radiation-induced brachial plexopathy
Comments
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Erica, I'm so glad to see you back!
You're on my mind so often and I wonder how you're getting along. Let me go contact the RAGE folks and see what they have to say. I'll let you know what I hear.There was another new piece of information I wanted to share with you. In the May 11, 2009 issue of the New Yorker there's an article by John Colapinto called "Brain Games," about a neuroscientist named V. Ramachandran at U.C. San Diego who has done some surprising interventions with limb pain (including phantom pain). His specialty deals with how we perceive pain, and how our brains can be modified (or even fooled) to stop the pain reaction.There are few details on this particular trick in the article, just a mention, but if you're intersted in pursuing it I'll see if he'll give us more guidelines. Here's the quote --Colapinto is listing some items in Ramachandran's lab:
"...several plastic minimizing lenses (Ramachandran has found that viewing a painful arm or leg through a lens that makes the limb look smaller dramatically reduces pain)..."
You can see why that jumped out at me. I googled "minimizing lens" and nothing came up, so I'll keep trying other terms and see if I can find where to get one to try. There's no mention of how long it takes to get the pain relief effect or how long it lasts, but his work with phantom pain suggests that 10 minutes twice a day for two weeks can permanently change the brain's perceptions of pain. Of course phantom pain is exactly that: phantom, not really "there," while RIBP pain is a continual process, but in the case of the minimizing lens he wasn't referring to phantom pain, so perhaps it's hopeful. If all else fails we can try contacting him directly and asking for details. Let me know if you'd like me to do that.
Two other news items:
SOME UNIVERSITIES ARE STARTING TO PUT TEXT BOOKS ON KINDLE. So if anyone is interested in taking a course or two, or even going back for a degree, ask at your local college or university about this option and don't let the awkwardness, weight, (or price!) or the textbooks stand in your way.
A PROMINANT LYMPHEDEMA RESEARCHER WILL SOON BE STARTING A PRILIMINARY STUDY ON THE REALITY OF RIBP. This first study wil be a "phenomenological" study, which means they'll be needing patients to interview about their personal experiences with RIBP. The information they gather will be put together and shared so that both research and treatment needs can be identified -- and hopefully followed up on. The reason I'm so excited about this is that several years ago there were similar phenomenological studies done about women with post-bc lymphedema, and it really made the research world sit up and take notice. Right now, RIBP is invisible, but with a published study it will start to be addressed by both the researchers (who can look into cures and prevention) and the therapists (who could help develop ways to manage it). Participating in this study would not require you to travel, just to participate in a phone interview. I sure hope you'll all be willing to help with this. I'll post the details as they become available
I'm so relieved to see this process starting, even if the steps are maddeningly slow. The amazing thing about this bit of progress is that YOU ARE THE ONES WHO MADE IT POSSIBLE -- you, Erica, by starting this thread, and the rest of you by responding and sharing your experiences. It's this thread that has brought RIBP to the attention of the lymphedema community and its researchers. How crazy is that?!!
Chocolate all around! And hugs too, of course,
Binney0 -
binney, i think i just remembered how to reply. just let me know if you got this. barbara-
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Hi, Barbara! You got it!
Binney0 -
honey, getting old is not for sissies...............b-
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calling all ladies, especially erica, our honorable founder, and shari and ronimom and any others i might have overlooked............our orphan disease may finally have a knight (or a knightess?) to do battle for us!!
with many thanks to binney for keeping us informed (see above), a doctor who was at the lymphedema framework meeting in chicago would like to have some material about radiation induced brachial plexopthy to present for publication at the next nln conference!!! and guess who she wants to interview by phone??? us ribp girls!!
this is the best news i have heard in 8 years. i, for one, will do anything i can to help her understand exactly what it is for us, and i'm sure all of you will too. if any of you out there know anyone else who has this radiation side effect, please tell her to jump on board here.
as binney said, this would probably never come about if you hadn't started this thread, erica. we all owe you big time. i just hope this study will follow the same path as the breast cancer/lymphedema connection.
hope you are all as excited about this first step as i am,
barbara-
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Hi, all,
Barbararellen, I sure do share your excitement! The first stage of this process is a review of the "literature," which means finding and noting all the studies that have been done about RIBP. Not too big a job, since there's been so little done about it.
I'll keep you all posted on progress with this, and I'm hopeful you'll all participate when we finally get to the active interview stage.Erica, an email this morning from the RAGE folks says this about the Farabloc:
" I understand that it must be used double. I have booked a local tailor to make me a sleeve to cover the entire arm, hand, shoulder as I gather all the nerves in that area are misfiring. Strangely my son has often said that we need to live in a 'Faraday cage' which would protect us from all atmospheric influence. I would not expect to get immediate pain relief, I have suffered
20+ years but possibly a gradual lessening of pain."They (and we!) will be interested to know what you try and how it works for you, so please do keep us posted.
Be well!
Binney0 -
Oh, and I found some "minimizing lenses" by googling "reducing lens." Here are a couple of sites with pictures of them:
http://www.wildheatherdesigns.com/reducing-lens-viewer.html
Seems to me if you wanted to try that you could use a pair of kids' plastic binoculars and turn them around backwards, which always makes things look far away.
Just a thought,
Binney0 -
Hi Everyone,
I am so glad to be back with you. I have kept on looking at this thread and have had nothing to add, so I haven't. The "beat" (throb) goes on.
Hi Erica, Binney, Barbaraellen. Thanks for the successful pursuit and great news!!! I want to participate in every study.
Ronimom
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Hi all!
Thank you Binney and BarbaraEllen for keeping me posted on all this great news! and...."hello" to Erica and Rinimom too! When I first encountered this site, I was a relatively new RIBP person. At that time, all I did was think about it, ruminate and slowly sink into a depression I had never known before. It has been a year and a half now and my arm is getting heavier and my hand more numb....but for some reason, I don't even think about it much unless someone brings it up by saying "how's your arm"? If I hear that one more time of which I did last week and "I said...thanks for asking but it is always going to be the same or worse and it is never gooing to go away so thanks for asking but you don't have to ask again because the answer will always be "the same". I smiled and laughed when I said it but I think she got the message. Luckily, I don't experience a lot of pain now thanks to Lyrica and Zoloft but the cold intolerance is the constant killer. Living in So. Cal. people use their air conditioners and like to keep around 70. If the temp goes below 74 or so....man oh man, that's when I get very uncomfortable. My hand gets very cold and hurts. so....needless to say, I whine about it and now, all my friends accommodate me and if it gets a little warm, we turn it down for a little while and then off again. I am so lucky to have the best of friends who are always helpful to one another. One other lady does have LE and now is starting with BP but she says it is because of breaking her humerous bone last year in the other arm. Ok....enuf aabout my dramatic life. I am just soooooo happy that we are getting some attention and maybe help is on the way!! That spells hope and it certainly is alot more that I have heard since this lousy BP and LE started (that was eight years ago) started.
Am leaving today for a trip to Hawaii for a wedding. Let me tell ya girls, finding a dress and other clothes for the trip was a real challange. Everything cute is sleeveless! Even thought I will shed my sleeve for the wedding, sleeveless just doesn't get it! But...the shopping is done and the bag is almost packed. Gotta ago for now but hope keep this thread alive by our posting each other.
I will toast this good news with a Mai Tai to us all!
Shari
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Good news about the upcoming study. I, too, would be very happy to participate in any way. I've had RIBP for a long time--decades now--and have more or less ignored the lymphedema until recently. I've been a practitioner mostly of the grit-and-bear-it approach (except when attacked by celllulitis when I turn to Keflex and sleep for relief). Recently, through the information--and inspiration-- from your postings, I am now investigating ways to lessen the growing discomfort from the lymphedema. I am presently seeing a PT about this, and she raised the possibility of one of those Circaid Readyfit Compression Armsleeves at night. It looks a bit like overkill to me, but I'm wondering if some of you use this and what your experience has been. Thanks very much in advance.
Best Wishes,
Alice
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Hello, Alice!
So glad to hear you're taking charge of the stupid lymphedema -- keeping that in control should really help you avoid cellulitis, too. I hope the PT you're seeing is fully trained to treat lymphedema (that'd be at least 135 hours of specifically lymphedema training beyond her PT certification, and preferably at least a year's experience treating it). It can be hard to find one with those qualifications, because no state currently mandates training standards for lymphedema (why are we not surprised
).The Circaid is helpful, but there are other options that are more flexible and comfortable. JoviPak makes night garments, as does Solaris-Tribute and Telesto-Medtech. All three of those are custom fit, flexible, and soft (but they're also bulky -- sorta like a long oven mitt.) JoviPak will even make a sleeve/vest with an arm support especially to deal with BP. There's a picture of it here:
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#NIGHT%20GARMENTS0
But you'll want to be sure that the therapist has already reduced the swelling by wrapping and Manual Lymph Drainage massage, so that when you order garments they'll fit the "new you"!
Because my lymphedema is bilateral and involves my chest as well, I use a JoviPak vest with attached sleeves and mitts -- I look like the abominable snowman going to bed, but fortunately my family (even my DH) is understanding and supportive -- they call it my "mama bear outfit." It allows me to sleep relatively comfortably, it's WAAAAAAY easier to deal with than wrapping, and I wake up with my arms and chest in great shape. So for me -- I'm grateful for it!
Let us know what you discover.
Be well!
Binney0 -
hi everybody,
alice, i almost forgot you, thinking of those of us with ribp! heavens! and you are such a long termer, too. how do you type with capital letters? can you actually raise your arm to desk height and move your fingers? if you can, please tell me how! i'm sorry i can't help you out with those compression garments because i only have experience with a solaris reid sleeve at night and a medi sleeve during the day. the real expert in this area...as in many others...is binney, of course.
shari, i hope you will have a wonderful time in hawaii, and polish off a couple of mai tais for me! and i hope your hand will behave itself in that glorious climate!
sunny huggies,
barbara-
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Thanks to Binney and Barbara for the helpful information. I am so glad I discovered this discussion group. About my typing strategies, I am very lucky in that my affected hand is not my dominant hand. In any case, there is no way I could type with my affected hand. I have lost all finger strength and movement in it--and there is no grasp at all either.I type capitals holding the shift key down with one finger and stretching another finger to whatever key I need.
Best wishes,
Alice
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Don't you gals have a "caps lock" key? You do not have to shift then type each letter to get capitals. Punctuation comes out a bit different, like < instead of period at end of sentence, and > for comma, but all is doable. Hugs, Blessings and Sweet Dreams. Nancy
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Gosh, this is practically a reunion!
So good to hear from everybody again!I have a project for you all: we're in the process of coming up with the questions for this interview-type study that will bring out the real issues that you face in dealing with RIBP. So would you all please suggest some topics you feel we most need to cover in the interview questions? Thanks.
Shari, make that a couple of Mai Tai's
-- hope you're having a wonderful time! Hugs all around,
Binney0 -
many thanks for those prompt responses, nancy and alice! because my dominant right hand is the damaged one, my left is quite clumsy about holding down 2 keys at once, especially on the right side of the keyboard. however, i am noticing that i am getting better control with my left hand. i may try again, even if it slows me up. and i have used the caps lock to write, but it always looks as if i am yelling or writing to one of my grandchildren. what i have noticed though, is that when i type on "word", every first letter in a sentence is automatically capitalized, and "I" is always in caps no matter where it is used. so that leaves very few letters that have to be in caps, and that i can handle. does anyone have any idea how i can get that advantage on Eudora, which is my means of communication? is it even possible?
Binney, (see?) I am having a hard time trying to figure out questions for the interviewers to use. I can present the problems, but at the end of the problems, questions can be asked, like, couldn't the continuing immobility of the arm cause the le? could it happen the other way around? what exercises, if any, are there for those of us who have both conditions?
And we could ask what will it take to make the entire medical profession, starting with the schools, finally wake up and teach doctors, nurses, therapists, surgeons, and especially radiation oncologists that every patient who has had surgery and/or radiation therapy is at risk for both conditions for the rest of her life? what will it take to make the doctors aware of the beginning symptoms and think of these side effects before they have exhausted every other possibility, all the way down to hypocondria first, wasting valuable time and money, and perhaps missing a golden opportunity to stop the damage before it becomes too late?
These kinds of questions can only be asked after the facts have been stated, which is quite possible in declarative sentences, not as questions. Is this making any sense to anybody but me? I am open to all any suggestions. (You know, that "I" is VERY difficult on that side. but I will keep trying. Be patient.)
Huggies, all,
Barbara-
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Hey, Shari!
I know you are having a great time, surfing the waves, para-sailing, etc. I wanted to tell you what I do when someone asks, "How's your arm?" I always smile and say, "Worse," and that's the end of it. If there is a prolonged, stunned silence, I shrug and say, "Everybody's got something." That does it for sure. They usually just nod and mutter.
Are you noticing these capital letters? Most of them are OK, but the little guys on the right side of the middle keys are really hard. Maybe I'll skip them sometime. This is really slowing me up, but I feel so proud. Alice, you must have the hand span of a concert pianist! I am working on different finger combinations to see what works best. I would really like that"I" to be automatic, though............
Barbara-
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BarbaraEllen, hooray!! (See? We'll have to use caps for your screen name now
!) Brava! You should be proud, it's beautiful.And on the other hand we'll be happy to read your capless posts here anytime, too.
Let me try again. What I meant was, what questions do you think will best bring out the things you want to say? One of my thoughts was, "What treatment options have you already tried (including complimentary or alternative), and how did they work (or not work)?" Because the answers to that will bring out the issues of how the doctors didn't help and couldn't suggest anything useful. Or, "How long did it take for you to get a diagnosis, and what did that process involve?" Because then it will become clear that early diagnosis just isn't happening. I guess I'm asking you to think like they do on Jeopardy (have you ever watched that game show?), where you already know the answer and you have to make a question that asks for it.
Is that any better?
Kind of difficult to explain. If you're going to be interviewed about RIBP (which you are!), then what do you want the interviewers to ask you so you'll be able to tell them the important points? You guys are the only experts. Clearly the medical folks don't even know what the issues are, so they need help asking the right questions in order to find out. The better we can direct their questions, the more they'll learn about the things we want them to know. I don't know how you guys are reaching all the keys! Maybe my hands are just little, but I think I'd strain a muscle trying to get to some of those letters while holding down the cap. I use the FrogPad, which has all the keys in a very small area -- and they're all full-sized keys too. The learning curve was steep, but it's easy on my hand and I'm really glad I put in the time to learn it. Odd, but when I have to use a regular keyboard at the library, I have to stop and think where all the letters are.
Shari, go for it all, then hurry home and tell us all about it!
Hugs,
Binney0 -
Binney, I am not much help with what to ask or say at an interview because I do not have RIBP. I refused radiation for many reasons, including the risk for RIBP. However, maybe
- How long does it take to develop RIBP?
- Is it less common in those with a regular or routine preventative exercise plan? (Such as Lebed)
- What does one do to improve one's quality of life once diagnosed?
Maybe this will open up the discussion for others who are afflicted to respond. HUGS, Nancy
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Binney, my good friend, you are right.... again! I don't think i would have liked you in my English or Logic classes...you would have rivaled me! But i just love you now. Yes, using Jeopardy as a model, i think i can handle that. But later. My best beau wants to take me out for dinner. See ya later, alligator...........shows you how old i am!
Barbara-
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Hooray!!! I found you...and there is more than one of you!!! Pinch me, am I dreaming?? There is so much to say I am not really sure where to begin.
I am so glad to know that there are others out there with the same condition. I certainly am not glad that we have it...but I have been searching for the past two years for even one person that I could talk to about RIBP!
In a nut shell, I am a 91/2 year survivor of stage 4 invasive ductal carcinoma of the left breast. The first symptoms of RIBP did not start until 6 years post treatment. Diagnosis was difficult to obtain, and many medical people did not believe it, saying it did not happen anymore. But you and I know better...LOL.
For pain control I take Lyrica with cymbalta. Recently I have been having pain in the ulna nerve, believed to be caused by the need to keep my arm in a sling. The remedy for this is to ice the affected area and keep the arm elevated and straight for at least three days.
I have been fortunate to have a wonderful Lymphedema therapist who has been more help than many of the doctors. I have been using a flexitouch nightly, although there are times when the FT is painful.
When I was first diagonosed , the neurosurgeon mentioned a nerve transplant, using a nerve from the side of the foot. At that time I still had some function of my bicep and hand use. He said that the transplant would not be considered unless there was total loss of function. I am calling him to reassess me. Have any of you had the problem with sublexation of your affected appendage? My arm hangs about 2 inches from the shoulder, which is why there is the need for the sling.
I am very interested in the study and interview that you have been talking about. My Lymphedama therapist has been sending my information out to a number of MDs around the country...we have not heard anything as yet. I also tried emailing Bonnie Hunt, who is a former oncology nurse...haven't heard back from her yet.
Have a safe Memorial Day..I will look in on this thread with anticipation.
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Welcome, Connie
,So glad you were able to find us (and really sorry you needed to
). I know the others will be along shortly to add their welcome and share their experience, but I just wanted to direct you to our information web page if you haven't already found it, here:http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm
So glad you've found a caring and knowledgeable therapist, and anxious to hear what else you discover.
Very gentle hugs,
Binney0 -
Well, Hi, Connie!
I don't know when I have ever found a more enthusiastic welcome! As if we all just found out we are in the same sorority...............which we are. We would all rather be in a different group, but this is indeed a real sorority, because we all care for and support and learn from each other. I know just how you feel because I floundered around for years, unable to find a soul who even heard of RIBP, let alone anyone who actually had it. And then, when I fell into this with the help of our Binney, I felt like I fell into a gold mine.
It took me a long time to be properly diagnosed too, because so few people have ever heard of it. They had me chasing all over the country for a couple of years, all the while my arm was getting weaker and weaker. i heard every crazy thing from carpel tunnel, which seems to be a first shot favorite, to not-so-subtle hints that the whole thing had a psychological cause. I like your guy, who said it doesn't happen any more. Wow! Like bubonic plague? I never heard that one.
When did your arm start to hang down 2 inches? From the very beginning or slowly? I always have a tough time deciding on a date for my RIBP, because it was so very subtle. I think I will finally settle on 2000, because that was when I realized my handwriting was getting sloppy. My hand and arm seemed to be working nicely, and although I mentioned to my onc, neither of us thought it was very important. But by 2004, I could not cut through a bagel or butter it. Now I have almost no movement at all and my right arm hangs down. I am unable to bend my elbow, of course, and the fingers have no grasp. My shoulder seems to be tilting, but I cannot say I have a 2inch subluxation. My onc never suggested a sling, and I don't think I could keep my elbow in that position. Sitting down, maybe; but I am pretty sure gravity would make it very uncomfortable if I stood up. How do you get in and out of a jacket by yourself?
I am very into managing by myself, so I want to ask if you have figured out any surefire way of getting toothpaste on your toothbrush without having the brush fall over. I think it will take a vise of some sort. Do you have any survivor tricks you would like to share?
I am glad you found us, Connie, but sorry you had to. Keep us informed about that nerve transplant thing (?) and take care.
Barbara-
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Hey, Barbara! (love all your capital letters, by the way!)
Sammons-Preston has a one-handed toothpaste dispenser here:
http://www.sammonspreston.com/app.aspx?cmd=get_product&id=46572
Not exactly cheap, though. I'll keep looking.
Mayer's "One-handed in a Two-handed World" also suggests holding the toothbrush in your teeth while putting the toothpaste on it. (I tried it and went cross-eyed.) Or squirting it directly into your mouth and then sticking the brush in your mouth and maneuvering it around to pick up the blob of paste. (I declined to try that one.
) Perhaps the $35 isn't such a bad investment after all...!Binney
Okay, I see the link doesn't work, so copy it and paste it up in the browser and it'll work. If not, tell me and I'll try again. Sigh!
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HI Barbara and Binney,
thanks for such a warm wellcome. this is like my breast cancer support group. the sorority is great but the initiation is hell. i am new at this computer stuff so it is slow going. i have to keep having my computer geek help me out. lucky for me it is my daughter and she works with me.
as for the nerve transplant, not good news.. he said the only treatment at this time was pain control. bummer!!!!!!!
putting toothpaste on a brush was a challange for me. but i think this might work as well for you as it does for me. i put a hand towel on the counter , put my left arm on that and slip the handle of the brush under my arm. (i call my arm egora) then i can put the paste on without it dropping into the sink. i wasted a lot of toothpaste before i figured that one out.
tying my shoelaces was a big challenge, until i found elastic laces. i get someone to tie them once in a double knot and they stay that way for months. i do not use the sling all the time. when i am standing a lot, it eases the weight pulling on my shoulder. keeping my arm bent for too long iritates the ulna nerve and the pain from that is hard to control. i tried ice, but that just made the pain worse.
do any of you have any good tips for pain control other than drugs? i already take lyrica and cymbalta.
barabra, my arm gradually began to drop. as the muscles deteriorated, then it dropped more. my last mri showed the 2 inch sub with fluid. the lymphadema also has gotten worse so that added to my problem. it was probably over a two year period. when you look at my shoulder from the rear you can see the difference, and it droops.
i use the flexitouch at night and wear a compresion sleeve in the day time. i had been going to the pool three times a week, but as the condition worsened i was told not to continue. chance of infection and further damage. (dead weight floats) =] i miss the water therapy.
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Hi Connie,
I love the towel-as-toothbrush holder idea! I tried it, and already found a second way of using it. I wrap the towel around the brush is such a way as to make it snug, and then without touching the brush, you can just let the toothpaste slide onto it. Isn't it lovely to have so much opportunity to practise creativity?
It is too bad you had to discontinue your water therapy. I am not a water baby myself, but I have many friends who love it and swear by it. The shoelaces I found a couple of years ago, and then I got sneakers with velcro. They both make me feel old, so I go with loafer style if I can, especially in airports. Sneakers take too long to get off and on.
Do you get an MRI every year? I don't want to be missing anything here. My neurologist may be falling down on the job. He is more partial to EMGs, but I don't let him do that anymore.
Your daughter is your computer geek? Wow, you must have done something right! Does she have any free days?
Hope you are enjoying this lovely weather today. Take care.
Barbara-
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Hello Ladies, I am writing for Connie, to fill you in on the latest development. (This is her "geek" Daughter Terri) Right now my mother is on bed rest, she is recovering from her worst ulna nerve flair up yet. She has to keep the arm straight so we have been wrapping her arm and the good news is that we have been able to get the lymphedema down considerably.
Just before the flair up she went to the Dr. about a drooping eye lid. Next day a 6:30 am MRI, which showed no signs of a tumor. (Thank God) This morning she went to see her ophthalmologist, who diagnosed Horner Syndrome...and yes, it is connected to the brachial plexopathy!! She will be seeing a neuro ophthalmologist in July, who will examine her further and take care of the eye lid. At this point they doubt a tumor, but given her history they are watching her.
She is in good spirits, and wanted me to tell you all about this additional physical problem that you may encounter..if you haven't already.
If I can answer any further questions or pass on any messages please let me know . I do check in daily for her, and like to keep her posted. I hope this posting finds you all with a smile in your heart.
Terri (for my mother Connie)
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I am so sorry to hear that Connie has had another complication. Horner syndrome is a "nerve condition that includes a drooping eyelid (ptosis), constricted pupil, sunken eyeball (enophthalmos) and lack of sweating on one side of the face." It is present in 50% of brachial plexus injuries involving the lower plexus (C7-T1). Radiation induced brachial plexopathy usually affects C5-C6 and thus Horner's is very rare in RIBP. Most of the time if Horner's is present in a woman with breast cancer the neurologist will suspect either a met to the upper lung or an enlarged lymph node pressing on the T1 region or direct metastatic invasion of the brachial plexus. I'm hopeful that Connie has been aggressively worked up to exclude mets as the cause of her Horner's. Just because it is rare in RIBP for someone to have Horner's doesn't mean it never happens but her docs should be sure.
I'm hoping for quick relief for Connie. Best, Erica
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Erica, Thank you for your input. Thankfully her GP is also a BC survivor and is aggressive in the elimination of mets. Her Optho is also very thorough and has immediately referred her to a specialist. Her last MRI of the BP (3 months out) does show a mass in the upper lung, although he was pretty sure it was scar tissue, but recommends that be investigated further. Her recent MRI to her head was clear, and her April Oncology check was clear. Today we are positive and hopeful that it is RIBP. I will keep you all posted as to what we find out.
"Courage is grace under pressure" Ernest Hemingway
keeping you in my thoughts and prayers
Terri
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About the questions to ask us for the study....
1) Did you have an axillary dissection as part of your surgery?
2) Describe the arm symptoms you had after surgery and going into radiation?
3) Did those symptoms resolve?
4) How long after radiation did you start to have new symptoms in the shoulder or arm?
5) Please describe the symptoms when they first started.
6) What did you do to relieve the symptoms?
7) Who did you consult to address the shoulder/arm symptoms? Also when did you consult?
8) What tests were done to diagnose your symptoms?
9) How long between seeking your first evaluation for symptoms and getting the diagnosis of radiation induced brachial plexopathy?
10) Describe how your symptoms changed over time.
11) What tasks are you not able to do because of your RIBP?
12) Has any of these decreased functions resulted in your inability to perform tasks necessary to function in your role (i.e unable to do housework if stay at home mom; unable to work at previous job; etc)?
13) Have you had financial repercussions from the injury?
14) What effect has the RIBP had on your psychological state (i.e depression, anxiety, etc)?
15) How were you treated for the RIBP?
16) Were you also diagnosed with LE?
17) How has LE been managed?
18) Have you felt supported by your medical team in finding the diagnosis?
19) Have you felt supported by your medical team in managing RIBP?
20) Who do you currently see for your RIBP?
21) Who has been the most useful to you?
22) How much money have you spent in working up, treating, and trying to adapt to your RIBP?
23) How much do you feel your life has been diminished by RIBP?
Also I think it is very important to see what our risk factors were for having this complication so an exhaustive review of our cancer type, location, surgeries, axillary dissection vs SNB, chemos, rad timing and dose is certainly indicated.
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