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WHAT IS RADIATION INDUCED BRACHIAL
PLEXOPATHY? (RIBP)
Radiation-Induced Brachial
Plexopathy (RIBP) is a progressive and painful paralysis of
the arm and shoulder, brought on by radiation treatment for
breast cancer and certain other cancers. With improvements
in radiation technology, RIBP is rare these days, but can
still occur when multiple overlapping radiation fields or
high radiation doses are used. It most often involves
lymphedema of the affected arm and, like lymphedema, RIBP
can develop at any time following radiation treatment of the
area. There is no cure, though interventions are possible to
slow progression, optimize remaining arm and hand function,
control related lymphedema, and relieve pain.
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CONNECTING WITH OTHERS WHO HAVE RIBP
If you have RIBP it can be difficult to
find others to communicate with who share this
diagnosis. These resources may help:
The discussion boards at
BreastCancer.org include a
thread for women and men with RIBP. The site is public,
so you can read posts without registering. If you'd like
to join the discussion, registration is quick and free.
Participants offer one another encouragement, coping
tips, and information about any new directions in RIBP
research and treatment, as well as a comfortable and
understanding forum for airing the frustrations and
grief of living with this condition. Advocacy for RIBP
awareness among breast cancer patients, the medical
community and the public is another goal of the group.
In the UK, an organization
called
R.A.G.E. (Radiotherapy
Action Group Exposure) unites RIBP
patients for mutual encouragement and to advocate for improved
treatment and research. An annual £5 membership fee provides a
quarterly newsletter and a voice in their annual meeting. For
information, contact Jean McFarlane, Publicity Officer,
jeanmcfarlane@waitrose.comThis arm problem started with burning
in my hand and has now progressed so that I can't button things or
open jars or cans or do anything that requires fine motor skills.
Also my fingers are numb along with the constant burning and I have
arm pain that feels like a vice. Apparently, there is no treatment
for radiation-induced brachial plexopathy so this is a new
disability that I will have to deal with for the rest of my life. Searching for the energy to meet this new challenge.... – Erica
I had breast cancer just about 30
years ago, followed by radiation therapy just as all of you had.
I did not have nodal involvement, so I did not have chemo or any
other drugs. That's how I know the plexopathy came from the
radiation alone.
Within the first year my upper
chest became disfigured and discolored, so that was the end of
bathing suits, necklaces, or any neckline but a high one.
At 44,
one is not quite ready for such an assault on body image. But,
okay, I am supposed to be grateful to be alive. About 5 years
ago, my plexopathy problems began, but my radiation oncologist assured me
that it 'couldn't' be the radiation. It took a neurologist to
properly diagnose it.
Adding insult to injury, a year
ago I took a plane trip and my arm blew up like a leg of lamb.
No
one, in all that time, ever warned me about lymphedema. I had no
idea I was at risk for it once I had passed that important first
year. When you look up lymphedema, the first thing it says is, you
are always at risk if you have had surgery or radiation, and you
should never fly without compression on your arm.
So now I have two permanent,
debilitating, and extremely unattractive conditions, neither of
which might have happened if I had been forewarned. I suppose
I
should still be grateful, but I really would have enjoyed being
able to lift my two little granddaughters, 1 and 2, and put pony
tails in their hair and make cookies for them. – barbaraellen
I have been dealing with the
lymphedema for quite some time now but the brachial plexopathy just
started in December of last year and has just about debilitated my
right hand (I am right handed), and the numbness and nerve pain is
driving me nuts! The worst part is no one, and I mean no one, seems
to be able to help me. They just kind of shrug their shoulders. I am
on Lyrica and that helps some with the nerve jumping in my hand. Like
barbaraellen, I too have lymphedema, which compels everything! I
would be willing to go anywhere in the world if someone could help.
That's the most frustrating part is finding someone to help with
this and at least keep it from getting worse. Even knowing that I am
not the only one helps, too. – Sharalyn
This is a monster to live with and
has dramatically changed my quality of life. I was treated for
breast cancer ten years ago and have been dealing with lymphedema
for seven. I was never told or warned about this stuff in any way.
–
ronimom
The pain (burning) and numbness drive
me to distraction. I do not use Lyrica because I am an intermediate
metabolizer of tamoxifen and don't want to risk that Lyrica would
inhibit my tamoxifen benefit. The hand symptoms have really made it
difficult for me to work and sleep. I have mild lymphedema in my
affected hand that started about two to three months after the symptoms of
the brachial plexopathy. I haven't sought treatment for that yet as
I have been overwhelmed with other cancer issues. Hearing the
comments about how they interact, I think I need to get myself to a lymphedema specialist as well. – Erica
Last year I went to Johns Hopkins, to
the only guy whose secretary said that he treated adults for
brachial plexopathy. I
specified that my brachial plexopathy came from radiation, not a trauma or accident,
and they checked it out and said, come on. So we fly from Chicago
to Baltimore and see this doctor for maybe two minutes. His assistant
already filled him in on the up-teen pages I had to fill out first.
The doctor says, you have to make an appointment to get a neurogram in
Philadelphia! Nobody mentioned that that was the necessary next
step, so we had to fly back home and then fly again to Philadelphia.
They say there are only a few machines in the country that show the
nerves this way, and it is a very new and sensitive test. I thought
we're going to walk into a space age lab. It was a very crummy
office in an even crummier neighborhood. The machine looks exactly
like an MRI machine and the exact same procedure takes place, noise
and all. Then they tell us these results have to be analyzed in
California, it'll take weeks to get any kind of report. Many, many
weeks later, after endless phone calls and emails, my results were
described very briefly like this: the nerves are all matted together
because of the radiation and there is nothing we can do surgically
besides make it worse. – barbaraellen
very anxious as it is getting cooler
here nights and mornings and I have a huge intolerance to any
temperature under 74 degrees. . .pain begins. I call it the "rose
thorn people come around to visit me". Yes. . .thorny
tingling. . .that's what it is. – Sharalyn
For anywhere from say, 24 or 25 years
post-radiation, which was not cobalt, so don't let them kid you, I
was symptom free. I think. The first clue was my handwriting,
which was getting sloppy. I figured it was arthritis or something,
and my radiation oncologist was only too happy to agree. I can map the progress
via my grandchildren. My daughter had me caring for my now 6 year
old 3 days a week when he was a newborn. I noticed no problem.
I
could carry, change and feed him easily. but I did notice that
I
was having trouble lifting his 2 year old cousin. Again, I
attributed it to natural causes, although I did start to question my
doctors. I was pooh-poohed away. I could open some jars and
containers, but not others. I started to avoid side zippers, but
could still handle front ones. I could use a knife on soft
vegetables, but not hard ones. I started to order fish in
restaurants instead of steak because I was afraid of making a mess.
And still my radiation oncologist assured me it couldn't be the radiation.
Three
years after my 6 year old was born, my first granddaughter was born,
and.....I could not lift that 7 pound infant up in my arms. My son
put her in my arms as I sat down and held a bottle for her. I had
to ask him to take the bottle because my hand was trembling so, I
was afraid I would drop it on her. That was when I finally decided
to see a neurologist. . .all of which leaves me nowhere, with two
permanent, disabling, ugly conditions, one of which can be somewhat
controlled, and the other that no one has any idea how to control.
This is tough company, honey, but it's company. – barbaraellen
With this lymphedema and/or brachial plexopathy, it's hard to
stay positive but sometimes I need to sit down, take in deep breaths
(alone of course) and think about the beauty and blessings that I do
have. – Sharalyn
I have lymphedema and brachial plexopathy. Right arm and
hand, and I am a rightie. My chemo, stem cell transplant and
radiation were 10 years ago. I have worn custom Class 1 lymphedema
garments and a JoviPak at night for the past 8 years. A few years
ago I noticed I was losing strength and feeling in my right hand,
and I now have tingling, burning, limp hand with out-turning wrist,
and sensation that my right hand is going to explode 24/7. Very
difficult to tolerate day-to-day. I am being challenged by a bone
spur-arthritis in my left thumb. I am now wearing splints, hard and
soft, on my thumb. I cannot chop or cut anything on my plate. My
children and my friends cut things up for me. I have to ask for help
more than I like. I had to retire early because of my disability. I
live a full, purposeful life and I have lots of support. – ronimom
As much as I hate to say I can't do
something, I am getting better at asking for help. – Lefty
For 18 months I worked out 2-3 times
a week with a personal trainer, and it was really helpful. My
trainer held my hand around weights and helped me exercise my whole
arm and it began to make a difference in the size of my right arm
almost immediately. I also learned how to eat more protein and be
less hungry and less apt to snack. All this has kind of enhanced my
metabolism, or something. And I have lost 50 pounds since then, and
can wear a size med-large sweater instead of the 1X I was buying to
fit my arm and big waist. The bad thing is I have difficulty working
out in any gym by myself, because I need so much help adjusting the
equipment, moving things out of my way, etc. – ronimom
This arm is starting to hang down
like a club, which is not too good for the lymphedema. I have to be careful
lifting it now, because if I lift it too high or too suddenly my
upper arm goes into a painful spasm. That was last month's
selection. It's like belonging to surprise-of-the-month club. – barbaraellen
I am glad I'm alive, but what a way
to have to live!!! – ronimom
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COPING TIPS
 Those soft, mesh-like rolls
of non-skid shelf liner can be cut into convenient sizes to
lay out on the counter or kitchen table, where they'll
steady a plate or mixing bowl. Or use it to hold your toast
steady while you spread it with butter and marmalade. It can
also be used as a grip aid to open jar lids. Available
at
YouCan TooCan.
Ronco Bagel Cutter
High-quality surgical
stainless steel Bagel knife that slices evenly and
quickly Full tang throughout the blade and handle on
knife Dishwasher-safe bagel knife Keeps fingers safe
Cuts Bagels into Quarters with the bagel slats Cuts
Bagels so thinly Slices so thinly, you can make
Bagel Chips! Cuts bagels, bialis, english muffins
Removable crumb catch tray
Larien
Bagel Biter
This guillotine for the
kitchen will strike fear into the heart of the most
stalwart bagel. No more monkeying around with bread
knives and spraying crumbs everywhere, this device
is fun, safe and efficient. Easy and safe to
operate with one hand!
Fasta
Pasta Microwave Pasta Cooker
Fasta Pasta allows you to
quickly cook pasta right in your microwave. Two
holes on the lid help you measure pasta portions,
and lines on the inside make adding the right amount
of water effortless. The straining lid is convenient
for removing water after pasta is done cooking, and
you can even add sauce, butter, or cheese right in
the cooker--no extra dishes needed!
Comment by ronimom:
It is light and easy to handle with one 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.
Chef'n Garlic Zoom
- Whimsical wheeled gadget chops garlic as it
rolls
- Clear acrylic with stainless-steel blades
- Place garlic cloves inside, run back and
forth on counter
- Easy to see when chopping is done; no garlic
smell on hands
- Blade unit removes for cleaning; top-rack
dishwasher-safe
Comment by ronimom:
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.
 For single-handed dining,
here's a fork and knife in one, with the knife-edge built
into the side of the fork:
 Electric knives have a power
handle with detachable blades that make it easy to cut
anything from fresh bread to the toughest chunk of meat.
They come in a wide variety of styles, both cordless and
plug-in, so shop around and find the one that fits your hand
comfortably.
"I am on my 2nd electric
knife, and hold my right arm and hand behind my back when I
use it." – ronimom
 The
Black and Decker "JW400
Lids off Open It All Jar Opener Can opener Combo" sits on
the countertop and opens bottles, cans and jars with the
touch of a button.
 The portable
Tranquility Zone
Lighted Lapdesk is good for reading, writing or as a
workspace. The light is adjustable, and it has a comfortably
cushioned base.
 Amazon's
Kindle Wireless
Reading Device is pricey, but it eliminates the need
for troublesome page-turning – excellent for reading in bed.
Over 200,000 books are available for use with it from
Amazon, including most best-sellers, each for around $10.00.
Buy books directly from your Kindle and they're
auto-delivered in less than one minute. It holds over 200
titles. Lightweight, thin, and manageable – just click to
turn the page.
NOTE:
Some colleges and universities are now starting to make
their textbooks available on Kindle. If you're
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 and
weight of the textbooks stand in your way.
For those who want to read a
low-tech, old-fashioned, paper-paged book, turning the pages
one-handed is easier with one of those
equally old-fashioned
rubber fingertips. If you're reading to children or
grandchildren, let them wear the fingertip and turn the
pages for you.
 If you're a bridge player –
or even an Uno player –
simple card holders are available in
a variety of lengths to make it easy to display and manage
your cards.
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 Magnetic sew-on "buttons" are
available for ease of dressing. These are small magnets with
four holes at the edges so they can be sewn in place under a
regular button. They're strong enough to keep your clothes
securely fastened even through a big sneeze, and they're
extremely easy to manage. Not cheap, but worth it for frustration-free dressing.
Velcro® Style Button Aids
These Button Aids press together to
replace regular buttons, thereby enabling users to be more
independent in self dressing. Fits most standard button holes.
Machine washable. Comes in packages of 10. Latex free.
These
button hooks with zipper pull are
two aids in one — the Hook answers buttoning needs, and the
Zipper pull attaches to hard-to-handle zipper tabs, making
it easier to zip. Adds leverage to small zippers. Latex
free.
 Buckingham
Bra-Angel
Specifically designed to assist
those with mild to moderate upper limb restrictions or
limited hand dexterity. The Bra-Angel holds one end of
the brassiere securely while the other end is brought
around the body and attached. It enables those who have
the use of only one arm to be able to put on their bra
independently. Adjusts to a wide variety of sizes. The
telescopic action allows the Bra-Angel to be compacted
and easy to carry. 16"L x 11/2"W. Latex free.
 Wearease
offers a kit for converting shoes with ties to easy Velcro
closures. No special tools are needed and conversion is
quick and simple. Comes in black, brown, tan and white.
 Curley laces
(coilers) are available
in a wild range of colors, or stick to the conservative basics of white, black and brown. Shoes slip on
and off without tying.
 Lock laces have a more
athletic look, as they're used by runners and other
sports-types who don't want their speed checked by tangled
or unruly laces. Shoes slip on and off easily with no tying
or adjusting.
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PERSONAL,
HAIR AND NAIL CARE:
Countertop dispenser makes it easy to
put correct amount of toothpaste on brush.
Just align toothbrush with guide under
nozzle and press long lever down with hand
or arm. Accepts a 4.3 or 4.6 oz. stand-up
pump style canister. White plastic. Latex
free.
An adjustable-height hair
dryer stand lets you style and dry your hair without having
to handle the dryer.
Here is another:
A "hot brush" is a curling
brush and hair dryer in one. Dry and style your hair easily
with one hand.
"I use a brush that
blow-dries
and I sit down and rest my hand on my knee for support and
it works!! Oh...and a good hair cut once a month is the
real key for me." – Sharalyn
"With only my left arm,
ratting my hair was impossible. I took a potato chip
clip (the kind that holds the bag closed), ran a string
through the little holes and tacked it to my bedroom
ceiling. It grabs a hunk of hair and holds it while you
rat away! Vain, but I hated having flat hair." – epete
 One-Handed
Nail Care
Designed for people with weak grasp or use of only one hand.
Deluxe model has durable base with pivoting nail
clipper. Arched ramp accommodates
different finger thicknesses. Replaceable
emery boards secured by thumb screws both
horizontally and vertically. Economy model
has heavy-duty clipper and attached strip of
filing paper. Both models secure to table
top with suction cups.
 Etac
Nail File Holder
Fits securely into the entire hand. Ideal for
people with limited grasp. Comes with emery
board. 41/4" (12cm) in length; weighs only 1.5
oz. (43g). Latex free.
 Suction
Emery Board
The Suction Emery Board consists of two grades
of emery cloth covering a 4" (10cm) long board.
Two suction cup feet keep the board stationary
while filing nails.
 Touch
n' Brush® Hands Free Toothpaste Dispenser
Makes one hand all you
need for your toothpaste.
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WRITTEN COMMUNICATION:
Limited strength
and dexterity in your hand makes it
difficult to handle pens and pencils, as
well as silverware and craft items such
as crochet hooks. Making them larger can
result in a better grip and ease of use.
Bic makes a
lightweight, large barrel, soft-grip pen
that's perfect for this purpose. It's
called
BIC XXL, and
it's available at office supply stores
or the chain department stores.
 Any
pen or mechanical pencil (or eating
utensil or craft tool with a similar
shaft) can be made larger with a fitted
grip made of
Crayola Model Magic.
It's
an easy-to-handle clay in a wide variety
of colors that can be rolled onto the
shaft of your pen, spoon, or tool and
shaped to a personalized fit for your
own hand. It dries when exposed to air,
so will be hardened and ready to use
within a day or two. If you buy it in
the bag you should plan to use it all in
one modeling session, as it will dry out
without an air-tight container. If you
have big plans for this stuff, it can be
bought by the 2-pound bucket in both
neon and natural colors and stored in
the bucket for later use. Darker colors
(black, for instance) might be a good
choice, since they don't show the grime
of constant handling.
 A
spongier material for this purpose is a
roll of 2- or 3-inch wide self-adhesive
bandage wrap, such as
Coban.
Buy it at any drug store and wrap it
tightly around the desired area until
it's as thick as you'd like. A line of
white glue along the edge will assure
that it stays in place despite hard use.
 FrogPad
makes
one-handed keypads for either left or right hands. They're
small (5½" x 3 ½"), but they perform all the functions of a
standard keyboard, with standard-sized keys for easy use.
The arrangement of the keys is not standard, though, so
patience is called for to relearn keyboarding with the new
arrangement. Once you're back up to your former typing speed
you'll find it's easy to use and easy on your hand as well –
unlike one-handed pecking on a standard keyboard, there are
no long stretches to reach any keys.
It's possible to learn to
write using your non-dominant hand. It just calls for
perseverance and a sense of humor – and maybe a few of those
wide-lined writing tablets they use in the early elementary
grades."Right
now, I am starting to train my left hand to write...am
starting with crayons and a detailed coloring book...don't
laugh cause it's true." Sharalyn
"I learned to print
with my left hand when my friend who is a speech
therapist told me she teaches stroke victims to write
with the unaffected hand. Her advice was to start with
all caps. I have progressed to caps and small letters.
My writing is large like a first grader's, but it is
writing!! Small steps help. My signature is very poor
penmanship, but it is mine!!!" - ronimom
Here's a new workbook
developed by two experienced Occupational
and Hand Therapists to help you learn to
write with your non-dominant hand.
Handwriting for Heroes: Learn to Write with
Your Non-dominant Hand in Six Weeks
is an encouraging but
no-nonsense program for those who are
serious about switching dominant sides.
Daily and weekly practice assignments, tips
for assuring success, and plenty of
encouraging words are offered in a framework
of adult interests and sensibilities – no
more first-grade writing tablets and
kid-level practice sentences! The workbook
is well-organized, clear, and comprehensive.
The authors even invite the user to
visit their website
to ask questions
or report on their progress. It should have
been spiral bound for ease in laying it
flat, but we tried bending the workbook's
spine and that does keep it from becoming a
frustration.
 The advertising for a leading
speech recognition system says, "Just about anything you do
now by typing can be done faster using your voice. Create
and edit documents or emails. Open and close applications.
Control your mouse and entire desktop." In reality, it takes
some time to "train" the voice activated system to
understand your speech and type accordingly, but saves both
time and frustration once the adjustment period is over.
"I use a speech recognition
software for typing as I also can't type anymore with my
right hand. It is slow and frustrating but gets easier with
time." – Erica
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 A
spinner knob on your
steering wheel allows you to steer with one hand. These
knobs, popular hotrod accessories, are illegal in some
states except when used by someone with a disability. The
"standard spinner knob" is large and easy to grip.
 Adaptations such as the
"palm spinner"
can be used if the grip in your usable hand is compromised
by arthritis or other injury. Installation of a spinner
knob will require you to re-take your driver test using the
adaptation. Be sure to keep a copy of your spinner knob
permit in your glove compartment.
"In case some cop spots
you and decides you look like a wild-child, out to do
mischief with your one-handed driving, you can just whip
out your 3 or 4 page document and let him examine it as
long as he likes." – barbaraellen
 Is there a way to ride a bike
safely with one hand? We found a 2004 article
about four
engineering students who discovered a way to stabilize bikes
for one-handed riding. Though their invention is not
commercially available, we located a similar product called
a "Hopey steering damper," a hydraulic device that provides
"a more controlled, stable, less-busy ride." At around $230
it's not cheap, but it can be installed on the handlebars of
most bikes
and gives significant added stability when turning
sharply or hitting bumps.
 A
less expensive alternative for
stabilizing your bike's steering is
an old technology of attaching a
short, sturdy spring between the
headset and the frame. This helps to
bring the front wheel back into line
quickly in case of bumps or sharp
turns. Some bikes come with them,
like the
Gary Fisher Simple City 8
(above left)
or the
Electra Holiday Townie 3i
(below right)
. You can rig your own bike
with
 this
kind of stabilizer with the help of
your local bike shop. Whatever you
select, keep in mind that one-handed
riding is still risky. Plan your
route to avoid difficult or
dangerous terrain, and of course
always wear a safety helmet.
 There are other riding
options as well. The
three-wheel adult bike is stable by
design and offers plenty of room in a back basket for
lugging groceries or a picnic lunch.
 A more companionable way to
get around is on the
back of a tandem, where you benefit
from the exercise of pedaling with none of the headaches of
steering and stopping.
  These
half-finger gloves can be made on any 3.4 inch in gauge
round knitting loom. The blue 24 peg Knifty-Knitter
round knitting loom is perfect, many stitches can be
made with one hand if you're able to steady the loom
with your other arm, the designer uses an icing
turntable propped on top of her chest with a cushion to
stop it sliding off. Or ask a "crafty" friend to
knit you a pair. The designer, Helen Jacobs-Grant, is
wheelchair bound and suffers from cold intolerance due
to nerve damage. Her original pattern is available on
her
Blog
and on
Ravelry
as a free download.
 Grabber Mini Handwarmers can
be bought in packs of three pair.
Each one warms in minutes and
lasts up to seven hours. Activate it by exposing it to the
air, then put it in your pocket, where you can re-warm your
hand between chores. Or use them in your glove outdoors on
wintry days. Available at sporting goods stores, because
campers and hikers love them.
"I make a hand
warming bag out of raw rice (or corn) in
a sturdy sock which I tie or rubber band
at the 'ankle'. I microwave that
for 60 to 90 seconds. it stays warm for
up to 20 minutes." - apple
LYMPHEDEMA CARE:
 Neosporin's
NEO TO GO! First
Aid/Pain Relieving Antiseptic Spray is a non-aerosol
antiseptic spray that fits in your purse or pocket, so you
can keep it handy for unexpected nicks or scratches.
Designed to be used easily with one hand.
Control of swelling can reduce lymphedema-related pain and discomfort and ease
the weight of a dependent (unsupported) arm. Brachial plexopathy limits the
natural arm movement that helps pump lymph fluid out of the arm and back into
circulation. The static downward-hanging position of the arm also causes fluid
to collect in the hand, causing more pumping problems. Manual Lymph Drainage, as
part of a complete program of lymphedema self-care, can help clear lymph fluid
from the arm, but it can also be difficult, tiring or just plain frustrating to
do. In consultation with your doctor and your lymphedema therapist, you may
consider the use of a gentle pneumatic device for home Manual Lymph Drainage,
such as the Flexitouch System.
Your therapist can arrange for a company representative to give you a free,
private demonstration so you can judge it's potential for helping you with
self-care. Newly designed garments for use with the system offer ease of use.
The gentle action of the Flexitouch is tolerated well by patients with pain and
sensitivity to touch. During the once or twice-daily treatment you are free to
watch TV, listen to
music, talk on the phone or simply relax.
The company is helpful and experienced in pursuing insurance and Medicare
coverage.
"I've been using
Flexi-touch for nearly a year now in my home. It is
relaxing, seems to help with my hand pain. My insurance
paid full amount. Worth checking into." – epete
Treatment
Strategies
Even though there
is currently no cure for RIBP,
comprehensive care of this condition
should continue to include strategies to
control pain, support psycho-social
adjustment to the progressive nature of
this condition, slow progression through
appropriate exercise, and adapt to
changing arm and shoulder stabilization
needs. Excellent lymphedema control is
challenging but essential for pain
reduction, lessening of shoulder damage
from the added weight of a swollen arm,
lowering infection risk, and reducing
the impact of further fibrosis
(hardening) of the tissues. Physical
therapists and occupational therapists
with specific training in lymphedema can
address the whole range of RIBP needs,
but may lack experience with this
uncommon condition. The suggestions
below are meant to guide you and your
therapist toward workable interventions
to ease all aspects of coping with RIBP.
-
Pain
control [coming soon]
-
Anti-depressants and other
medications [coming soon]
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Arm And Shoulder
Support
Here's
a possible
solution for supporting the shoulder despite advancing
paralysis, especially if bending the elbow causes pain or
cramping. The shoulder sling adds support for the shoulder
joint so that it does not continue to droop, but does not
constrict the lymph flow. It can be worn with compression
garments to help control hand swelling, and the slight lift
to the lower arm will also help control lymph congestion.
These are
some supports for the arm that are used with stroke
patients. They have a humeral cuff, and possibly your
therapist can change out the forearm support to thera-tubing
so that the springiness of the tubing promotes some elbow
flexion and extension. In this way some passive lymph
drainage can occur when you're walking around.
This one is an example, it can be found at
Sammons-Preston online and has an additional forearm
cuff.
A
local orthotics
supplier should be able to order something like it.
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Shoulder sling adaptations
AliMed Hemi Shoulder Sling
-
The shoulder saddle serves as a secure anchor point.
and the
scapula bears the arm weight.
-
Distraction straps adjust up or down and can control
rotation.
-
The cuff is lined with cool, open-cell polyurethane. It
can't slip.
-
It offers full joint mobility
-
An elastic panel accommodates muscle volume changes.
-
A biceps-triceps belly band locks cuff in place.
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AliMed Hemi Shoulder Sling
This is more lightweight and versatile than conventional arm
braces. Shoulder saddle and humeral cuff are connected
by three highly adjustable distraction straps that allow
for full joint mobility while supporting the shoulder.
Sizing: Measure arm circumference at widest point of
bicep. Round up if between sizes.
-
X-Small fits 9" circumference
-
Small fits 11" circumference
-
Medium fits 13" circumference
-
Large fits 15"
circumference
Patent #5,403,268
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page
 GivMohr
Sling
GivMohr Sling
is an innovative new design based on the principles
of neuro-developmental treatment. It promotes functional positioning of the
arm while standing and walking and
naturally reduces shoulder subluxation
(partial
dislocation that results in drooping).
It
helps protect
the arm from injury and is easy to apply and
to custom fit.
Sizing: Measure distance between right and left
acromion of scapula.
-
Small, 13"
- 14"
-
Medium,
15" - 16"
-
Large,
17"+
-
X-Large
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Night
garment options
 The custom made garment
here was designed by JoviPak. The
arm loop supports the lower arm, so when you shift position in your
sleep your arm shifts with you. If bending your elbow to this angle is a
problem, the lower edge of the garment can be extended in order to place
the support loop lower. This company will place a zipper in the forearm
or upper arm area of the sleeve if your fitter requests it, to make
donning easier. The separate glove, with zipper and Velcro closure, is
also easy to put on and remove.
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Sleeping Positions for RIBP
Keeping your arm and hand
elevated on pillows throughout the night can
help reduce swelling from lymphedema. But it can
also be a challenge. Here are some comfortable
positions suggested by occupational therapist
Naomi Aaronson MA OTR/L CHT.
Special thanks to
Ann Marie Turo, OTR/L for her taking of these
pictures.For
back sleepers, make a nest of two pillows for
your head and shoulders and lay another across
your abdomen to support your affected arm. The
arm can be extended if flexing is difficult.
For arm support while sleeping on your
side, "hug" a pillow between your arms, affected arm on top.
To sleep with your arm extended, use a longer (king size)
pillow or body pillow.
For hand and finger swelling this
support position provides additional support.
"I had already been sleeping with
an extra pillow to raise my arm up, and made a small
pillow out of a sleeve from an old shirt to lay under my
arm when sleeping on my side to keep hand from falling
down across my belly. It works better than a full size
pillow. I got the idea when I rolled up a fleece throw
to that size and slept with it. Since it was smaller
than a bed pillow, I didn't get as hot over night but it
was stiff enough to support the weight of my arm.
"I just cut the sleeve off an old shirt straight
out from the under arm seam where the sleeve is sewn
onto the body of the shirt (didn't cut the round
area at the top of the sleeve), turned it inside out
and made a seam across the opening. I turned it
right side out again, stuffed it rather firm with
poly fiberfill through the cuff, and sewed the end
of the cuff and the button placket shut. I put it
under my arm when I am sleeping on my side to help
hold my arm flat (keeps my wrist and hand from
falling down across my belly). You could even make
one out of a straight piece of fabric (approx 16-20
inches long by 8-10 inches wide), just long enough
to reach from your elbow to the tips of your
fingers."--
lvtwoqlt
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Supportive
accessories
 Sansu
makes a
three-in-one shoulder bag that includes a discrete
arm sling incorporated into the back of the bag.
Large lobster-claw clasps allow one hand operation.
It has an extra-wide carrying strap for shoulder
comfort, or it can be carried hands-free with the
contoured body belt.
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Lymphedema Control
coming
soon
Lymphedema Therapy
coming soon
Lymphedema Garments
coming soon
Kinesio taping
Pneumatic decongestion
devises
coming soon
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EXPERIMENTAL TREATMENT OPTIONS
France
Kinetics of response
to long-term treatment combining pentoxifylline and tocopherol
in patients with superficial radiation-induced fibrosis.
Delanian S,
Porcher R,
Rudant J,
Lefaix JL.
Service d'Oncologie-Radiothérapie, Hôpital Saint-Louis, 1 Ave
Claude Vellefaux, 75010 Paris, France. sylvie.delanian@sls.ap-hop-paris.fr
PURPOSE: Significant regression of radiation (RT) -induced
fibrosis (RIF) has been achieved after treatment combining
pentoxifylline (PTX) and alpha-tocopherol (vitE). In this study,
we focus on the maximum response, how long it takes to achieve
response, and changes after treatment discontinuation. PATIENTS
AND METHODS: Measurable superficial RIF was assessed in patients
treated by RT for breast cancer in a long-treatment (24 to 48
months) PTX-vitE (LPE) group of 37 patients (47 RIFs) and in a
short-treatment (6 to 12 months) PTX-vitE (SPE) group of seven
patients (eight RIFs). Between April 1995 and April 2000, women
were treated with a daily combination of PTX (800 mg) and VitE
(1,000 IU). RESULTS: Combined PTX-vitE was continuously
effective and resulted in exponential RIF surface area
regression (-46% for LPE and -68% for SPE at 6 months, -58% for
LPE and -69% for SPE at 12 months, -63% for LPE and -62% for SPE
at 18 months, and -68% for LPE at 24 and 36 months). The mean
estimated maximal treatment effect was 68% RIF surface area
regression. The mean time to this effect was 24 months and was
shorter (16 months) in more recent RIF (< 6 years since RT) than
in older RIF (28 months; P = .0003). Symptom severity
(Subjective Objective Medical Management and Analytic Evaluation
score) was halved in both groups. After treatment
discontinuation, mean RIF surface area at 1 year had increased
by +40% in the SPE group (rebound) and +8.5% in the LPE group.
CONCLUSION: Under combined PTX-vitE treatment, RIF regression
was exponential, with a two-thirds maximum response after a mean
of 2 years. There was a risk of a rebound effect if treatment
was too short. Long treatment (>/= 3 years) is recommended in
patients with severe RIF.
Publication Types:
PMID: 16260695 [PubMed - indexed for MEDLINE]
China
NEUROLYSIS PLUS FLAP SURGERY
Diagnosis and operative treatment of radiation-induced
brachial plexopathy.
Lu L, Gong X, Liu Z, Wang D, Zhang Z.
Department of Hand Surgery, First Hospital Affiliated to
Jilin University, Changchun 130021, China.
Lulaijin@public.cc.jl.cn
OBJECTIVE: To explore the diagnosis and operative
treatment of radiation-induced brachial plexopathy.
METHODS: Nine cases of
radiation-induced brachial plexopathy were divided into two
groups, 4 cases undergoing neurolysis of brachial plexus as
Group A and 5 cases undergoing transfer of myocutaneous
flaps after neurolysis as Group B. In Group B, 4 cases were
treated with latissimus dorsi myocutaneous flaps (about 20
cm x 20 cm) and 1 case with pectoralis major myocutaneous
flap (about 8 cm x 6 cm).
RESULTS: All the 9 cases of radiation-induced brachial
plexopathy were followed up for a period of 2 to 5 years,
with an average of 2.3 years. As far as pain relief and
function recovery were concerned, the results of Group B
were better than those of Group A.
CONCLUSIONS: Based on the
results of Group B in the series, we suggest that the
procedure of covering the wounds with transferred
myocutaneous flaps after neurolysis of the brachial plexus
should be performed to those advanced patients. The
procedure may improve the blood supply of the fibrotic
brachial plexus by reestablishing a good nerve bed.
PMID:
12443571 [PubMed - indexed for MEDLINE]
Israel (coming
soon)
The United
States (coming soon)
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MORE ABOUT RIBP
Brachial plexus neuropathy is a relatively rare
complication of modern radiotherapy, although, in
the past, its incidence was much higher. It has been
predominantly observed in women treated with high
dose per fraction or with overlapping fields. The
most remarkable data on this complication come from
the Umea series, in which, over 30 years after
hypofractionated radiotherapy with possible field
overlapping, more than 90% of women developed
complete paralysis of the arm.
The damage continued to progress up
to 30 years after radiotherapy. The latency period
for this complication ranges from 1.5 to 10 years (7
to 14 years for complete paralysis), and is similar
for motor and sensory impairment. The late
presentation of damage results from slow turnover of
tissues, which attempt cell division many years
after injury. Lost tissue is then replaced by fibrosis,
leading to formation of dense, inelastic and
constricting tissue. Brachial plexopathy is strongly
correlated with late fibrosis and muscle atrophy
within the shoulder region. The damage may encompass
the whole plexus or only its lower part.
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What
are the symptoms of RIBP?
Brachial plexus neuropathy is
defined as motor or sensory symptoms or physical
signs, with or without accompanying pain in a
nerve-root distribution in the arm. Neurological
manifestations may include paresthesia
(abnormal physical sensation, such as itching or
tingling) in the fingers
or hands, hypoesthesia
(decreased touch sensitivity) , hypoalgesia
(decreased pain sensitivity), disesthesia
(distorted sense of touch),
paresis
(partial paralysis), hyporeflexia
(weakened reflexes)
and muscular atrophy
(wasting). The limb
weakness may be selectively distal
(toward the hand), global with more
marked distal deficits or a complete flaccid
paralysis. Most women have abnormal neurophysiology
findings: absent sensory nerve action potential,
axonal changes, myokymia
(muscle contractions, twitching) and prolonged F-waves.
Magnetic resonance imaging studies show only
soft-tissue fibrosis.
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What are the
causes and risk factors for RIBP?
The incidence of RIBP
depends on total dose, dose per fraction (low a/b
value) patient age and concomitant use of
chemotherapy. Frequently, the toxicity results from
unplanned overdosage originating from field overlap
caused by changing the woman’s position between
treatment fields or from ‘matchline’ problems.
One of the suggested
pathomechanisms of radiation-induced neuropathy is
nerve entrapment by radiation-induced fibrosis,
chronic oedema, or both. Another postulated cause
was direct damage to neurones or glial cells and
ischaemic damage resulting from microvascular
injury. There are probably two phases of
radiation-induced neuropathy: the first includes more
direct changes in electrophysiology and
histochemistry, whereas the second involves fibrotic
changes around the nerves and injury of the adjacent
vessels.
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How is RIBP diagnosed?
A proportion of women
with breast cancer experience some degree of
post-surgery shoulder stiffness, which may further
be aggravated by the use of axillary radiotherapy.
Symptoms usually include reduced flexion, external
rotation and abduction, and pain at movement or at
rest. In some women, this leads to reduced working
ability.
Shoulder stiffness is usually caused by fibrosis of
the major pectoralis muscle and damage to
vasculature or to the joints. Movement range may
also be decreased as a result of lymphoedema or
neural damage. Symptoms usually appear after a
median latency of 4 years . Increased risk of
radiation-related impaired shoulder mobility is
related to the use of large doses per fraction (low
a/b value), older age, use of concomitant systemic
treatment, co-existence of subcutaneous fibrosis and
degree of movement impairment at the start of
radiotherapy.
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How is RIBP
treated?
Radiation induced brachial
plexopathy is irreversible.
To diminish the consequences
of shoulder and arm problems, women should be
recommended physical exercise programmes. However,
some women with oedema or neurological deficits may
not be able to follow these programmes.
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REFERENCES
Complications of Breast-cancer Radiotherapy
Clinical
Oncology, Volume 18, Issue 3, April 2006, Pages
229-235,E.
Senkus-Konefka, J. Jassem
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SOME SUGGESTIONS FOR FURTHER STUDY
http://www.emedicine.com/pmr/TOPIC121.HTM
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Page Last Modified
03/09/2010
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