radiation-induced brachial plexopathy
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I can relate to much of what you have shared. My treatment was in 1999. In 2019 I started having symptoms and after 2 carpal tunnel and 1 cubital (elbow) tunnel surgeries that didn’t help, I finally had a neurologist figure it out, a few months ago. If you are like me you would just sometimes like a break from the discomfort, let alone the decreased function. I just try to keep myself distracted. And try to remember to be grateful I’m alive.
The best to you
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I have the same story. Surgery, chemotherapy and radiation in 2001. Started having excruciating pain in 2020. It took 1 1/2 years before I was diagnosed with Radiation Induced Brachial Plexopathy. And, of course, it is my dominant hand and arm. I’m finally not having the excruciating pain but arm still feels like it weighs a ton, index finger and thumb tingles constantly. I do some physical therapy exercises but I don’t feel any different but I’m still able to move my shoulder.
It was also discovered I have a paralyzed right diaphragm and right vocal chord.
Then in February 2022 I was diagnosed with Metastatic Breast cancer. Started chemo again with radiation in between. I had 2 chemotherapy treatments left when my husband and I were in a major car accident. I ended up having 2 surgeries, a fractured lumbar, 3 cracked ribs and in ICU for2 weeks!It’s been a year and I’m still recovering but hanging in.
I’m glad to finally find this site to know there are others going through this same struggles I am.I am wondering if a compression sleeve would be helpful. Has anyone tried one? I am very fortunate that I do not have lymphedema.
Melissa1 -
@only4mel - We're sorry to hear about all you've gone through, but glad you've found us! Here you'll find support and help from others who 'get it'.
Besides this forum, you might want to check out the Stage IV forum, where we have many inspirational members who post regularly about their experiences living with a MBC diagnosis.
Again, welcome, and thank you for posting. We look forward to hearing from you soon.
The Mods
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Hi @only4mel , I'm sorry you were got by radiation. It's amazing how it can come back to haunt you after all those years. I've had similar problems much closer to the end of treatment. My acupuncturist used a protocol developed in Japan post WW2 for radiation sickness to treat my radiation induced brachial plexopathy which worked pretty well. However it did nothing for the nerve damage directly in the radiation field and breast lymphedema. At least the LE did not go to my right arm. I was told that a compression sleeve is helpful if you have LE in the arm but does not prevent it from developing.
I have never heard of radiation causing a paralyzed vocal cord and diaphragm but I'm not surprised given how it can lead to fibrosis. Six months after radiotherapy I ended up with radiation induced pulmonary fibrosis which destroyed most of my right lung. Steroids stopped the out-of-control scarring before it reached my left lung. While I can breathe with one lung I have been warned it could start up again so my orders are no respiratory infections, no intubation and no drugs with ILD as a side effect.
You have really been through the wringer with progression to MBC and the serious car accident on top of that. I hope things start to get better. One good thing about this site is that there is always someone who has been through something similar to offer advice and understanding.
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Thank you Maggie. It’s just one day a a time.
LOL. At least I can still play Bingo!
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n case anyone has trouble holding an iPad like I do, since I basically only have use of one arm, I have purchased this holder. It has been an absolute lifesaver! It is very easy to switch directions of IPad and I highly recommend it.
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Hello, Melissa, and thank you for the tip for supporting the iPad—looks like a real find!
In response to your question about using a compression sleeve for some relief, a regular daytime compression sleeve might not be helpful unless you've actually been diagnosed with LE. You don't say whether you've been seen recently by a qualified lymphedema therapist, but that might be a good place to start, because LE is quite common with RIBP. Early stages of LE can be difficult to detect without professional help, but diagnosing it early means it's easier to get into control and keep it that way. The heaviness you mention might indicate LE too.
That said, other women I've met with RIPB have found a night-time compression garment relaxing and helpful. They're quilted (like oven gloves but with chipped foam for the filling), and they're very supportive. Not exactly high style😁, but I wear mine sometimes during the day when my arm's feeling heavy and it takes a load off my shoulder. I'm in the AZ desert, so this is a hot option, but it can be stuffed in a plastic grocery bag in the refrigerator for awhile and it holds the cool very nicely. Again, a well-trained LE therapist could be a help in finding just the right option for you. Do let us know what you discover!
Gentle hugs,
Binney0
