radiation-induced brachial plexopathy
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Results in from core biopsy and metastatic inoperable breast recurrence. Nerves and arteries are tangled around the lump thus the nerve symptoms and pain. Thanks to you who offered encouragement and best wishes to all of you as you wind along your paths individually and together. ❤️
Marisn
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Marian, you and your path will be very much in my thoughts going forward. Not the news we wanted, but I'm guessing a plan of attack will soon be launched, and I'm praying it will be every bit as strong as your spirit. Wish my own best wishes were something I could pack in a box and ship right to your door, but please accept them anyway via cyberspace. Holding my breath in anticipation of a great treatment plan, relief and healing.
Gentle hugs,
Binney0 -
IMPORTANT NEWS FOR THOSE WHO HAVE BEEN TURNED DOWN FOR ON-GOING PHYSICAL (OR OCCUPATIONAL) THERAPY FOR ISSUES RELATED TO RIBP (INCLUDING ON-GOING LYMPHEDEMA THERAPY) BECAUSE OF INABILITY TO SHOW IMPROVEMENT!!!
The CMS (the board that regulates Medicare benefits) has clarified that IMPROVEMENT is NOT a valid criteria for continuing therapy. Many here have had their therapy ended because improvement could not be shown in the case of RIBP, but it is now established that therapy needed for MAINTENANCE of current condition or to PREVENT OR SLOW DETERIORATION will be covered. The new guidelines, called the Jimmo Settlement, can be seen here:
https://www.cms.gov/Center/Special-Topic/Jimmo-Cen...
Lower down on that page you'll also find Frequently Asked Questions. Here's an important one, but check them all out:
Q7: Can a patient change from an improvement course of care to a maintenance course of care, and vice versa?
A7: Yes. The therapy plan of care should indicate the treatment goals based on an individualized assessment or evaluation of the patient. Skilled services would be covered where such skilled services are necessary to maintain the patient's current condition or prevent or slow further deterioration so long as the beneficiary requires skilled care for the services to be safely and effectively provided. The health care provider must continually evaluate the individual's need for skilled care, as well as whether such care meets Medicare's overall requirement for being reasonable and necessary to diagnose or treat the individual's condition, and make such determinations on an ongoing basis, altering – on a prospective and not a retrospective basis – the treatment plan and goals when necessary.
This new ruling can make lymphedema control and on-going occupational therapy help possible, and I'm hoping this will brighten the outlook for many dealing with the challenges of RIBP.
Hugs,
Binney0 -
Yippee on this new ruling!! Thanks for posting that Binney!!
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Chisandy, I couldn't agree with you more. What we repress, we obsess. There is no shame in choosing not to suffer.
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How does one know if it’s radiation induced? I was never warned that radiation could cause lymphedema, and told that since I only had 2 nodes removed, I was at very low risk, and radiation would reduce my risk of recurrence from 10% to 1%. So I agreed to it and now, starting 6 months after the end of radiation, I started developing visible and palpable lymphedema.
I also wonder whether a bad fallbackward in December, which resulted in a badly pull pectoral muscle could have triggered it
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Hi, Natsera,
Brachial plexopathy is not the same thing as lymphedema, but people with brachial plexopathy do generally develop lymphedema, which is why this thread is here on the lymphedema board. Brachial plexopathy means the radiation has damaged the brachial nerve, which can result in gradual paralysis of the arm. It's a very rare condition and fortunately not at all what you're describing.
What you're describing is lymphedema, which is a result of trauma to the lymph system, either by the surgery itself or the radiation that sometimes follows. Once the lymph system is compromised by the surgery and/or radiation, then it can be triggered by an injury like your fall, or even a more minor event (like an insect bite or hang nail), or anything that might overload the lymph system. Your new lymphedema may not be related to your radiation at all, since you also had surgery that affects the lymph system.
The most important thing is to get good help quickly, as lymphedema is easier to get into control and to manage over time if you catch it early. Any member of your healthcare team can write a referral for you to see a well-qualified lymphedema therapist. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified...
Do keep us posted, please, and tell us how we can help!
Gentle hugs,
Binney0 -
Natsera, When I saw a Radiation Induced Brachial Plexopathy Specialist, Dr. Linda Yang at the University of Michigan Hospital approximately 6 years ago, there was a tell she spoke of I never forgot. Although my EMG did not reflect the nerve pain, muscle twitches, muscle cramps, and loss of motor control in my left hand at that time, she told me she believed I did have RIBP. She reached for my affected hand and pointed to the web between my forefinger and thumb. She told me, "Often the first thing I begin to see is the flattening and thinning of the thickness of this web.".Then she had me compare both webs of both hands. My left was definitely thinner and flatter." Today when I squeeze it with my good hand it is somewhere between the thickness of a piece of paper, or card stock. Another thing I can share from my own personal journey with this is even though I also have lymphedema, it is no longer measurable do to muscle loss (unless I have a severe flare). For example, my left affected wrist is about 75% the circumference of my right. I hope this helps. Everybody is different. And I pray you never have to deal with it. Cancer alone is more than enough.
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Natserra, I just wrote a really long reply only to see the "post has been removed by the community". I will try once more because I want to help. I saw a Radiation Induced Brachial Plexopathy Specialist, Dr. Linda Yang at University of Michigan Hospital, approximately 6 years ago. There is a tell she described to me I have never forgotten. Although my EMG did not reflect the nerve pain, loss of motor control in my left hand, the cramping of muscles, etc, at that time, she told me she did believe I had RIBP. She said the first thing she usually sees is a flattening of the web between the forefinger and the thumb on the affected side. Then had me compare both hands. Today, that web is somewhere between paper thin and card stock. Another thing I can share from my own personal experience, despite the fact that I also have lymphedema, it is no longer measurable unless I have a severe flare. My left wrist is approximately 75% the size of my right in circumference. I hope this helps and I also pray you never have to deal with it. Cancer alone is more than enough.
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I was just diagnosed with radiation-induced brachial plexopathy. I went to ER because I thought my arm was broken. My elbow to wrist is so painful I wanted to cut it off and my hand varies between numb and burning pins and needles. The ER doctor told me to take lots and lots of marijuana and tell my neurologist about it. I'm seeing a neurologist because I started having seizures (yay me). The neurologist diagnosed RIBP and is sending me for an EMG and MRI. My family doc thinks it might be caused by arthritis, but the prognosis is the same - progressive loss of the use of my hand and arm:(
The anti-seizure meds may help once I get up to a full dose. other than that it is Lyrica or Gabapentin I guess. Marijuana helps a bit but not much. Does the pain eventually go away?
I developed lymphedema in the last few months also, but now I find I cannot wear my sleeve. It irritates the already irritated nerves and I end up riping it off after a few minutes. I used to be able to wear it for up to 12 hours.
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Gina, I'm so sorry about this news, but glad to hear your medical team is already on track to help you find treatment. Long-term OT intervention can help maintain mobility and possibly ease the pain as well, especially if you can find someone with experience. The pain aspect of RIBP is so individual--some never deal with much pain, and for some the pain does ease over time, but there's no predicting how any one person will respond.
More information that may be helpful here:
http://www.stepup-speakout.org/Radiation_Induced_B...
I sure hear you on not being able to tolerate the compression sleeve. For some the lymphedema wrapping is more tolerable, since it can be adjusted to individual needs. And night garments are usually tolerated much better, and in fact can provide helpful support that eases the discomfort. In case you're not familiar with night garments here are some examples:
https://www.lohmann-rauscher.com/us-en/products/so...
Please keep us posted and let us know what you discover. Tell us how we can help!
Gentle hugs,
Binney0 -
Thanks Binney4. I'll look into the night time sleeve.
Do you know if water therapy helps? I just sold my house and i'm trying to decide if it is worth the extra money to move into an apartment complex with an indoor pool.
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Gina. I'm not well versed in RIBP but water for lymphedema will be excellent choice especially if your limited in garment wear. Water acts like a full compression garment so if your skin can take it, daily pool use would be top notch. Stay at deep enough level to cover your shoulders and walk for exercise. Don't tire your arm out though.
I was a participant in a water lymphedema instructor class. Instructors measured us before we went in water, did special exercises then remeasured. We reduced our arms size within one hour. Of course you will fill up with fluid again if your not wearing sleeves and gloves/ gauntlet. But it does move that lymph fluid out preventing stagnation. Pool will be your best defence along with what Binney said. Keep in touch.
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Thank you hugz4u. I was going to aquafit, but it is difficult now that I can't drive, so a pool in the building seems ideal.
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Gina. Watch those jugs or weights in water if your not use to it. You could cause a Lymohedemaflare up. They are very hard on us le girls. Many of us don't use the weights for aqua fit but still take the class or don't push pull weights hard or only do a few at a time.
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Gina, thinking of you! Apartment hunting is no fun--hoping you've found a place that will work for you. How are you doing with the pain management? REALLY hoping you're seeing some improvement with that.
Gentle hugs,
Binney0 -
Hi every one. I am 16 years into the battles with the war on cancer. I had squamous cell cancer of the tonsils. I never had them removed as a child. It travelled to my right side of my neck as nodes that I could feel, like lumps under my skin. I went to see an ENT doctor who diagnosed I had cancer. He said we will go in and take out the nodes, do chemo and radiation. I woke up from surgery to my horror to a full neck dissection. The removal off the whole muscle of my neck. During the forth session of chemo I had enough, I told them pull the IV out but finished all 33 sessions of scatter radiation. Fast forward to 2014,I had complained through the years that I had pain in my carotid artery, treated with antibiotics each time. I now was in the ER having a stroke! The radiation caused severe damage to my carotid and shrunk it like shrink tubing to the thickness of a hair. I had just finished 28 of 30 sessions in hyper barrack therapy for skin cancer caused by the radiation. I had an open 3''wound were they removed the cancer earlier and could not suture me up, the skin was to tight from the neck dissection. Then while in the ER for the stroke I had two seizures, which blew out the discs in my neck. One year later I was having neck surgery. They inserted a device in my back to expand the skin to grow my own skin flap for the surgery to remove all the cancer in my neck. Again I woke up to my horror with 10 discs fused, three titanium rods and 26 screws holding my spine in place. The skin graft was a success. Which brings me to my latest diagnoses RIBP! The pain I have endured has been really bad and is getting worse. I have lost the use of my right, arm, hand and now am cold intolerant. My pain doctor gave me a prescription to visit this site! After reading the stories, I have many of the same things going on as a lot of you and I am looking for more answers. I am selling everything , loading my RV and leaving at the end of the month. My last adventure and going to warm weather. I never smoked, socially drank, was a snow board instructor, skier, 55 year motorcycle rider and just sold my Harley. Like one of the other writers wrote I can still walk my dog. My biggest question is how fast does it progress and what else does it effect. I just went through blood pressure issues and one writer answered what it might be. Sorry to be so wordy, I needed to tell my story. Thank you all for sharing
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Wow so glad your doc referred you here to connect with others although I’m sure you wanted a,please solve my problem answer from doc! I hear you on how you led a healthy lifestyle. Was encouraged to excel in the Olympics in early teens so I know what active is. totally sucks.
I really am in dark when it comes to this but if you could private message some of the girls in this thread they may answer and you can band together. Hopefully Binney our expert will come along. Google the best website she helped develop called stepup-speak.org. I bet there is something in there on ribp.
Everyone is different with this condition and progression.
Sounds like you will make your life easier by paring down and going on adventure. Good for you. When I was diagnosed with BC I got rid off everything to simplify so I could look after myself and family better. All the doodads went out the window! Best thing I ever did.
Walking the dog is a good thing. It gets our minds off our sickness and out the door. As long as you can you should continue with doc consent of course. Btw you are welcome to rant here although most of us don’t have ribp we totally get the frustration level you’re in.
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Ryder, welcome! Really sorry for the reason that brought you here, but glad you found us. It sounds like you've had an entire history of nasty surprises, not the least of which is developing RIBP. It feels lonely, especially when you don't know anyone else who's dealing with it. Hoping you'll be able to "meet" some new friends here.
Progression is difficult to predict, as it's quite individualized. You don't mention lymphedema, but it is unfortunately a very common adjunct to have with RIBP. If you're getting some occupational therapy or physical therapy, that can help by keeping your arm moving, which helps to keep the lymph system pumping. Recent legislation makes it possible for Medicare (and other insurance) to cover on-going OT and PT even in situations like this where maintenance is the goal, without having to prove "improvements" in order to be covered. 'Bout time!
More information about RIBP--patient experience, coping ideas, research results--here:
http://www.stepup-speakout.org/Radiation_Induced_B...
I'm loving your plans for adventuring! You go! Please do keep us informed, and tell us how we can help.
Gentle hugs,
Binney0 -
Long Roomy Kaftans for RIBP and similarly afflicted Taller Sisters
https://community.breastcancer.org/forum/149/topics/867116?page=1
I will list some for shorter members when I feel able.
Peace and Blessings, All.
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Thank you all for replying and for the info. Sorry I haven't got back here sooner. I explored all over southern Utah in my RV with Caymen my St Benard shepherd mix. Met a lot of nice people, saw some of the most beautiful places imaginable. In my journeys I had days were I felt my job on this planet wasn't over yet. I helped two French ladies,who had a US map in French ,I gave them an extra map,laid out their trip and in a heavy accent said we new an angel would come and help us ,gave me a hug and left. I was put in places three times to help people,sure gave me a sense of purpose. Made me stop my complaining in my head for awhile. Weather drove me south, I am dry camping near Wickenburg Arizona,here for a while. The progressive Ribp has come way faster than I thought. Hiking, day to day living and exercise have helped. I had a dream few days back that I met someone (lady) with Ribp except she had it in the opposite arm and together we worked it as a team. Funny how the creator ,univesrse , puts thoughts and situations to keep you positive. I work at being positive every day. I know all of you must struggle with this also. Again thank you for your support.
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Ryder, what a heartening report! And you're so right about there being so much purpose left when we look around with anticipation. I love your dream--what a metaphor for the kind of help we all need to offer each other.
Onward!
Binney0 -
thanks for the information. I'm new to RIBP.
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miss302, I'm so sorry for this new development. Hoping you're finding good care and support from your medical team. It looks like you have quite a team at home, too--so beautiful!
Gentle hugs,
Binney0 -
thank you. I am very blessed my oncologist was wrong and I do not have cancer again. so its RIBP. I am depressed because im only 39 and that's a lot of life left and maybe progression on my left arm and hand issues. I got severe chemotherapy induced peripheral neuropathy 12 years ago from taxol and just had to go to bilateral afos to keep walking, was warned I may end up in a wheelchair if the neuropathy keeps progressing. so mentally spent. yesterday had STAT PET_CT and mri because onco said cancer. grr. that was not fun thinking I had recurrence for 6 days.
my left arm and hand have shrunk in last 2 years. I have pain from the side of my neck to my fingertips. losing use of thumb and pointer finger, wrist and elbow unstable and dislocate easy. I hate cancer. my lymphedema sleeve is hurting the webs between my finger, we even added silk 2 years ago to help but I think its progression from RIBP that cause so many issues for my left arm.
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miss302, so glad the news was no cancer--but what an ordeal to go through
I wonder if you're seeing a PT or OT for help with the RIBP issues, such as the compromising of your thumb and finger? It used to be insurance wouldn't cover treatment when healing/progress could not be seen, but now therapy can continue for the purpose of maintaining mobility and function without having to prove improvement. RIBP is kinda lonely, as it's fairly rare, so having on-going professional help and support can be a god-send. Also, do you have any kind of support for your arm that might help with the dislocation and instability? If you're using a night sleeve for lymphedema, the companies that make them can add a sling attached to a chest garment that will support your arm at night and make changing position easier and safer. A dependent arm and hand is a real target for lymphedema, so seeing a well-trained and experienced lymphedema therapist regularly can head off problems.
I so hear you on being so young to face off with RIBP. It's so hard to need help, and even harder to ask for it. Wishing you courage for that, and joy in the kindnesses that come your way in the process.
Gentle hugs,
Binney0 -
thank you binney!
I am being seen by two (both) occupational therapists on Thursday at 11 am. And my plastic surgeon whom I have been talking with about RIBP talked with the OTs and I feel good about getting support as they are consulting outside doctors. plus the mayo clinic scheduled me for may 14 neurology so that I hope will be good news too!
I do not have a night sleeve but I am hoping to get one now. thank you so much for the response.
I have another question: I am worried the mayo clinic will want to emg my left arm but I have stage 2 lymphedema and I don't think risking infection and cellulitis will we worth the emg needles. we know surgery, radiation, and chemo all assaulted this area? would love feedback.
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Miss 302,so sorry to hear you have RIBP @ your age. Can't imagine having such a debilitating ,annoying and painful syndrome raising a family. It is so hard doing everything with one functioning arm and hand. My RIBP has progressed more rapidly than I hoped. So after my diagnosis I went to see the head of neurology @ UCSF and yes he did do the EMT. Put me through that to tell me he could not help me. But he said I need Carpal tunnel surgery on my other hand. Great just what I need, more pain,more disability and said this is the part of his job he hates,to tell someone they can't help them. I too contacted the Mayo Clinic to see about a trial program,found out they don't take Medicare. I wish I had good news to tell you, I have to live one day at time. Staying positive is my daily challenge. Keeping busy, exercise and walking help.
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miss 302, I think about you often,I think because you are so young, it just doesn't set well with me. I can't imagine having this problem and so many years left. I wonder how you cope when so many people count on you. I can't cope at times, but I just have a dog. Some days I go back to bed to reenergize my self in the positive. Mine has now progressed to a useless limb. My future is a little grey right now. So I wanted to say when I do think about you I say a little prayer for you and asked my nephew who is a pastor to say a prayer in May when you see the doc at the mayo that they do have hope for you. Miracles still do happen!
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ryder51 thanks for the reply. it is really helpful to hear from you right now. I appreciate the prayers. I am really down and do feel lonely with all this crap. I am so angry that here I sit at 39 years old with bilateral afos to just below my knees (they are like wearing CAM boots all the time. So bam there goes any ankle side to side, thus limiting my ability to walk, squat, etc. Now effing cancer is also going after my left arm and hand. I can see the decreased size, increased pain, and furthering increasing disabilities. I just cant believe I get all this rare crap. Im afraid this will be my last summer water skiing with the left arm losing function. I used to race karts and stock cars and here I sit barely able to drive my stupid SUV. Last night at supper my 7 year old says "mom do you remember that doctor saying your arm problem is rare?" (I crossed paths with my plastic surgeon a month ago and asked him about my left arm issues and with my kids present he says "wow, that's rare, no I have never seen it") . so much for hiding it from them, my kids probably know way more then I would want them to. oh well, maybe I can try my best to live well and enjoy life with my family? just having a really hard time wrapping my head around this RIBP.
I get so mad at my husband and kids joking that I take so long to get ready to go. like I effing choose this crap?
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