... okay ... let's see if this can be done 'in a nutshell' ...
I have enchondromatosis (Ollier's disease). I have multiple enchondroma, multiple pains, etc. Already one leg has been amputated because of a chondrosarcoma ... anyway ...
For quite some time now, I've had (sometimes) excruciating pain in the left shoulder. It does NOT trigger pain when that shoulder is used. It hurts mainly when at rest, when not being used, when trying to get to sleep, sometimes waking me up at night. I've been for 'physical therapy' which did not trigger/cause or result in any useful outcome - nor did it help.
Now the pain radiates from the upper/center of my back out to both shoulders and upper arms. Sometimes there are very sharp points of pain in the same location of each upper arm. The pain in my upper back/lower neck (there is a 'clump of bones' I can feel in that area - is that the t1/t2 area?) is getting steadily worse. Sometimes just swallowing causes a strange pain in that back/neck area.
Sitting back in a chair, causing pressure in that area will trigger the pains described.
It was bad enough one afternoon that I went to an 'urgent care' clinic - who prescribed a 'Prednisone dose pack', and mild muscle relaxers (Zanaflex). The prednisone seemed to work at first - but it's all coming back (three months later) and I do NOT want to take that stuff on a regular basis (with my body's 'ability' to grow 'things' I am very apprehensive about using steroids).They diagnosed it as a 'wry neck' - which I think is wrong.
I am going to get an MRI on that area next week ... I want to know your opinion.
With my bone disease - several doctors basically have shrugged their shoulders, adding "I don't know. You are kind of a rare case."
how to help you now?
I waited to know about your new MRI, because only surgery can help in cases of important neural compression. I still have a theory to treat chondromatosis which is better to discuss it not at the forum, then we may study the possibity of a medical trial for you. Dr Nassim
"Mild anterior spurring at C5-C6 and C6-C7."
"C5-C6 has disc osteophyte ridge with mild canal stenosis. Mild Left facet and uncovertebral degenerative change with mild left foraminal narrowing."
"C6-C7 has osteophyte ridge with mild canal stenosis"
"C7-T1 Has left paracentral disc protrusion with mild canal stenosis. Minimal left foraminal narroing."
i will reffer you to dr Prem Pillay who is an expert specialist in minimal invasive and he may have a substance which he can use as injection to decrease the cartilagenous compression. please let me knowabout the results of your conversation. he is in our MedHelp site, you can find him easily
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