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radiation-induced brachial plexopathy

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  • caearl
    caearl Member Posts: 42

    Kay-kay,  Although Mom has only lost total use of her arm this past Feb. it seems like a long time.  The Sling is only used when she has to do a lot of standing.  When she is at work she will sit in a chair that has an arm rest for support.  We joke that she is always reclining at her desk with her feet up to avoid helping the customers! Laughing  Seriously, she does look for places to prop her arm to reduce the dislocation.  Having the lymphedema under control also helps, as the arm is not as heavy.  Sometimes she will just hold her arm up with her right hand in a sling position...that sling can get hot and pulls on her shoulder. 

    About her nails, we had just talked about posting to if anyone else was having problems with their nails.  Her pinky and ring finger nails appear to be pulling away from the bed.  Is anyone else having that problem?  The nails are growing fast, but the end two seem to be catching and breaking.  I have been using a crystal nail file on them to try to keep them short.

    Just an update for you all,  Mom went to see about the hyperbaric chamber.  The Dr said that it may or may not help, possibly with the lymphedema, but not the BP It would require 2 hours a day five days a week with the time undetermined.  Once treatment was stopped, any benefit would reduce back to where she is now.  The worst part was the cost.  Over $2000 per session, and not sure if insurance would cover it. She made the decision that it really wasn't worth the time or money commitment to use this treatment with no real positive results.  Apparently the HB Chamber is used to heal wounds, faster, but not necessarily better.  This of course raises many questions.  Is the HB Chamber used for those going through radiation treatment to heal the wounds?  If not, why not?  If so, what are the stats for the development of RIBP?  Would use of the HB Chamber at the time of radiation burning have prevented the onset of BP? What is the common thread between all of you here?  What is the reason you each developed RIBP?  Genetic?  Chemo? Age? Blood Chemistry? Meds? 

    Barbara, We talked to our LE Therapist, about the causes of RIBP and she explained that it is a combination of the demyelinization(sp?) of the nerve, and the scar tissue around the nerve.  The myelin(sp?) sheath is a fatty substance and the radiation actually "cooks it"  Why it takes so long for the effects to show up is a good question. Massage may certainly help with some of the shoulder pains you may experience, I know that I usually have to work on Mom at least once a day to reduce the knots in her shoulder. Oh, the education we are all getting on this topic...any of you thought about starting our own Medical College?

    Hope this post finds you all at a "good "time.

    Thank you for letting me put my 2 cents in for Mom. 

    Terri

  • Watts
    Watts Member Posts: 21

    Hello ladies!

    Update: In my last post I stated that I had scheduled an appointment with a neurologist. Well, I went. He read my CT scan, MRI, and EMG reports. He checked my arm, checked areas on my neck, shoulder and back and asked questions about my pain. He ordered another MRI to compare and detect any changes and prescrbed "prenisone". He also stated that I need more physical therapy for range and movement. I have a return visit in a few weeks. I will also begin more physical therapy sessions soon. I will keep you informed. 

    Terri, thanks for sharing and giving us so much insight as to what your mother has gone through with LE and RIBP. It all helps me to understand more of what I am experiencing.  I wear a sling daily to help hold my arm in place and take some of the pressure from my shoulder, but because my arm is so heavy, my neck, shoulder and back hurt. I am always looking for places to rest my arm as well. Your mom is blessed to have you. Massages regularly, seem to relieve the tightness and strain in the shoulder. My nails have grown long  and strong on my affected arm. I was told that the lymph fluid is rich in protein which is why the nails grow so rapidly.I have not experienced the nail pulling away from the bed. I like sitting with my feet up. I find that reclining in a chair with a cushioned back and arm-rest seems to ease some stress and pressure.

    Binney and Barbaraellen, Thanks for the information on the American Lymphedema Framework Project.  I will email my experience with LE and RIBP.

    Thank you all. I am learning so much and you are helping me to deal with this condition. Have a good week.

    Watts. 

  • lionessdoe
    lionessdoe Member Posts: 45

    Haven't been here in quite a while. Sooooooooo much going on. Will try to catch you all up ASAP. But I am experiencing a gradual weakening of hand and arm. Pain in jaw, neck, shoulder persists. There is nothing that qualms it but time; waiting for a good day. Fewer and fewer. But for those of you who are struggling with the keyboard (as I am beginning to), I wanted to let you know about a software program we recomend to people with hand mobility limitations as an advocate for people with disabilities. It's called 'Dragon Naturally Speaking'. Vista version is now out, but you can still get the XP version. Our consumers really rely on it.

    It's even being used by some businesses just because it is so quick and efficient.

    Hope this helps somebody!

    http://en.wikipedia.org/wiki/NaturallySpeaking

  • Kay-kay
    Kay-kay Member Posts: 9

    Caearl (Terri), Thanks for replying.  If you find out anything about the nails let me know. My nails are pulling away as well. Currently, I'm using Dr G's Clear Nails (over-the-counter at Sally's Beauty Supply). 

    Question: Does your mom suffer from Honer's syndrome? 

    Please advise.

  • barbaraellen
    barbaraellen Member Posts: 87

    LADIES, DON'T UNITE YET!!!!

    I have to apologize, because the LE Framework Project that is scheduled to meet in Orlando late in August...............is NEXT August!  I have no idea how I could have made such a dopey mistake because the group meets once a year, and it already met in March!  I feel like the dingbat Archie Bunker made famous.  But if you sent emails, at least you don't feel as bad as I do, because I got my doctor on the phone, and I'm rattling all this stuff off to him, how we need to have RIBP in the schools, in the side effects, in the project............and he tells me, yes, but it's next year.

    Talk about being embarrassed!  But, he did get into a discussion with me and agreed about many things, like the connection between LE and RIBP, and that doctors have to be aware of it as soon as a patient starts complaining about tingling and numbness.  I did ask about anything that might dissolve scar tissue, but he couldn't help me there unless we were talking about surgery, which he strongly advised against, of course.  Considering what a blunder I made, he was quite gracious since he was leaving for a vacation the next day.

    Sorry I have nothing better to report, and I have to run.  My sil and I share a birthday, and our weekend is about to begin, including the famous air and water show which I have never seen!

    Be good girls, now,

    Barbara-  

  • binney4
    binney4 Member Posts: 1,466

    Barbaraellen, you had it right the first time: there's an executive meeting this month. Next year in Orlando is the big National Lymphedema Network conference (professionals only, unfortunatelyUndecided). Perhaps the Stakeholders Meetings (the one you went to in March where patients and all interested parties meet and brainstorm) are only scheduled to meet once a year, but the executive committee of the Lymphedema Project is meeting before the end of this month.

    And they DO need to hear from us, so please do email and jog their memories! Barbaraellen, it's so great that you talked to him and jogged his, because it does sound like it needed jogging. SO PLEASE DON'T GIVE UP ON THE UNITING JUST YET!!Laughing

    Air and water show, huh? Air shows are hard on the neck from all that looking up. Enjoy anyway! You guys sure know how to celebrate.

    Hugs,
    Binney

  • Watts
    Watts Member Posts: 21

    Hi Ladies,

    Just wanted to check in and say "HI". I hope this week finds all of you as well as can be expected. I am still going back and forth with my doctors...other medical issues are coming up as well. THE FIGHT GOES ON! I'll give more detail in another post....

    Barbaraellen...did you enjoy the Air and Water Show? I live in Chicago's Hyde Park-Kenwood area. I've never attended the event, but living near the lake, I get to hear and see some of the planes usually before the event while they practice. BELATED HAPPY BIRTHDAY!  

    Take care,

    Watts 

  • barbaraellen
    barbaraellen Member Posts: 87

    Hey, Watts,

    You live practically around the corner from my massage therapist!  Do you also live a stone's throw from Obama?  So we were both watching the same air show; very cool, as my kids would say.  Many thanks for the happy birthday wishes.  I had a lovely day, with 2/3rds of my little group present.  It is really hard to rope in those Californians.

    Are you sure the doctor gave you "prenisone?"  Not prednisone?  What for, pain?  What kind of physical therapy?  I mean, what is it he wants you to do with your right arm?  I would love to know what they think would help.  All this new stuff out now, about lifting weights even if you have LE, doesn't apply to someone who can't wrap her fingers around a stick of butter.

    May I ask if your neurologist is from the U of C hospitals, or from downtown Chicago?  You don't have to tell me, of course; I am just curious and always interested in new names.

    Stay in  that lounge chair with the armrest and your feet up.  That sounds so good I am going to try it myself now.

    Hang in there,

    Barbara 

    'y 

  • Watts
    Watts Member Posts: 21

    Barbara,

    I am in walking distance from the Obama house...also from the University of Chgo. Wow!

    I am glad you had a good time this past weekend. It is always so wonderful to spend time with family and friends, especially in celebration. 

    Forgive my spelling.."prednisone". He said to help with the inflamation of the nerves in my spine. This was in place of giving me steroid shots in my spine (C-5/C-6).  I am now having difficulty with shortness of breathe, fluid on the lungs,etc...so I was unable to complete the last scheduled MRI for comparison with the one taken six months ago. This one was to include the brachial plexus. My doctors (oncologist and primary care ) want to deal with heart/lung issues now. They are scheduling a special CT scans for the rt lung.

    As far as my arm, I go in for an evaluation Wednesday (8-18-09) for my shoulder (range of motion) at the Rehab Center where I received my LE therapy. My LE therapist is supposed to work with the PT/OT. I will keep you informed as to what they decide. The doctors don't seem to have a clue as to what needs to be done for my rt arm/hand. Hopefully the therapist are better trained. Smile

    More to come..I'll keep you posted.  Take care and have an enjoyable week.

    Best Wishes to ALL of YOU!

    Watts 

  • caearl
    caearl Member Posts: 42

    Kay Kay,

    Sorry for the delay in getting back to you.  My son just went back to school yesterday, so we have been busy with all of the end of the summer "stuff".  Mom's LE therapist suggested she rub vicks into the base of her nails, but to see a dermetologist just to be sure, for a proper diagnosis.

    She does also have Horner's syndrome  This has been caused by the sympathetic nerve bundle in the top lobe of her lung which has radiation scar tissue.  Only half of her face sweats, her pupil is constricted, and her eyelid droops.  Some of the drooping, the neuro opthamologist believes, is familial.  My Grandmother had drooping eye lids.

    Some good news, Mom's LE therapist is working on designing a support for the sublexation, which should take some of the stress off of the shoulder.  We have been brainstorming with her, and are always looking for alternative solutions for this condition.  We will let you know if it works.  The LE is also working on Mom's rotator cuff and the scar tissue around the BP to try to ease them both.  We have been blessed with a gem of a therapist.  She is LANA certified and Vodder trained.  The added benefit is her pre-LE training.  If any of you are near the upstate of SC we would be happy to share her.

    Mom and I also cannot say enough good about the Farrow wrap lite.  She wears alot of the time, including at night.  So much easier to get into and we believe it has been a big help keeping the swelling  down.

    Hoping this finds you all at a "good time"

    Terri and Connie

      

  • Kay-kay
    Kay-kay Member Posts: 9

    Terri and Connie,

    Thanks so much. I am very thrilled to learn about the Farrow wrap lite, Vicks and the designing of a support garment.

    I am concerned, as my right hand is swelling.  Frown

    God help me--Please!! 

       

  • caearl
    caearl Member Posts: 42

    Kay-kay

    Do you have a good LE Therapist?  Mom's taught me how to massage and wrap which is a help.  In addition to the Farrow Wrap Lite there is a glove, but it is too tight in the wrist, so I wrap Mom's hand and wrist with the LE bandages.  This has helped with the hand, which just over a month ago looked like a Minnie Mouse Glove!!  LOL now it is wrinkly like a deflated balloon.  And Mom loves those wrinkles. Laughing  BTW were you aware that decongestion of the hand also includes your palm.?  Is there anyone close to you who can learn and help?  Do you want us to adopt you? Laughing I know how difficult it is for all of you to try to tend to your arms yourselves...I know that things are easier for Mom because I can be there.

    Praying that you each have someone to help

    Terri and Connie

  • Watts
    Watts Member Posts: 21

    HELLO LADIES,

    A few weeks ago I could slightly grip things in my RIBP/lymphedema right hand, move my fingers and flex my wrist. Now my wrist action is gone, my ring finger and pinky finger feel like rubber and barely move. Is this the norm for our condition? Has anyone else experienced this? What else might I expect to happen? I can still shrug my shoulder and swing my arm back and forth.

    I will have to get used to all these changes! Thanks for all your help in dealing with this.

    Take care....

    Always,

    Watts 

  • caearl
    caearl Member Posts: 42

    Hello Watts,  As far as my mother's progression, she lost the use of her wrist and elbow then her fingers.  Her journey from the start of burning and weakness, to total paralysis of her arm took three years.  What information I have found and read says that each of you may or may not progress to total paralysis.

    She does have feeling in the upper part of her arm, close to the shoulder, and down to a couple of inches above her elbow.  Up until Feb of this year she also had bicep use, now she cannot swing her arm or move it laterally.  We noticed that she seemed to loose more function after she was ill.  She had bronchitis, and lost some of her finger use, She had a case of celulitis and lost more function.  That may have be a coincidence but who knows. So many questions..so few who have the answers...

    Mom has said that she has accepted the paralysis, it is the pain that she finds difficult to deal with.

    Hoping this finds you at a good time.

    Terri and Connie

  • barbaraellen
    barbaraellen Member Posts: 87

    Hi Watts and Terri,

    I am right up your alleys with your latest RIBP developements.  I went from being able to grip lightly and flex my wrist to exactly where you are and then some.  The ring and pinky fingers are the first to go.  The other fingers follow, one at a time, the thumb being last and is the most inconvenient.  Opposable thumbs, that's what allows us to do a thousand things without even thinking about it.  Unfortunately, that is the norm, as far as I can tell you.

    I cannot bend my wrist or my elbow anymore, but I can shrug and swing a little.  I do have feeling in the upper arm and shoulder, Terri,and a few inches above the elbow, like your mom.  I don't know if any of us will progress to total paralysis.  Her illnesses may well have contributed to her RIBP, but who knows?  I am sorry she so much pain to deal with.  Outside of what I know myself, there is nothing I am sure about except that it would be nice if the whole thing just faded away some sunny day.

    It doesn't hurt to massage the fingers, and I found it very easy to do by intertwining the fingers of your good   hand with the fingers of the other hand, and running them up and down the sides of

    the affected fingers.  At the very least, it keeps them from swelling up and they look almost normal that way.  I would exercise that thumb  and    keep it as loose as you can for as long as you can.  Maybe it will keep its function.

    That's all I know today girls; keep the faith.

    Barbara-

  • Watts
    Watts Member Posts: 21

    Terri and Barbara,

    Thanks for the info on the progression of loss of use to the arm and hand. Its a little comforting to know that what is happening is not out of the norm. (I'm not alone). I get the short shooting pain, both up and down the arm and in the hand and fingers. I only take pain meds when it gets unbearable. Do you wear a sling for support? When my arm dangles, it swells, but the sling and weight of my arm result in back discomfort. I find myself wanting to sit a lot with my arm in my lap. Barbara, what do you do? Do you have lymphedema too? Terri, what does your mom do?

    PT UPDATE: I have had two PT sessions so far. My therapist has been manuvering my arm with mild/gentle stretches to loosen up tight muscles. Moving the arm upward and out. Also moving it in small circular rotations. She stops at any point of discomfort and continues to ask if I am okay with what she does. She also massages the upper inner arm, with beeswax, where I have accumulated lymph fluid. It has been painless thus far!

    Oh by the way, my PT is my LE therapist, so she knows my arm! Smile

    Until next time...everyone take care,

    Watts 

  • barbaraellen
    barbaraellen Member Posts: 87

    'Morning, Ladies,

    Yes, I have LE too, but it really seems to be under control.  I would call it mild now, not even moderate.  There is no visible difference in size between the 2 arms.  My therapist says that it is as much under control as it can be, but my weekly massage keeps it at bay, I am sure.  Watts, it sounds like your therapist knows what she is doing, and it is great that she can handle the RIBP, as much as it can be handled.  Does she also massage the upper back and shoulder area while you lie on your good side?  I can't tell, but my therapist says that fluid likes to accumulate there, and some times there is less fluid than other times.  It certainly feels great and always leaves me very relaxed.  That beeswax sounds very interesting; does it work?

    I am so sorry that you and Connie have so much pain.  I have been lucky there, so far.  Once in a while I do get the kind of sharp pain you describe, but it has never lasted more than a few seconds.  I do prefer to sit with my arm in my lap too; it takes the pressure off the arm and shoulder.  (Do you ever wonder what that heavy thing is in your lap, and you look down and see that it's your own arm!?)

     I do not wear a sling, but I think I will ask my therapist if he thinks it would help enough to use it.  I would also worry about back pain; I manage to get enough of that on my own.  About the finger massage I mentioned yeserday, I forgot to add that sometimes it is much easier to lay the bad hand on your knee and then lay the good hand over it, and slowly get the good fingers in between the bad ones and pull up, very gently.  Do NOT pull down!  Just detatch the good fingers and start again.  It becomes almost automatic if you are sitting and watching TV.  There should be a noticeable difference in the size of the fingers, but maybe you should stroke up to the hand as well if you think it is swelling.  Sort of the really short version of your lymph drainage massage.

    Hope this all helps, and thanks so much for your input.  No, we are certainly not all alone anymore.

    Barbara- 

  • ronimom
    ronimom Member Posts: 34

    Hi Everyone,

    Does anyone else have this issue?  My LE and RIBP hand turns outward, so my arm in a relaxed state, and walking forward, is palm up.  If I want it palm down, I have to hold it down with my good hand.

    BTW, I cannot swim anymore, not even tread water for a minute.  My wrist is unstable and I have no strength to stroke with my hand and wrist. And my shoulder flexibility is going...Maybe that's equally the problem.  I do get in the pool and move around in the shallow end.  The real kicker is that I cannot be alone at the pool supervising my grandkids.

    My energy healer is moving energy around and my hand, wrist and sometimes arm, flap around in response to her touch on my other side.  She moves energy through meditation and breath.  This woman is truly gifted. We don't know where this is going, and it is very interesting.  Can anyone relate?  

    Here's something to laugh at.  I have to put a transdermal thyroid cream in my cat's ear without being able to hold her with my other hand. Picture this: When I first had to do this to her, I would chase her around pointing at her with my index finger.  The first time I had to corner her in the bathroom.  I now speak softly to her and give it to her when she is asleep, if I am quick enough.  It's a good thing I can laugh about this. And she still loves me. 

    Keep on keeping on,

    Ralpha

    Ralpha

  • caearl
    caearl Member Posts: 42

    Ronimomor should we call you the cat whisperer...LOL,

      I am so sorry to hear that you cannot swim anymore.  I know for Mom that was hard to deal with.  For a time she wore a carpel tunnel brace on her wrist to help.  She did not swim laps but  we did a deep water aerobic exercise.  As she began loosing strength and function she would paddle about with the flotation devise on.  Then her RIBP arm began to float, so she put a 1lb weight on her wrist over the brace.  That worked until her the sublexation of her shoulder.  Now she stays in the shallow end, and avoids public pools.  She has to be careful of injury to her shoulder and infection.

    Mom has just left for a short vacation with my Dad. Laughing They needed it!!

    Thinking about her arm in the neural position, her hand faces her torso. Early on before she lost the bicep use, she held her arm in such a way that it reminded me of someone who had had a stroke. Now the arm just hangs and flops about like a rubber chicken.   I know that her therapist is working on keeping her shoulder muscles stretched.  On her own she can do shoulder rolls and shrugs.  The therapist will get her shoulder into the socket and do some pectoral and latissimus dorsii stretching.

    Thank goodness for our ability to laugh....I now that there are days when Mom is down...but she somehow manages to keep a smile on her face and kind words for others.  She is such an inspiration to all.

    Hoping this note finds you at a good time!

    Terri

  • Anita-2
    Anita-2 Member Posts: 5

    Hi everyone!

     Thank you for all the valuable information.  It is nice to fell that someone understands the problem and the feelings that are attached to this condition.

     I am a wood carver and I noticed that I could no longer trust my left hand to hold the carvings from moving so I seeked medical help.

    I had cancer 10 years ago in the left breast and had lumpectomy followed by radiation. I was part of a clinical trial for the chemo 'Taxetere'.  Lymphedema of the arm started 3 years ago and is under control for now. The finger tips of the affected hand are now numb and the thumb is not co-operating when I need strength. 

    After seeing - my GP twice, -a technician with electronic probes, -the rehab doctor twice,  and -had two MRI within a week I got diagnosed last week by the rehab doctor RIBM and in the same breath she told me that it was only the second case that she had seen and therefore at this time had no information for me except that it is progressive, irreversible and that there is help available to cope with the day to day life..  I asked her about acupuncture and she agreed that it could possibly help.

    I know one of you ladies said that it took 3 years until the arm becomes useless. I would like to know if this is pretty much the norm?    

    For the acupuncture I know that we are not to have any needles in the affected arm but has anyone tried acupuncture at the upper part of the body where the damage was done?

    My arm gets super cold and painful at times has anyone heard or have an opinion on using a tens machine to generate heat in the muscle of the upper arm? and does it help? 

    Is there anyone from the Ottawa Region?

    Anita-2 

  • Alicenh
    Alicenh Member Posts: 9

    Hello Anita,

    I am not from Canada but did some research and found some Canadian resources that I hope can be helpful:

    http://www.lymphedemapeople.com/thesite/lymphedema_treatment_programs_canada.htm

     

    http://www.bcaott.ca/bca-lymphedema/lymphedema.cfm

     

    http://www.lymphovenous-canada.ca/treatont.htm

     

    The following is from a newsletter directed to physicians

     

    Physicians’ Update-Spring/ Summer 2009

     

     

    Spring/ Summer 2009, Issue No. 84

     

     

    Primary care for Lymphedema risk reduction and management

    Lymphedema is a common side effect of cancer treatments following lymph node dissection. It is a chronic condition that can significantly impact quality of life. Due to the nature of the disease and its treatment, breast cancer survivors are at risk of lymphedema. The incidence of breast cancer-related lymphedema is between 33 and 48 per cent following axillary node dissection and radiation therapy (RT), and 5 to 14 per cent after sentinel node biopsy and RT.

    Research has indicated that lower incidences occur in patients who:

    • Receive education on lymphedema risk reduction strategies
    • Seek the assessment of a physiotherapist
    • Exercise regularly

    How can you help?

    Please inform your patients about the risk of lymphedema secondary to cancer, and raise their awareness of its early symptoms. Lymphedema can occur years after breast cancer treatment has ended. It causes functional limitations, disfigurement, psychological distress and an elevated risk of recurrent infections. Early detection and treatment of lymphedema prevent its progression to an advanced stage. Please monitor for early symptoms of lymphedema in cancer patients and refer to a certified lymphedema physiotherapist for assessment and treatment. For information on local lymphedema physiotherapists, please contact Breast Cancer Action at the numbers or e-mail address indicated below.

    Resources at your disposal

    Breast Cancer Action Ottawa has Lymphedema resources to help you in your primary care role. More specifically, we offer patient education materials on risk reduction and management strategies that emphasize the role of exercise (available in French and English, free while stocks last). Please click on the ‘Resources’ article to view a brochure on Lymphedema. These materials have been developed by the Lymphedema: Take Control project, with funding from the Canadian Breast Cancer Foundation.

    Breast Cancer Action Ottawa is a charitable organization founded in 1993. Since then, it has both provided and advocated for community-based services for breast cancer survivors in the Ottawa area. For more information, please contact Kathleen Gotts at 613-736-5921 or [email protected]

    Written by Kathleen Gotts, Coordinator, Lymphedema: Take Control, Breast Cancer Action

     

    Finally, I have both lymphedema and RIBP. The progression has been over decades rather than the three years you mention. I still have some functioning and believe I have benefitted from exercises recommended by a physical therapist knowledgeable in the conditions. 

    Best wishes to you,

    Alice 

     

     

     

     

     

     

     


  • caearl
    caearl Member Posts: 42

    Hello Anita-2  Welcome to the group.  I am sure you have many questions, as do all of us.  Dr Devon I Rubin has written a paper on the Diseases of the Plexus.  If you do a search you will find it, it will be in a pdf file.  Page 18-19 are dedicated to the radiation induced brachial plexopathy

    The Brachial plexus is a complicated bundle of nerves and you will find that your progression and culmination is dependent on which parts of your BP is damaged.  Page 9 has a good picture on which areas of the arm connect to the different trunks of the BP. 

    Each of you may have different damage.  Some may not progress past general weakness, others may progress to total loss of function, as my Mother has.  Her RIBP started 6 years after finishing radiation, and has taken three years to progress to total loss of function of her arm with feeling only in the upper arm (shown on page 9)  She has also developed Horner's syndrome, which affects her eye lid.  (metastatic tumor has been eliminated for the Horner's syndrome)

    The onset of RIBP can be anywhere between 1 month and 18 years, although the median is 6 years.  And there are always those who buck the odds. 

    As far as the Tens unit being helpful, Mom has tried it, but doesn't see any real benefit. You may however find it helpful. She does use a rice bag, but you do have to be careful that it is not too hot. Finding a therapist who specializes in BP injury is a good idea, and finding a good lymphedema therapist is wise also.  If you can get the two working together, all the better.

    This group is a great resource...and together hopefully we can educate people about this condition and help find a treatment or prevention.

    Hoping this note finds you at a good time!!

    Terri 

  • binney4
    binney4 Member Posts: 1,466

    Hello, all, and welcome Anita!

    I just wanted to share that I spoke to a Chinese doctor last summer at the National Lymphedema Network international conference, who was trying to get started on a study of acupuncture for lymphedema treatment. She told me it has been used for all kinds of swelling in the Orient for centuries so it's an accepted practice there, but there have never been any evidence-based studies such as Western medicine uses to validate treatment effectiveness or safety. She feels that's important, so she's getting it started. She told me that to be effective, acupuncture need not be use in the affected quadrant of the body at all but can be done on the opposite side of the body just as well. (She also had nothing but scorn for American-trained acupuncturists, who she characterized as "careless!"Laughing)

    I spoke to a LE therapist/friend about the use of a TENS unit on an arm with LE, and he suggested that since it can be used to stimulate muscles, that it be done with the arm either wrapped or in compression garments (same as when you stimulate the muscles by exercise.) He suggested starting off very low and moving up slowly over several days. BUT!! he also suggested that it not be used at all in radiated areas as it might damage unsheathed nerve fibers (since there are no studies to show safety of a TENS unit post-radiation). NOT something any of us want to do!Tongue out

    That's my 2 cents, anyway. All just talk -- nothing definitive. (Sound familiar!Frown)

    Hugs all around,
    Binney

  • Anita-2
    Anita-2 Member Posts: 5

    Thank you Binney,

    Do you have the name of the Chinese doctor my pt who also does acupuncture is interested in hearing more about him.  As for the tens I will leave that alone for now and I have my sister knitting me a sleeve with half a hand.

    Thank you again you made things easier for me

    Anita

  • binney4
    binney4 Member Posts: 1,466

    Hi, Anita,

    I don't remember her name, but I'll try to find out. She's in San Francisco. 

    Does your sister have a pattern for your sleeve that she'd like to share? We could add it to the patterns in the "cold-intolerance" section of the RIBP page if you'd like:
    http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#FOR_COLD_INTOLERANCE:0

    Be well!
    Binney

  • binney4
    binney4 Member Posts: 1,466

    Hi again, Anita,

    I went hunting for the doctor's name and contact information and turned it up really quickly.Laughing  I'll send it to you in a private message. To view the private message, log in here and then look at the black bar near the top of the page. One section says, Private Messages, and after I send this to you it should have a number 1 in pink following it. Click on "Private Messages" and then on the message that appears. If that doesn't work come back here and post.

    If any of the rest of you are also interested let me know and I'll send it your way as well.

    Hope it helps!
    Binney

  • Anita-2
    Anita-2 Member Posts: 5

    She does not have a pattern but I can ask her is she can make one.  This is going to be her winter project in Florida.

    Life looks much better this week. I went from the information you, caearl and alicenh gave me and search for three days on the net to better understand what we are dealing with here and what to expect.  The result was these websites.  Hopefully this may help someone.

     What is Radiation Induced Brachial Plexopathy? =
    www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm

    Color diagrams of the Bracial Plexus beautiful pictures =
    http://homepage.mac.com/cljanney/PhotoAlbum8.html

    Managing Symptoms: Peripheral Neuropathy (Nerve Damage) from Oncolink


    website = http://www.oncolink.org/coping/article.cfm?c=5&s=27&ss=52&id=577

    Video series of 3 that explain in details how the bracial plexus works . From youtube
    = 1 of 3 http://www.youtube.com/watch?v=Jd35FKUNtds&feature=related
    = 2 of 3 http://www.youtube.com/watch?v=U3U1XGKtB0k&feature=related
    = 3 of 3 http://www.youtube.com/watch?v=5tEPkpJE1ao&feature=channel

    Anita 

  • ckslow4
    ckslow4 Member Posts: 1

    Well girls it has been a while since I have posted a note here mainly because the several medical providers (including myself) (oxymoron here) were trying to identify where this horrific pain was coming from in my Right arm.  The Left arm behaves like a typical (if you can call this that we have typical) lymphedema arm. So after 3 very long weeks of no physical therapy to allow the lymphnodes in the axilla to enlarge enouge to do their thing I guess to the nerves wherever they are, arepeat EMG was performed and I was blessed again with another diagnosis of Mild Brachial plexopathy...no motor response of the ulnar nerve...I'm right hand dominant and still work full time.  Am I nuts or what???  So here I sit alone in the living room with tears steaming dowm my face wondering what is next?  My oncologist supposedly is not impressed with the findings on the EMG, problem is I never had radiation treatments so what is causing the brachial plexopathy and who the HE.. is going to do something about it before it gets any worse? I can't get her nurse to call me back with any recommendations.  My physiatrist is mad at himself because the first EMG he did was "normal", he never checked the brachial plexus even though I was telling him I was having symptoms...he listened to a colleague of his who is also my boss who convinced him there was nothing wrong and now he has egg on his face.  I'm just so lost right now.  Hope has gone out the window, work has become more difficult and the pain is just wearing on me.  Nothing seems to help decrease it.  I'm taking 600mg of Neurontin every 6 hours and 900mg at bedtime to no affect.  I don't sleep for two to three days then I crash because of sheer exhaustion.  I'm really lost here and am not sure how much longer I can cope with this.  My friends have dissappeared and my parents are indifferent at this time because this has gone on too long.  They are also concerned about an older sibling who is overweight and needs a knee replacement.  It's hard to explain but it's the Greek way.  If any of you ladies have any suggestions as how to cope or other treatment options, I'm game, please let me know because I'm flat out exhausted.  Don't know where to go from here or how this happened.  Really baffled.  Thank you in advance for reading.

  • binney4
    binney4 Member Posts: 1,466

    Tina, you've been in my thoughts and prayers ever since you posted this. I've been hoping someone with experience with this would come along quickly and add some comfort and concrete advice, but they all seem to have faded into the woodwork! Frown I sure hope you've found some answers and relief by now. I'll go see if I can rustle up some of the gals who normally hang out here.

    Very gentle hugs, and prayers,
    Binney

  • Sunris
    Sunris Member Posts: 18
     
     

    Brachial Plexus Signs Are Usually Caused By Tumor Infiltration Or Injury From Radiation Therapy

    In patients with cancer, brachial plexus signs are usually caused by tumor infiltration or injury from radiation therapy (RT). We analyzed 100 cases of brachial plexopathy to determine which clinical criteria helped differentiate tumor from radiation injury. Seventy-eight patients had tumor and 22 had radiation injury. Severe pain occurred in 80% of tumor patients but in only 19% of patients with radiation injury. The lower trunk was involved in 72% of the tumors. Seventy-eight percent of the radiation injuries affected the upper plexus (C5-6). Horner syndrome was more common in tumor, and lymphedema in radiation injury. The time from RT to onset of plexus symptoms, and the dose of RT, also differed.