, but then got worse again.

 

amr2662

I have this

I have been dealing with this shoulder issue for about 15 years.   I had nasopharyngeal carcinoma stage 4  (lots of neck lymph node involvement).  Treated with chemo and radiation.

 For me it started on the left side about 5 years after treatment  with the exact same loss of function you descibed.  I had pain at first, but after a few months it went away for the most part.  A few years after the left side, my right shoulder did the exact same thing.  Can you lift you head up while lying on your back (like you are starting a sit-up)?  I can 't do this either.

I saw a physical therapist who provide stretches and exercises to help build up the other muscles of the shoulder to compensate, somewhat, for the loss.  It is frustrating at times but I learned to adapt.  I do things like use one hand to support the elbow so that the other can reach higher. 

I wish I could tell you that it will go back to normal but mine never has.  I was diagnose by a neurologist at MD Anderson with cranial nerve #11 (Spinal accessory neuropathy).    I now have multiple cranial neuropathies.  Radiation is the gift that keeps on giving.

Look up Dr Michael Stubblefield's videos on Radiation Fibrosis Syndrome on YouTube.  He has done a lot of work in this area.

 

Mikemetz

amr2662 said:

I have this

I have been dealing with this shoulder issue for about 15 years.   I had nasopharyngeal carcinoma stage 4  (lots of neck lymph node involvement).  Treated with chemo and radiation.

 For me it started on the left side about 5 years after treatment  with the exact same loss of function you descibed.  I had pain at first, but after a few months it went away for the most part.  A few years after the left side, my right shoulder did the exact same thing.  Can you lift you head up while lying on your back (like you are starting a sit-up)?  I can 't do this either.

I saw a physical therapist who provide stretches and exercises to help build up the other muscles of the shoulder to compensate, somewhat, for the loss.  It is frustrating at times but I learned to adapt.  I do things like use one hand to support the elbow so that the other can reach higher. 

I wish I could tell you that it will go back to normal but mine never has.  I was diagnose by a neurologist at MD Anderson with cranial nerve #11 (Spinal accessory neuropathy).    I now have multiple cranial neuropathies.  Radiation is the gift that keeps on giving.

Look up Dr Michael Stubblefield's videos on Radiation Fibrosis Syndrome on YouTube.  He has done a lot of work in this area.

 

Thanks

Thanks for that information, but sorry you came by it through your direct experience.  A few days ago I was diagnosed by a chiropractor who said it is very likely I have that kind of atrophy.  He also agreed that it probably is permanent, but gave me some referrals to get more opinions.

mike