11 year old with lymph nodes causing brachial neuropathy

[jsmith102775]

Two months ago my 11 year old daughter presented with an enlarged muscle on her right shoulder. Two days later scapular winging occurred. After many MRIs we have discovered that there is a cluster of enlarged lymph nodes pressing on the brachial plexus causing the pain and scapular winging. There is no infection causing the enlarged lymph nodes and the PET scan was normal. We are currently waiting to determine if a biopsy is possible. No dr (orthopedist, neurologist, infectious disease specialist, oncologist, neurosurgeon) has ever seen anything like this and we are at a loss as to what to do. She is in extreme pain and has lost much mobility in her right arm. We have not started physical therapy because the drs do not know the exact problem so they're hesitant to start therapy without knowing a firm diagnosis. Has anyone else ever heard of anything like this and does anyone have any suggestions?

[katep]

I would make sure your team involves a neurosurgeon or BPI specialist. I would think they would remove the lymph nodes before they cause permanent BPI damage but they might not suggest that if no one on the team is comfortable working around the brachial plexus nerves. A BPI specialist would be, though.

Good luck to your daughter. Please keep us updated.

Kate

[Master DIVER TOM]

I can Not speak on the underline cause but I will address the pain issue instead.
When I was born with erbs and a doctor who broke my scapula and shoulder and elbow I learned far to well the issue of pain from birth Driving a semi with erbs and pain was Extreme
I will try to make this post a general statement dealing with the pain issue as both for a birth injury or or dealing with a latter in life issue dealing with pain , I hope to God it helps????
Because I have both torn and stretch nerves it all about potion of a arm a hand and a shoulder and what is posted here . Its about changing position to the reverse point of causing pain Its about pillows its about raising a arm to take the Gravity off a separated shoulder its about moving and taking Tension off a area that cause pain . You can do it by cushion a arm by small pillows a forearm in a ice pack , supporting a hand in a small pillow to . If its a little one a stuff animal in the right spot to take the tension of a torn nerve or stretch one , how and what is use to do this can be found at hand.
I just hope, how I help my pain issue from birth, helps the pain issue with this post and others trying to find pain relief, My worse Enemy dealing with pain came from gravity and tension on the nerves . If you can find a way to re-lacks a nerve or a swollen area it Might help????
I Hope this help??????
Tom

[jmar]

i would skip the neurosurgeon altogether and go directly to a PBI SPECIALIST. from there, ask the BPI SPECIALIST to refer you to a neurosurgeon who can work alongside the BPI specialist. usually, the specialist would know which neurosurgeon can handle working with the brachial plexus area. there is a very specialized training to deal with brachial plexus issues. i know fron personal experience that neurosurgeons have very little knowledge about brachial plexus problems

[jsmith102775]

Thank you all for your suggestions. By doing my own research I've found several BPI specialists across the country. Does anyone have any suggestions? We live in Louisiana.