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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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I don't have any good advice for you, but I have the same diagnosis. My radiation was in 2007, and I was diagnosed in 2023 after experiencing symptoms for a few years. I just turned 50. I have numbness, tingling and muscle spasms - mostly in my hand. I also have a lot of atrophy in my entire upper left quadrant (my previously dominant side). I can't really use my hand anymore but I still have pretty good range of motion in the rest of my arm - for now at least. I don't take anything for the pain because I don't want to take anything long term. It is such a frustrating diagnosis because there is nothing to do to stop the progression.
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1 ReactionI was diagnosed with RIBPN in January of this year. I am 63 years old and my breast cancer was 23 years ago. I have been having problems for about the last 5 or so years. I was on Gabapentin for my RLS (restless leg syndrome) but last year I lowered my dose due to brain fog and ALL the symptoms started. Fortunately I found a Neurosurgeon who knew the symptoms right away and although I had to rule out all of the other possibilities (I wish there was a test) he was able to finally diagnose me. I found this group in researching this diagnosis, which is just slightly terrifying by the way, and am hoping to get some encouragement but also advice. My hand has the neuropathy, my neck and shoulder ache super bad, I have lost strength in my arm/hand and my hand shakes? Does anyone else's? I do not want to go back on Gabapentin because I work in the accounting field and need to be alert. Just wondering if anyone has any advice for the pain. I have my first physical therapy appt next week, hoping to strengthen the muscles to stave off the deterioration for as long as possible.
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2 ReactionsI'm in Minnesota. I've been approved by the state. Just getting into the many product options--confusing at this point--but, slowly working my way through. Thank you for the link! Krin
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1 Reaction@krin
Welcome to Mayo Connect, medical cannabis is discussed in many support groups beyond Breast Cancer. You might want to try this search to find other members who have discussed.
https://connect.mayoclinic.org/search/?search=medicinal+cannabis+cancer
Depending on state you live in, approval and cost varies.
Do you care to share your state?
I'm so glad I found this site. I was treated over 20 years ago for breast cancer---aggressive radiation and chemo after mastectomy/removal of lymph nodes. The loss of feeling in my right hand (dominant) started about 2 years ago. Some of my health care providers thought it was due to arthritis (I have that in R wrist also). I have a friend who is a PM&R physician--she found this condition--RIBP. I finally have may oncologist believing this is it, but educating the medical professionals about it is very frustrating. And like many of you have expressed--the thought that this is progressive is depressing. I've tried gabapentin and nortriptyline. My oncologist just certified me for medicinal cannabis. Interesting process to be officially approved--and the choices of "product" are confusing. Has anyone tried it?
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1 ReactionI don't need anything in particular, but would love to know what you have learned. Feel free to reply here. I agree this is incredibly frustrating. Watching my body fall apart with no hope of improvement is terrible.
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2 Reactions@pamelahanson17 Hello! Yes, I live outside Dallas but not far. Is there anything I can do to help you? Just in recent weeks I have been seen by 3 doctors in Houston, so I have some new insights that I didn't have when I first posted. It's frustrating isn't it... not just the pain, but losing function of my right (dominant) hand.
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3 Reactions@lautwell I just found this message board. I also have RIBP and was diagnosed in October 2023 at UTSW. I had radiation in 2007 and started experiencing symptoms in 2019. I now have almost no use of my left (dominant) hand and the numbness is working its way up my arm. Are you in Dallas?
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1 Reactionmy lyrica is being combined with amytriptyline
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1 ReactionI don't have the pain from radiation treatment. I have had many falls and car accidents that have caused problems with my back. Now I have nerve pain down my right leg into my feet and also I have the trigger finger and I have on my left hand from my wrist down to all my fingers are almost without feeling I take cymbalta and I take Lyrica see. I have pain all the time and lower back pain as well. Any medications besides vitamin bs that people can suggest? Thank you