Sorry that I can't offer up any advice, but you are not alone. I feel your pain. I am in pain 85% of the time. My right arm and hand gets burning pain and sharp nerve pain runs up and down my arm. I take 600mgs of gabapentin three times a day and vicodin and a lidoderm patch when it is unbearable. My doctor prescribed Fentanyl patches, but I didn't like what I read about the side effects, so I haven't used them. I know its hard. I have screamed out, hollared and cried out loud with the pain, but we have to hang in there and keep fighting. I get depressed and then I have to get up and out. Don't give up!
Prayer and faith keeps me going. Take care...
Tina, Watts..Ladies...Mom asked me if I had posted recently and I told her about Tina's post. She says don't stop asking questions Tina. BP is not just caused by radiation, or tumors, it can also be from injury. Do you have a neurosurgeon? Have them find the cause..it takes more then an EMG. She is keeping you in her prayers, she knows that the pain is the hardest thing to deal with...
Mom herself has been on an interesting journey...Since being diagnosed with Horner's syndrome she has been experiencing the worst pains ever....so the Drs have begun the switch from Lyrica to Neurontin with Lexapro as a stop gap. Poor girl has been in bed for a week!! She is now up to the full dose of the Neurontin so we are hoping the quezy stomach will end.
She has also had an EKG and there seems to be an irregularity..we are now going to become aquainted with the cardiologist.
If I understand everything that I have read, there is a rare chance for delayed radiation damage to the heart. This can manifest itself in one of three ways, congestive heart faillure, valve damage or muscle damage. We already know that she has scar tissue in the upper lobe of her lung, which is causing the Horner's...We are also aware that some of the symptoms she has been having are heart problem symptoms..I will keep you posted as to the results of her cardiologist visit.
She is also having what I think is called an Ulnar Nerve Transposition. They hope that this will keep the Ulnar Nerve from becoming so irritated when she bends her arm. This seems to be one of the biggest causes of her pain.
The good news is that her lymphedema has been under control, and she has actually been down further than when she first started with the therapist 8 years ago.!!
This RIBP is such an enigma. Each of you have had different responses, some have progressed a small amount and others like Mom have total paralysis of the appendage. PT and, Exercise...may help those with mild damage,..but it will not stop any progression if you are going to progress. Mom exercised regularly and had physical therapy, all to no avail.
But not to despair...My mother just celebrated her 10th anniversary. She was stage 4 IDC, we thank God everyday that she is with us.
May you each find a few moments of peace today.
Ten years! Oh, Connie, my heartiest congratulations! Hope you did something richly chocolate to celebrate.
Terri, thank you so much for keeping us posted. Since there is so little helpful information about RIBP anywhere, staying in touch here is so important -- we don't know when something that's said will be exactly what another needs to hear in order to ease some pain or make some progress.
So glad to hear about the lymphedema control, too. That's really hard to accomplish with the RIBP, yes? Does she have strategies to share about what works to keep that in control?
Terri , Binney, ladies,
I just want to thank you so much for your encouragement, sharing your experiences (Terri your Mom's) and sharing such valuable information! It means so much. We struggle daily with our condition. WOW! Congratulations to you Connie for every day of those ten years!
We have to keep going, taking it one day at a time.
Binney, The LE is harder to keep under control because of the loss of muscle to pump the fluid, so you also end up with dependent edema. The trick? well when ever she is sitting or reclining the arm is elevated. Her entire arm is flaccid so it needs to be either wrapped or in a brace to keep the wrist bones from shifting about and pinching the ulnar nerve. Usually I will wrap her hand and will slip in some open cell LE foam for additional compression if needed. I modify the LE wrap by adding additional support at the wrist. Then we are using the Farrow Light wrap on the rest of the arm. That wrap is great because it is easy to adjust the compression as needed. She supplements with the Flexitouch, although she can't tolerate it when the ulnar nerve pain is bad. I do a lot of manual massage for her, and attend her LE therapy sessions to learn more. And finally hydration. She has been keeping track of weather and the full moon to look at flair ups of both the pain and the LE. Seems to have some pattern.
Thank you all for being here. It saddens me to see the group growing, yet as the numbers grow, the strength of this group will also grow and perhaps our voice will be heard.
May this note find you at a good time.
I'm making do, and I know we all have to...The nerve pain doesn't know when to quit! I'm sorry you all have this to deal with, but at the same time, I welcome your company. I am adding a Jovi-Pak vest to my night time attire. What a sexy babe I am!!!
Terri, thank you so much for the information. Lymphedema is so hard to control with RIBP, and I so much admire you both for staying on top of it so well. I'm really interested in the full moon theory -- haven't thought of that. Let us know what she discovers about it, please. The weather certainly plays a big part in my flares, as does the amount of sleep I get (or don't get, to be exact!). Others say that stress plays a role in their flares, but I'm not sure how you would judge that since pain is a stressor all by itself.
Ralpha, I love your joyful nature -- it always lifts my day. I too have a sexy JoviPak vest. One of the gals on this board is a designer, and I asked her to help me come up with a way to make the look a bit more acceptable, and she told me to think of it as a modern, industrial look. So now I think of myself as quite chic in my nighttime get-up. Did you see the JoviPak picture on the StepUp-SpeakOut RIBP page, with the extra loop built in for supporting the arm?
The doctor who's doing the medical literature review for our RIBP survey study was surprised at how very little there is, but I figured none of you would be one bit surprised at that.
Hugs all around,Binney
I have trauma induced brachial plexopathy, from a car wreck 30 years ago. The moon phases are not as much a factor as the barometric pressure reading. The higher it is, the stronger the pain (for me). And I am one of what they said was 10% of the population, who are radial artery dominant - meaning the major blood flow in my arms is thru the radial artery. Since I had left side lumpectomy and my bp is left arm (also my dominant arm), I fear for lymphedema. So far, so good but my hands are very sensitive to cold and I wear gloves when it is near or below 50 degrees. I call it my fashion statement !!!! Isotoner gloves work very well for the neuropathy also.
I was fortunate enough to have out patient therapy at a hand rehabilitation unit of a large rehab facility. It took over a year to make a fist. My hand surgeon - 7 reconstructive surgeries - was a plastic surgeon, specializing in hands. I know much of this is not the same as any of you have, but sometimes a thought turns into a question for the doctor or therapist and things improve.
OH, another thing, I have cervical disc disease and that has caused "flares" of pain radiating down my arm. Heat helps, as do various medications... Here's hoping you all have a pain free rest of the week and restful sleep. Hugs, Nancy
edited to correct spelling, I hope !!
Good Morning "RIBPites"
Just a quick note to update you on Mom's status. She was able to come to work for about two hours yesterday for the first time in over two weeks!! We also went to the cardiologist for an echo cardiogram. If you have never had one it is like an ultrasound with super doppler radar to check the blood flow. Very interesting to watch. She had a stress test last Wednesday, and we will be going back on the 11th to meet with the Cardiologist to review the results. One of the techs said that if there was anything that needed immediate attention she would not have been allowed to leave. ... now to wait for the results.
We also revisited a neurosurgeon about the ulna nerve pain, and he suggested another EMG to pinpoint the source. He also talked about "installing" a pump that would inject the pain meds direct into the spine rather than ingesting and having it go through the liver. Not sure if she is a candidate for that so we are seeing some other "ologist" Mom's dance card is filling fast for the month of November....
Did you know that there is now a hands free tooth paste machine!!? Mom was given one for her Birthday. Much easier than using IGORA (RIBP arm) to hold the toothbrush. Oh the little things in life that excite us...
I hope that this finds you all in at a good time.
Oh, my goodness, Terri, a great "gadget"! Is this the one she has?
(Actually looks great for anybody, especially with kids.)
Sorry about the full "dance card," but looking forward with you to some great new dance moves! Thanks for keeping us posted.
Binney, Yes that is the one!! Isn't it great. I have also recycled a large pump bottle for her shampoo so she easy dispense that too.
BTW we have some great news. All of the tests Mom had on her heart were normal. The pain is not being caused by her heart. There is some scaring at the base of the heart but the Dr said that it appears stable. Everything else is good. Whew!!!
So it is the arm pain that is causing her to be sick, light headed, short of breath....Now to the other guys to look at other ideas for pain management. They will try to pinpoint the source, the sublexation of the arm...the Ulnar nerve.
Before I forget, I thought it may be helpful if our LE Therapists networked about RIBP. So I spoke to Mom's therapist and she told me about a new community for therapists and patients, and families. This may be another good way to share what we are learning with others, and have the therapists share too. Anything that will help enlighten people about this condition!!
Hope this finds everyone at a good time.
I have RIBP as a result of radiation and the arm suffers from cold even when it is not cold. I was able to get relief after 3 sessions of acupuncture then she told me to comeback when I need it. I had to wait for her to return from vacation to started again. I am now on the second treatment and it is getting better. The acupuncture helps mainly with the cold, some of pain and it also helps the shoulder. I did not expect the shoulder to act up at this early stage. I did not mention to the acupuncturist that she should not put needles in the affected arm. Last summer I did get an infection in the arm and I don't mind the trade off. Thank You everyone for being there. I think the thing that hurts me the most is to be told that some are worst off. I don't see how that minimizes my pain and sense of loss.....
God bless you all
lLadies, After her heart study, Mom developed a case of shingles, you guessed it, in her RIBP arm, the shingles then developed into a case of cellulitis. She has also been dealing with awful pain. The Dr. has upped her meds, and given her something stronger for break through pain. God willing she will be able to join us for Thanksgiving Dinner.
We would like to send our wishes for a quiet period in your RIBP journey, where you can each enjoy the friends and families that will gather for the holidays.
May this note find you all at a good time.
Aw, Terri, shingles?! I can sure see where that would lead to cellulitis in an arm with lymphedema. I so hope you all had a peaceful and painfree Thanksgiving. Cellulitis is painful and so in shingles, so that added to the RIBP pain is beyond comprehension. Hopefully the antibiotics have already brought down the pain level from cellulitis, and the lymphedema will soon be back in control.
Anita, I agree with you on that "some are worse off" argument. Never has done a thing for me, except perhaps to make me feel even more miserable. I think it's often said because people don't know what else to say, but it's no kindness to minimize anyone's suffering with that kind of statement. Have you talked to any of your doctors about a low dose antibiotic while you're actively doing acupuncture, so as to lower the infection risk. Also, acupuncture is something that can affect your involved shoulder and arm even when the needles are placed elsewhere in your body. Do talk to the acupuncturist about using other sites instead.
Terri, I sent you a Private Message. If you have trouble accessing it please let me know.
Hugs to all, and hope the day-after-Thanksgiving turkey soup is a yummy and cozy reminder of a perfect Thanksgiving day!
I was finally able to complete the MRI and see the neurologist concerning the pain and paralysis of my right arm. The MRI Report reads as follows:
EXAMINATION: MRI OF THE BRACHIAL PLXUS/UPPER EXTREMITY WITHOUT AND WITH CONTRAST.
CLINICAL INDICATION: Pain and swelling of the right arm. Lymphedema right arm. History of breast cancer.
PROCEDURE: Multiple axial, coronal, and sagital sections have been obtained. 15 cc of gadolinium has been used.
There is fairly extensive lymphadenopathy seen in the suptaclavical region on the right side of the neck. These lymph nodes show contrast enhancement. They surround the brachial plexus especially the trunks and cord region. These nodes are seen anerior as well as posterior to the medial scalene muscle. There is also involvement of the chest wall anteriorly on the right side. Whether this is related to lymph node or recurrence of breast cancr with involvement of chest wall is undetermined. A CT of the neck and chest may be helpful for further evaluation.
Extensive lymphadenopathy involving the right supraclavicular region surrounding the brachial plexus and anterior chest wall on the right side.
I am still undergoing chemo treatment (navelbine) and the neurologist said that if the chemo can reduce the nodes, there may be some relief from the pain. No promises on the paralysis.
Binney and Terri, we rely on you so much. You are so knowledgable and resourceful. What do you think of the MRI Report? None of the doctors want to specifically say I have "brachial plexopathy" . The neurologist prescribed tramadol for pain. I have been taking gabapentin and vicodin for pain.
Thanks for any comments, suggestions, advice etc.
Ah, Watts, these tests are so stressful, and until we finally get solid information it's so difficult to live with all the "what ifs." I'm no doctor, Watts, but the way I read this is that you have some swollen nodes in the supraclavicular region. There are a number of things that can cause this, including infection, inflammation, a condition called sarcoidosis, cancer, and others. So this is a description of a symptom, but it's not a diagnosis one way or another. It just suggests further testing (a CT scan of the neck and chest) to try and get a definitive diagnosis. Even that may not tell them what the cause of the swollen nodes is, but it might rule out some of the possible causes and reduce the number of possible explanations. As for diagnosing RIBP, that really is a problem. It's rare enough that doctors see little of it and aren't used to making this call. Some of the gals here (barbaraellen and Sharz, for instance) have seen many doctors and done many tests before they were able to get their diagnosis "for sure." It's great that RIBP is rare, but it sure doesn't help anyone with this condition get help.
I hope you'll relax and wait out the testing period. Get copies of all reports and tests and organize them in a three-ring binder so that if you need to see another specialist for a second opinion you'll have everything s/he needs to make a determination.
None of which is much help, I'm afraid -- waiting is the most challenging part of this entire rotten process. I'm praying the CT can be scheduled soon, and that you'll find something delightful and absorbing to keep you busy in the meantime (a few funny movies? a new puzzle book? a good mystery? a new pet?). Please do keep us posted, Watts, and tell us how we can help.
Gentle ((((((hugs!))))) and prayers,Binney
Thanks Binney...I will keep you posted!
Hi everyone. Although my BP is due to trauma, long time ago and multiple surgeries on that side, I have a question for you all. HOW can I get people to STOP hitting my arm and grabbing it when they talk with me?
The other day at bridge, one lady kept slapping my arm - even after I asked her twice to NOT do it -- and it started spasms of severe pain, which lasted for 2 days. I wear a splint on my wrist due to the weakness but that did not make any difference to her. I am tempted to wear a sign that says " Do Not Touch this arm unless you want a smack in the face ".... Just kidding, but what can I do? I even told her that I have Nerve damage and it hurts when someone touches my arm. I can't really avoid sitting next to this lady as the seating is random and we rotate partners. And I hate to get "nasty" but you all know that prevention is the key word.
Thanks for any input. Gentle Cyber hugs and blessings for all, Nancy
Watts, I know that the hardest part is getting a definitive diagnosis, and eliminating the poss of recurring cancer, along with the pain and the waiting. Our prayers are with you as you go on this journey.
As Binney said we can't give you a diagnosis, but share our observations, experiences and thoughts. I think I would question your neurologist as to their knowledge of RIBP. You may wish to ask for a second opinion. And that is ok to do.
I went back and reread your posts and noticed that you are HER2 pos. We do have a friend who has a simular condition to RIBP , She also is HER2 pos but does not have the paralysis. She has had nodes popping up on her shoulder and neck and has been on Chemo to keep them under control. Unfortunately, I can't share more than that with you, but I will check with her to see if she would be open to hearing from you direct. She could give you insight into her condition and how it relates to what you are going through.
Nancy, I seem to remember that early on Mom had a problem with pain like you described. We did find that when her arm was bandaged people became afraid of touching it. Maybe if you wear a sling it would be a subtle way of saying "keepa your hands off!!!"
If that doesn't work perhaps an arm band with one of those hand zappers attached, that would deliver a shock to them when they touched you... Hope the sling works...
Wishes that this note finds you all at a good time.
Do you think a sling with a skull and crossbones would work? Have a good evening. Keep warm, keep happy, and gentle hugs, Nancy
Hope all are doing as well as can be expected and taking care.
Thank you for everything. You are always so encouraging and informative. Unfortunately, the cancer is/has recurred. I seem not to be responding to any chemo thus far. I have been on chemo since diagnosed with BC in 2006. My cocktails have included adriamycin, cytoxan, taxol, herceptin, xeloda, femara and navelbine.
I am such a regular at my health center, everybody knows me. ( 2-3 visits a week-test, blood work,chemo, Dr.'s visits, etc.).
I feel like I should be punching a time clock and getting paid!.
I saw my oncologist yesterday,who will be conferring with the neurologist for their next plan of care. The oncologist suggested radiation, which I am not sure about since the radiologist stated that I have had the max! My next visit with the oncologist is in two weeks. By then, hopefully everyone will know what the next step is.
Thank you for information about your friend. Please share my story with her. Any information, experiences she is willing to share would be greatly appreciated.
Thanks for always being so encouraging as well as informative. I've been trying so hard not to let this thing stop me. It has slowed me down, but I refuse to let it stop me. The fight goes on! I am blessed with loving family and friends who give me a lot of support. Recently, I celebrated my 60th birthday on a cruise to the Bahamas with a group of twenty, family and friends, which my daughter planned. It was wonderful. Upon our return, we celebrated out with a dinner with those who weren't able to cruise, planned by my daughter and husband. Every Friday, a small group of retired ladies and I go for movies and a meal and sometimes shopping. It's our rule: no violent, horror or stressful drama movies. It means so much to me to get out and relax like that, since most of my time is spent dealing with my medical conditions. In the meantime, my daughter, who lives next door, has the cutest little dog, who gives me great pleasure to visit and spoil (yes, I have a grand-dog) :-). I sit with my mother (bilaterial leg amputee due to diabetes) on Wednesdays and work puzzles. So you see...your suggestion were right on! Planning a little get-away in January to celebrate a friends 60th!
Everyone... be blessed, keep warm, take care! Try smiling through the trials and pain.
HAPPY HOLIDAYS TO ALL!
Watts, extra prayers are sent up for you and your family. Such a lot going on for you. Very gentle HUGS for everyone. Nancy
Thanks Nancy! You are so kind. I really appreciate it.
Oh, its cold in Chicago and I hurt! Hope you are keeping warm. Have a HAPPY HOLIDAY!
I take it that you have been quite busy with all your holiday preparations since I haven't seen any new post in awhile. I hope that all is well with you and your families.
Well, I guess I am now officially a member of this exclusive club! I saw my oncologist yesterday. He and the neurologist discussed my last MRI. They said that they suspect BP, even though test prove negative. They finally gave the condition of my arm a name.
Have a very Happy Holiday and a Prosperous and Healthy New Year!
I am so sorry to hear your news, Watts. At least recognizing that something is going on is a step forward with your doctors.
I found one way to keep people from pounding my arm -- say OUCH, as loud as you want. When asked what is wrong, answer " brachial plexopathy, which means DO NOT TOUCH ".
Merry Christmas to all. Hugs, Blessings and Love, Nancy
Oh Watts, it is such a bittersweet diagnosis, but at least you are now official. Nancy, I hope the new method works....I am sure the words do not touch Nancy's arm will spread fast!!!
I haven't had much time to post, we have been very busy at our store, and Mom has had a lot of Dr appointments to go to. Unfortunately, we are currently waiting on the results of a biopsy of some nodules that appeared on the back of her shoulder. The surgeon says it looks like metastases to the skin, but the CT scan showed nothing, should know something this afternoon or tomorrow. Please keep her in your prayers.
I promise to post once I know.
Merry Christmas! May the peace joy and wonder of this holiday season bless each of you.and may the new year bring the help and answers we are all praying for.
Love and the kind of hugs that don't hurt , to you all. Terri
Terri and Connie, you sure have my prayers as I wait with you. The waiting rots, but I'm praying for break-through moments of real joy even as you wait.
Watts, I'm glad your doctors got around to a diagnosis, but really sorry it's BP. How are you doing dealing with that news? Man, I hate this stuff!
Joining you in prayers for help and answers in this New Year, Terry
Wishing you all a bright and refreshing Christmas,Binney
Wishing you all a peaceful holiday season and only good news in 2010