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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyAmyloidosisTeam Member asked a question 💭
New Haven, CT

Hi kids
I have had bilateral carpal tunnel surgeries. With AL onset my hands went to hell. Had trigger finger malformation left hand. Now right hand is involved—fingers 3-5 are contorted. I thought the first two surgeries would put an end to the carpals. Then doc tells me “no”, I can have more. Bummer.

July 21
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A MyAmyloidosisTeam Member

Just about the same here with the carpal tunnel. I had it surgically "repaired" about 15 years ago, and now it's back with a vengeance! This adds another doctor to your list.

July 22
MyAmyloidosisTeam

What a journey your hands have been through — and unfortunately, your doctor is right. With amyloidosis, carpal tunnel symptoms can keep coming back because the underlying cause (amyloid protein buildup) doesn't stop after surgery.

Carpal tunnel release surgery relieves pressure on the median nerve, but if amyloid proteins Show Full Answer

What a journey your hands have been through — and unfortunately, your doctor is right. With amyloidosis, carpal tunnel symptoms can keep coming back because the underlying cause (amyloid protein buildup) doesn't stop after surgery.

Carpal tunnel release surgery relieves pressure on the median nerve, but if amyloid proteins continue to accumulate in that area, symptoms can return. There's no set limit on how many times this can happen. Some MyAmyloidosisTeam members have shared similar experiences, including progressive issues like trigger fingers and tendon problems alongside their amyloidosis journey.

Managing ongoing symptoms may involve a combination of approaches:

- Rest and ice to reduce swelling during flare-ups
- Wrist splints to keep the median nerve from being compressed
- Medications to help manage swelling
- Repeat surgery if symptoms become severe enough

The key is staying in close contact with your care team so they can help manage symptoms as they evolve. The contortion in fingers 3-5 on your right hand is definitely worth discussing with your doctor sooner rather than later.

July 21

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