One page summary: Total brachial plexus palsy

In two sentences

Total brachial plexus palsy means all five nerve roots, C5 through T1, are injured. The whole arm is affected: shoulder, elbow, wrist and hand. ¹

It is the least common and the most serious pattern. Early referral to a specialist brachial plexus center matters more here than anywhere else in this group, because surgery is usually needed and because the timing window is measured in months. ²

The numbers, with their sources

• Which nerves. All five roots, C5 through T1, so shoulder, elbow, wrist and hand are all involved ¹
• How common. The least common pattern. Brachial plexus birth injury overall occurs at around 1.5 per 1,000 live births in the United States ²
• Associated signs. Horner syndrome is common, and the nerve to the diaphragm can be involved, which affects breathing ¹
• Why surgery is usually needed. Total injuries more often involve avulsion, in which a root is torn from the spinal cord and cannot recover on its own ²
• The timing. Surgical evaluation is generally undertaken early, with reconstruction in the first months rather than after a long period of watching ²
• How priorities are set. Surgeons reconstruct in an order of functional importance, typically elbow bending and shoulder stability first, then hand function ²

What to do this week

1. Get a specialist brachial plexus referral now. Not at 3 months. Now.
2. Ask whether the diaphragm is working, and whether imaging has been done.
3. Ask whether Horner syndrome is present.
4. Start range of motion today, taught by a therapist, at every joint.
5. Ask when an MRI will be done and what it is looking for.
6. Request the complete delivery records with the records request builder.
7. Ask what the surgical plan and priorities are, and write the answer down.

Questions to take with you

Take these with you. Write the answers down in the moment, because you will not remember them later.

For the specialist surgeon

• Which roots do you think are avulsed, and which may be graftable?
• What is the surgical plan, and in what order will you restore function?
• What function do you expect to restore, and what will not come back?
• What is the timing, and what happens if we wait?
• How many operations should we expect over childhood?

For the neonatologist

• Is the diaphragm working on both sides?
• Is Horner syndrome present?
• Was the collarbone X-rayed?

For the therapy team

• Show me range of motion at every joint and watch me do it.
• How do we keep the joints from stiffening before surgery?
• How do we protect an arm that cannot feel?

You can also build a printable list with the question generator.

Where to read more

The full page on this condition covers how it happens, causes split into what happens even with perfect care and what is associated with gaps in care, signs by age, diagnosis, treatment, outlook, daily life and lifetime cost.

Read the full page on Total brachial plexus palsy

Related pages are listed at the bottom of it, including the events that can lead to this condition and the guides that cover therapy, school and money.