Radiation induced Brachial-Plexus Peripheral Neuropathy Patients

Hello, 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.

Hi. Yes, I found hand OT was helpful. Looks like we all need a bunch of medical people & techniques to help.

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.

Hi @kirn,

I have RIBP on my dominant hand and arm, but lucked out in that the onset was during active treatment, only 7 months after radiation and while I was still on a chemo pill and seeing my cancer team monthly.

In addition to the PT, can you get some OT?

I found the flossing and such helpful from PT (also the manual lymph drainage and stuff), but the Occupational Therapy was *really* helpful, as that therapy was specific to aiding my fingers and hand to do every day stuff I had lost the ability to do, like grasp and lift and pick up with thumb and forefinger. Also I got tools to start handwriting again.

I am happy to hear you get some relief from the TENs. Unfortunately, I have also tried that and it does not help. In fact, it makes the pins and needles more intense. I do send hugs to you and all the other ladies out there reading this. May God send us all a miracle someday soon.

It’s nice to know I’m not alone. But yes, I’ve been looking for a long time for someone dealing with what I am. If anything, to see if someone found something to help. - Patty

I do not have your condition but do have various chronic pain issues. One area that is quite intermittent but gets my attention is a nagging pain low in shoulder blade in my back. I have found the TENS unit very helpful. Got it on Amazon for 95$ a few years ago. There are electrode patches - just like EKG electrodes. It is very easy to use. Physical Therapists used to use them all the time. It doesn’t make pain go away forever but it can give me a few hours to a day of relief. The electric current that goes between electrodes sends my brain different signals about my pain. My chiropractor said it was a rib. I am grateful the pain comes and goes away for weeks often. My arthritic back pain stays.

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!

Geez, 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 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.