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radiation-induced brachial plexopathy

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  • binney4
    binney4 Member Posts: 1,466

    Terri, thank you for the updates. I'm so sorry for this new development and frustration. Please give Connie a big, very gentle hug from me. Glad to hear the lymphedema is under control now, but what a frustrating way to do it!Tongue out

    Thoughts, prayers, cyber-hugs to both of you. (Connie is a rich woman to have you there caring for her, Terri -- thanks for that!)
    Binney

  • binney4
    binney4 Member Posts: 1,466

    Erica, thank you for the list! That's so helpful. I'm really looking forward to this study as a way of identifying the needs, the helpful strategies, the realities. A review of the available medical literature is the first step in a medical study, and that is currently being done for this one by a doctor who is also a bc veteran. (As we're all sadly aware, there isn't much literature out there -- sigh!Undecided) The next step is to apply for the resources (a three or four-month process) after which we'll be ready to conduct interviews. The questions will be useful for the interviews, of course, but will also be part of the application, so getting the questions in order really moves the whole process forward.Smile

    Please add your suggestions to Erica's, all. Thank you, thank you!

    Hugs all around,
    Binney

  • caearl
    caearl Member Posts: 42

    Binney and Erica,

    Thank you for your kind words and hugs..I have passed them on to Mom along with a copy of the questions.  She is up and about, and actually came to the store to work the past two days.  Her GP has scheduled her for a BP MRI on Wednesday.  She wants to compare it with  the Feb MRI to see if the mass in her lung has changed. Her arm is still down, and she has ordered a Farrow Wrap sleeve and glove.  We are not sure if she can use the glove at all, but they told us it can be returned if it won't work for her.

    We are taking a vacation starting on the 26th.  I think we all need it. We are planning a trip to Rochester NY to visit with two of my siblings, and to have my Dad attend his 60th high school reunion.  I am sure we will be checking in while we are up there.

    Think of you all  Terri

  • binney4
    binney4 Member Posts: 1,466

    Hi, Connie (by way of Terri!Wink),

    Glad to hear you're up and out of the house. Looking forward with you to good news from Wednesday's MRI. Hope you'll get some results on that before your trip so you don't have to live with the rotten suspense (but that's just me -- could be you prefer putting off any medical news, in which case I hope it works out whichever way works best for you!)

    What a great get-away you have planned -- bon voyage! Kiss Prayers for a great trip. Keep us posted!
    Binney

  • binney4
    binney4 Member Posts: 1,466

    Connie, hi!

    Just wanted you to know I'm thinking about you tonight, wishing you an easy time of it tomorrow and cheering results.

    Gentle hugs,
    Binney

  • barbaraellen
    barbaraellen Member Posts: 87

    Hi, all, 

    I am still on the planet, but my computer and I are having a forced trial separation.  My son and DIL and sweet 3 1/2 year old have been staying with us since my last post, I think.  Thanks to the little one, they have been playing musical bedrooms here, so you can imagine.  Nah, maybe you can't.  I love them all, but they have taken over my computer a lot.  They are having a tough time moving into the condo they have rented for a year.  It is over an hour away from us, in heavy traffic, and they are running back and forth a lot.  Their moving truck should arrive tomorrow, taking a long route around from Phoenix.  They have had their stuff for over 2 weeks now, and I just hope everything arrives okay.  My granddaughter is in a new preschool, 5 days a week, and they have to get her there on time or they lock the door!  Is that out of sight?  I think they let the latecomers in after 15 minutes or something.  At today's unbelievable tuitions, you'd think they'd let the parents come in and play too.

    Now that I have finally managed to snare a few minutes here, let me also add my good wishes for a good outcome today for you, Connie.  I am so sorry you have had some unexpected and unfortunate  developments, but you are very lucky with your devoted Terri. I think a daughter like that is even rarer than Horner's Syndrome.  It does sound like your M.D.s are good, and I will be hoping to hear good news. .I hope you all manage to go on vacation in good spirits.

    Erica, that is a terrific list you put together.  I am not sure I would have anything to add.  But I will mull it over and see.  Everybody, stay cool.  It is 93 in Chicago.  Aaarrg!

    Barbara-  

  • Watts
    Watts Member Posts: 21

    Hi Everyone!

    While looking for info I found this site/forum. What a find!  I really appreciate all of you and you sharing your experiences.  I have learned so much.  Reading your post has been an eye opening and mind blowing experience.You have a new member to the CLUB! Smile

    MY STORY - I am 59. I was diagnosed w/bc(rt) HER2p in 2006. Had a lumpectomy, then masectomy, chemo, radiation30/+boost, continuation of chemo including herceptin interrupted by low heart function, then xeloda and now back on herceptin.  I developed lymphedma shortly after my radation treatment. I went thru LE therapy, which was well controlled with compression sleeve/gaunlet during the day and wrapping at night. I do have to admit that I didn't always wrap or do MLD every night. I had recurrence (cancerous nodules) in right chest wall. My Onc and surgeon agreed on surgical removal of nodules.(July 08).After surgery I noticed lymph swelling on right side of neck. Had CT scan / MRI (no cancer). Shortly after that last surgery, I began having intermitten more frequent swelling of my right (dominant) arm. Eventually it wouldn't go down. I went back to LE therapy (Mar 09). Minimal reduction. During this therapy, I began noticing and complaining of pain in my neck/shoulder/arm,burning in my thumb and gradual weakness and use of my arm. My Onc ordered an EMG and MRI. I was told EMG was fine and MRI revealed slipped disc and nerve damage/C-5 and C-6.  My Primary Care Physician and Onc agreed on prescribing gabapentin and referred me to Pain Management Specialist. PMS increased the dosage of gabapentin and referred me to PT. PCP told me a few months of PT would correct issue of weakness in arm and I would be good as new. PT wasn't knowledable of LE. No one ever mentioned BRACHIAL PLEXYOPATHY! I decided it might be better to see LE therapist and she was the one that told me about BP!

     I am so glad that you ladies are here. I never heard of this(BP) and thought I was alone.You have given me more information than the professionals.Recently retired, crafts were my pass-time (crocheting, sewing, floral arranging,etc) and using my hands was my mental therapy. Not being able to create is depressing!...along with the other functions that are near impossible with one non-dominant hand to work with. Thanks for your humor, inspiration and valuable information. It is good to know that you are forcing the medical community to stop, look, listen and really begin to study and research RIBP!  THANKS!  

    Watts

  • barbaraellen
    barbaraellen Member Posts: 87

    Hi, Watts, and welcome.  We are always saddened when someone has to join our sorority, but always glad that we are able to be there for someone who thought she was alone.  You are most certainly not alone anymore.  

    You have really had a lot of aggravation packed into 3 short years..........my goodness!  Just one unpleasant surprise after the next, followed by the usual lack of recognition by the medical community  I am very glad you found us too..  

    I can definitely identify with losing the use of your dominant right arm and hand.  It is extremely frustrating to try to do something as ordinary as tying your bathrobe, and realizing that you can't.  I am really sorry that so many of the special things you like to do are difficult or impossible to do now.  I always said I was glad I was not a concert pianist or an artist or a surgeon (HA!) or even a dentist.  Still, I hate that I cannot shake hands without seeing a frozen look on the extender's face when I have to extend my left hand, if it's empty.  Of course I wish I could still sign my name and write down a phone number or a quick note to myself.  By the time my lazy left hand gets it down, I forget half of it. 

    I don't sew or anything, but I think Binney has some kind of devise that lets her do that.  And if you can still scribble your name, get a stamp from a place like Office Max.  I found it very helpful.  Or if you cannot hold on to a pen, you can get yourself a whole new signature by writing with your left hand, very slowly.  You should have seen me when I got my driver's license renewed.  You can't use a stamp for that.

    Stay tuned for all the latest news we can muster for you, and take care.

    Barbara-  

  • barbaraellen
    barbaraellen Member Posts: 87

    Erica,

    Your list is really so inclusive, I am not sure this concern is needed to be listed separately.  Well, here it is anyway:  Do you think there is a connection between your lymphedema and your BP?  Why?

    Happy Fourth of July, Everyone!

    Barbara-

  • binney4
    binney4 Member Posts: 1,466

    Welcome, Watts!

    Really sorry you've had to join this select sorority, but so glad you found us here. What a roller coaster you've been on!Frown The loss of the hand-work is so difficult. I don't have RIBP, but my bilateral LE is much worse in my right (dominant) hand, so I too had to give up crocheting -- used to have it with me everywhere I went, always working on something. I've taken up loom-knitting, which I can do with my left hand, but it was very frustrating learning to do it that way. I did order a small book from Amazon called "How to Conquer Hobbies with One Hand: 50 Tips and Tools to Make Things" by Paul Berger, but unfortunately his main hobby is making model railroads. But it was inspiring, at least. We need to write a book like that for us needle-crafters! I wonder if there are OTs who could help us figure out how to use a sewing machine one-handed? Cutting is still a problem, of course, but I weight the fabric down with books and use a rotary cutter. The hardest part for me is working up the motivation to do these things when it's so much more effort than it used to be...

    I do have some happy news to report on the handwriting front (well, this week I'm happy about it, but I could be frustrated again tomorrowTongue out): I'm practicing with the "Handwriting for Heroes" workbook and actually starting to feel good about my growing skill with it. Still looks like elementary school writing but, hey, it's more readable than any of my doctors'! And I'm getting faster all the time. Barbara, I hear you on forgetting what I was writing by the time I can get it written, but I'm hoping I'll continue to improve. It has given me empathy bordering on reverence for the struggle of young children to master handwriting -- who knew?!Undecided

    Watts, have you visited the RIBP information page? It's here:
    http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm

    Barbara, is your family resettled yet? Hope things have calmed down to a dull roar for you, and that your computer is firmly in your own hands again.

    Be well, all!
    Binney

  • binney4
    binney4 Member Posts: 1,466

    Barbara, thanks, good one. I'll add it to the list.Smile

    Yes, Happy Fourth to all! Well, even those not in the U.S., it's still the fourth of July (no cap) and I hope you have a happy one!

    Hugs!
    Binney

  • Watts
    Watts Member Posts: 21

    Hi Barbaraellen,

    Thanks for the warm welcome, concern and tips. I'll write back soon.

    Have a wonderful 4th of July and weekend. Cool

    Watts 

  • Watts
    Watts Member Posts: 21

    Hi Binney!

    Thanks for the warm welcome, conern and tips. Yes I did visit the site and found it quite helpful, thanks.

     Have an enjoyable holiday and weekend.

    Watts 

  • Watts
    Watts Member Posts: 21

    Hi Everyone!

    I keep checking this site for more information...guess everyone is on vacation Smile ! HAVE FUN and enjoy! I'll continue to check. Take care. Best Wishes....Watts!

  • donsuzbee
    donsuzbee Member Posts: 43

    Watts,

    Did you find a lymphedema pt?

    Susan

  • Watts
    Watts Member Posts: 21

    Hi Susan,

    Yes I did get referred to a rehab center in a hospital with a lymphedema pt by my oncologist. Thanks for asking. I go three times a week for an hour. She has been working on reducing the fluid. Plan of care includes physical therapy as well. So far there is nothing to report. Will keep you posted.

    Watts 

  • binney4
    binney4 Member Posts: 1,466

    Watts, since exercises with RIBP seem to be something of a mystery, would you mind sharing what your PT does and how you think it's working for you? Is this a PT who's particularly knowledgeable about RIBP? It's really hard to find therapists who are.

    Thanks!Smile
    Binney

  • binney4
    binney4 Member Posts: 1,466

    Caearl (and TerriSmile), thinking of you and hoping the trip was wonderfully refreshing. What news? Any way we can help?

    Hugs, prayers,
    Binney

  • shuddaknown
    shuddaknown Member Posts: 1

    Erica,

    Just found your post as I was looking for answers to why I am getting SEARING, BURNING pain under my arm radiating to my back.  Found this site: http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm and it describes it, shows pics etc.  EXACTLY what is causing etc.  At least now I have a name for it,  I see my dr. Thursday.  Sure wish I would have known all this, would probably have had total mastectomy on both sides and be done with it, which is what I WANTED to do anyway.  I am 70, was diagnosed with breast cancer in January, had Partial Mastectomy and more surger to remove larger margin (cancer NOT in Lymph nodes tho) and then was candidate for NEW SAVI radiation implant (5 days-2 treatments a day and you're DONE), which was finished a few weeks ago.  Just started having this SEARING BURNING feeling from under my arms to my back a few days ago, had the "stringing" almost right away after surgery and more after radiation.  When this SEARING BURNING sensation hits, I SCREAM, cannot  keep from it.   Will keep you posted on what the dr. says, but I want to go to a Neurologist for SURE.  I have good health ins. so can go where I need to as long as dr. is Medicare Provider. 

  • caearl
    caearl Member Posts: 42

    Hello Ladies,  What a journey.  Shortly before leaving for our vacation the store computer died, and we have only just been able to replace it.  Mom's MRI was post poned until after the trip.  She has seen the Neuo Opthomologist....All news is good.  Mom does have Horner's syndrome which is being caused by radiation scar tissue in her upper lung.  No Tumors !!!!  Laughing    She is using drops to lift her eye lid.  This can be done 4 times a day and she only uses them when she wants to do some reading.

     Her lymphedema is currently under control.  While on vacation I was able to do a manual massage and wrap her hand daily, she also got a Farrow Wrap just before we left.  The Farrow wrap is the Light version and although she has trouble getting it on herself, it is so much easier and comfortable for her.  (Her arm paralysis makes it impossible for her to move her upper arm away from her body.)  Her Dr. has referred her to one of the teaching hospitals for a consult.  Apparently they are using the Hypobaric Chamber to treat radiation damage.  We are not sure where this will lead but we will keep you posted.

    Thank you for all of your prayers and good wishes.  I am sad to see we have another member,  although I know the joy Watts, that you must have felt when you found this site.  It is like opening the door to a secret garden.Smile

    Terri

  • Watts
    Watts Member Posts: 21

    Hi Binney,

    Sorry to report that my therapist has basically been dealing with the lymphedema, not the RIBP. She was the one that alerted me to the term BP, but hasn't given me any therapy or exercises to do. My plan of care was supposed to include physical therapy along with the lymphedema therapy. I am presently attending three times a week for one hour. When we start the exercises, I'll be more than happy to share any information I get with you.

    I was attending another therapy program prior to this one that gave me exercises that I couldn't do such as using a cane behind my back and lifting it up with both hands (didn't work), also placing my arm on a ball and rolling it across the table. Well, my limp arm would fall off the ball! (didn't work). Bought over the door pulleys...to lift my arm for stretch. Well, that resulted in my good arm hurting (elbow pain). These therapist admitted that they were not familiar with lymphedema so that was why I was referred to the rehab center.

    I am going back to my oncologist to find out where I might find someone who can deal with both issues if I don't get any satisfaction from this rehab program.  I am confused as my oncologist and primary care physcian both have stated that my test results do not indicate that I have BP, yet I can't lift my arm or hold a pen!. I have a burning numbness in my thumb and fore-finger and periodically shooting/burning pain running through my arm and hand. My oncologist suggested that I see a neurologist, but my primary care physcian disagrees and stated that with long term physical therapy, I'll be able to use my arm again. I have to keep fighting to get satisfaction. What a struggle! 

    Keep the faith!

    Watts 

  • caearl
    caearl Member Posts: 42

    Watts,  My mother and I  would suggest that you check your insurance to see if a referral is required.  If not, set up a consult with a neurologist, and insist that they keep an open mind about BP.  Being rare they are not always open to the possibility that it still happens.

    Mom's EMG and nerve conduction tests, early on, also showed that her nerves reacted, however there was a problem with the message getting to the arm.  At that time, she had bicep use, some finger use, and some ability to raise her arm out to the side, although she couldn't put her hand in her pocket with out looking like a drunken soldier.  That was two years ago.  She had been diagnosed with spinal stenosis by one neurologist, unfortunately for him, he was less than proactive with a stage 4 BC survivor and was caught in a lie about her test results.  Mom fired him and went to see a neurosurgeon.  He ordered an MRI of the Brachial Plexus and diagnosed BP.  She tried many different PT sessions and did the exercises at home faithfully, but the loss of use progressed on, until she finally lost all use of her arm and hand just this past Feb. 

    Many medical professionals we encountered did not believe that this was a correct diagnosis.  After much research and a neurologist who specializes in MS and qwerky symptoms, the diagnosis was confirmed.  Mom's Lymphedema therapist is a PT who specialized in hands, and stroke patients, prior to  becoming a certified  LT.  This has been such a blessing as she has given us so much more guidance and information, and training than anyone else.  We do some exercises that help keep her shoulder from freezing.  We had been doing water therapy until her supination began causing problems.

    We are a crafting family, in fact our store is a gift and craft store.  Right now Mom is sitting making Christmas cards for a card swap.  There are some things that she cannot do, but  we help with the fine cutting or finishing of straight strung beaded pieces.  Monday she bought one of the knitting rings and is going to try to knit something. She said that there are books out there but she is going to try to figure it out on her own first.  She also loves to bake and will do as much as she can on her own. 

    If there is anyway we can help you with your creative needs or in any other way, please let us know.  In the meantime, may your journey be blessed with enlightenment for yourself and those whose lives you touch.

    Terri (and Connie too)

          

  • barbaraellen
    barbaraellen Member Posts: 87

    Hello, Ladies All,

    I've been reading the posts of our newest members, and I am really incensed by the arrogance and ignorance of some of your doctors.  All of us with RIBP should be seen by a neurologist.  It never ceases to amaze me that the doctors who don't know the answer have the nerve to tell you that they are "sure" you don't have RIBP, and then tell you you don't need a neurologist!  Not that every neuro is a genius, but they do seem to understand that when the brachial plexus is damaged by radiation, the hand and arm are going to stop working.  Watts, you take the prize for having TWO doctors who have no idea why you can't hold a pen, but they are sure it is not what you suggest it could be.  Your primary sounds like she is one step away from blaming you for the whole thing!  

     I am so sorry that some of you have such terrible pain from our situation.  I have no idea why I do not, aside from an occasional twinge.  Now, that is a difference that they could all be working on instead of drawing conclusions that have no basis in fact. 

    I think that the first thing our Step Up site should do is insist that RIBP be included, even in last place, as a possible long-term side effect of radiation therapy in whatever textbook those medical schools use.  That way, they will at least have heard of it.  Or they could include it in the latest newsletter that they send out, that is, assuming  these guys keep up with the news in their fields.  (DEEP SIGH HERE!)

    Terri, I am interested in hearing more about that hypobaric (sp?) chamber treatment your mom is getting.  I sure hope it is successful.  My PT thinks that the scar tissue we have is responsible for our nerve damage, and if we can soften that hard tissue with massage, it could help.  Anybody hear that? 

    Barbara-  

  • ronimom
    ronimom Member Posts: 34

    Hi Everybody,

    I ham having an interisting experience with my energy healer.  I feel silly writing my experience out, but it is interesting.  I have been seeing her for about a year, and she has been crucial in helping me emotionally.  She is better than any counselor I have had.

    Lorelai's energy comes from her years of meditation and her energy training.  This week, she tried something new and wierd on me.  She told me my hand does not like being disconnected from my body.  She told me to tell my hand I love it instead of hate it.  Every time she works on my arm, my hand moves involuntarily.  This week, as she was working on me, my hand began to flap around, then my arm did.  I experienced this the whole hour she was working on me.  Neither of us could underrstand what was happening.  It took awhile till my arm and hand stopped twitching.  I am now conscious that my hand and arm want to move around, and I am holding everything tight.  My range of motion has decreased, and after this session with her, I got in the pool and moved my arm, breast stroking etc, and jumped around in the pool doing this.  (Last year I realized I cannot swim or even tread water anymore. My hand flaps back and forth and cannot pull the water through.)  I still cannot swim, but I was able to get in the pool and exercise my arm.  I put my compression garments on afterwards. I had fun! 

    I don't know where any of this is taking me, but I am open to it.

    Has anybody else tried energy work?

    My best to everyone,

    Ronimom

  • binney4
    binney4 Member Posts: 1,466

    Connie and Terri, I'm so delighted with your "no tumor" news from the doctors! Hope you celebrated -- chocolate's always good.Laughing Sorry about the computer break-down -- amazing how isolated we feel when the stupid thing's not working, isn't it?

    Ronimom, I love your happy news too and am really anxious to hear how it all unfolds for you. Encouragement from any quarter is so welcome. Bet the water exercise was wonderful for the lymphedema too.

    Barbara, yes, I agree that RIBP needs to be included in the med school learning programs. We do have to remain vigilant with the Lymphedema Framework Project (that you attended in Chicago awhile back) so that they don't fail to include it in the Best Practices documents that they end up with -- because that's going to influence the information taught in our med schools, the specialties that deal with it, and the development of a new medical specialty in conditions of the lymph system (which impacts RIBP as well). I just now discovered there's a Framework meetin in late August, but I haven't discovered where, or who can attend. Since you attended the one in Chicago, you might want to contact them and see what's up with the one in August and whether there's some way the RIBP gals can be represented there. Let me know if you discover anything, and I'll keep you posted as well.

    Hugs all around!
    Binney

  • Watts
    Watts Member Posts: 21

    Hello All,

    Thank you for your encouragement. You just don't know how much your valuable information means to me.

    I saw my primary care physician recently and finally convinced her to write up the referral to see the neurologist. I'll keep you posted on that after my appointment. My lymphedema therapist has requested more therapy, both for lymphedema and physical therapy. And the battle goes on.

    Barbaraellen, Connie and Terri,

    Thank you for all the information and encouragement. You have been a blessing to me.

    Watts 

  • Kay-kay
    Kay-kay Member Posts: 9

    Caearl,

    Your mother is amazing.  Your post is very inspirational to me.  I remember when I was able to move my arm and bend my wrist. Wow! those were the days.  After my second round of Rad, my left arm is just hanging by my side with only shoulder movement. 

    Questions for you--instead of wearing a slang everyday how is your mom preventing dislocation?  How are her fingernails on BP hand? Please advise.

  • ronimom
    ronimom Member Posts: 34

    Hi Everyone,

    If you wear a jovi-pak at night, try putting it in the freezer when you are not wearing it.  We are having extreme heat out here in Seattle, and a lyphedema friend recommended this to me.  I did it yesterday and it worked.

    Ronimom

  • binney4
    binney4 Member Posts: 1,466

    Hee-hee! Good thought, Ronimom! I do that with my Solaris, but just in the refrigerator not the freezer. The foam holds the cool for quite awhile, and it sure makes going to bed a lot easier! A word of caution: make sure you put it in a plastic bag first and . . . uh, don't put it anywhere near the onions. Undecided

    Binney (sadder but wiser!)

  • binney4
    binney4 Member Posts: 1,466

    CoolLADIES, UNITE!!! Cool

    Barbaraellen did the research and discovered that the Lymphedema Framework Project is having a meeting of its Steering Committee and Executive Committee in late August in Florida. The LE Framework Project is putting together a concensus document on best practices for the treatment of lymphedema for the U.S. This will determine standards of LE diagnosis, treatment, and follow-up. It will also outline what will be taught about LE in our medical schools. Hopefully it will even create the foundation for a recognized physician specialty in lymphology.

    We're going to want RIBP to be considered in this document (as well as in med school training), so now is our chance to influence the August discussions of these two committees by letting them know we want RIBP to be a part of the Framework Project Document. So, here's your mission, should you choose to accept it! (Theme music, please, from "Mission Impossible"):

    Send an email to the Framework organization and ask them to add RIBP to the discussion at their Florida meetings in August. Tell them how important it is to you to make the medical community aware of the unique challenges of lymphedema when it's part of RIBP. If you can share your own experience with trying to control LE in the presence of RIBP, or even struggling to get a diagnosis, please do so. We want this to be at the front of their minds as they meet to consider what needs to go into this document.

    Barbaraellen attended the initial planning meeting for the Framework Project, and she really felt that the needs of those with RIBP were pretty much "shouted down" by everyone else's agenda. So even though some of the "movers and shakers" of the Framework Project are aware of RIBP, it's really up to us to keep it at the front of their minds. 

     Here are the names of people you can address your email to:

    Melanie Schneider
    Project Development Specialist
    American Lymphedema Framework Project
    University of Missouri

    or

    Jane Armer, PhD, RN, Director
    University of Missouri Center for Lymphedema
    Research, Practice and Health Policy

    The address to send your email to is:
     [email protected]

    Let's get out all the drums and bells and whistles we can muster and make sure we're heard!

    YES!!
    Binney