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Radiation induced Brachial-Plexus Peripheral Neuropathy Patients
I am looking for other post-Breast Cancer w/Radiation to the Breast and Lymph nodes, suffering from RIBN (Found this acronym from a UK Paper). Let me say I’m sorry for your pain.
My Story: I am 65 now, I had L Breast Cancer in 1997, followed by a Stem Cell Transplant at Fred Hutch in Seattle, then Radiation to Breast and lymph node area that had 3 bigger tumors . 2006, I woke up to severe burning pain down my left arm into my fingers. I was sent to my 1st neurologist that did not have a diagnoses, I was sent for hand therapy for 2 yrs even though I knew it was coming from the shoulder (But I learnt some good hand stretches). In the meantime, I found an Angel, in a Therapeutic Massage specialist, she found the knot under my L shoulder blade, (Brachial-plexus) and immediately relieved my pain. (We would find out later, the relief was at first good for months, then like now weeks to days. I was told by Drs my muscles are loosing blood because a neuroma is attached in the shoulder area.
I’d go to 2 more Neurologist, the final one took me 7 months to get into at UWMedical (with the push from my Oncologist). By then I’d lost over 25% of the dexterity of my hand. After tests and diagnoses, I started Ot/Pt to learn how to keep my L Hand/arm stretched, dexterity exercises, and how to use my right arm to compensate for my left, trying to clip my nails on my R hand is a big chore (I thank God I am Right handed). I was told that most PN stops at some point, but mine was moving, and still is. No surgery would be worth the risk of loosing nerves I need vs the ones that are DOA. And what I could loose.
Today, my L hand feels like I have an extra small rubber glove on and stretching my fingers is a chore). I have pain up to my elbow and a knot in my back (that was a pin point last June) and now constant. I do find getting into a routine that gets me up and moving, my meds (Gebapantin allergy, so I take 90mg of Cymbalta, Tylenol and Topically I use lidocaine and a roll on CBD oil (being 65, I put off for 3 years). With constant movement and stretching, I’m working through it. I volunteer at a Food Bank.
Now I have a Palliative Pain Specialist, my Massage Therapist, Oncologist, PT/OT and neurological team. And still my PN is moving through the Nerve Roots and Path. My hand is at 80% loss, pain runs down arm from neck sometimes like I’m shooting flames from my fingers, and some days my face is numb when the weather is dramatically changing, I’ve noted Barometric Pressure causes my pain to increase. My pinky and ring finger are 100% numb. If my hand gets cold, it’s very hard to regain warmth. Most people that know me, know why I wear one wool glove in 80 degree weather. They know the weather is changing.
I’d love to start a support and information thread. I don’t know anyone with this, it’s hard to Describe my symptoms. Im blessed with friends and family that give me empathy .
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Hi Robin,
My OT therapist discovered this thread and, reading through it, I’m wondering how you all are doing.
I am experiencing something similar, but due to lungcancer radiation to the chest and clavicle area in 2006. 15 years later my my clavicle started swelling and going necrotic from the radiation. I was advised to have surgery to remove the necrotic tissue, but the year after the surgery, I started feeling numbness pins and needles in my right hand pinky. Since then I’ve been going through more or less the same as you. I was referred to a plastic surgeon who specializes in the brachial plexus area. He assured me he was confident he could decompress my brachial plexus nerve by cleaning up some of the scar tissue. When I woke up from anesthesia, I couldn’t bend my arm at all anymore. Not having use of my right arm, besides my right hand very much complicates things. I can’t drive, for instance, or bring anything up to my head even if I could hold it with my fingers. My arm has been becoming progressively worse to the point that the numbness is all the way up to my shoulder. Nobody has any solutions for my condition. The only thing I’m wondering is whether I should try stem cells.
Looking forward to hearing from you all.
@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!
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1 ReactionTengo neuropatía periférica que comenzó en uno de mis pies avanzó sobre el otro y ahora tengo bastante insensibilidad hasta la rodilla pero también reconozco que la estoy perdiendo de la rodilla para arriba. Tuve cáncer de mama, radiaciones localizadas Y al poco tiempo empecé con grandes calambres y de a poco ,falta de sensibilidad en el empeine del pie y después dificultad para manejar mis pies ;esto fue avanzando y se complicó con la falta de equilibrio que voy perdiendo. Las radiaciones las recibí a principios del año 2006 y allí se manifestaron los calambres. Pero gracias a Dios no tengo el mínimo dolor pero sí me cuesta mucho manejar los pies y ya uso bastón tipo trípode. Mi equilibrio es casi elemental Pero no parejo.. la causa no me la saben decir. Solo sabemos que poco antes de empezar mis calambres había recibido rayos. Pero nuevamente aclaro que estoy agradecidísima porque no siento el más mínimo dolor. Aportar datos puede ser útil para todos, por eso estoy publicando esto. Gracias
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2 ReactionsAsk oncologist to confer with the neurologist. Someone has dropped the ball.
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1 ReactionIn 2004 I was diagnosed with advanced breast cancer, had chemo, lumpectomy, then radiation in 2005. This was at Baylor in Dallas TX. Yes, they saved my life! But in 2017 I started having tingling in my ring finger. I was in Idaho by then and my GP said just put a towel under my arm when I'm working at my desk. Things got worse, so I went to a hand doctor who said I probably had carpal, also arthritis (after he took exrays); suggested I use a brace for carpal. Went back, he ordered a neck exray, then referred me to neurosurgeon who said I my hand issue (which now was into ring and pinky finger and that side of my hand) was because of C7-8 and T1 disks compressing nerves. Did not recommend surgery, wasn't really interested in doing anything for me. Condition got continually worse, went to 2 other doctors, said hand surgery would be elective and because of Covid would have to wait. 3 years after that went back to neurologist. He ordered MRI and EMG. EMG doctor did tests and said he was almost 100% sure the issue was generated from the brachial plexus area from radiation. HE order cat scan and another MRI of brachial plexus area. The neurosurgeon's PA called me when results where in and said it looks like tumor on lung apex and in the brachial plexus. Scared the hell out of me as he starting going on about large cell vs. small cell lung cancer, I need a biopsy, etc. He ordered a cat scan. I asked my primary care doctor to find me an oncologist in light of this news. I saw the oncologist who did not feel it was cancer, looked more like scarring. He ordered PET scan and ultrasound. Results came in. No cancer, just scarring. Called neurologist to see what can be done (surgery, PT). That was 3 weeks ago. No call back. No communication. Nada. I'm lost now.
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2 ReactionsI am so sorry for the chaos around your health. My experience was never so severe as yours, but I found a marked difference in attention to my overall needs when I was transferred to a PA for one visit. I never returned to the oncologist, nor to the radiologist. Physicians Assistants may be a place to start.
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2 Reactions@robin0613 and @pjsfla, just checking in. How are you doing?
That was supposed to read stem cell transplant. I tried to edit it but wasn't fast enough..sigh.
If I may ask, what was the system cell transplant for or supposed to help with and did it?
Thank you so so so much . BIG HUGS to you , seathink . In regards to the oncol & crew , I feel like I am out here in Cancerworld alone . And , since my family has been so blessed healthy , and no ones had cancer , they are squeamish if I mention any of it ,so I haven't had much guidance with stage 4 , or much " I know how you feel " . My own Mom doesn't even know the truth . So TY TY TY for sayin that & being there !