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,
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Hello there, and I know this thread has been inactive for a while, but in reading your comments this evening, I feel like I have found my people! I developed radiation induced brachioplexopathy three years ago, and it has completely paralyzed my right arm. I’ve taught myself, using first grade tracing books, to write again, and have learned to do most things with my left arm. I also have lymphedema in my right arm, as well as two chronic Radiation wounds that need constant treatment. I also live with stage, four metastatic breast cancer, which is currently dormant, but that’s always a gamble.
I can’t believe there’s not much information out there for us. It seems much more common than I would’ve ever anticipated. I would love to hear about compensatory tools that some of you use for household tasks, such as opening cans, cutting vegetables, baking, reading books in bed, etc. This disability has caused my life to completely change, including my wardrobe. I mostly wear large sweatshirts and jeans, and buy a lot of prepackaged food because I’m struggling with the fatigue and of course, partial paralysis. I’m so very happy to know that this forum is out there, and that other women have been and are going through this. Thank you.
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Hi @jojobird , I'm so sorry that RIBP paralyzed your right arm. You have done well to learn to use your left so effectively. I have some weakness in my right arm and am gradually losing grip strength but the eventual progression and severity is one of those things that nobody can predict. This radiation damage can appear many years after treatment which makes it so insidious. I'm in a clinical trial run by my RO which just collects data on LE and other radiation aftereffects but he will refer me to any medical provider that I think might help me.
I'd suggest getting an appointment with a physical medicine and rehabilitation doctor (physiatrist) who can test you and give you a disability rating so that you are eligible for specialized OT. As far as I know there is nothing that can be done once the fibrosis has set in but a provider in that field would be up-to-date on what new interventions might be available. There are OTs who have done advanced training in helping those with amputation, brain damage and other limb damaging diseases. While RIBP is relatively rare it results in the same outcome. These OTs have the background knowledge to find you adaptive devices that will help and work with you to figure out how you can cook and do other activities. The butchers behind the scene at my grocery store will cut meat or fish up as requested at no extra charge. There are dietician students from the local college who set up tables in the produce department as part of their training. One cut up a fresh pineapple for me (everyone tends to ignore them so they are happy to do anything.) There are adaptive cutting boards, jar holders and can openers available. I use a beer bottle opener to break the seal on every jar so that I can open it. If you google including "for amputees" you can see what is available that might suit you. An OT would probably have the best recommendations after you are evaluated.
While severe radiation damage does occur is it relatively rare and consequently little research is done. There were two clinical trials proposed for RI pulmonary fibrosis (in China and Mexico) which never ran because they couldn't enroll enough participants. I use inhaled steroids to control my cough but my pulmonologist is prescribing the dosage that was proposed in those trials which were hoping to prevent progression. He has no idea whether or not it will work but I have to take the meds anyway and I figure that if two unconnected researchers thought this might help there is no harm in trying.
Connecting with groups that have your problem (such as those with an amputated arm) can sometimes be helpful in finding resources. I joined a large online pulmonary fibrosis support group where almost all members have IPF, a different fibrotic lung disease with different treatments, where I learned about pulmonary rehab. That helped get me off oxygen more quickly. There were 10 members with RIPF (down to 6 now.) One died of skeletal collapse due to high dose steroids, another tried Ofev which is meant to reduce progression in PF without success, and the others went from cancer. While this was not positive news it was informative (I really watch my steroid load and have annual DEXA scans.)
There are clothes available if you want something more stylish than sweats. They tend to be marketed to older women but you can skip the old lady prints and find things that actually look good. There are all kinds of pants, shorts and skirts with elastic waists in materials that are easy to care for and look professional, casual or dressy (ponte knit, cotton blends, denim, linen blends.) There are easy to put on somewhat relaxed tops with wide necklines or subtle elastic at the neck including polos and popover blouses that will hide the elastic waist of your bottoms and cover your arms. There are stretchy all in one tops that look like a sweater with a tank top. When my mother was in a nursing home in a wheelchair the young aides always vied to be the one to help her dress since they were able to put together cute outfits from the easy dress clothes I bought from Penney's, Macy's, Target and Walmart (you can shop online when you know what works for you.)
Cancer and all the other more common SEs of its treatment are bad enough but this radiation damage just adds another huge layer of problems to your life. The part I hate the most is having to live like I'm immunocompromised (to save what still works of my lungs) which isolates me from other people when activities can't take place outside. It's summer now so I'm making hay while the sun shines. We are a small group here but at least we have people to connect with who understand.
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Im going to jump into this subject. I had 33 rad treatments up to my collar bone that ended in June of 2022. I had one positive lymph node so this was the recommended rads treatment. About 2 months after rad treatments ended, I started to develop a tightness around my neck. It wasn't too bad, but it was there. I had a follow up appointment with my RO. I asked him directly about this neck tightness. His answer "it's not due to radiation as I only radiated up to your clavicle." Ok, so that wasn't it. I didn't know what it was and just ignored it thinking it would go away. I just went about stretching my neck. It also felt like I was having trouble swallowing a little like some food was a little stuck in my throat. I went for a CT scan and nothing was found. Ok. Maybe a digestive issue. Tried scans for that. Nope, nothing there.
About a year ago, my neck muscles (really my scm muscles) started getting very tight. To the point that I feel like I'm being strangled. It's not pain but extremely tight. To make a long story short, I waited 6 months to get an appointment with a neurologist to try Botox (I have TMJ as well and the tightness has made my TMJ much worse.) The Botox did nothing. I vaguely looked at scm muscle release surgery they do on toddlers for torticollus.
I then started going to massage therapists. No relief at all. I went to 2 different PT's. No help. I tried myofascial release. Nothing. Dry needling. Nada.
I've spent about 5k out of my own pocket trying to resolve this. Along the way, I thought this must have something to do with my cancer as this started 2 months after treatment. But I dismissed it as MY RO SAID NO, it can't be due to radiation.
Last week, I finally went to an Orthopedic surgeon who took an X-ray. He said my neck and spine were fine. But he HAD heard of this tightness occurrence after rads for head and neck radiation. And the X-ray showed something. (Not tumors).
That was it. I contacted my RO with my symptoms and he told me to come in. I have an appointment tomorrow and I will not be nice. I'll have to get an MRI to confirm.
Now I've read about Pentoxyfilline and Vit. E which can help, maybe. But you have better success if you start early. I COULD have started on it 2 years ago when it first started and I mentioned it to my RO. Saving me dozens of scans and Doctors, therapists, etc. I read if you start later, it can take up to two years to maybe have a maximum effect of 69 percent.
Guess what goes below the clavicle? Your scm muscles. Did I go to school for 10 years to become a radiologist? No. Did I have to figure all this out myself? Yes. Am I angry this could have been lessened had I started treatment 2 years ago? You bet your ass I am. Now I have to try to find a Doctor who may need to do surgery to release my scm muscle as an adult.
I was just going to say that I have no words, but apparently I do. My chest is tight, but not that bad. I exercise it every day.
This is also an education, I hope, for anyone who might encounter this problem too. Don't let these Doctors off the hook and tell you it can't be. It can.
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@hippmark , I'm sorry you, too, were got by radiation. At least my RO admitted rads caused the damage it did. The scarring pattern in my lungs is specific to radiation induced pulmonary fibrosis so there was no way of denying this. Also, a month after I finished treatment my dentist noticed what she thought was a swollen lymph node in my neck. I had my RO check it (he was the next doctor I had an appointment with) and he told me it was my thyroid. I had a thyroidectomy for a goiter three years previously so he got out my rads plan and saw there was some scatter to the thyroid. He didn't think the "low" dose should have caused embryonic cells to regrow but I now have a goiter almost as large as the one removed which is deviating my trachea; I need repeat surgery. My bracheal plexus nerves and esophagus were also in the scatter pattern while my lung got a larger dose. My right arm is weak but still functional and I'll need to wait 5 - 10 years to see if I develop esophageal or lung cancer.
I asked my pulmonologist why I was one of the unlucky 0.3% who ended up with RIPF and was shocked when he said that a lung cancer RO would have seen the red flags in my medical record (upper GI bleed and Barrett's esophagus) and recommended against radiation. I guess I had been aspirating stomach acid and pepcin into my lungs. I had preclinical ILD so just a bit of radiation caused a huge amount of damage. I wish these specialized ROs would communicate with each other.
Like you I had one positive lymph node. The benefit of radiation to prevent a local recurrence comes nowhere near to making up for the massive health problems it caused. Ask your RO for a copy of your treatment plan and records to show to doctors treating the resulting problems. Since we have had to acquire all this medical knowledge by reading print off a few of those scientific papers to show him in the event of a denial.
From what I have read pentoxyfilline and vit E sometimes work on breast tissue fibrosis but have no effect on the loss of lung tissue to scarring. I don't know if they would help the scarring in your scm muscle. Unfortunately all the RO can do is refer you to other doctors to try to repair the damage. At one point my pulmo thought that there was a good chance the RIPF would kill me. Because of this my RO is sympathetic to me and hopefully now considers the potential danger to other patients. I'm in one of his clincial trials for lymphedema so he can't forget about me.
I hope that you get some help at your appointment and that your scm muscle can be repaired. Let us know how it goes.
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Thank you for your response. I am so sorry for all your troubles as well! I will ask for the plan. Oddly enough, my cousin was a radiation tech and she told me that radiation does scatter, even as careful as they are. I can't find anyone anywhere who has ever mentioned this who didn't have head or neck cancer. I pray there is something that can be done, even if that means more surgery. I can't live feeling like someone is strangling me 24/7.
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This is going to be a weird response, so be prepared! I did see the RO yesterday. He was shocked to say the least. He agreed that I definitely have extreme tightness in my neck. However, he said the reason he did not pay attention to the tightness I mentioned two years ago is that he has never seen or heard of anything like this. I myself, after 2 years of research also never found anyone with these symptoms after radiation of breast up to clavicle. He wants me to start Gabapentin and then wants to find a Doctor who will do Botox on my complete SCM muscle.
As it so happens, I found a Medical Intuitive (I believe in that sort of ability) and had my first session with her last night. She told me my tightness is NOT due to radiation. And I do not have fibrosis. I won't go into too much detail. However, she feels it started in my shoulders and progressed into my scm muscles. My tightness is more in the upper part of my neck, not my lower. She suggested acupressure with no massage as it flames it. To start in capsaicin, use ice, not heat. Take the GAB for a shorter time and maybe Botox. She said she felt it started due to trauma. Uh, cancer anyone?
I must admit, none of it made any sense to me, meaning the rads. I found no one, anywhere with this problem.
Cancer is indeed a journey. So yes, she feels this is due to the trauma of cancer. I cried my eyes out in frustration in the RO's office yesterday, just from the stress and frustration. He has scheduled me for an endoscopy for a catch I feel in my throat that I already had a CT scan on almost 2 years ago. So, there is that.
If you are interested, I can keep you updated in a couple of months. I am NOT done as I continue on this unbelievable cancer journey!
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Hi @hippmark, I'm glad you got some information on possible ways to loosen the tightness. The cause doesn't matter so much as solving the physical problem you have.
My RIPF has a scarring pattern in the lung which is specific to radiation damage. Sometimes a lung biopsy is required to identify the type but not in my case. It was unusual in that I didn't have earlier pneumonitis symptoms when it could have been cured by prednisone. My thyroid was "non palpable" at my endo checkup a month before my bc diagnosis. The dentist noticed the swelling a month after rads had finished and a month later my RO confirmed it was my thyroid. He had been checking my lymph nodes all along so he thought the lobe growth from 1 cm to 8 cm in six months was probably a reaction to radiation scatter. My original goiter was triggered by pregnancy but took 30 years before it grew to that size. I'm trying to set up an appointment to see if a thyroid surgeon can use radiofrequency ablation to shrink it but I'm not optimistic that it can be done for a variety of reasons.
Fingers crossed the gabapentin, acupressure or botox will help. It's also a good idea to have an endoscopy to check for any physical damage just to rule things out. Hopefully you'll be able to check back in a few months with good news.
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Thank you. I wish you so much luck and hope. Hope is what keeps me going. I'll check back in!
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