@robin0613, I am happy to see this thread you started as I know no one who has what we have. I am a little older than you. My radiation for breast cancer was in 2001, but it wasn't until 2012 that my hand started going numb (this fits the timeline I've read for RIBN/RIBP). The numbness changed to pain over the years and gradually climbed my arm. I've lost about 70% of function in my right hand, which unfortunately is my dominant hand. What frustrates me most is the loss of ability to write.

I have seen every kind of doctor and tried many treatment theories (e.g. acupuncture, spinal decompression, steroid injections in spine, pain rxs...too many to name). No doctor has been able to give me a definitive diagnosis; RIPN was something my husband found on the web, reading a post/article written by a woman in Canada. I fit her description perfectly. We feel very certain my issue is some kind of radiation scarring; doctors tend to nod in agreement for lack of a clearer diagnosis. Multiple tests (MRIs, EMGs, myelogram) have not pinpointed where exactly the damage is (other than brachial plexus), but a neurologist at UTSW in Dallas says even if they knew, there is no way to repair it. We have also identified some issue with the foramen of my C5 -C6. The best attempt to diagnose was from a doctor who did an EMG for me: "I think you have 1+1=3"...a cervical spine issue + brachial plexus damage + UNK = 3. I've concluded/accepted there is no answer that will 'fix' what I have.

I live with a consistent pain level of 7 ever day and take low dose Tramadol to take the edge off and probably need to take more. I'm thankful we have at least found that helps. What really helped me today was reading your post. I hope you are still following this thread. It comforted me to read that someone else has gone down this road I've been on. I'm sad that radiation caused this in me, but I am GRATEFUL I am still alive to look forward to my first grandchild. I also try to keep in mind "there are worse things in life"...and if you read MayoClinicConnect much, you know that is true. I hope something I've said here is helpful to someone else. I wish you all the best!