radiation-induced brachial plexopathy
Comments
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Thank you, barbaraelle. I've learned to live with the pain - I feel so lucky to be alive and well.
My onc says it usualIy gets better after I had been having the spasms for a couple of years, but I feel quite sure it will never go away since it has only gotten worse rather than better over the past 7 years, but it's such a minor complaint compared to what some of you brave ladies have to endure.
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LADIES, LADIES, LADIES!
ROSES ARE RED
VIOLETS ARE BLUE,
MY SPECIAL VALENTINES
ARE ALL OF YOU.
HOPING YOU ALL HAVE A SWEET AND HAPPY VALENTINE'S DAY WITH THE ONES YOU LOVE,
BARBARA-
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Yes! Happy Valentines Day, girls! Lots of love to you all!
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Aww, barbaraellen! Big, happy Valentine's hugs coming your way too!
Sweet, chocolate wishes to every one of you!
Binney0 -
Hi Desdemona...
I just read your post about the spasms and post rad pain you have been experiencing and it sure "rang a bell" with me. My first year post rad, I had a pain in my breast bone that hurt to sneeze, cough or laugh. Had steroid shots and it helped but I gained weight although that pain gradually went away. (the weight didn't though). Then about my second year, underneath my rib cage in the rad side, if I would be in a certain position, I would get these spasms, like a muscle spasm. Then that went away. I did have LE though after the 2nd year post rad. Not until one year ago, did I start with the RIBP which was nine years post rad therapy. I am glad to hear that your doctor is correctly diagnosing and you will have support and knowledge that many of us didn't have.
Hope you all had a great Valentine's Day and the chocolate cravings were satisfied. For me....been eating way too many sweets. My weakness!
xoxoxo
Shari
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PS: Thanx for the poem Barbara...I loved it!
Shari
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Hi, all,
Remember the Cleveland Functional Electrical Stimulation Clinic that Alicen told us about? I'd asked them in an email if it didn't work for RIBP, why not. And just today I got an explanation, so I'll share it with you:
"...A main limitation in using functional electrical stimulation (FES) to treat this condition stems from the type of paralysis you have. The radiation essentially caused damage to your peripheral nerves, making them non-responsive to electrical stimulation. When paralysis is caused by damage to the central nervous system (such as at the spinal cord) without damage to the peripheral nerves (such as the brachial plexus), the peripheral nerves are still intact and respond to stimulation. This is unfortunately not the case for RIBP....Regarding your question about pain, there is research being conducted at our center looking at blocking nerves that conduct pain. This research is in very early stages but may someday be an option to reduce the pain experienced by RIBP."
Erica, if you're still reading here, this made me think of you! Sure hope you're finding the help you need for real pain relief. Thinking of you, keeping you in my prayers,
Binney0 -
How do I answer this one? Rad onco phoned to ask why I had not made appt to begin rads. I said i was still weighing the side effects: heart, lungs, skin breakdown, neuropathy, RIBP, and having to be there 5 days a week for 6 weeks and I only have 30% use of my dominant hand (same side as rads would be). I was not comfortable with what I have heard and read. She then asked " what is RIBP ?"...... oh, that... you probably wont get it since you are 63 and it took that long for you to get cancer !!!!
I am a widow and live alone and don't want to have to hire someone to take care of me. Since I had a lump, she had me believing I would die if I didn't do rads, but she added that a mastectomy is a good idea if I don't want to do rads. and that would guarantee the same benefit as radiation. Since when? I was almost in tears over it and got myself all worked over it. Any helpful ideas, comments?
I have prayed, discussed, researched and am just NOT comfortable with radiation. Thanks for listening to my moaning and groaning. HUGS and PRAYERS, nancy
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oh my goodness, nancy!
i am so sorry you had such an uncomfortable meeting with your rad onc, and that is probably an understatement. i remember she once told you that radiation would keep the swelling down, and i didn't say anything even though that sounded pretty far out to me because i am only a patient and i don't know everything. now you say she first asked you what ribp is, which is shocking, and said, oh, that, as if you were referring to a hangnail, and then said since you are already 63 you probably won't get it anyway, since it took 63 years to develop cancer!!
now i feel justified in telling you to please, please, please take your records and find another rad onc because this one is not playing with a full deck. i think she handled your very legitimate concerns in a very cavalier, if not actually ignorant manner.
the fact that you live alone, and at 63 (happy birthday, a little late!) let me assure you that you are not checking out the day after tomorrow. how old is this doc, 12? she sounds very young, because only the very young think 63 is completely over the hill. i have a lot of time on you, and i am planning to be here for quite a while yet. you have a lot of good years ahead of you, and you may well be able to avoid ribp as well as le. i think you should find someone who can help you toward that goal, not blow you off.
please do not feel you are just moaning about nothing. we all have had our independence and confidence threatened by these "side effects." that term makes them sound so insignificant, doesn't it? you have every right to question your need for radiation. maybe you should see a regular onc? the rad ones are trained to do radiation, after all. and just don't let yourself be pushed into a hasty decision. you must get another opinion, of course, and not neglect the situation, but you should be able to discuss your concerns with someone who does not refer to ribp as, "oh, that."
stay in touch,
barbara-
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nancy, i forgot one thing you mentioned. she said a mastectomy would "guarantee" the same benefit as radiation? guarantee is not in any oncologist's vocabulary. see if there is a diploma on the wall............
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Thank you so much, Barbara. I was beginning to think I was the one who was screwed up after talking to this woman, who is about 50 years old and head of that radiation oncology unit. I cannot go to the same place where I have had chemo, herceptin and surgery because the rad onco group does not participate with my insurance company. My out of pocket expense for out of network would bankrupt me, so I was referred to this woman.
I will have to contact my insurance company and see who else is in their network and get another opinion. If it isn't one thing, it is another with the disease that keeps on "giving". Thanks again.
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nancy, i hope you can find a more interested doctor in your network. but take heart; one of the best things about getting older is MEDICARE! i just hope it lasts for you. only 2 more years to go!! and here you thought you were getting old. fact is, you're not old enough!! you should have a lot more freedom to pick and choose then.
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Hi, all,
I have a couple of new items to share with you (hmmm -- I say "new" because they're new to me, but I'll bet they're not new to barbaraellen or ronimom or some of the rest of you!)
First, the "bra-angel," which holds one end of your bra for you so you can hook the other end into it. It's not entirely clear how this works in practice, though the pictures are intriguing, so I'm putting the link here and look forward to hearing from someone as to whether this looks useful or not. It's here:
http://www.sammonspreston.com/app.aspx?cmd=get_subsections&id=100826
(Okay, I give up -- this link won't work right, so when you get to the page click on "Aids to Daily Living" on the left-hand side of the page and that should give you a page with the Bra-Angel at the top. Click on it and it'll give you a full description and pictures of how it works.)
And then -- ta-da!! There's a new workbook out for adults to learn how to write with your non-dominant hand. It was written by two OT/hand therapists and it's called Handwriting for Heroes: Learn to Write with Your Non-Dominant Hand in Six Weeks. I ordered one and I really like the way it's set up, the exercises, the hints all through, the adult slant, and the genuine encouragement. I'm going to do it, as I can't write much with my right hand or it swells, so nobody got Christmas cards this year
and I can't write real snail-mail notes to people either. Next Christmas will be different! 
Anyhow, I wrote up a brief review and Jane put it on our website with links so you can find their website and order one if you'd like. It's here:http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#WRITTEN_COMMUNICATION:_0
Remember Alicen's mention of the Cleveland FES Clinic that she and I both emailed, and it turned out not to be workable for RIBP? It was one of the therapists there who emailed me with information about this workbook, as she said she'd be keeping an eye out for anything that would be a help to us. Nice! Thanks, Ceveland FES Clinic!
Hugs all around,
Binney0 -
binney, you are a gold mine of information, which i believe i've said before. i am definitely sending for the workbook on learning to write with the non-dominant hand. it would be nice to sign a birthday card again. thanks
i dunno about that bra-angel, though. i keep studying that picture, and it looks to me that you have to hook it in front, so you would have to wriggle that around to the back then. that is no picnic, and very hard on my left hand, to say nothing of my midriff. it also looks like you have to get this device around your neck first? with one hand? i dunno about this. right now, i get it hooked together first and then step into it. takes me a while to wriggle it up into place, but it is easier than trying to twist it around. not all of us have model-thin midriffs, you know.
yes, i think that the therapist from the fes clinic is one terrific gal! how very nice of her to take such an interest in us. i certainly hope she does run across something helpful.
barbara-
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Please go to my web site at uhealth.net about MLD and preventing lymphedema.
Glasser Lymphedema Services
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Peter, advertising goods or services on these boards is against the Community Rules. Note rule #8:
"You agree not to advertise or promote any goods or services in the Discussion Boards or Chat Rooms."
I know you'll want to delete this post before the moderators do it for you.
Thanks for respecting the purposes of our discussion board,
Binney0 -
Phew, you're way ahead of me Binney.........
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Hi Everyone,
Binney, I am thrilled with the website! Thank you!!
3 new things to make cooking easier.
Fasta Pasta: cooks pasta in the microwave. It is light and easy to handle with 1 hand. The directions say to drain the pasta with the lid on. I could not hold on to the lid tight enough to drain it, and wound up with a sink full of pasta! So now I pour the pasta into a colander. I bought it on QVC.
Garlic Zoom by chef'n. Chops garlic in small quantities. Halve or quarter garlic first, depending on size. The top is easy to open. Then roll on wheels to chop it. It took me a few tries, but it worked and I just rinsed it out in hot water and set it to drain. bought at Fred Meyer.
Bagel cutter by Ronco. Excellent, and it even comes with a small bread knife. I bought it at Bed, Bath and Beyond.
Please let me know your new tricks, and please post this on the website, Binney.
Ronimom
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binney, you are so aware and so fast! good for you! i figured that was not kosher, but i wasn't sure what to do. of course, you did. i am thinking of having a special badge made for you that says, "the scam stops here!" now, if you could only keep all the other garbage off our emails...............
thanks, and big huggies-
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Hi, ronimom,
I'm really glad you like the way the website is shaping up. Have a few more research studies to post. Give me a couple of days to get your great suggestions up on the site, and thanks so much for sharing them.
Barbaraellen, I started working on the writing workbook. I've tried using my left hand before when I've needed to write something or when I'm working sudokus or crosswords, and it's so frustrating. But having exercises in a workbook somehow makes me feel less stressed about my sloppy efforts. And knowing that I'll be doing some of the same exercises over the course of several days makes me feel relaxed when I mess up. It sure isn't easy, but a workbook is for practice, not for perfection, so this is giving me the room I need to do just that. I'm liking this!
I emailed the R.A.G.E. people about it too, and they're going to put a notice about it in their next newsletter. Nice to know we're not alone!
Hugs all around!
Binney0 -
Hi Binney,
I ordered the handwriting workbook too. I hope it I will get my handwriting more legible and quicker. It absolutely irks me when I want to jot something down and am too slow to keep up.
Have you ever thought of how much smarter we are using the other side of our brains? Hope this challenges my mind!
Ronimom
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Hmmm. Hadn't thought of it that way! Thanks for the adjustment in perspective. Actually, I find it's challenging my patience -- but, hey! that's good too!
Binney0 -
Oh my gosh!!! Where were you ladies 3 years ago when I was told I possibly had PMPS - Post Mastectomy Pain Syndrom - by my PT. Probably I do. But the R-IBP sounds more like what I have. On having a recurrance I had the normal - at the time - 30 rounds of rads + 5 boosts. But since this was a recurrance I had already had an implant following the original mastectomy. The radiologist said at the beginning the rads that my implant may not make it thru the rads. And sure enough the implant was fried. I had to have it removed so this was the 4th surgery in the same place - mod rad mastectomy, expander, implant, remove implant. With LE in my upper right quadrant, some days I literally cannot stand the pain. I take tylenol with codeine and then do absolutely nothing on those days. If I use my right arm much at all it stirs up the pain. My wonderful husband does most of the cleaning and cooking.
Thank you for being here!!!!!!
Susan B.0 -
Hello, all,
A bit of news here. Bear with me while I try to explain it. There is a new project underway in the U.S. to develop treatment standards for lymphedema, so that all our medical folks can be on the same page about diagnosis, treatment, therapist training, and reimbursement. The project is called the Americal Lymphedema Framework Program (ALFP), and it just had its first meeting (last Monday in Chicago), inviting professionals, patients, and suppliers to discuss what issues they think should be covered in the new treatment standards.
Since RIBP has lymphedema as one of its components, barbaraellen decided it would be a good idea to attend that meeting and bring RIBP to their attention. It was an all-day meeting, and several topics were eventually settled on to be discussed in more detail. Thanks to barbaraellen's efforts, one of those topics was RIBP! Though this was just a preliminary meeting, and we have no idea what the follow-through will be, it was WONDERFUL to make all those people aware of the unique needs and experiences of all those with RIBP-related lymphedema. Below I'll copy the document that barbaraellen's group generated.
THANKS, BARBARAELLEN!!!
More information about the Framework Project at http://www.alfp.orgALFP STAKEHOLDER'S MEETING
Chicago – March 16, 2009
Working Group Report
Names of people in the Working Group:
(barbaraellen and her husband and three professionals)Issue discussed:
TREATMENT AND RADIATION WITH RESULTANT LYMPHEDEMA AND BRACHIAL PLEXOPATHY
Related issues that have been identified:
1. Access to treatments.
2. Early diagnosis.
3. “Cutting edge” treatment.
4. Long-term consequences of treatment.
5. Qualified therapists
Possible solutions that have been identified:
1. Early patient education
2. Qualified medical personnel to allow patient early diagnosis.
3. Comprehensive standards of care.
4. Research for upcoming interventions.
5. Research on exercise to prevent long-term consequences
Resources needed to implement the Solutions:
• Basic CME courses for edema/lymphedema open to medical personnel to facilitate
faster referrals for patient to lymphedema diagnosticians and practitioners
• Funding and research personnel –develop research foundations
• Scholarships for lymph certification courses (possible donations from industry)
Recommendations to American Lymphedema Framework Project:
• Improve awareness of ALFP by LANA (Lymphology Association of North America), NLN (National Lymphedema Network
• Have the stakeholders meeting be a committee on the organization tree
• Explore avenues for scholarships and funding by targeting industries that have
received profit from the disease
Actions group members are willing to make:
• Provide continuing education to non-lymphedema staff (i.e. OT/PT/RN) via staff in
services
• Continue involvement with ALFP
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Excellent news. Although I do not have this, I applaud all efforts to make it ESSENTIAL that the medical profession be educated. Kudos, thanks and Hugs to barbaraellen.
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WOW...I have missed so much. Been so busy with my community that I forgot where my real priorities lie. You know.....the squeaky wheel thing. Firs tof all, welcome Susan, although I wish I was welcoming you into a different kind of club. You might try Lyrica for the pain...has helped me trenendously.
Dear Barbara...you have really given your all by going last Monday to the conference and making sure that RIBP got on the agenda. Now, at least we have a position thanx to you!
And dear Bonnie with your continuous wealth of information and your tenacity with helping all of us. OMG....the workbook. I was in step up earlier but didn't see that. I am going back in and ordering pronto. I will work diligently at this because am at the point where signing my name is about all I can do and "it ain't pretty"..
So all you new girls, feel blessed to find these two! I certainly do!
BTW....Norhthridge is right around the corner from us. I would love to meet them. Can we work something out? We can email about this.
(((((H)) Shari
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Thank you Barbara Allen a million times over!!!!!!!!!!!
Susan0 -
aww, girls, 'tweren't nuthin'...........the hardest part was spelling it out for everyone.
aside from bringing ribp up at the conference, the most progress was made, i think, with the le situation. i think it will all be on the step up speak out site. i hope they will keep us informed before the next meeting scheduled for next year.
my husband came up with the suggestion that doctors should be more aware of the importance of support for their patients, and encourage them to find others through direct contact or the internet. many women do not have access to computers or if they do it is very hard for them to find threads like this. direct contact could be made by offering one woman's phone number..........with her permission only.........to another patient. we already know how much we learn from each other. it saddens me to think that there are women out there who feel completely isolated. their doctors are in a position to offer them help.
i'm glad we were able to be there and to put our two cents in, so you are all quite welcome. it wasn't exactly an ordeal...........the food kept coming all day. if it wasn't for the scenery you would think you were on a cruise ship...............
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Good morning, all,
We just received this email from RAGE, the UK brachial plexopathy organization, and I'm wondering if any of you have tried this for pain relief:
Our committee [RAGE] are excited about a product FARABLOC - material which can be tailored to fit an affected arm and 'block out atmospheric/ electro magnetic influences. There are many sites for FARABLOC, It is manufactured in Canada and originally intended for phantom pain of amputees. I am waiting for a delivery but wondered if any of your members have reported experience. It sounds almost too good to be true!
Kind regards
Jan
RAGE UKThe Farabloc website is here:
http://www.farabloc.com/mhelps.html
Too good to be true? If you've tried it, please let us all know what your experience has been.
How's everybody? Been really quiet here, but would love to know how everybody's doing.
Hugs all around,
Binney0 -
I decided to be a guinea pig and try the farabloc for my hand pain. I bought the square piece instead of a mitt because I wasn't sure where I was going to use it. I received it yesterday and wore it last night. I have no idea how long I'm supposed to use it or when I should feel pain relief. Have to say that after wearing it for about 8 hours on my hand I don't notice a difference. However it is unclear to me whether I am supposed to use this on the part that hurts or the brachial plexus area. Also do you have to completely surround the area? If I tried to use it where the brachial plexus injury is I would need to wrap the neck and the shoulder/axilla. Did the RAGE folks offer any advice? How long do you need to use it to start to see a difference?
Thank you to all of you who continue to investigate and bring your resources back here. I am so grateful for all the work you do.
Best, Erica
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