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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 all, it is good to find out that I am not the only one frustrated with the lack of help and support from the medical profession regarding RINP. I had radiation a bit more than a year ago "to clear" breast cancer in the skin that had started to spread from my sentinel node scar and spread over my chest wall. My onc radiation doctor and nurses said it was very targeted and would not affect any other areas. However, it did not get rid of the cancer and after approx 9 months fibroses started to set in, in my lungs and around the Brachial plexus. Fortunately , exercises and physio have brought my lung capacity back and the movement of my arm is almost acceptable now. I started to have numbness in the right pinky and ring finger soon after radiation. I was quite shocked at how casually the doctors remarked about this and never thought or said anything about how to deal with it. Now, about a year and a half after radiation, it is very disturbing. My right, I'm right handed, pinky and ring finger always feel frozen, as if there is a tight band around them. the sensation continues at the side of my hand and up the fore arm. Writing, using a knife, chop sticks, paintbrush etc makes me feel ridiculous....I can't do it!!!!! There is always some pain but it is more like intense pins and needles or as if I have a tight bandage around them. It feels like when your hands have been frozen cold being out side in winter cold and then come in and the hand starts to warm up again, getting blood into those frozen veins!! What amazes me is that the doctors seem to have no idea how to respond to it and they don't acknowledge that it is radiation damage. I am trying to find some professional person who may know how to deal with this. I have a hand physio and I do the excersises but it is not really helping but perhaps it helps to slow down the progression?? Thank you to all of you who share your experiences, Hugs.
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1 ReactionHi. Yes, I found hand OT was helpful. Looks like we all need a bunch of medical people & techniques to help.
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1 ReactionHello, In the first few years I was doing the PT/OT, the flossing, stretching, playing with clay and bands. None of this mattered and the progression kept coming. Nothing helped. I saw a neuro plastic surgeon specialist for the upper arm and hand. The only thing she could offer would be a major surgery of around 14 to 19 hours or possibly even more to clean off the damaged nerves, then put omentum from my abdominal area over the open nerves. She would cut from below my ear down the neck to the clavicle area and over to the shoulder and down, and cut open my abdomen where I have already had surgery years ago for a TRAM flap. It would then be at least a 7-day stay in the hospital. She then said this would be to lessen the pain not take it away, and I’d probably lose more mobility in the arm. I said no, absolutely not. It would probably kill me, especially with my cardiomyopathy and lung scarring. I try to stay positive, at least I got an extra 30 years of life. I’m ready for when Jesus calls me home.