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Topic: radiation-induced brachial plexopathy

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jan 9, 2008 11:33PM - edited Aug 30, 2009 02:55PM by Erica35

Erica35 wrote:

Looks like I'm special as I'm one of the <2% of patients who get this complication. Really tired of being special...

I don't want to scare anyone off of radiation....it's an important part of breast cancer treatment. There are risk factors for my complication such as supraclavicular and axillary radiation, high rads dose, young age, and concurrent chemo. If you have had paresthesias (burning, tingling, etc), numbness, swelling, or weakness in your radiated side could you respond to this? Since it is so rare, there is not much literature for me to go on about my prognosis. Looking for someone else with experience. I think it might be related to my having avastin after radiation.

Any of you other gals in the avastin treatment after radiation have any problems with arm pain, hand paresthesias, hand or arm weakness?

I'm really struggling through this freaking marathon, after having surgery, 4 months dd chemo, more surgery, radiation, 5 months avastin/xeloda continously since July 2006 I am now facing multiple complications. First I had a lung injury from the interaction of avastin with radiation which left me breathless and unable to exercise for a few months (started beginning of October, now resolved). Then I had this arm problem which started the end of October 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....

Best, Erica

See profile for treatment history Dx 7/3/2006, IDC, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2-
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Feb 4, 2008 09:09PM amandaj wrote:

I know that you are tired of being special.  I feel the same way.  If there is a complication related to treatment or surgery that is unique, I probably had/have it.  Unfortunately I can't identify with your particular problem as I do not have any lasting effects from radiation, but there are plenty of other goodies in the bag! 
Keep on keeping on!
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Mar 9, 2008 04:53PM velcro wrote:

I have been experiencing tingling and a strange sense of movement in my torso, leg and arm.  It started three weeks into radiation and everyone felt it was unrelated to the treatment.  It is now four months since my last radiation session and the sensations have increased.  I feel likethe left side of my body is shaking and "nervous."  I have been to a neurologist and had CAT scans, MRI and EEG as well as blood work.  Everything comes back fine but my l left side still feels as though there is an electrical current running through.  I am back to the radiation oncologist this week for yet another appointment to see if there are any answers.

I am also having trouble finding information and everything I read indicates that I would not have this reaction so quickly.

I am sorry to hear about your frustration.  Hang in!

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Mar 25, 2008 09:45PM sharjo wrote:

I'm glad to find this site.  I have had radiation induced brachial plexopathy since 1997.  I have not found anyone that had this condition until now.  I have adapted fairly well but, it's been difficult doing things with only one hand.  I would like to chat with anyone who has been living with brachial plexus injury.

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Apr 7, 2008 12:16PM bill3144 wrote:

i have radiation induced plexopathy that was finally diagnosed only after telling the doctors what my problem was. i am male and was treated for base of tongue cancer in 2004. I started having my first symptoms in 2007. I first developed what i thought was carpal tunnel in my right hand. Then I started having a strange burning fluttery feeling in my left shoulder. The symptoms have progressed to involve both hands and both shoulders with a numbness running down both arms to my hands.I have extreme weakness in my arms that seems to progress daily. My radiation oncologist acts like i couldn't have caused this because I didn't radiate that low. The problem was caused by concurrent chemo ( cisplatin & taxetere) and 77 Rad of radiation. I dont get a fuzzy feeling when they say this is rare. Out of this treatment I have Chronic dry mouth, tongue neuopathy (chronic burning of tongue) and altered taste (salty). I have not been able to eat solid food since treatment and I have Dysautonomia that causes wild swinges in my blood pressure. Before my treatment I was an active mountain biker and in 2005 was able to ride again until my delayed side effects kicked in. Now I feel blessed to be able to walk my dog 3 times a day. Until my Brachial Plexopathy can along I could function on a limited basis. Now I am so weak I have difficulty carrying my own arms around. Because of numbness in my hands task that used to be easy is now close to impossible. Typing this comment requires careful pecking because I now fat finger all keyboard work.   

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Jul 2, 2008 09:04PM jwd wrote:

Erica35 and bill3144

I can sympothise with both of you in that I always seem to fall into that small percentage (most of the problems below) and have had base of tongue cancer. I am a 73 year old male in good health until treatment.  My radiation-induced plexopathy began a couple of years after completion of treatment in January '04 and was only a mild numbness and tingling in my thumbs and first two fingers.  It has slowly increased in severity and it is equal in both hands.  Buttons have become difficult and cleaning my hard contacts is a problem as I often drop them. The Internet indicates that this is common with radiation to the upper chest, but unfortunately, most articles are very technical.  My upper chest was red following treatment.

 I have dry mouth, consistant flem in my throat, Trismus (reduced mouth opening), almost no sense of taste and zero taste for sweet.  Nothing tastes good or even OK and I no longer eat sweets or popcorn as they do not taste good.  Everything has a neutral to bad taste and spices all seem to fall into the bad area.  Anything with grease causes my tongue to feel like it is coated with something slimy,  a very BAD feeling.  I eat only to survive and losing weight is a constant problem.  I also have the Dysautonomia mentioned by bill144.  I take Midodrine each morning (unless my BP is above 150) to raise the pressure and if it gets too high (above 170), I take Toporol to lower it.  Last month I had a high BP of 184/92 and a low of 58/35.  Sound familiar bill?

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Jul 3, 2008 09:53PM burlenek wrote:

I'm not sure if I have radiation-induced brachial plexopathy, but I have a definite clumsiness of the hand on the side that I had radiation to the breast, axilla and supraclavicular area 2-1/2 years ago.  Sometimes my left hand is uncoordinated, I drop things.  Sometimes my arm is a little numb.  My shoulder is always very stiff. Physical therapy didn't help much.

Does anyone have these symptoms?  My rad onc denies that it is from the radiation therapy, but I never had these symptoms before.

Dx 7/7/2005, IDC, <1cm, Stage IIA, Grade 3, 1/1 nodes, ER+/PR+, HER2-
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Jul 14, 2008 01:00PM Sharalyn wrote:

Sharjo...I am so glad to finally find someone who is dealing with this problem.  I had treatment with radiation/chemo for BC over 9 years ago.  Have been clean with the BC ever since.  7 months ago, I started with this problem of hand of numbness, weakness, pain, unable to use last two fingers...lots of tingling and horrible feeling.  They have run many tests which showed radiation plexopathy but no tumor (thank God).  I am in Lyerica which seems to help some but I gotta tell ya, I am miserable with this plus I have lymphedema of that arm as well.  I hope I hear from you and maybe other people "in the same boat" soon.

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Jul 14, 2008 01:28PM pinoideae wrote:

Erica, here is some research which is shown to improve this diagnosis.

1: Chin J Traumatol. 2002 Dec;5(6):329-32.Click here to read Links

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]

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Jul 15, 2008 08:53AM barbaraellen wrote:

hi, erica and everyone,

am i ever happy to have found you all.  i developed brachial plexopathy 25 years after radiation therapy from breast cancer.  i had no nodal involvement so i never had chemo.  that's how i know it comes from radiation, not drugs.

i have tried to submit this several times, so if this is redundant, please forgive my clumsiness with this new-fangled machine.  please let me hear from you and let me know how you cope with this.

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Jul 15, 2008 10:01AM barbaraellen wrote:

hi, erica and everyone,

my friend from the lymphedema network found this particular topic for me, and am i ever glad to find all of you.  i can barely manage email or i might have zeroed in here long before.  already we have raised that 'less than 2%' line we have all heard about developing brachial plexopathy after radiation.  i am convinced that these radiation oncologists send a newsletter around, warning them all to deny that these symptoms happened on their watch.  mine too. 

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 rad onc 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 2 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 2 little granddaughters, 1 and 2, and put pony tails in their hair and make cookies for them.  but like you, i can't even dress myself very well.  please let me know how you all are coping with this thing, and please know you are not alone.    

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Jul 15, 2008 10:53AM Sharalyn wrote:

Was I ever glad to see your post this morning.  I have been dealing with the lymphedema for quite sometime now but the brachial plexopathy just started in December of last year and has just about debilitated my right hand (am right handed) and the numbness and nerve paiin 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.  I am relieved to find others with this problem.  Someone told me about a doctor in NJ but when I called and left message got no call back. There has got to be some help out there but where?? I can't believe that with all of us out there that someone doesn't specialize in this or that there isn't more research going on....

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Jul 16, 2008 10:49AM Sharalyn wrote:

To Erica, BarbaraEllen and Sharjo, I am sorry to hear that you are dealing with this stuff too because we all know it is not fun.  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.  I hope to read more posts from you guys soon! 
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Jul 22, 2008 11:24PM barbaraellen wrote:

hi, everyone!

there is no way i forgot you guys; this miserable chunk of machinery conked out on me last week.  had to wait for the computer-gods to show up today.  let's hope this lasts for more than a day. 

sharz9, i am shocked.  of COURSE you are right-handed;  it is always the dominant hand that goes out, didn't they tell you that in "nightmare one"?  i am amazed that you can use upper case letters.  i cannot use my right hand for anything except a wave from the hip.

it is interesting that you had the lymphedema before the brachial plexopathy.  mine was just the opposite.  i really believe that each condition is responsible for the other.  i certainly share your frustration with the medical community.  i just came back from my neurologist, and the best he could tell me was that i was deteriorating LESS quickly, due to my therapy.  how's that for a black cloud?  he has no clue what i should do. 

he is a really good guy, with the soul of a researcher, but he doesn't know what to tell me except that i should continue therapy to try to keep whatever i have.  just from this site, i have a hard time believing that this is such a rare condition.  what about all the people who are even worse with computers than i am?  i bet there are a lot more out there, all alone.

i would love to find someone out there who can help too, but i don't know where to look.  i found the national brachial plexopathy network...nbpn...but i was the only one out of hundreds who had had radiation damage.  most of them were injured from accidents, motorcycle and auto, and were most interested in discussing surgeons and pain medications.  i do not have serious pain  (just    numbness and paralysis), so i did not have a lot in common with them.  then i found the wonderful lymphedema network, but none of them had brachial plexopathy.  so, we may really be  strange birds.  but it is a comfort to know that we are not alone.

oh, by the way,you can all call me just barbara....seems someone else grabbed that from me earlier, so now i had to resurrect my middle name just to find you all.  it was worth it.

take care, and share. 

  

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Jul 23, 2008 11:42AM Binney4 wrote:

Hello, Barbara!

Computers! Can't live without 'em, but sure can't live with 'em eitherTongue out. Hope yours continues to cooperate!

I'm wondering what therapy you're talking about that your doctor says is slowing the deterioration (geesh! thanks a lot, doc!) Do you mean your lymphedema therapy? And if so could you describe what the therapist is doing, exactly, that seems to be helping? Anything that helps would be wonderful to know about.

Hope today's bright and beautiful where you are!

Binney 

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Jul 23, 2008 12:57PM - edited Jul 23, 2008 01:07PM by barbaraellen

hi there, binney and sherri,

first, binney; no, it was not my le therapy my doc was referring to.  it was the therapy for the plexopathy.  i really think there has been only microscopic 'slowing down' myself; i think he is just trying to keep me from jumping off the deep end.  all i am getting is a brace to wear a few times a day and some hand exercises.  i have the le reasonably under control with a drainage session about once a week, and then wearing a sleeve and a glove during the day.  at night i have a heavy duty sleeve, called the opera sleeve, plus 2 gloves, one on top of the other.  it is a llittle clumsy, but it is better than bandages.  anything is.

sherri, i can sense your excitement over the trental and vitamin e therapy, and i don't want to dampen it, but i have to tell you that i tried that for maybe 6 months or so a few years ago, before i even had the le and the plexopathy was not nearly as bad as it is now.  it did absolutely nothing for me.  it was my radiation onc who recommended it, and even gave me the email of the guy who was doing it.  i sent him my story and asked for advice but i never received a word back.  too busy, i am sure.  all of us less-than-2-percenters were probably swamping him with questions.

i was told by my rad onc that this would probably have worked if i had started the regime as soon as the condition presented itself.  that would have been pretty impossible since it took them years to diagnose it!  you just can't win.

i will try to find out more about it again, but i would be surprised to learn something else.  i would travel to the moon if someone actually figured out how to turn scar tissue and/or fibrosis back to normal tissue again.

but, do let me know what else you hear.  maybe it was just me.  good to hear from you, and stay well, everybody,

barbara- 

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Jul 23, 2008 01:41PM Sharalyn wrote:

Barbara...I was so glad to read your post this morning. I have been looking every day since I posted and wasn't seeing anything new from anyone and so, hence, more discouragement.  I am sorry to hear that anyone else has this to deal with but am relieved that I am not completely alone.  I live in the Los angleses area where there are many accessable medical institutions but I am getting nowhere,  I have been taking Lyrica and that helps with the nerves jumping in my hand and some of the anxiety I was having when this started.  Sometimes I just try and forget about it but that doesn't lst for long because most of my right hand is numb now and tingles constantly.  My arm is so weak that I can barely use it anymore.  I, like you, would travel anywhere if I could find someone to help.  I type mostly with my left hand and can still use my thumb and forefinger on the right.  this is a monster to live with and has dramatically changed my quality of life.  I was treated for BC ten years ago and been dealing with lymphedema for seven.  I was never told or warned about thi stuff in any way.  Am lucky to be healthy every other way.  I turn 62 this year and am grateful that this didn't happen when I was younger,....then I would have really felt cheated!!!  I was doing research myself on the internet but it seems there is not many of us out there and research is scant if at all!  I don't want to sound down and apologize if I am sounding that way.  I really am an "up" fun person and don't want to sound so dreary.  Another thing is shopping has become a "nightmare" of it's own, always looking for long sleeves made of a thin material because where I live the summers are HOT! (So I save a little money cause most the time I don't find anything...tee hee) I do go for PT but now just once a month because insurance only allows 30 visits a year. She tries to break up scar tissue but I don't think it helps much.  I am grateful for connecting with you and love your sense of humor.  That's helped me a lot by keeping that and trying to still have fun in life! Thank God for this site!!!!!  I will be looking for your postings! Be well all!!! Shari

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Jul 23, 2008 04:01PM Binney4 wrote:

Sherri, thanks for your exciting information. I'm so glad you'll have a chance to try this drug regimen, and I hope it works wonders for you.Smile It is interesting about the lymphedema lessening or disappearing. Insofar as it was caused by blockage from fibrosis and not strictly by damage to the lymphatics, that would make sense. What good news that must be for those who have been suffering with it and find themselves relieved of it! Please keep us posted on your experience.

Barbara and Sharz, help me here. I'm trying to understand what, exactly, the brachial plexopathy is -- what the mechanism is. Are you all saying that fibrosis is the culprit, and that breaking down the fibrosis would relieve or at least slow the deterioration? Is Sherri's RIF the same thing as brachial plexopathy?

And if fibrosis is the problem, have any of you tried the Riancorp low-level laser? It's been recently approved for use in lymphedema treatment to break down fibrosis which is cause either by the initial surgery and/or rads, or by the stagnant lymph fluid itself. It's been quite successful in improving both the pain and the blockage of lymph flow, and so in reducing swelling as well. Barbara, you seem to have been "around the block" with just about everything that holds out any hope, so I'm guessing you've already tried it. No help?

Sharz, I'd say this is the perfect setting to sound as frustrated and unhappy as you need to, and no apologies called for.

Thinking of each of you, and sending very gentle (((hugs!))),

Binney 

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Jul 24, 2008 11:04AM Sharalyn wrote:

You won't believe this Binney, but the answer is yes, I have tried the laser therapy last fall, from October through the second week in Dec.  Right after that in Dec. is when my brachial plexopathy started showing symptoms.  It has progressed rapidly.  I was tested with Cat's MRI's and Pet and all showed brachial plexopathy. Needless to say, I was relieved it wasn't something worse but this is no bundle of joy either!  A bummer Cry as I thought my lymphedema was a curse enough.  It could be coincidence or the laser disturbed a bundle of nerves enough to kick start this disease of 2%.  Who knows? With my experience, I would advise no one to seek laser treatment for lymphedema.   

I don't think all people with fibrosis get BP....but I was diagnosed with RIF soon after my radiation, within a couple of years.  That was easy enough to live with because the lymphedema was a much worse problem for me.  But this new BP is mind boggling! 

I have heard recently that if we progressed more with stem cells that new nerves could be grown but as you probably know isn't being done in this country due to laws.  Now I am going to investigate that possibility in other countries....hopefully not another dead end!  Wish me luck!

 Sending (((H))) back!

Shari  

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Jul 24, 2008 12:56PM Binney4 wrote:

Shari, that's a real cautionary tale, and I really appreciate your sharing it. I'm planning (Lord willing!) on attending the National Lymphedema Network international conference next month -- researchers from all over the world. So not only will I pass your experience on to them, but I'll keep all my antenna out there looking for anything promising from the far corners. I can't tell you how distressing your situation is to me. You're so right -- lymphedema is curse enough, and the BP is beyond beyond.

Oof!

Binney 

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Jul 24, 2008 02:46PM barbaraellen wrote:

LADIES!  YOU ARE SO SHARP AND UP TO THE MINUTE WITH YOUR INFO!  I AM REALLY IMPRESSED.  I WAS ACTUALLY GOING TO TELL YOU ABOUT THE LOW LEVEL LASER STUFF.  THE NLN WAS KICKING IT AROUND FOR A WHILE, RECOMMENDING CAUTION AND RESEARCH.  I CANNOT BELIEVE THE TERRIBLE EXPERIENCE YOU HAD WITH IT, SHARI.  HOW COULD THAT POSSIBLY BE A COOINCIDENCE?  YOU GOTTA TELL THE LYMPHERS OUT THERE.

I ALSO THINK THE SOLUTION MAY LIE IN STEM CELL RESEARCH.  WHENEVER I WANT TO MAKE A DONATION FOR ANYONE, I MAKE IT TO ISRAEL AND SPECIFY THAT I WANT IT USED ONLY FOR THAT.  I ALWAYS GET A NOTE BACK TELLING ME THAT THE CELL GUYS GOT IT, AND THANKS. THANK GOODNESS SOMEBODY'S WORKING ON IT.

THE WAY I UNDERSTAND THE LE/BP CONNECTION IS THAT THE RAD CREATES THE FIBROSIS, THE HARD STUFF.  THAT, BY THE WAY, CAN BE SUCCESSFULLY MASSAGED OUT....SOMETIMES.  HOWEVER, RAD DAMAGE DOES NOT SIT IN ONE SPOT; IT MOVES.  IN SOME PEOPLE IT MOVES FASTER THAN IN OTHERS.  THE BP IS THAT MASS OF RED LINES IN THE SHOULDERS THAT YOU ALWAYS SEE ON THAT BIG CHART IN THE X-ROOM OF A DOC'S OFFICE?  SO IF THE RAD MIGRATES TO THAT AREA AND SWALLOWS UP A NERVE HERE AND THERE, PRETTY SOON YOUR HAND STARTS TO TINGLE.  AS IT CONTINUES, LIKE SLOW-MOVING LAVA AS I PICTURE IT, IT KEEPS DEVOURING NERVES.  SO ONE DAY YOU CAN'T HOLD A PENCIL, OR LIFT A POT, OR THREAD A NEEDLE.  YOUR BRAIN IS SENDING OUT COMMANDS, BUT THE MESSAGE IS BLOCKED BECAUSE THE NERVES CAN'T GET THROUGH.

THEN, AS THE HAND AND THE ARM DO LESS AND LESS, THE LYMPH SYSTEM BECOMES SLUGGISH IN THAT ARM.  THE LYMPH MUST HAVE MOVEMENT TO KEEP FLOWING, SO WHEN IT CAN'T KEEP SWIMMING ALONG HAPPILY, IT GETS BUNCHED UP IN YOUR ARM.  THAT'S WHAT THE LYMPH DRAINAGE MASSAGE DOES; LITERALLY PUSHES THE ACCUMULATED LYMPH ON ITS WAY............UNTIL THE NEXT CROWD SHOWS UP.

I ALWAYS UNDERSTOOD THAT WAS THE SEQUENCE, BUT HOW YOUR LE CAUSED THE BP IS A TOTAL STUNNER TO ME.  I AM STARTING TO BELIEVE THAT THE LASER DONE IT!! 

 SO, ABOUT THIS ARM.  IT USUALLY TINGLES OR FEELS UNCOMFORTABLY NUMB.  IT WANTS TO HANG DOWN ALL THE TIME, BUT THE LE THERAPIST SAYS NO.  TO RAISE TO TABLE HEIGHT I HAVE TO USE THE OTHER HAND.  I ONLY GET PAIN IF I TRY TO MAKE IT DO SOMETHING IT DOESN'T WANT TO DO, LIKE PUTTING A SWEATER ON OVERHEAD, OR TRYING WASH THE OTHER ARM.

I HAVE TO BUY LONG-SLEEVED TOPS TOO, BUT I CANNOT SHOP ALONE.  I HAVE TO DRAG MY HUSBAND WITH ME, SO I CANNOT DO IT AS OFTEN AS I WOULD LIKE.  I ALWAYS HATED SHOPPING ANYWAY, SO LIKE YOU, I AM NOT FINDING MUCH.  SO MANY THINGS WE CAN NO LONGER WEAR.  (YOU NOTICE I AM DELIBERATELY NOT MENTIONING ADVANCED AGE AS A CONTRIBUTING FACTOR?)

THIS SEEMS PRETTY LONG TO ME, SO I'LL LET YOU GO...FOR NOW.  HERE IN THE CHICAGO AREA IT IS GORGEOUS, AND I WISH YOU THE SAME OUT THERE IN LA.

 BARBARA-

\\\\\\\\\\\\

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Jul 24, 2008 04:50PM Binney4 wrote:

Praying along with you, Sherri!

Binney 

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Jul 25, 2008 01:12PM barbaraellen wrote:

hi sherri,

sorry if i was sending out the wrong vibes on the trental thing,  i took it because i thought it would "dissolve" the scar tissue,  i didn't have any pain, so i have no idea if it works for that,  if they are getting good results, then of course you must try it. 

barbara-

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Jul 25, 2008 02:27PM Binney4 wrote:

Hi, Shari,

As Barbara suggested, I'm busy getting the word out to lymphers (therapists, researchers, whoever I can buttonhole!) about your experience with the laser treatment. Do you happen to know if it was a Riancorp cool laser, as that's what's FDA approved, and if so, have you contacted them to let them know about this possible "adverse effect" (which is apparently the medical term for "disaster"Undecided)? I think it's an important message. I have gotten some interesting responses and will share them with you as soon as I can sort them out. This BP is new to me, and I'm trying hard to get my mind around it.

Barbara, am I correct in remembering from your ACOR posts that you have LE therapy once or twice a week, with a therapist who came highly recommended? May I ask why it's once or twice a week, and how you manage the swelling between therapy visits? The reason I'm asking is because I'm running into one consistent assertion from the people I'm talking to who have experience treating LE in combination with BP. They're unanimously hopeful that the swelling can, in fact be reduced and controlled, but the therapy has to be right for your situation. The goals would be to decrease limb weight, offset dependent (hanging down) positions with compression and support, and protect the arm from harm and skin erosion, and those goals are apparently possible with the right interventions. This would decrease the threat of infection as well, which in itself is worth whatever effort it takes to get there. OF COURSE you don't have to answer me if you don't want to. I'm aware I must be coming off as intrusive here, but I'm surprised at how commonplace BP is among some of these therapists, when it seems so "out there" from the patient perspective -- lonely and isolating.

Shari, I can't use my right (dominant) arm for much either, but just due to the LE. But typing is out, because it causes my hand and arm to swell. So awhile back I bought a left-hand-only keyboard called a FrogPad that is small and easy to use and has all the functions of a full keyboard. It did mean I had to relearn the keyboard (back to Typing 101, which I didn't even like the first time around!Tongue out), but within a few months my typing speed was back up to what it had been two-handed. Something to think about anyway. It's here, if you'd like to look it over: www.frogpad.com

Hugs all around!

Binney 

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Jul 25, 2008 04:44PM barbaraellen wrote:

hi again, binney,

so glad you are getting the word out.  if i tried to do it, i am sure my computer would blow up as a show of sheer contempt for my puny effort.  what does ACOR stand for? 

until i found this forum, i knew only one other woman who had both conditions.  she had all her radiation and surgery done one year after i did, and almost immediately developed le and bp.  she now sees her le therapist maybe once a MONTH!  she says she really doesn't need her even that often, but feels she should check in. she also has her arm in a sling most of the time.  it sounds like a good idea, but i couldn't do that anyway. 

i am able to maintain the swelling pretty well with the ordinary compression sleeve, not custom.  i don't do much except a little light stroking with some eucerin after a bath.  when i first developed this, after that infamous plane trip, i was running 2 and sometimes 3 times a week.  but in a few months, it seemed to settle into a size that looks almost normal.  if i didn't wear my sleeve and glove every day, though, it would blow up again.  i never went over "mild to moderate."  it seems that once a week with my therapist is enough, and OF COURSE you may ask me anything about these situations we all have in common; there is nothing intrusive about trying to understand as much as we can from each other.

i told you about this other lady because i never heard of anyone else. you know people who have both conditions? they are all therapists? or the patients of therapists? how did you find them?  surely not from the le network?  

i cannot tell how restricting the le would be for me because i had the bp first.  i blame all my hand and arm weakness on the bp, as well as the abnormal way the arm hangs.  the le does not cause me any pain...yet.  i just hate having to wear long sleeves all the time, and that hot glove.

i get around a lot.  i go to airports, malls, theaters, everywhere where there are large groups of people.  i have never yet seen anyone with a hanging arm or a lymph glove or bandages.  i think there are more of us out there than we see.  i think they just don't go out.  

someone else told me about that left-handed keyboard you use.  i am thinking about it.  i am getting pretty fast with my pecking here, but i make many mistakes, and i hate not being able to use upper case letters.  the english major in me disapproves strongly.  i just don't know if i want to frustrate myself on purpose.

oh, i love your interpretation of  'adverse effect.'  it's right up there with 'discomfort.'

nice weekend, everybody,

barbara- 

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Jul 25, 2008 06:00PM Binney4 wrote:

Hi, Barbara,

ACOR stands for Association of Cancer Online Resources, and I believe that's where we first "met," on their LE board (where I use a different screen name -- I sent you an email telling you about this site).  So I think it was probably me that told you about the keyboard on that site too, since I'd just gotten used to it and was gushing about it! Embarassed Goodness! An English major, huh? In that case, typing all lower case must be cruel and unusual punishment for sure!Laughing

It's the patients of therapists that have BP, but what gets me is that the therapists find it fairly common. So where are all these people? Like you, I never do see them running around, even when I go to the sorts of events where bc verterans hang out. I have to agree, they must be staying home, which is a possibility that really tears me up.

I'm assuming you and Shari are shopping for long sleeves to "hide" the compression sleeves, yes? Do you know you can get them in a wide variety of colors from Juzo or Bio-Concepts, and in patterns from Lymphedivas? With my choice of colors I feel better about appearing in public, and have even had people ask me which boutique I buy my gloves from! (Duh!) Sort of like the people who asked, when my hair came in curly after chemo, where I got my hair done. I just told them forget it, they couldn't afford it!Laughing

Yes, do have a delightful weekend,

Binney 

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Jul 25, 2008 08:33PM Sharalyn wrote:

Binney and Barbara...so much good information and a pleasant surprise to find your postings when I checked in today.  Well, I spent a lot of time on the internet looking for the stem cell miracle to no avail....but I found a specialist whose group of M'D.'s deal with BP.  It just so happens they are located in Cinn. Ohio where I was planning a trip in October so I called and spoke at great length to this doctor's assistant.  They mostly treat BP on babies but have been seeing adult BP patients too. (Guess there are more of us popping up lately)  I made an appt. for 10/17.  The webside is (I am going to resubmit this because it won't let me post with this website cc)  Needless to say, I was excited to find these guys...the asst. told me that there are only a handful (no pun) of doctors in the US specializing in BP.  At least it's a step in the hopefully right direction. 

BTW....in what state does everyone live??? California by any chance???  Anyway...I can't tell you how impressed I am with you Barbara and your clinical knowledge re BP.  And...Binney, I am also impressed with your great sense of humor which we sooooo need dealing with this unrelenting crapola!  I've picked up more tips from U2 than I have in the past 10 years!  It doesn't cease to amaze me how all the PT's seem to know about BP but it's just the same ole treatment offered and no one knows what the latest research is.  I have found with the lymphedema that a nightly message helps more than anything along with wearing the juzo sleeve (not the custom one...that was horrible) in the daytime.  When I travel I take the jozie pak (i know I spelled wrong) and at least these measures keep it soft.  Whenever someone asks "what happened to your arm"...I just say "It's a long story". 

Thanx for the info on the Frogpad.  I give you a lot of credit for learning a whole new way to type.  You are right tho about causing more swelling so I don't type much like I used to.  I am going to look up the lymphedivas site now.  Before the BP i just kind of stayed in denial about my lymphedma meaning always wearing long sleeves and hiding it whenever I could.  Now I realize that I have spent way too much time being vane! And...what you said Binney about running into other people..get this...I've have LE for seven years and I NEVER run into anyone else.  Maybe they are all on another planet...get me a ticket please! Do you ladies have pain with the BP?  With LE, always the heaviness and the strangling sleeve but no real pain.  Now sometimes I feel like large needles are sticking me in my last two fingertips along with the numbness, tingling and weakness.   Are you on any meds that help?? Well I guess I've written enuf for now but am sooo very glad to have found this site and met you via internet.

Hope you have a nice weekend!!

Shari

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Jul 25, 2008 08:34PM Sharalyn wrote:

Sorry...won't let me post the link.

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Jul 30, 2008 11:44PM barbaraellen wrote:

hi, everyone,

binney, you DID send me to this great forum; you are the knitting lady, aren't you?  wow!  how nice to find you here!  (how can you remember different user names?  if i didn't use my own, i wiuld never remember it)

so this is the second time you mentioned those colorful sleeves from 'lymphedivas,' right?  so i actually found the site, but i must tell you, i don't understand why anyone would want to make her arm more noticeable than it is?  am i missing something here? i think i stand with shari, who is looking for long sleeves in a light fabric.  i have enough trouble with people who say, hey, what happened to your arm? and i always wave the other hand and say, don't ask.  and you know what?  they don't.  with a brightly colored sleeve, in a sleeveless gown, no less, i can't even imagine the comments that would have to be fielded.  am i alone here, or does everyone think these bright sleeves....hot pink, royal blue and leopard print, yet, would make you feel better out in public? 

anyway, binney, i am still very grateful to you and happy to have found you again,  keep talking.

barbara-

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Jul 31, 2008 05:00PM - edited Jul 31, 2008 05:01PM by Binney4

Hi, Shari and Barbara,

Shari, are you talking about the BP team at Cincinnati Children's Hospital? I found this quote about the treatment options there (of course they're for infants, but still perhaps there are seeds of hope in there somewhere): 

"Brachial Plexus Treatment Techniques
We use a combination of techniques to treat brachial plexus injuries, including family input to determine the best treatment approach for each child. Microsurgical nerve repair may be undertaken as early as 3-6 months of age with the use of EMG and MRI imaging to gather specific evidence of the brachial plexus injury. Our surgeons also perform tendon transfers, orthopaedic procedures and other secondary surgeries. Therapy may include home exercise programming, therapeutic electrical stimulation, orthotic fabrication, aquatic therapy and family education as the most important aspect of treatment."

 And this web site that has links to a lot of material:

http://www.cincinnatichildrens.org/svc/alpha/b/brachial-plexus/resources/default.htm

One of the links on the above page led to this page, which has some presentations from a (pediatric) BP conference:

http://seraph.cchmc.org/MediasiteEX/Catalog/?cid=20280029-9c4a-42e4-a755-ca55d99f3609

I haven't had a chance to look it all over yet, but thought I'd post it in case you wanted to read it too. Hope the links work!

Barbara, I think the LympheDivas attitude is an "in your face!" thing, and I personally feel like cheering when I see it. Why should I have to hide out? And how CAN I anyway -- even with long sleeves my gloves are right out there for everyone to see. And who wears gloves in the AZ desert when it's 115 degrees out there? It ain't natural! So it does cause a lot of stares and even a lot of (sometimes really stupid) questions.

I've tried joshing. Once when I had one arm wrapped and the other one in garments, with my heavy-duty chest compression vest making me look like a sumo wrestler, a crusty old man came up to me at the mall and said, "What the heck happened to you?" To which I smugly replied, "You should see the other guy!" and raised my gloved fist for emphasis.

Clever, huh? Uh-uh.

He says, "I don't see how anybody could look any worse off than you do!"  Tongue out

So after that I tried a few other quickies. LympheDivas had a list of good "explanations", my favorite being: "Trapeze accident!"

But in the end I'm just better off telling curious people a few things about it. Their eyes glaze over, they shift their feet in miserable boredom while I explain in grim detail the operation of the lymphatic system and the little-known hazards of bc surgery. They're undoubtedly sorry they asked, but at least I don't think they'll ever forget it. Kiss

For me, the hardest to deal with are our bc Sisters, our "fellow-survivors" as everybody calls them. For the most part they DO know what my garments mean, and they don't want to talk about it. At a gathering of bc veterans (I hate the term "survivor"), where all the women are strangers but they're greeting each other like long-lost cousins because of their shared bc experience, they'll take one look at me and say, "Oh, lymphedema, huh! Man! I'm sure glad I missed that one!" Not exactly a conversation starter for me!Frown

I'm really not complaining here. I even understand them. And in my better moments I actually appreciate the humor in the situations. But I just wanted to bring these things up because I think they affect us a lot and sometimes I forget how much of a strain they are on me and then wonder why I have a melt-down.

All that just to say, I finally gave up any attempt at camouflage because it's useless, and I'm happier not feeling like I have to stay out of sight. And I think that's the mind-set the LympheDivas are appealing to, too. So I wear colored sleeves from Bio-Concepts, because then at least the sleeves match the gloves and I don't look like I was patched together. Not sure anything would actually make me feel better out in public except being able to forget about it entirely. But for me, hoping not to be noticed doesn't achieve that oblivian. Better to look confidant, even if I don't always feel that way.

Does that make any kind of sense? Undecided

Hope it's not 115 degrees where you live!

Binney

P.S. - Sorry this got so LONG! Surprised

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Aug 1, 2008 12:20PM barbaraellen wrote:

well, binney, you have certainly given me a lot to chew on, and i've been chewing for hours.  i hear you.  you are right about attitude.  what is the point in trying to hide what cannot be hidden?   i do admire your more healthful philosophy.  i hear it and i admire you for it.  all i have to do now is feel it. 

i know you are dealing with much more serious le than i am.  i think, as i approach my first anniversary with it, that i have not really accepted it fully.  i cut the sleeves off a couple of old nightgowns, but have not yet touched the newer, prettier ones.  somewhere in my brain, not the part that reasons, i see, i must still believe that this is all going to be cured....someday.  you are way ahead of me, in many ways, that are very important for living with acceptance and confidence in oneself.

i must admit that i am still trying to hide what cannot be hidden.  yesterday i went to the zoo with my daughter and 2 of my little grandchildren, and i was constantly aware of my awkward arm and hand, even with the long sleeve blouse i was wearing.  i keep trying to imagine if i could have managed that with a colorful sleeve and a short sleeve blouse.  it would have still been hot, and i think i could have become one of the main attractions there..........those little kids don't miss a trick.  what would you have done there?  (however, after that nervey old man at the mall, you might not be uncomfortable in any situation.)

i am still mulling here, but i have to go now, again in public with my long sleeves.  i wanted to let you know that your words have made a great impression on me, and i'll be back with more thoughts tomorrow.  thank you for caring that much.

barbara- 

   

  

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