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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'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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2 ReactionsI 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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3 ReactionsI 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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3 ReactionsHello Robin and others who are suffering with this side effect from radiation. I am 62 years old (63 in mid June). I was diagnosed in 1995 with stage 4 breast cancer. I had 12 of 24 lymph nodes positive and after a modified radical mastectomy (left side), I still had cancer on the chest wall. I went through an autologous bone marrow transplant followed by the radiation. Then 10 years later in 2005 I was diagnosed with heart failure. I had a 15% ejection fraction. Within a few years, I strengthened my heart to low normal 50% EF by walking only 30 minutes a day and a low sodium diet, and medication carvedilol, lasix and potassium. I still have a cardiomyopathy, but I had come so far with God’s grace. Then 10 years after heart failure, 2015, I started noticing tingling in my fingertips while doing my fast walking. Since then it has been a slow progression of numbness and tingling and pain with loss of using my hand/grip and finger strength and arm use. This is horrible, painful and depressing. Over these last 10 years I have seen so many specialists and even a surgeon, and it is killing me that there is nothing anyone can do. More pills but this only helps with the pain and there’s other side effects that would go with that. The last surgeon said that they could help with pain but with probable more loss of function of the arm. Oh, did I mention the surgery would be umpteen hours long and with my cardiomyopathy I’d have a higher risk of dying. I have been praying since the symptoms started, 10 years, and after beating the stage 4 cancer and heart failure, I’m having a very hard time dealing with this knowing now it cannot be cured, at least to the point where there would be no more pins, needles, pain, lymphedema, etc. I forgot to mention the lymphedema. That is not too bad, and I can handle that. Just being in discomfort at varying levels All The Time is so hard. How do you all deal with it? Any advice? I really need help. I’m from SE Wisconsin area. Is anyone close to this area? I look forward to hearing from someone. It’s been awhile since anyone posted here and I am so hoping there will be a reply.
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1 ReactionGeez, it sounds like you are really going through it with the distant side effects of radiation.
Please allow me to tag a few members from this discussion for you.
@lautwell @pamelahanson17 @krin
Maybe they will have some insights into how they deal with these same challenges.
Hello all—especially Patty. I I live in Mpls/St Paul area & have docs in MHealth system. I find that most doctors have never heard of RIBP. So frustrating that there seems to be no real help for this condition. Last I checked in I had been approved for medicinal cannabis. I tried for awhile but found not at all helpful. There are good days & bad days. I’ve also tried gabapentin & amytriptaline-not helpful. Also an array of herbal meds suggested by a pain management specialist —expensive & not helpful. PT has been somewhat helpful—“nerve glides” & “scapular punch”. I’m now in a new round of doctor appointments—getting in to see specialists takes so long. Have an appt with a Neurologist mid-June (on wait list which moved original appt from Aug 15 to Ie). He is supposed to be expert in peripheral neuropathy. Also possible appt with a physical med & rehab doc who works with cancer patients. My PC thinks I may have RA—my affected side wrist is very misshapen & painful (looks out of joint)-does anyone have that problem?
One thing that helps—my daughter crochets gauntlets for affected hand. My PT thinks it acts as a kinesthetic distraction so I’m not constantly aware of the strange numbness & pain. Also keeps my wrist warm which helps.
I’m back to using ibuprofen for pain & trying to walk 20 mins a day (though my implant knee doesn’t like it).
To all of you—keep trying! Keep smiling-there are several of us who know what you are feeling!