radiation-induced brachial plexopathy
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My LE therapist thinks that the numbness/tingling in my arm, scapular area, and cheek on "bad booby" side needs to be looked at by an MD b/c she thinks we should rule out RIBP.
From what I've read here, it looks like folks diagnosed with this have muscular weakness and/or pain/tingling in their hand...none of which I have. Anyone ever been diagnosed with this have only sensory issues in the arm or back of shoulder? My LE therapist is very experienced, and I trust her, but not sure whether to call my med. onc, surgical onc., or primary care doc?
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Yes. I have burning pain pretty much 24/7. Sometimes I feel like electricity is pulsing through the tips of my fingers. I have to relax and remember the intense pain will eventually fade. I block it out whenever I can.
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Wanted to share some YouTube video posted by Memorial Sloan Kettering Cancer Center, featuring Dr Michael Stubblefield. He is describing Radiation Induced Fibrosis, and Radiation Induced Brachial Plexopathy issues for Hodgkins Disease, Head & Neck Cancers, Breast Cancers, and Sarcoma survivors. Very well done - you'll find these to be easy to understand. Dr Stubblefield is who I went to specifically see in NYC at MSKCC in August 2011. My previous installments in this forum were focused on that 2 week visit with him and his PT/OT staff. This is good stuff!
http://www.youtube.com/watch?v=xumJojH94Ts&feature=youtube_gdata_player
http://www.youtube.com/watch?v=LvZJKNtNXXc&feature=youtube_gdata_player
http://www.youtube.com/watch?v=cp5PGCUYRdE&feature=youtube_gdata_player
http://www.youtube.com/watch?v=dczzQxAaLYQ&feature=youtube_gdata_player
Say Strong,
Cindy0 -
Thanks Cindy!
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Cindy, it's good to hear from you. Thanks for all the research -- really good to see these things talked about.
Be well,
Binney0 -
The veins of my left hand, especially in my thumb and fore finger burn. It is always worse when a storm is coming.
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I was diagnosed with RIBP 8 or so years ago, by a reputable neuro-oncologist. I have lymphedema as well. I am dealing with continuous pain,swelling and range of motion issues, plus my right hand is turning backwards. I began an aerobics class at my local Y, and I love it. But, my right arm is goes whereever it wants to, and I am keeping my right shoulder pretty stiff to keep it close to me. If I don't keep my shoulder tight, my right arm swings out and gives me a good jolt. I am considering buying a sling and wearing it during aerobics. I'm wondering if I could hurt my shoulder. This sucks. Any advice?
I see my feldenkrais practioner every month, and she helps me a lot. But there is no way around it. RIBP is with me 24/7.
Ronimom
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Ronimom, bummer on all the rotten issues you're having to deal with! For keeping your arm close, how about a support like this that doesn't hang from your shoulder? I used to use one like this when my arthritis flared:
http://www.braceshop.com/productcart/pc/ProCare-Elastic-Shoulder-Immobilizer-51p618.htm
Your wonderful Feldenkrais therapist was going to write a couple of paragraphs for our StepUp-SpeakOut page about using Feldenknais to help with RIBP -- might you remind her about it? I'd still love to include it. Thanks!
Gentle hugs,
Binney0 -
Hello, all,
I've been meaning to post here about this cut-to-fit Farrow arm wrap compression sleeve that you can put on with one hand. It's here:
https://www.farrowmedical.com/index.php?q=node/656
There are so many new lymphedema products competing now that sometimes they actually come up with things that help?
I sure miss hearing from all of you and hope many more will "check in" and let us know how you're doing. Hugs!
Binney0 -
Binney, that looks like a really neat idea. (One my DH wondered about a couple of years ago.) You folks seem so much ahead of us in LE products. When is Canada going to catch up?
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Hi Ladies,
I haven't posted here for a while, partly because we cannot seem to "send." Somebody zip me back and tell me if this comes through.
Thanks,
Barbara-
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BarbaraEllen, yes! How are you? Would love to hear!
Binney0 -
Hi Everybody,
It's me again, hoping this reply will go through too. I don't know what is more aggravating lately, the RIBP, the struggle I have buying/putting on clothes, bathtub problem which is new, or this blankety-blank computer. The first 3 probably have no solution, but I can warn you all about the last. Ladies, do not change carriers without finding out what else you will be changing. Without going into detail, we changed from comcast to ATT, told it was very simple, and then found out they had to rewire, drill holes, and tried to change our email which we are still fighting about. Had we known about any of this we would never have changed. They are all bad,so you may as well stay where you are.
My RIBP is still advancing, slowly but inexoribly, and is starting to affect my shoulder. I feel slanted sometimes when I am walking and still quite unbalanced. I am always afraid of falling. I did try trental and vitamin E for about a year a long time ago, when I still had some use of my hand, but for me it did nothing. I had a lot of numbness and tingling then, and now I just feel nothing but weight. Sometimes, however, I do get a moment or two of an electric shock sensation in my fingers, but that is all I feel.
The lymphedema is behaving itself, still light to middling, and I don't use a glove during the day. I still hate wearing only long sleeves, but the RIBP has deformed my hand and arm so much.......my hand bends backward too and the arm cannot move at the elbow......that I wouldn't wear short sleeves anyway.
There is more, but not today. On our way to see Capital Steps and dinner with friends. That should perk me up for at least 8 hours.
Love to all,
Barbara-
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Okay, I'm back. Ronimom, your situation sounds like the closest to mine, except for the pain. I am so sorry for those of you must endure constant pain. I feel stunned enough when I get an occasional shock in my fingers. I take note of what you take to ease it, wondering if it will take over my life someday too. I do not have a high pain tolerance.
I dfon't know if anyone's bad hand/arm is as useless as mine. Therapists tell me to use it as an "paper weight" when I haqve to hold one end of something tightly, but even though it feels like a tree limb hanging down, it slides right off anything I try to lay it on. Anybody have any suggestions for dealing with it in a public washroom?
It hasn't been easy for me to shop for clothing, particularly overhead tops for several years now, but lately it has become just about impossible. I have to take my husband with me, of course, and I am grateful to have him. But getting permission to take him in the changing room with me is another story. So I often take home 2 sizes of something and wind up taking one or both of them back. At home by myself, I have to sit on the floor to get my arm into a sleeve. Anybody have any suggestions for this either?
I am always interested in any new developments in lymphedema, but most of it does not apply to me, except that interesting velcro sleeve you can put on by yourself, Binney. Thank you for showing it; anything that will make me feel more independent is a good thing. I just wish there was half as much helpful information about RIBP.
Ronimom, I love that you can jump around in an arobics class! I did not like a sling that puts pressure on the shoulder, but you should try it. You may be able to tolerate it better than I.
Oh, and anybody who can tell me the best way of getting out of a narrow bathtub with one hand, and a grab bar, let me know. I always disliked showers, and now I am really afraid of falling in one...how can you handle the soap?...
Everybody, feel good, and keep talking,
Barbars-
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Barbara, hello, so good to hear from you!
If all those dilemmas weren't so disheartening they'd be interesting.
I sure hope others will be along with their experience and suggestions. We need each other.The only thing I can think of is the shower, which is much safer with a shower chair. They come with or without a supportive back, and they have strategic holes in them so soapy water can flow off you easily. Soap-on-a-rope or in a terry-cloth pouch might be easier to hang onto? How about a bar of soap in a terry-cloth pouch with a wrist strap to keep it handy? Holler if you want one and I'll try designing one for you. Maybe a soft terry wrist strap with elastic in it so it's easy to slip on and off but not so easy that it falls off.
As for getting out of the tub, I suspect some leg-strengthening and balance exercises might help.
The Lebed exercise DVD has an excellent balance section, but I have no idea about what leg exersices might help. Maybe a PT would be useful for that? Have to admit I grinned at the image of asking for permission to take your husband with you into the fitting rooms. I can only imagine how rattled that must make the fitting-room supervisors. Our daughter has a service dog, and when we shop we march into fitting rooms with the dog, who then lies down and watches out from under the door with all the tail-wagging, tongue-lolling doggie glee she can muster. Kind of unsettles the other shoppers, for sure. Usually when we emerge there's a small audience standing in front of the door, some with smiles, some with scowls. Too funny!
Like you, Barbaraellen, I wish there was worlds more helpful information about RIBP -- like how to fix it, for instance.
Gentle hugs,
Binney0 -
So sorry for the length of this post, but could use some been-there-done-it advice
Some background: I was diagnosed with mild BPN about 2 years ago. Because of the timing (2 months post radiation), my doc (who is the field's guru) said it is probably surgical (6 surgeries to arm & axilla.) I had an BP MRI this past spring because I was having more shoulder issues and LE symptoms. Lots of fibrosis to axilla, shoulder, & neck and a couple of cervical herniations, but thankfully not a recurrence (negative PET).
Toward the end of the summer, I started having trouble with my index finger (weakness, trembling, but no pain). A repeat EMG (first since one with original diagnosis) showed the index finger is involved. My doc isn't sure what to make of it. The old EMG abnormalities are stable. He didn't test the nerves to my index finger 2 years ago so he has nothing to compare the new index finger results against. He doubts the index finger problems are caused by BPN progressing because the old abnormalities are stable, and he says the distribution isn't consistent my cervical herniations. (He said it didn't really matter since the treatment (OT) is the same regardless of the source.) I've had mild swelling in my hand for 2.5 years, but three weeks ago, it suddenly got much worse, and I haven't gotten it under control despite best efforts,
Finally to my questions.
1) No matter how gently I do it, after MLD, the hand swelling is worse. Do you do MLD differently if you have BPN?
2) After MLD, my hand is warm and red. Is this part of BPN? (2 years ago my hand would suddenly go from cold /bluish to warm/reddish for no reason, but it got better). Has anyone experienced the sudden changes in temperature/color with MLD?
3) When I first take off my Tribute (or my DH's newbie attempts at wrapping), my hand looks a bit better, but the swelling returns within minutes. Is the fast re-swelling associated with BPN? Any suggestions on what to do?
4) Despite heroic efforts by my LE therapist and well-fitting garments, I have yet to find a day garment that doesn't make my hand look worse. Is this associated with BPN? If so, has anyone found certain day garments work better than others?
5) I'm scheduled to start OT in a week, but to do the exercises I probably will need to take off my Tribute/bandages. Unless things change, I will puff up fast. Did OT work for you? Do you think it is worth the swelling?
6) Lastly, I find wrapping challenging due to limited use of my other arm for non-CA reasons. For a while I used the farrow glove & gauntlet for daytime compression, so I am intrigued by the farrow wrap for arm. For nighttime, do you do finger wrapping under the farrow gauntlet?
KS1
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KS, I sure hope others will come along and share their experiences. All your questions are real stumpers, so I'll just "think outloud" about some of them and hope it might lead you to new answers.
First, have any of your doctors checked you out for Raynaud's Syndrome? The earlier issues you had with blue-then-red hands and your current problem with redness post-MLD would seem to hint at the kind of condition that defines Raynaud's. Just a thought.
Have you tried loosening up on the wraps and garments? It could be you're compression sensitive, in which case "less" compression is "more." You might try a 15-20 mm/Hg instead of 20-30. And look for a garment with a fabric that has a lower containment factor than whatever you've been wearing (Gottfried, for instance, or a Juzo Dream Sleeve). My wrapping has to be very loose compared to what is "normal," or my fingers turn blue and I swell immediately after taking off the wraps. (That swelling is called "rebound swelling" and is sort of a snotty lymph system response to being too tightly compressed.)
On the other hand, my truncal LE will swell within 15 minutes without compression -- the refill time is very individual. My hands and arms are okay without compression for a couple of hours (as long as I'm not doing anything more strenuous than watching TV or reading a book), but my trunk reswells very quickly. (Fortunately it also reduces fairly quickly with proper compression).
Not sure why you need to remove compression for OT? Sounds like a bad idea if there's any way you can avoid it. Maybe remove it for the initial eval, but having some compression on your arm and hand as you're using it is what helps move the lymph fluid, so it would seem like an ideal time to use compression.
On the Farrow arm garment I'm assuming you could wrap or use a day glove with it, or even perhaps a night garment glove from Jovi-pac. (Farrow also makes a gauntlet that wraps like that, but I wouldn't recommend it. I tried it last year at a trade show and found it stiff and uncomfortable.)
I sure hope you'll find the solutions you need. Do let us know what you discover.
Gentle hugs,
Binney0 -
Hi Binney - thanks so much for answering my questions.
WRT Reynaud's, when I was first diagnosed with BP neuropathy, my doc said it was a "Reynaud's-like" phenomenon. Strange to me that it should come back.
You might be right about rebound swelling - I've tried looser finger wraps the past two days and my fingers don't seem to be any chubbier for the change. Yesterday, when I took off the wraps, I looked good initially, then looked and felt terrible (thought my fingers would burst), but then after about 20 minutes, it looked better again. Not as good as when I first took off the wraps, but maybe better than I did when this whole mess started 3 weeks ago. Does this sound like rebounding?
I'm not worried about having the bandages off for the eval -- I'm worried having them off for hand exercises. Part of me thinks the hand flare might be related to the theraband exercises I was doing for my neck. Holding the band was hard (and tiring)!
I saw a very-well-regarded LMT last week who says I have a lot of fibrosis in my wrist. Maybe it is not only causing the lymphatic fluid from draining from my hand, but also causing the index finger weakness.
I know I speak for many when I say that your help makes LE/BP less difficult to live with. Thanks & brownies. KS1
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Would a bath tub rail like tis help?
http://www.assistivedeviceskey.com/product/CMed1122
Sorry using mozzilla firefox, you'll have to copy and paste into your search engine.
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Lioness, here, I'll make the link live:
http://www.assistivedeviceskey.com/product/CMed1122
I like that it's clamp-on and removable -- not so much effort to install!KS, thanks for the kind words
. Yes that sounds like it could be rebound swelling. I have to say, though, that using therabands makes my hands swell just about as soon as I touch them. There's no way to regulate how much weight you're pulling with therabands, so it's easy to pull way too much without the proper build-up or conditioning. Especially if you're using them to rehab some other part of your body. A couple of years ago I broke my leg, and after the cast came off the PT wanted me to hold a theraband in both hands and pull with my leg. NOT!! I never could get it through his head that my hands couldn't handle that -- he just kept huffing at me about it, like I was being a wimp.Yeah, right, a wimp with sausage fingers!
Binney0 -
Thanks Binney!
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Ok I am nervous. I have only had 3 rads to chest wall,axilla and collar bone and my shoulder and arm are aching so badly I cant sleep. This started after the second treatment but I thought maybe it was the positioning when you get the treatment (arms overhead and all that) However it is not bothering my right side where I am not having treatment. Can the BP start that soon? I am 68 and in great shape otherwise and if this could be BP I am going to talk to my onc. and see we can skip this rads and go right to something else. So, has anyone ever heard of it starting so soon? My rads onc just kind of passed over this side effect.
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Milliesmom--Binney is the RIBP expert, but I work in rad onc, and in my experience, patients who are having chest wall and node irradiation often get sore very early.
Also, it puts you at risk for lymphedema, which can ache.
I'd suggest you let your rad onc know and discuss it with the med onc as well.
The radiation causes inflammation, and the whole quadrant is inflammed right now. I see a lot of pain early on, due to inflammation, and then later in the course as skin issues crop up.
I am not a radiation oncologist--I just work for one.
Please tell your doctors--I doubt it's plexopathy, but it could be nerve pain from the inflammation and lymphedema can be painful as well.
Please let us know how you're doing.
Kira
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Ooh, golly, I'm sure not an RIBP expert!
Hopefully some of the others here will chime in. But from all the experiences shared here I'd say you could put your mind to rest about this happening so early. Also, I haven't heard of it starting with those symptoms -- women report it as starting with weakness and/or pain in their fingers and hands. Do talk to your docs, though, as Kira suggested, and be aware of the possibility of breast/chest lymphedema. Hoping the remainder of your journey is smooth sailing! Keep us posted.
Gentle hugs,
Binney0 -
I had surgery and radiation to axilla, arm, shoulder only. I started having severe pain in my arm after my second or third radiation treatment, but it was shooting, electric shock pain, not achy pain. My radiation oncologist told me that it was too soon for it to be radiation induced IBP, and the pain doc she referred me to concurred. (He said that he thought that the radiation treatment was causing inflammation and that plus position for radiation treatment was exacerbating the BP caused by surgery.)
Did your surgeon mess with your axilla? - KS1
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Hi, milliesmom,
My RIBP didn't even start for 20 years, so I go along with everyone else that it probably isn't that. What you should look out for is a tingling in your fingers, as if your fingers are "asleep."
That is a sure sign, and should be reported to your radiation onc. That is not always followed ny pain, but is followed by muscle weakness in those fingers, like having trouble signing your name or not handling a knife well. Otherwise. you should look elsewhere for the reason for the pain.
Good luck,
Barbara-
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When I was working with my personal trainer several years ago, I was amazed at the results I got from lifting arm weights, starting gradually, of course. My trainer was teriffic and held her hand over mine so I could grasp the weight. After a year and a half I could no longer afford my twice a week sessions with her. The best weights I use now are ankle/wrist weights that wrap around my wrist and have incremental pockets to add weight 1/2 lb at a time. My Feldenkrais practitioner told me to start with the weights pushed up towards my elbow to begin with. Lifting arm weights is something I need to do in order to control the size of my arm. For me, it works better than manual lymph drainage. Too bad it's so boring! I need to go back to this because my right hand and arm are strained from doing everything, and I have arathritis in my thumb and I can never give it a rest.
Recently I was having a lot of fun in a low impact aerobics class at my local YMCA. But my right arm would occasionally fly out to the side on its own and give me pain. Then I started wondering if I ws damaging my affected shoulder . So I haven't been back for several weeks. I hate walking on the treadmill and riding the bike. The other gym ecquipment is difficult for me to set up with one hand. So I'm going back to aerobics on Monday because I have fun there, and I badly need an exercise program to help with weight gain and emotional help.
Every day takes real effort. Even eating a cup of yogurt is difficult because I have to hold it and eat it wih the same hand.
Thank God you guys are there for me. I cannot find a medical person who can do anything to help me.I'm tired of medical people saying they can do nothing to help.
Blah, Blah, blah.
Ronimom
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My jaw, neck, shoulder, arm and hand ached right from the beginning. It has never gone away and only gets worse.
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Yes the lump was just under the skin and she took i tout. Sounds like it is something else, I get to see the doc tomorrow after treatment so will ask her. Thanks so much to everyone for the replies.
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