radiation-induced brachial plexopathy
Comments
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hi shari,
lately, i feel like i'm raining on everybody's parade. last year i went to johns hopkins, to the only guy whose secretary said that he treated adults for bp. i specified that my bp came from radiation, not a trauma or accident, and they checked it out and said, come on. so we fly from chicago to baltimore and see this doc for maybe 2 minutes. his assistant already filled him in on the upteen pages i had to fill out first. the doc says, you have to make an app't to get a neurogram in philadelphia! nobody mentioned that that was the necessary next step, so we had to fly back home and then fly again to philadelphia.
they say there are only a few machines in the country that show the nerves this way, and it is a very new and sensitive test. i thought we're going to walk into a space age lab. it was a very crummy office in an even crummier neighborhood. the machine looks exactly like an mri machine and the exact same procedure takes place, noise and all. then they tell us these results have to be analyzed in california, it'll take weeks to get any kind of report.
many, many weeks later, after endless phone calls and emails, my results were described very briefly like this: the nerves are all matted together because of the radiation and there is nothing we can do surgically besides make it worse.
along around there i think i started the anti-depressants.
when i was hooked up only with the brachial plexopathy network, i did not go to the children's forum after the first time. the vast majority of this nerve surgery is for kids who are unfortunate enough to be born that way.....very often because of careless delivery. the other surgeries are for adults who can sometimes be helped, depending upon just what kind of injury they have. there is much discussion about doctors, and whether they will see anyone over 18. i looked some up myself and called and was always told no, we can't help you. only johns hopkins said, come on out
maybe you should ask if anyone there has ever dealt with radiation caused bp. i would hate to see you have the same experience i did. i was appalled at the lack of consideration i ran into. i think some docs just want to satisfy their curiosity and don't realize or care about raising false hope.
but shari, if you are going there anyway in oct, you may as well see them. just don't get your hopes up too high. i know it's hard not to.
on another note, let me say that i feel vindicated when you say that in 7 (seven!) years you have never run into anyone else with le. my kids think i must be exaggerating. hah! and no, i never took anything for the tingling and numbness. for the weakness you need a new arm. i am surprised that you still have that much feeling in your arm. mine is mostly numb and getting number. but i can identify with heavy. how do you lift it up, like when you get out of a car, or try to cut off a piece of tinfoil?
i hope i did not dampen your enthusiasm, but i felt i had to warn you about hoping for too much from these guys.
barbara-
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Shari, either I'm somewhere in the Twilight Zone, or else you just changed your screen name -- sure hope it's the name change and not my mind givng out completely!
I've been trying to sort out the information I've been receiving on BP and LE, but there's a lot of it and it's a lot to take in. First let me say that the LE therapists I've contacted agree that both RIF and BP are something they see fairly frequently (so where ARE these people?!), though the BP was more common a decade or more ago when they used cobalt radiation. Not so common now and pretty much restricted to those who receive two or more fields of rads, especially if they overlap.
As for the use of laser treatment, those I talked to consider that to be still a "fringe" treatment -- not thoroughly vetted by research for actual efficacy or possible long-term side effects. They made clear that radiation fibrosis is different from lymphostatic fibrosis (fibrosis caused by accumulated lymph fluid due to LE) or surgical scarring. So even if laser treatment were to be proven effective in treating LE and scar tissue from surgery, it would still not be proven to be safe in treating RIF. In other words, they weren't willing to say the laser treatment DID contribute to the BP, but they certainly supported the possibility and encouraged your warnings about it.
From the standpoint of getting help for the BP from treatment of the LE, here is what I've learned from them. I'm going to quote one of them directly, and though I don't want to use his name without his permission on this public forum, I'd be happy to let you know who he is and what his credentials are if you Private Message me.
Here's what he says: "BP sets the stage for dependency, lack of control, shoulder subluxation and other problems. If we can reduce the edema, we can decrease limb weight, offset dependent positions with compression and support, protect the arm better from harm and skin erosion and this alone makes a world of difference."
By "dependency" he means the arm hangs down and gets less movement and use than is normal. "Shoulder subluxation" means partial dislocation of the joint -- which is painful and further damaging to the nerves. What he's saying (and this is from a wealth of experience) is that it is possible and desirable not only to treat the LE, but to treat it so well that the swelling is reduced as much as it can possibly be. The complete reduction of swelling may well mean less pain, less on-going damage to the nerves, and an increased capacity to raise the arm enough to support it. That in turn will control the LE, so you've set up a cycle of improved control and confidence, instead of the present one of continuing damage and deterioration. BUT, both the men I talked to stressed that the therapist needs to be expert in treating BP. He's talking about really careful control of the LE too, being aggressive and creative about finding ways to get the swelling down and keep it that way.
Barbara, I know you like your therapist, and for all I know she's well experienced in treating BP. But according to your posts, your LE is not completely controlled. The opinion of these men is that is CAN be, and that in doing that you may find that you're more comfortable and more in charge of your life again. Shari, I don't remember if it was you or Sherry who was experiencing more tingling in fingers, but excellent LE control might also control that as well, since the weight of any extra fluid in the arm (especially when it's hanging down) is damaging to the nerves. With LE, there's as much as 30% more fluid in the tissue than is normal before any swelling is even noticable, so by the time there's visible swelling we're toting around a LOT of excess fluid.
Maybe you can see why that was difficult for me to sort out. I don't know your situations, so I have no idea how any of that hits you. I hope it's helpful, but it's not at all the complete cure we're all wishing for. Still, I think there's hope in it. Anything that lets us take back some of the control in our life is a very good thing.
Enough of all that. Barbara, I do have to cope with the curiosity of kids, and to tell you the truth I find their open interest much easier to handle than the fleeting, embarrassed glances of the adults. With young ones who ask about the garments I usually just say something like, "I like them. Do you?" When I'm bandaged, though, I tell them it doesn't hurt first, then follow that up with whatever settles their curiosity. Usually just knowing it doesn't hurt is all they really need. Older kids need better answers, but I never tell them more than they ask. "What happened to you?" gets the answer, "I had some surgery and now I need to wear these to get well."
I had one kid, about 8 or so, who persisted with questions (in a restaurant, no less!) so I told him I'd had a kind of cancer and the treatment was very hard and left me with a swollen arm, and this was a way to keep it from getting more swollen. He proceeded to tell me that he was going to be a scientist when he grew up, and he planned to find a cure for cancer. He said he'd found out that sharks never get cancer, so he was going to figure out just what it was about them that kept them safe, and then he'd make sure people had whatever-it-was too. I hope he does it!
Okay, having written a book-length post here I think I'd better quit. Sorry to run on!
Have a restful night!
Binney
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binney,
i am wildly impressed with the research you have done and the data you have come up with. i wonder if i could bore you death once more in order to see if any of it can apply to me.
i had the plexopathy developing very slowly over 5 years before the le. i know the bp did not show any outward sign of increased swelling up to that point, although i was having considerable trouble with hand and arm weakness. i have always had long slender hands and fingers, and i loved to show them off by wearing rings and bracelets. the same day as my infamous plane trip, when my hand first blew up, i was barely quick enough to get my ring off before i would have had to have it cut off. from that day on, i noticed that the arm was noticeably heavy. (and of ourse i never wore another ring or bracelet again.)
i feel i do have the le under good control, although i do need some drainage. i mean, i don't expect it to ever be normal, but i think maintaining it all day with a medi sleeve and a glove is as good as it can ever be. the arm actually looks normal; it's the hand that is always out of proportion and mangled-looking. the bp, however, continues its destructive growth pattern, and will probably not stop until my arm hangs like a piece of wood.
i do not think that excess fluid is my problem if we are talking about dealing with bp. the bp was there first, and the le just hopped on the wagon. my shoulder is starting to slant down, and i think it would be doing that if i had never developed le.
i respect the opinions of the docs you mention, but i fail to see how anyone with bp can elevate the arm, le or no le. i would just love to try it, but my elbow hasn't been able to bend for a year or so.
for me, bp is the dragon. my hand therapist is just that, a hand therapist. she said she has never seen anyone like me but she'll try. she just informed me that since the hand is not really improving, she cannot treat it anymore, but she can help me with my left hand, which is killing me from overwork.
my le therapist is mainly that. he has at least heard of bp, but can really not help me much with it. he consults other therapists about me, but so far has come up empty-handed, but hopeful. he keeps the lymph flowing along, and after an hour with him i can admire my hand for a day. that's about how long it looks like the other hand before it puffs up again.
this in depth and tedious review is because i would love to run it past your docs and see what they have to suggest. especially the part about having a therapist who is expert in bp. in what country or on what planet is such a therapist? i'll go!
i appreciate your desire to protect their privacy. do you think you could condense and run this past them? i am so impressed that you talked to them! i would too if i thought it would be ok with you and them.
let me know what you think.
barbara-
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Barbara, I'll be happy to run this by them. Give me a couple of days and I'll see what I can come up with. I'm also (God willing!) going to the National Lymphedema Network's Conference for Medical Professionals the last week of August, and I'll be looking for experience with and answers to this problem. (I'm not a professional myself,
just a patient -- I'm attending as a patient representative.)(((Hugs!))) in the meantime,
Binney
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binney,
you are one terrific lady! i swear i have learned more from this group than from any doctor or therapist in the last 5 years...and that includes the mayo clinic.
thank you so much for your time and your effort; i am so appreciative.
barbara-
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Barbara and all, hello,
Barbara, do you know how to send private messages on here? Click on my name and it will bring up a page for me. Up toward the upper right corner of that page it'll say, "Send member a private message." Click on that and there'll be a message window. If you'll send me your email (I think I used to have it but can't find it now
) I'll send you some pictures of possibly workable arm supports from an experienced therapist-friend that could help reduce your hand swelling AND support your arm from dragging on your shoulder.Sherri and Shari (or Erica or anyone else who might still be reading this thread) , if you'd like to see them too please feel free to PM me with your email and I'll forward them to you.
I have other people still to hear from. Don't know if any of this is workable, but all we can do is keep talking and see what ideas we can spark.
Hope everybody's having a good week and that it's a lot cooler where you are than it is here!
Hugs!
Binney
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Hello, Barbara!
I just got a private message from Sharylyn to tell us she's having trouble posting. When she tries to post she gets a message asking her to verify her email address, but doing that doesn't help. Very frustrated! But she wanted you to know she's still with us here and wants to keep in touch.
We'll work this out with the moderators shortly and she can get back to posting!
Have a delicious day!
Binney
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Yo, Sharalyn!
In case you're not able to receive your Personal Messages, I'm passing along to you these two messages, one from the moderators:
"First, you are a good friend to Sharalyn. Second, please ask her to check her personal email address for a message from breastcancer.org. She needs to verify her email address before she can post. Let me know if this doesn't work. Thanks,
Tami, moderator"
And one from the webmaster:
"Thank you for sharing your concern for Sharalyn and reporting this issue. I will reach out to her directly and do my best to help resolve the issue.
Best Regards,
Niki"I'm able to receive your Personal Messages, Sharalyn, but I'm not sure if you're receiving mine, so I'm posting these responses here, along with a friendly wave.
Hope you're back posting in double-jig time!Binney
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Sharalyn and Barbara and Sherri! I miss you! Hope you're all well.
My email is
bbnd4
at
yahoo
dot
com
Hope to hear from you,
Binney
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binney? is this you? i have been clicking around and getting nowhere. talk about your dingbats!
i have been without my computer for A WEEK! and that is why you haven't heard a peep out of me. the guy just left after giving me a new modum. he also left me with this tiny print. i don't know why i can't seem to learn this stuff that every 10 year old seems to understand.
my email address is: ernestkoehler@comcast.net. so if you get this, you can send me stuff. good. of course if you don't get this, how will i know?
as an aside here, how about if we re-name sharri and sherry louise and gertrude? that way we can't confuse them all the time. let me know if you want to vote on it.
will get back to you guys soon. i have a ton of emails after a week, but i wanted to get to you first.
barbara-
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Hi, ladies. I'm ususally on the lymphedema or IDC forum. lately I've been looking into laser therapy for lymphedema (LE). I found your discussions by searching under "laser" and "lymphedema." YIKES!!! I'm not going to try the laser now if it could cause BP. If you would consider going to the Lymphedema forum and post under the discussion about Laser Therapy that would be great. They are all jazzed up about it right now.
Needless to say, I'm shocked to read about your experiences with BP. My heart goes out to all of you. And, those with LE and BP - too much - I'm so sorry. I'm glad you've found this site and I'm glad I found your discussion.
I had never heard of BP or LE being caused by radiation and I'm wondering why neither are listed under possible side effects on this website??? How can we make educated decisions about our treatment if we don't have all of the facts?
I wish that you would go to other areas of the forums and talk about this or at least lead others to this discussion. I think there should be a forum for Radiation Treatment and one for BP - there are so many issues that could be discussed there.
I think 2% is a lot by the way.
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I haven't been on these boards for a long time and didn't realize that my initial post actually got responses. I'm sad to hear that there are more of us out here with this complication but glad to have informed women at my side. It took about 6 months since my initial symptoms for my medical team to agree that I have radiation induced brachial plexopathy as opposed to brachial sheath mets. I did do a 3 month trial of vitamin E and trental but it didn't really do much. I certainly didn't see improvement. The motor problems didn't get worse but my sensory problems are more severe. There's no way to say whether it prevented further movement to paralysis. The studies I've seen seem to suggest that if it will progress to total paralysis it does so within the first 6 months of symptoms. I seem to have stalled...my MRI results show no improvement but no worsening either. My motor weakness is the same in my hand. The pain (burning) and numbness drive me to distraction. I do not use lyrica because I am an intermediate metabolizer of tamoxifen and don't want to risk that lyrica would inhibit my tamoxifen benefit. The hand symptoms have really made it difficult for me to work and sleep. I have mild lymphedema in my affected hand that started about 2-3 months after the symptoms of the brachial plexopathy. I haven't sought treatment for that yet as I have been overwhelmed with other cancer issues. Hearing the comments above about how they interact I think I need to get myself to a lymphedema specialist as well. I haven't had the energy for more doctors visits but obviously I need to get cracking. I have a follow-up with my rad onc next week and I'll let you know if any more suggestions. Hope you are all doing ok. By the way, I use a speech recognition software for typing as I also can't type anymore with my right hand. It is slow and frustrating but gets easier with time.
Best, Erica
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hi, erica!
boy, am i happy to hear from you again! i know how easy it is to get so discouraged that you figure, what the heck, and you stop tuning in. i think you and i are the only ones, in this forum, at least, who started with bp, and then developed le afterwards.
you have had a lot more surgery and chemo than i, and i am so sorry for all that you have gone through. but the frustration with the loss of the use of your right hand fits my situation like a glove....with no pun intended here. as you can see by my use of lower case here, i have not been able to use my right hand for typing or anything else, for that matter, for a long time. i cannot even tell you how long, because the bp crept up on me so slowly, over so many years, that it is hard to say.
for anywhere from say, 24 or 25 years post radiation, which was not cobalt, so don't let them kid you, i was symptom free. i think. the first clue was my handwriting, which was getting sloppy. i figured it was arthritis or something, and my rad onc was only too happy to agree. i can map the progress via my grandchildren. my daughter had me caring for my now 6 year old 3 days a week when he was a newborn. i noticed no problem. i could carry, change and feed him easily. but i did notice that i was having trouble lifting his 2 year old cousin. again, i attributed it to natural causes, although i did start to question my doctors. i was poo-pood away.
i could open some jars and containers, but not others. i started to avoid side zippers, but could still handle front ones. i could use a knife on soft vegetables, but not hard ones. and i started to order fish in restaurants instead of steak because i was afraid of making a mess. and still my rad onc assured me it couldn't be the radiation. 3 years after my 6 year old was born, my first granddaughter was born, and.....i could not lift that 7 pound infant up in my arms. my son put her in my arms as i sat down and held a bottle for her. i had to ask him to take the bottle because my hand was trembling so, i was afraid i would drop it on her. that was when i finally decided to see a neurologist.
he was the one who told me i had bp. i had never heard the term and had no idea what he was talking about. but, the trouble with these neuro-docs is that they start hunting around, looking for elephants when they see rabbit tracks. it took another year of tests and doctors and arguing with my rad onc to confirm what was obvious. by then i had my second precious granddaughter, who i would only hold in my left arm, sitting down, with one of my kids standing guard.
in case you have not plowed back into all my wordy posts here, let me tell you how the le showed up. we fly a lot. we have one daughter in california and a son in arizona, who was still in texas a year ago. just after a flight to texas last august, my hand blew up right before my eyes before we even reached his house. that was my introduction to lymphedema. i had thought, incorrectly, that since i had had only a stage one tumor, with only 8 lymph nodes removed that were all clear, that all i had to do was not to allow any needles or blood-pressure in that arm, and just 'be careful' in general. which i was. i did not know that anyone who has ever had radiation or surgery is always, always, at risk for lymphedema.
there's a great deal of misinformation out there, like, if you're going get bp it will show up in 6 months. poo on that. how's 25 years? and there's even more non-information, stuff they don't even tell you. and this bp happens often enough, to so many women who had their radiation long after i did, that they cannot insist that now it's 'different.' poo on that too. what gets me is that no one is looking into this. i tried that trental and vitamin e thing a few years ago, also with no result. i think i was on it for 6 months, and the plexopathy continued at the same rate.
when i went back to boston last year to see my old rad onc, i really chewed him out. he knew all about our kids, when they married, where they lived, etc. when i yowled why didn't he warn me about flying, he said he didn't think that would happen, and he was really, very, very sorry. actually, i think he was. i will never understand his thinking, but i believe he was sorry. he was close to tears.
all of which leaves me nowhere, right where you are, with 2 permanent, disabling, ugly conditions, one of which can be somewhat controlled, and the other that no one has any idea how to control. this is tough company, honey, but it's company.
yes, you do need an le therapist, because you can and should keep the lymph under control in order to understand which condition is causing what symptom. my le is also called mild to moderate, with the main problem being in the hand. if it wasn't for the paralysis, we could almost 'pass' for normal!
one little hint before i rest my 5 good fingers and you rest your eyes; black and decker puts out a jar opener that really works. it's big, but it's worth it, i think. you only need one hand to work it. i don't remember exactly what they call it, but it's around $50, and worth every penny.
hang in there, erica, and keep talking!
barbara-
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Hello, all!
(Shari, are you back on here yet? Sure hope so, but I know you can read even if you can't post, so I'll post this information here, and please feel free to email me too.)
Before I left last week for the LE conference in San Diego I had found a study done by Dr. Shimon Rochkind in Israel regarding laser treatment of BP. The title is listed in the email exchange below, so you can google it, or if you can't find it I'll be happy to go locate it and post it here (it'll have to be later, though -- I'm in the middle of an enormous pile of laundry from the trip!)
Anyhow, with Barbara in mind because she's told us (however jokingly I don't know
) that she'd go anywhere in the world to get help for her BP, I emailed Dr. Rochkind this note:"Dear Dr. Rochkind,
I have been looking for answers for a friend who has been suffering from radiation-induced brachial plexopathy for several years. I found your article, Laser Phototherapy (780 nm), a New Modality in Treatment of Long-Term Incomplete Peripheral Nerve Injury: A Randomized Double-Blind Placebo-Controlled Study, and I'm wondering if you have any suggestions for ways my friend might be successfully treated for her condition. She is willing to go anywhere for help.
Thank you for the work you do."Just today he sent me this email reply:
"Thank for referring to me with the case of your friend.
According to provided data, your friend suffers from post radiated brachial plexus injury. The result of neurological damage in these cases is slow growth of scar tissue resulting from radiation. The treatment of patient who has slow progressive neurological deficits and pain is microsurgical release and neurolysis of the brachial plexus. From my personal experience with similar cases the results of the treatment in most cases is successful.
In these specific cases I recommend microsurgery and not laser treatment.
If your friend wishes to be treated in Israel he should contact me directly.
With best regards,
Dr. Shimon Rochkind
Specialist in Neurosurgery & Microsurgery
Director, Division of Peripheral Nerve Reconstruction
Tel Aviv Sourasky Medical Center
Tel Aviv University, Israel
Member, Peripheral Nerve Committee, WFNS
Senior Editor, Photomedicine & Laser Surgery"If any of you would like to communicate directly with him, please let me know and I'll send you his email address. He may have more research he can share with you, and other information that would help us understand what the surgery involves, how proven it is, and whether or not there's anyone here in the States who might be doing it as well. I certainly can't offer any personal recommendation because this is well out of my knowledge area, but if anyone's seriously interested I'll try and ask around among the LE docs I know and see what they can tell me about this. Dr. Shimon's name was recommended to me by Dr. Neil Piller in Australia, who is a well-respected doctor and researcher into laser use, but clearly Dr. Shimon sees other options in this situation, and they may be worth exploring.
The information I could gather at the LE conference was not encouraging -- radiation-induced BP is obviously baffling to them. There were a couple of products I thought might be helpful for management, but not for real help, and I'll post about them as soon as I can catch up on the laundry!
I still have some email questions out to one of the presenters at the conference that I didn't manage to button-hole in person, and I'll let you know what she has to say when I hear from her. If anyone looks into Dr. Shimon's proposal or knows more about it, please do post and let us know.
Whew! Glad to be back. Hugs all around!
Binney
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welcome back, binney!
it sounds like you had a very interesting trip. once again, i cannot believe how much trouble you have gone to to help my specific situation. many, many thanks, and i hope i can do something wonderful for you too someday.
now, you are not going to believe this one....lord, it's a small world...but i wrote to dr. rochland about 2 years ago! i don't remember how i got his name, but with my internet skills it probably came to me in my sleep. at that time, i did not yet have le, just the bp. he wrote back a very nice, very sympathetic letter, saying that at this time, he did not know of anything that could help me.
somehow, i mislaid his letter....probably chewed it up in despair...but i found a copy of the letter i wrote to him! sure enough, same name, and same address!
so. this time, i sent the paragraph you quoted to me to my radiation doc, who i should see soon. i asked him to look into it for me and see what he could find out about the treatment and the results so far. he will get such info much faster and more throughly than i can, of course, so i will be better prepared to talk to dr. rochland. i can't help but wonder if there has actually been a breakthrough in the last 2 years. still, how can they take a knife to an arm with le?
i can talk myself into or out of almost anything. time to go back to the easy mental challenges of the political forums. man, can they talk!
thanks so much again,
barbara-
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Actually, Barbara, I DO believe it!
You have covered all the bases, to be sure, so it comes as no surprise that you've also been communicating with Israel and beyond. Love it!Here's a thought that I'll just throw out here even though it likely has no relevance. Still, it struck me when I heard it, so I'll pass it on raw to all of you. I attended a round-table discussion with a young surgeon who is just beginning to perform lymph node transplant surgery in the US. I was completely unimpressed with the woman, so I'm not recommending her to anyone (in fact, I think she's dangerous -- careless). BUT, in describing her procedure she said that as preparation for the transplant of groin nodes to the axilla, she removes the scar, radiation and LE fibrosis from the area. When another plastic surgeon asked her how she did that, she said she could see it, and she was able very carefully to scrape it away. I had never heard of that before, but this is microsurgery and it's a fairly new procedure, so perhaps it has something to do with Dr. Rochland's information switch.
At the conference there was a huge exhibit hall where LE product venders set up shop, and some items I noted that might (or might not!) be useful to you, so I'll pass along my paltry findings and hope some, at least, will strike a chord with you.
First, magnetic sew-on "buttons." These are small magnets with four holes at the edges so they can be sewn in place under a regular botton. They're strong enough to keep our clothes in place even through a big sneeze
and they're extremely easy to manage. They're available (and there's a picture) at www.sansu.ca, where they cost $10/Canadian for a set of 6. Which seems mighty steep to me, so I'm ordering one set and hope to be able to determine who makes them and if they can be ordered directly more reasonably. (Let's hope so!) Actually, while you're there do take a look at the purse they make, which has a fabric loop sewn onto the back so you can put your arm into it, sort of like a sling only a whole lot more attractive!If donning sleeves is a problem, High Desert Pharmaceutics makes a liquid called CompressionAssist that you can put on your arm to make it satiny-smooth so the sleeve slides on easily. They discovered this slip-on ease accidentally because the stuff contains something used to treat slow-healing skin wounds in LE patients, and they found it really easy to get the garments on when they were being treated. It's hypo-allergenic, non-greasy, and it's a skin lubricant as well. It doesn't harm garment fabric, either. Maybe worth a try. They're at www.highdesertpharma.com, and since they were giving out neat little samples, I'd try asking them to send you a sample before ordering.
JoviPak had a bunch of sample night garments there. They make them all special-order, so there were lots of different ideas on display. One was a night vest (which is like the ones I use for my chest/back/side LE) so I was looking at it closely. It was longer than the one I wear, with a fabric panel (just a single piece of fabric, not quilted like the rest of the vest) that extended well below the waist, so it would keep my tummy warm at night -- nice! No more icy tummy!
But it also had a fabric loop attached a little below waist level that was six or seven inches wide. Couldn't figure that one out, so I asked the gal working there. "Oh, that was a special order," she said, "for a woman with a flaccid arm." Of course I asked her if she meant BP, but she had no idea. So I just pass that along anyway, for whatever it's worth.And finally (and Barbara has probably tried this one too!) there's Kinesio taping. I brought home their advertising DVD for my therapist, but when I watched it yesterday I was surprised to hear that among its many uses was both "pain relief" and, more likely, "stabilizing subluxed joints." So I have an email in to them asking for information about the use of Kinesio tape to stabilize shoulders in BP. I'll let you know what they have to say. If that would turn out to be workable for stabilization, then there's another company that sells the tape already slit and backed with peel-off paper for easy application.
That's all I can think of right now. Hope everybody's well, and since I don't know where you all live, I hope no one's in the path of all those hurricanes swirling across the Atlantic at us!
Be well, all!
Binney0 -
Just wanted to post this strange piece of information here in case it might help anyone who happens along. As I mentioned in the last post, I emailed the Kinesio tape folks about the possibility of using it for a shoulder affected by radiation-induced BP, and received this reply. As he was obviously assuming I'm a therapist, not a mere patient
, it's written in dense "medicalese" that is well beyond my comprehension. But perhaps it would be useful to a therapist in treating this, so I'll post it as is and hope it helps someone:"Please forgive the delay. I just received this response from one of our instructors. She mentions our database. I am not sure if you use this but if not, please see our website for membership to access this.
From Instructor:
On the data base, tapings can be found to decrease pectoralis muscle contraction,and improve cervical and thoracic extension. Marinating neutral cervical spine and upper quarter posture is key to reducing musculoskeletal complications. After radiation cycle is completed and with physician permission, fascial correction taping can be used to reduce the fibrotic tension in the tissue. One can also apply the tape directly over the plexus from "one end to the other" or over inflamed portions of the plexus per the data base (0138-NE-AR). After a professional assessment of pain patterns and flexibility of the tissues, choose about 3 applications. Remember that the skin is the largest organ of the body. You do not want to overwhelm the patient with tape.
Hope this helps.
Jason Bates
Education Coordinator
Office Phone: (309) 932-2777
Cell Phone: (309) 883-1214
Fax: (309) 932-2737
jbates@kinesiotaping.com"0 -
Hi everybody!! I am hoping this works. I finally got a responce from Niki at org. support with instructions and so here we go again. Thank you Bonnie!!!! I am not going to write much this time because I don't know if I will really post. so, will write more today after I get back home from PT if I can REALLY post! Love you all!
Shari
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OMG...am I really here? Anyway it is good to be back!! Hmmmmm this Kinesio tape sounds interesting that is written about in the former post. Has anyone tried it? Since I am 10 years post radiation and my scarring is "old as the hills" but, of course, just keeps creeping along causing more damage, I'm not so sure that I would be a candidate. Sure sounds good for the "newcomers" to check out though. I know, another club we didn't want to join.
This doctor from Ohio sounds like a total flake to me, especially when she gives instructions to people she knows nothing about and what tests they have had and what they haven't. Just FYI, I have had all the tests and my BP is definitely from radiation scarring. I had a boost at the end of my RT that probably caused the more severe damage. My oncologist, 10 years later, says I probably didn't need the boost in the first place but can't go back and I am alive!!! Does this woman actually think that any doctor, worth his/her "grain if salt" diagnose BP w/o the proper testing??? Okay, I'm over her. I am going to see a doctor in Cinn. Ohio on the 14th of Oct. No cutting please, information only. I am hoping that because this is his specialty, he will be up on all the current and may I add accurate info and again I say hopefully. This is a sport's med grp. who takes care of Cinn. Bengals and have an exellent reputation. This doctor I am seeing is with the grp. but specializes in BP...mostly babies and accident victims but has been seeing RBP patients too. In my case, the LE really complicates matters which has been a part of me for 8 years now. You'd think that one would get used to this strangling sleeve but there are times when I have to take it off and just throw it! I'm sure you can relate. I sleep with a Jobst at night.
Well girls, that's about all tye typing my right hand can do right now. I hope everybody is having a nice day. Weather great here in SoCal....gonna walk the dog now.
Shari
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hey, shari!
welcome back! yes, i agree with your suspicions about the kinesio tape stuff; i tried it on my right arm some time ago. my therapist at that time thought it was worth a shot, and it made my arm and hand feel nice and snug, until it starts to unravel a day or two later. my scarring has been around longer than your scarring....n'yaa! n'yaa!...but it is worth a shot. you can buy a big roll of it from one of those helpful gadgets magazines.
and i agree with you about the ohio doctor too. why would she think that people like us, who have had bp for years, wouldn't have had all the proper testing long ago? there is something about doctors that makes them look for other causes when the real cause is right under their noses. i think it may be because when they can't fix it, they look for something they can fix. that is exactly what happened to me at mayo; they tested for everything known to exist and were more depressed than i was when they came up with nothing but radiation caused scarring, which no one could help.
by now, i am getting excited about your upcoming visit to ohio. i am beginning to hope that there really is something us lymphers can do about this creeping paralysis without having to risk making the le worse. be sure to keep us informed.
weather here in the midwest is gorgeous too, but many of our neighboring suburbs are still under water. we were very fortunate. and say, bonnie, you actually went outside the other day in scottsdale? temperarature drop below 100? wow, a cool spell. this is my son's second year in az, and he is still adjusting. he says the heat doesn't matter once it's over 100; it's all the same.
ladies, stay well, and hang in there,
barbara-
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Hello Ladies,
I've just come across your forum and have tried to read as many posts as I can in the time I have available right now. I just thought I would let you know that we have exactly the same problems here (UK) as you seem to have, especially when it comes to getting recognition and information.
Several years ago, when one or two PB sufferers made 'acidental' contact with each other they put the word out and discovered they were not alone. They went on to form an organisation called R.A.G.E. (Radiotherapy Action Group Exposure) to unite current sufferers, try to get improved treatment for pre-therapy patients, and to help with research for current sufferers (we too are currently looking into the Paris treatment). We now get a quarterly newsletter and an annual AGM in London.
I guess our organisation is similar to your forum except that we are paper based as opposed to internet and we have a (minimal [£5]) annual subscription fee. I have personally found great comfort in 'belonging' and have benefitted from their advice and assistance.
Should anyone wish to make contact, Jean McFarlane is the Publicity Officer and can be contacted on jeanmcfarlane@waitrose.com
Good luck to you all. I'll try to check back here regularly to see how you're doing.
Love & Hugs,
Kathy
P.S. Just noticed up the top that this forum is for young (under 40) people. Please note that I am not (being 60+) and most of RAGE members are 'mature'. Just thought you should know.
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I've been reading a lot about iodine supplements for fibrocystic breast tissue and BC prevention. I've seen reference to iodine being given to people accidently exposed to radiation. I'm wondering about supplementation for patients who have received radiation treatment. Has anyone been told that iodine might help the brachial plexopathy?
I wish there was a forum for BP. It is an important topic and, as stated above, there are many people who might benefit from this information who are over 40.
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Ah, rrs, yeah! Just this morning I send a PM to moderators Tami and Melissa to ask that this thread be moved to a new forum of its own (I suggested putting it under the "Connecting with Others Who Have a Similar Diagnosis" section). If anyone else wants to add their request you can send them a private message by clicking on their names in the very last forum at the bottom of the list. Or just start a post in that section asking for a new forum.
Hope that works out, as I agree it'd be great to have an on-line "home" for RIBP.
Shari, so glad you're posting again! Hi, Barbara, yeah, actually hit 98 degrees, tops. Wow! Practically had to break out the sweaters!
Kathy, hello and welcome! What a great connection -- thanks so much for telling us about RAGE (love the name!
) Have any of your women heard of or gone to Dr. Rochkind in Israel? What news from the Paris treatment -- anyone there done it?Shari, prayers for your coming consultation. Hope you have room in your tote for all of us, 'cuz we're planning on being there with you.
Uh, true confession time: I haven't seen "under 40" in a good many years myself.
Definitely need another forum!Hugs all around!
Binney0 -
Hello again. Just received this from Tami and Melissa:
"Hi Binney,
Thank you for your message. Unfortunately we are not able to create any new forums at this time; however, I did make the BP thread sticky, which means that it will stay at the top of the young women with breast cancer forum.Thank you for your understanding. Let us know if you have any questions.
Tami, moderator"So, here we are, "stickied" to the top, so at least our thread won't keep sliding to the bottom of the forum. But I asked her if she could "stickie" it instead onto the top of the LE forum, where age won't be a factor. What do you all think about that arrangement?
Be well!
Binney0 -
Binney - I don't have BP (but I'm interested) so my vote here probably shouldn't count. I think it would be a good idea to post under the LE section if it cannot be a new forum. I don't know why they cannot create new forums - This is a side effect of radiation, just like lymphedema. I asked for a "dense breast tissue" forum but they were unable to do that and suggested a "stickie" - it was stuck for a while and then went away for some reason. Off topic - I think dense tissue is a BC factor - if you search on this discussion board for it - it is all over the place.
Good luck with getting this information out there.
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Hello All!
Ever since I found this site, I feel relieved with the support and am always glad to read everyone's imput. My gosh Binney, you never cease to amaze me with your information. You are always on top of things! I can't believe that this site is for "young, under 40 women". If I would have known that, I probably wouldn't have gotten involved but am so glad I didn't know...not that I wouldn't mix but would have thought the site was strictly for the very young and I wasn't a candidate....anyway...so glad I didn't know and now know all of you! I just had my 62nd b-day last week. Don't feel that age at all except for all this LE and BP crapola...and it sure can drag ya down. It's like what came first here the chicken or the egg or better yet what is the chicken and what is the egg?? I read a post last week that we need to go on Oprah..in other words "alert the media" re LE and BP. But...today I saw a woman on the news that went into the hosp. to have a baby, got MERSA and lost both arms and both legs. That sure puts me back into humble mode!!!! and I don't feel so bad. Anyway, why does this site promote the under 40 gals...do you think it deters others that are over 40 from partipating? Okay, next thing, the Iodine was interesting but doesn't make a lot of sense unless it is able to somehow break up scar tissue...but always intersting in hearing more. Also interested in the Paris research and I know we would all like to hear from someone who has seen Dr. Rochkind. And I also welcome Kathy Saul from the UK. Always great to get info on what's happening over there and make a connection. Barbara....always good to read your post. Where in the midwest do you live?? We're definitely in the same boat with both these sneaky little creatures of the ramification nature. Yes...too bad that we can't get a separate thread to entice more BP sufferers but Binney even though I realize you don't have it, you have been so instrumental in keeping this site interesting and alive. Do you guys sleep with a Jovi-Pak? It has really helped me by keeping the LE from getting out of control. The Jovi is also good when you fly.
My LE therapist thinks that seeing this doctor in Cinn. could be promising as far as nerve implant and/or releasing the nerves from entrapment utilizing laser surgery microscopically but with me, the whole BP triangle seems to be involved. Bummer! We'll see! Two more weeks~
Big Hugs...Shari
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Hi, Shari,
I take it that's a "yes" to asking Tami to move us to the LE board. I'll do that this morning.
When Erica started this thread a long time ago she posted it on several boards besides this one, but this is the one that others started posting on, so this is where it stuck. (Where BC is concerned, being under 40 can make a difference to the treatment plan, and these are the gals that usually have kids still at home, so they have that to share, along with other "younger" issues.)I think I mentioned that it was JoviPak that came up with that "sling" loop on a night garment for a "flaccid arm." They're an inventive group. I use a night garment made by Solaris-Tribute. (The advantage is you can put it in the dryer.) There's another company that makes night garments too, called Telesto-Medtech. It's a new company, but the owner is the engineer who invented directional stitching and worked with both Jovi and Solaris, so he's an old hand at this. His garments are much less expensive, if you're paying for these out-of-pocket. His wife had LE (he lost her to Stage IV BC), and he has a real heart for those of us who deal with it. (This is not an ad -- just information. I'm a firm believer in comparison shopping!) I sometimes wear my Solaris during the day just because it's more comfortable. I have an oversleeve for added compression that I wear when I'm having a flare-up, or you can wrap over it with short-stretch for added control (but for me the whole idea of the night sleeve is to avoid wrapping
) Mine have zippers from the wrist to a few inches below the axilla so they're easy on (and off -- night being not just for sleeping, after all!)Sorry if I'm repeating myself here. I tend to lose track. How long do we get to claim chemo-brain? Is that a life-time perogative?
(I hope, I hope!) Shari, joyful and hopeful prayers for that consultation in Cinncinnati -- take good notes!
Be well!
Binney0 -
binney, shari, et al,
so much info, and so little time to respond. off to boston tomorrow am. back fri nite. maybe i can pry something out of my doc...but after i tranquilize myself sufficiently to endure that breast mri, i may not make too much sense.
can't believe we attracted a lady from RAGE. i found it a year or so ago and get their newsletter. such sad stories. they have very little recourse over there. i don't know how they stay so upbeat and chipper.
i don't quite follow you on where we should all go on our threads or whatever, but wherever you go, take me with you or i'll be lost forever in cyberspace. please don't start another thread for women over 40...also known as old broads...those "kids" can learn plenty from us as well as we can learn from them. i am sure i am old enough to be erica's mother and then some. where does she go, anyway?
as far as the bp sufferers go, shari, there is a site for them, but nobody there was damaged by radiation. i would love to be able to find some more of us and bring them onto this site so we are not all spread out, but i don't know how to find them.
binney, must discuss your new sleeve when i get back. gotta run
XXXXX and OOOOO,
barbara-
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Wow! Thinking of you Barbara! It'll be good! (Well, at least it'll be good to be done with...)
Don't worry about getting lost if the thread gets moved, Barbara -- we'll come looking for you if you don't show up here! The new location will be for women of ALL ages, so we'll have the best of all worlds. Or at least of all ages.
(Actually, you did post over on the LE board not long ago, so you've already been there -- not too far away.)Our UK sisters have always been the pros at staying upbeat and chipper, haven't they? Hats off to them!
Prayers for only good reports, Barbara,
Binney0 -
Good morning all,
Binney, I printed out your info on the Jovi Pak sling. I am definitely going to check that out! Great info and thank you!
Are we on another board now? Should I try and find it or will you send us the address? I'm feeling good about this one because it is working but will follow you guys anywhere! Too bad that I missed Barbara cause I wanted to tell her that I have been getting breast MRI's for years...about 8 to be exact. I always had to take Xanax before the test because I couldn't deal with the anxiety. But afterward, getting good reports always made me feel better. I don't get them anymore because I am 10 years post and had triple negative which has proven not to come back after 3 years. I get digital mamos now which are much more telling than the old way of doing things where they missed mine. If I hadn't accidently felt the lump myself (about 5 months after the mammogram), I wouldn't be here at all because triple negative is very aggressive and has a high rate of return withingn the first 3 years....but after that research says that you are clean. Whew! Research wasn't finalized until last year so I worried about every little ache and pain until then. Hey, I wouldn't be here to complain about my LE and BP. I do count my blessings and accept what is....is. Of course, want to do all the right things and keep up on the latest....thanx to you Binney. You've been more up on things than any doctor or therapist that I know. Were you in the field of medicine or research? Yes....those are the doctors I am seeing in Cinncy. My feeling is that if they work on infants with the tiniest of nerves...then an adult would be even better. As we know though with the scar tissue involved, I am not getting my hopes up. I have a "we'll see" attitide. I want to check out the other address you sent too Binney.
Hope you have a good weekend. We are having a little Pres. candidate TV debate gathering so must get ready for that.
Hope and prayers for Barbara too! And...hope you get a chance to enjoy the color up there in that neck of the woods.
Shari
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