radiation-induced brachial plexopathy
Comments
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Doe, of course it's fine to rant here -- nobody would dream of shooting you down. Vent away! But while you're at it, please don't waste a lot of energy beating yourself up -- the decisions you made were NOT foolish, and you could not have known what this outcome would be. Plenty of women make the same decisions you did and are not dealing with all that you are, so definitely not a matter of foolishness or self-betrayal.
Please, please, tell us how we can help!
Gentle hugs, and prayers for more courage than you think you have,
Binney0 -
Thanks Binney for the prayers. But I feel I have plenty of courage. But courage isn't what I need. What I need is a place to go, to get the facts. Not the sales pitch. So I can send others there to give them a heads up, a warning, a think twice. I have such a long history of sensitivity to so many medications. I never thought to transfer that knowledge about myself to radiation. Looking back,it only makes sense to me now. Cookie cutter medicine. There is no individual or person centered plan in cookie cutter medicine. What is it with the magical number of '33'? We're all diferent. I knew I was different!!! I'm not beating myself up. Really. I am acknowledging my regrets, taking my inventory and hoping to learn from it to maybe prevent this from happening to just one person. Just one would be enough for me! I remember when my radiation was over, there was some scuttle butt on the news about a news anchor who had been diagnosed. Her doctor recommended radiation. She did her homework with connections far superior than I'll ever have and turned it down! What did she learn?
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Doe, I would have posted sooner, but we just returned from a trip to Boston...Dana Farber, in fact, where I go every year at this time for my checkup and breast MRI. Except for all the usual big scary words, like "necrosis" and "rim enhancement" I have a guarded OK for this year. It's always a guarded OK. Nowhere, in any report, is RIBP mentioned. Nor is the word lymphedema. It is referred to as "some mild edema." This is why the statistics are so crazy. If they called both conditions by their proper names, there would be a lot more than 2% of us.
I hear your frustration with the whole system. My doctor, the radiation onc, says that I am only one of 2 patients he has seen in 30 years with RIBP. Even he refers to it as "this condition." He thinks that science has to come up with a way of figuring out who is more susceptical to radiation, and that we should not all get the same cookie cutter treatment, as you said. But for now, it's all we have. He is very sympathetic, at least, and he doesn't say I should just be grateful to be alive. We are still on the cutting edge of radiation therapy. There is so much about it that is still unknown. We were just born too soon.
I know how much you want facts. I am like that too. That's how I found out about lumpectomies 30 years ago. No one in the midwest was doing them. Only Boston, Houston, Yale, and somewhere in California. Boston was the closest. I was so pleased with my discovery, and despite much grumbling and head-shaking from just about everyone, I went ahead. At that time I asked if there was any down side to radiation therapy, and I was assured, no. So when my upper chest became disfigured within a year, I sank into a real depression. I felt very betrayed. Since no one I knew had had radiation, I felt very isolated. I figured out that it must be my fault for having made the wrong decision. Somehow, we always manage to blame ourselves when bad things beyond our control happen.
Your decisions were based on the best information available to you. If you had been informed of the chances of averse reactions, you would probably have taken that "only 2%" chance. I don't think medicine is holding out on us; I think most docs are not as honest as they could be about how many patients have poor reactions to what they believe will help you. They hate to admit failure. The best ones at least admit they just don't know. So they help us to blame ourselves too, because we should have picked a different doctor and a different treatment.
It's really not anybody's fault. I wish it was. Then we would have someone to hate besides ourselves. It is just a bad hand, a raw deal, an unfair break. I am not minimizing your reasons for your anger. I just hope to help you a little bit on this one day.
Barbara-
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Just a couple of new notes, in case you haven't already discovered them.
First, the Handwriting for Heroes workbook website has added some new information -- a few how-to video links and a power point presentation:
http://www.handwritingforheroes.com/And here's a "knork," a combination knife and fork that's actually kind of lovely:
http://www.knork.net
They sell them in sets of four or twenty, but you can order a "sample" one for $4, which includes tax and shipping:
http://www.knork.net/sample-programI'll also include a link to a youtube video of a dog trained to do some tasks that might be helpful (the first part of the video shows at least -- the rest is just kinda funny). There are programs that train service dogs to perform tasks like these, and to exercise paralyzed limbs as well:
http://www.youtube.com/watch?v=pVx4IBbjzbQBarbara, congrats on another "OK for this year." We're all "guarded," for sure!
Connie and Terri, GramE, Watts, and Ronimom, missing you! What news?
Be well,
Binney0 -
Barabara Ellen,
Thanks for your honesty. I was just looking up risk factors for radiation induced brachal plexopathy. Then I came here. You're right. No one's really looking into it. But it only stands to reason that someone should. I had a moment when my gut was screaming at me to walk away. But it was muffled to a whisper by the terror of cancer. Rads wants to blame concomittant chemo, neoplastic brachial plexus (cancer), chest wall surgery, underlying lung cancer.But you're still here. Aren't you?
Too often we look beyond the logical. If a patient is burning far more than others that's enough common sense for me.
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Hi everyone:
Thanks Binney for asking about me. LOTS going on - Daughter in Law's mom dx and having Bi lat "soon" - but she is not getting a second opinion or going to a real breast surgeon or facility. AND, she is not willing to talk about it to anyone, even her daughter.
I am doing various volunteer activities and trying to keep my head on straight. Someone told me I was a "wimp" because I refused to lift and lug some heavy items while volunteering. I snapped back that until you walk in someone else's shoes, you cannot know. Thanks for letting me vent.
Hugs and Blessings, Nan
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Binney,
Dragon Naturally Speaking is the software program is we reccomend:
http://www.nuance.com/for-individuals/by-product/dragon-for-pc/index.htm
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Wow.. lots of information and venting going on here. We have been struggling with a new chemo for Mom and yet another infection. Thankfully no hospital stay. She had lost another 8 pounds and the Dr threatened...but Mom was able to start eating again. In the mean time, Ben broke both of his front teeth, and my husband tore his rotator cuff, and just had surgery. I had wished for some changes in my life...LOL This was not what I had in mind!! Oh well, at least my life is not boring.
I have often wondered about the why's of RIBP. I understand that there is a Bell curve, and that most people fall into the center. You here are the ones who have fallen outside of the Bell. Why? You all have different types of cancer, your ages are different. What is the thread that ties you all together? Blood type? Meds you were taking when receiving radiation? Bone density? Chemo received? Length of time between chemo and radiation? I could go on. Then the questions begin about what type of research is being done...so many neurologist say that there is nothing that can be done. Is anyone trying? If not why not? Do the Japanese have any insight to radiation damage? Have burn centers looked at the problem? There are times when I watch Mom struggle and my heart weeps. Yet, it has given her 11 years with us, that we may not have had. It has also brought us closer and has given us many new friends and "comrads in arms"
no pun intended. I believe that our numbers are stronger than 2%. Finding everyone, and joining our voices together can only help with education and research.
Continuing to keep you all in my thoughts and prayers...
Terri
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Oh, Terri, goodness! You must be running your legs off caring for everyone! Do you have any support? Neighbors? Church? Extended family? Do please take good care of yourself -- eat, rest, even if it means telling everybody who needs you to wait a bit. It's so easy to run down to nothing when you're fighting on so many fronts at once.
Poor Ben! That sounds very ouchy besides being a mess to fix. Hope he's back to chomping corn on the cob again real soon. And your husband -- rotator cuff means weeks of PT, yes? Do you have a taxi sign on your car yet!
Connie, prayers for the new chemo, and for an end to all the infections -- so painful and exhausting! (And if you're like me, antibiotics wreck havoc on the old digestive system -- yuck!) Keep eating anyhow! With chemo my favorite weight-gain dish was a rich rice pudding, mellow but sweet and easy to eat. Wishing you a "rice pudding" kind of appetite and whatever satisfies it for you!
GramE, good to hear from you -- it's been awhile. A wimp?! Wow, I hope they were just trying to be funny or something, because otherwise that's really hurtful language to be throwing around. Since you were volunteering you should have told him to go ahead and cut your pay! Really sorry your DIL's mom is having so much trouble handling this diagnosis. Being silent about it sure doesn't make this journey any easier -- for her or her family, either one. Keep us posted. What kind of volunteering are you doing? You're an inspiration!
Lionessdoe, thanks. With your permission we'll post it at StepUp-SpeakOut.
Terri, your questions are so interesting to me. I wonder that too, and the answers to those questions would be so helpful to beginning to find ways to prevent -- or even repair -- this damage. I agree that this continues to affect more than that small percentage of women -- so why does it continue to be ignored? You're right that joining our voices is the only way we can begin to affect any change.
Hugs all around!
Binney0 -
By all means Binney ............... do post! Always!
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Me again. I am a member of the American Legion Auxiliary and we have a Sunday football tailgate (indoors) buffet meal. I monitor the "donations" for the food. The event where I was deemed a wimp was the Octoberfest meal and huge trays of food had to be brought in, already cooked.
I also do some crafts to raise money for the Auxiliary projects, like Girl's State, Christmas baskets, and other veteran and family support projects. It is frustrating - to say the least - that although I wear a splint on my wrist/arm (not a sleeve), that people have to consider it an "out" when it comes to lifting and lugging. Maybe I should carry the letter from my surgeon that states I have 30% use of my arm and hand...
Here's hoping all have a good day and week - free from pain, aches, or problems. Hugs and Blessings.
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Binney, thank you for the info! I do have a script for Trental, but was told to wait until I can get into the neurologist. So now I take Neurontin only for this. It seems no one knows what to do with me. The rads onc disputes the fact that it's RIPD, but reg onc, PT, and radiologist all believe it is. Whatever it is, it's getting worse. I can't extend my arm to pick anything up, or else my fingers and hand go numb. I tried to pick up a suger packet and couldn't. My typing is starting to become affected. It's like my fingers don't work right anymore. The pain starts in my armpit area and runs down the length of the under side of my arm into my hand. PT stretches me, but doesn't alleviate anything!
Chemo and rads was a breeze compared to this
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Kira,
Noticed you were going to Dana Farber for a conference. Did you go yet, and if so, did you find out anything about RIBP?
Barbara-
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Linda, any news from the neurologist? I invested in a one-hand-only keyboard and was able to get back up to speed with it again within a couple of months, and it's really eased the frustration on that score.
Keeping you close in my thoughts!
Binney0 -
My appt has been bumped to Nov 11. We shall see!
Thanks for checking!
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BarbaraEllen,
I broke my LE hand, so I had to cancel--it's this weekend. While it's not offered to patients, If you wanted to attend a lecture, no one would stop you.
Sorry
Kira
http://cme.hms.harvard.edu/index.asp?SECTION=CLASSES&ID=03014320&SO=N
The link doesn't work well, but it's listed by date, and the Sunday--in the Jimmy Fund Auditorium will be on upper extremity rehab--the most relevant lecture for RIBP
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Good Heavens, Kira! You broke your LE hand?! That's awful! Were you trying to pry tiles off a floor or something? The whole hand, or the fingers or the wrist? How did that happen? I hope your therapist can deal with that properly. What did the xray show?
Now that you can't go, I am going to send that information to my onc, who is at the Dana. If he can't go, I am going to ask him to send one of his many subordinates. He can't keep telling me knows nothing if info is being shared right under his nose.
Take care of that hand, even if it's the bad one. We only get 2, you know, and we have to try to get as much out of them as possible. Keep us informed. In the meantime, don't pick up anything heavier than a fork. Take care.
Barbara-
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Barbara Ellen, Binney, et al. Is life settling down for me? a little bit. The teeth are fixed, the In laws home, and the RC on the mend.
Unfortunately Mom is back in hospital with another case of cellulitis, plus another bacteria. They have also drained fluid from her left lung and found cancer cells. The new chemo has been working on the skin lesions and at this time we are not sure what type of cancer is in the lung. I should know more on the 11th. She will be in the hospital for another couple of days.
Thankfully, there is family around and we have a fantastic support group at church and here at the store. I need to get back to work...but will keep you posted on any developments.
I hope this note finds you all at a "good time"
Love and hugs to you
Terri
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Just checking in after a while. Brachial Plexus nerve is calm, I think, but my lymphedema garments have caused major trouble with carpal tunnel syndrome & arthritis so I've abandoned them temporarily. For the last few days, I've been taking leftover Gabapentin and I think it's helping a bit. Awaiting a doctor appointment, hoping somebody can sort out all that is going on in my poor arm! I suppose the nerve conduction velocity test will be done as my last on was in the early 1990's.
Best to all - Brenda
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Where do I start? Wow - it's been 5 years since I was diagnosed, and not quite 4 years since my treatments (chemo & radiation) completed.
It's been just over 4 years since I started having neurological issues with my hands/feet from the chemo - tingling/numbness/clumsiness/stinging/pain. It has continued to worsen over the years, and about the last 8 months has grown more agonizing.
I have gone through physical therapy, MRIs, CAT scans, EMG nerve conduction tests, massage therapy, and multiple doctor visits. Final result is that I have a RIBP [Radiation Induced Brachial Plexopathy] and CIPN [Chemotherapy Induced Peripheral Neuropathy]. Neither of which is reversible.
The biggest culprit from the chemo drugs was vincristine (1984 for Hodgkins Disease) and more recently, taxotere (2006 Breast Cancer). The radiation I received for the breast cancer in 2006 overlapped areas where I had mass upper mantle radiation treatments for the Hodgkins Disease. The mass upper mantle radiation from the 80's is what caused the Breast Cancer 22 years later. The RIBP is so severe, my clavicle and shoulder areas feel to the touch, like cement was poured in. So solid, there is no soft tissue.
The nerve damage is severe in the upper torso - shoulders/neck/back/arms/hands - additionally the damage extends into my toes/feet/ ankles/lower legs.
The numbness/tingling/stinging/pain is cruel and relentless. Feels like bare electrical cords are running through my body parts, non-stop 24 hrs a day. The weakness from muscle loss is debilitating.
I am to the point with the nerve damage where my right hand is basically like a rubber Halloween hand - flimsy, no strength in the fingers - no coordination - sensory feeling is mostly nonexistent, except severe pain from heat/cold and constant 100% of the time needles/pins. The muscle atrophy is very severe - muscle tone is gone - if I place my hands next to each other the right hand is about half the size in width as my left. Unless I actually look at my hand, I don't know if my fingers are bent, or straight. They always ‘feel' like they are bent or curled under, even when they are not. I reach into something and often bend my little finger back or out to the side without even realizing it. Typing is a challenge - lots of backspacing and deleting - good thing spell check helps.
My right forearm is relatively smaller in size to my left from muscle loss. The upper arm is stronger, but definitely weaker than the left. I am a right handed individual by birth - however, I have now changed my dominant functions such as eating, drinking, writing, number typing, keyboard typing, holding, carrying all to the left.
My shoulders and neck sometimes feel so weak and painful I can barely hold my head up, and need to lie down till it rests enough to continue on.
My left hand/arm/shoulder is also affected with the damage. And as I am finding, the more I rely on my left hand, the worse it too is becoming. Oddly, with this nerve damage, "the more you use it, the more you lose it" applies to muscle tissue. In the undamaged body world, the nerves feed the muscles. When the nerves are damaged, they can no longer feed the muscles enough to remain useful and strong. I am dropping a lot and having typing/mouse and strength/coordination issues, along with increased stinging pain in my left hand/fingers/arm than before.
I now have a Physical Medicine Specialist MD who is at least understanding and informative. I have found over the past 4 years that the medical profession is basically unable to correct this type of damage. Oncologists and Radiologists brush it off. They can provide various drugs to mask the tingling symptoms and pain, but unable to stop the progression of nerve and muscle cell damage. I've tried a few types [Neurontin, Lyrica and some others I don't remember] with no benefit. Currently I'm trying Cymbalta low dose - I notice an ever so slight decrease in the sensitivity/pain to my right palm. But nothing dramatic. Sleeping is tough - I wake many times a night with discomfort and pain. Ambien helps me to actually fall asleep initially, and then get back to sleep after the multitude of wakening events - but not always -some nights are worse than others.
I'm finding it more and more difficult to continue working - difficult physically and mentally. This frightens me, because I don't know how or if I qualify for social security disability. So I push through it the best I can, as we all do when life challenges us. Driving has been ok - I find it gets tiring the longer I drive from muscle strain in shoulders, hands and arms.
Narcotics are not an option for me to help with pain. I am allergic to them - all of them - including Tylenol and Ibuprofen which cause nausea and dizziness - I have more side effects from all pain type meds then can be tolerated, even with anti-nausea drugs. The pain meds, and the anti-nausea drugs, also affect my nerves and I have tremors/shake, like I imagine someone would going through a mild detox event. They cause arms/legs to jump and twitch - and then add vomiting - makes it easier to deal with the pain, then the side effects from the pain meds.
Chemo brain runs rampant - I would tend to believe 100% of chemo patients suffer from that.
Oncologists forewarn us that the chemo drugs not only save our lives by zapping the cancer cells, but also damage the good cells needed for quality of life. As the patient, our decision to save our lives and survive is strong - worry about the other stuff later if it happens.
The chemo I had in the 80's and 2006 included Adriamycin - helped kill those cancer cells, but resulted in Cardiomyopathy and Congestive Heart Failure. I have had more than the allotted dose of that type of drug for a lifetime.
Chemo and radiation have saved my life twice - I am tremendously grateful for all the research and trials that have provided the level of knowledge, skill and testing that has been done thus far. I didn't write this posting to whine or complain - I post it to help others know they are not alone - and to be heard in the research world. If this one posting can help one other person, I am happy - if it can help the thousands of others who may need cancer treatments in the future, I'm ecstatic - I'd somehow find a way to do the Snoopy-nose-in-the-air-happy dance-all around the world!
Sometimes it appears to me that we have so much focus on fighting and killing the cancer, that the quality of life for the patient is forgotten in the war. Even our options presented prior to treatments are hard to comprehend - we want to survive first - fear drives us to "get it out" with a big fight. Would I have made a different decision on treatment options? I don't know - hindsight is always 20/20 - but are we ever really given a clear picture about what our future may hold if we do the big fight? We should.
I've done a lot of internet research and doctor/patient discussions to find most of the same answers - everyone responds differently to the chemo, ranging from some who have no noticeable nerve damage, to those who are incapacitated. Many of the internet search results are websites trying to sell various vitamins and supplements - nothing that I hold a lot of faith or trust in - just another way of taking advantage of the disadvantaged. There are websites that offer products to aide with performing day to day functions for those who have become one handed. They have some very helpful gadgets available. I have found this particular website beneficial - http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm
What I cannot seem to find are any kind of statistics on how many people are affected by the neurological side effects - based on what I've read posted by many, the numbers must be high. I keep reading some ridiculous percentage of 2% - really? Just from reading postings I know that number is way too low - How about all of those who don't post - How many more are the "unheard"?
I believe that in numbers we may be able to get some attention. Attention and focus to help direct additional funding to not only kill cancer cells - but kill them without damaging the patient's quality of life.
How many of us are really out there? Have there been any studies or clinical trials? There may be, and I just haven't been able to find them. Anyone out there know? Any other groups already established for those suffering from the neurological side effects caused by RIBP and CIPN?NOTE: I've posted this same message under Chemotherapy - Before, During, and After - to try to reach out to as many sufferers of these side effects as possible.
Cindy
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Cindy, my goodness! If they needed a script for "Private Practise" and you sent your post in, it would be rejected with the comment, "Nah. Too extreme. Not believable."
I am so sorry about all the pain you are having from the RIBP as well as the additional pain from the CIPN. I never had chemo, "only" radiation following my lumpectomy years ago. My RIBP showed up about 25 years later. I used to think it didn't happen until years later, but looking back I realized it was much earlier; I just didn't know what it was. It sounds like yours was a much more sudden onset than mine. My handwriting became sloppy, then I had trouble holding things, then I started dropping things, etc, etc..........you know the story. It took years to get a diagnosis, just like you, and not from my radiation oncologist, but from a neurologist. I was so incredulous that I made him spell it out for me.
I didn't have the upper mantle radiation like you did, but I had radiation seeds implanted in my breast for 24 or 48 hours, I really don't remember which, but I was in isolation all that time, and any doctor or nurse who came in was wearing a really spaceman-looking outfit, helmet and all, from top to bottom. I was actually radioactive during that time. That added another 5,000 rad to the 10,000 I already had from weeks of radiation therapy. It was considered a "for good measure" treatment. It is cold comfort to know that they don't do that anymore.
I agree with you completely that this 2% number is ridiculous. I think it is way underreported by the docs themselves, and nobody is counting all the women who have just curled up on their couches and resigned themselves to no having no life at all. Like you, I have no idea how to find any statistics, and the only women I know who suffer from RIBP are right here.
The quality of life. Something your onc doesn't mention and it never occurs to anyone to ask about. First let's blast out the cancer any which way we can. Then we can discuss quality of life..........if you bring it up
However, we must give credit to the guys who struggled against their own peers to make lumpectomy respectable and safe, instead of giving every woman a radical mastectomy whether she needed it or not. What we need is another group of dedicated researchers who want to reduce the terrible side effects of chemo and radiation, who have the quality of a woman's life as a primary, yet still safe objective.
Never worry about whether you will be judged on this panel. If you can't whine or complain here, where can you? To one extent or the other, we are all in the same boat here, and we each bring something important to each other.
Did I understand that you are still working? I admire your gumption and determination, and whatever it is that you do, it must involve a lot of brain power, which seems to be in fine working order.
I share many symptoms with you, shifting every thing you do to the hand that is not too happy about its new responsibilities, watching your right arm grow weaker, etc. I do not share your unfortunate allergy to all pain pills and narcotics. I hope there is someone reading this now who has a suggestion for you.
You are in a good place here, keep posting.
Barbara-
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Thanks Barbara! Wow - radiation seeds - I was in isolation a few times and whenever anyone came in they had to don the full garb, but not to the level your visitors had!
Yes, I am still working, but it is becoming very difficult - I can deal with using my left hand for most everything. However, I do make a lot of mistakes with typing - as I can get my right hand fingers to try to type, but often the strength to actually hit the key, and feel the keys, causes errors. I do have a lot of computor work all day - I get very tired, and have more pain as the day goes by - and the left hand is causing errs and trouble controlling the mouse functions - which is one of the first things i noticed as i was losing my right hand functions - strength and coordination is dwindling on the left too. Scares me.
Has anyone out there been able to obtain SSI disability benefits for this type of nerve damage and related atrophy? I need the income, and health benefits - my work health plan is very good - and we sure know we can't do without needed quality health care. So I do push on - fear of not having income or health care is frightening.
I went to my onc yesterday for my routine 6 month followup (crossing year 5 since diagnosed) - we discussed at length the issues that have been getting worse and gaining speed relating to the neuropathy - as she explained to me, the nerve damage that is done at the time of drug infusion is the only damage incurred - so the damage of the nerves themselves does not continue to get worse - they only damage when they are actually exposed to the drugs or radiation - so - what i am experiencing more of over time is the muscle atrophy, caused by the damaged nerves. The atrophy will continue to worsen over time, and indeed it has. She also said in her 15 years of practice she has not seen the level of damage I have, and of course is concerned it could be caused by something else - although most all other things have been ruled out - i.e. additional tumors, muscular disease (mostly based on the symptoms I have presented and been tested for thus far). She too, basically said, she just doesn't see nerve damage often, and when she does, its minimal. Now, the treatments I had in the 80's with chemo and upper mantle radiation have certainly compounded the issue - and most all of her patients did not experience that additional attack on the body. The RIBP is something they tend to see a bit more of, especially when there is overlapping radiation from previous treatments - the scarring tissue does tend to choke and can continue to grow and choke the brachial plexus area.
My veins were very uncooperative, and although they had 4 good sticks - i wasn't giving up enough blood for the lab work.... I usually have this problem, which again was due to the chemo scarring the veins - tough stick indeed! Otherwise, I had a great check up - no additional scans as I had just had a cat scan in October that was clear. I go back in 6 months for another followup and pet/cat scan.
I also discussed the estrogen blocker (Aromasin) and how it may be adding to my chronic pain - I have 9 months to go to finish the full cycle - However, she said I could stop for a month or two and see if I feel better - If I don't feel any different, I can go back on and finish out the 9 months more. I agreed to that line of thinking.
So my dear friends/sisters - Let's keep up the good fight and communicate often!
Take care -
Cindy0 -
Ah, Cindy, an Aromasin "vacation"!
Not exactly a Carribbean cruise, but I hope it has an even better effect! Please do keep us posted. How wonderful that you have a concerned and empathetic doctor. Interesting that she sees the RIBP more often than the chemo neuropathy -- I'd have guessed it would be the other way around. And at least she admits to the RIBP -- some doctors tell us that doesn't happen anymore.
BarbaraEllen, I don't think I ever heard the "radiation seeds" part of your story before -- yikes! I'm not a bit surprised you can't remember if your stay in isolation was 24 or 48 hours -- must have seemed like a lifetime!
GrayT/Brenda (of the frog with an attitude!
), I'm so sorry for the pain and the stupid complication of one problem impactiing another until you hardly know which one to treat! I have problems with my lymphedema garments if they're too tight -- very ouchy and aggravating. So mine are custom made, and measured generously. In fact, if they're the "normal" tightness they make the lymphedema worse instead of better. Very frustrating when the cure is worse than no cure! Let us know how it's going.Terri, it's been ages since we've heard how you and your mom are. Hoping the cellulitis has been completely resolved. What news?! Prayers for you all.
I just finished organizing the RIBP medical literature review, so it should be posted on the StepUp-SpeakOut RIBP pages soon, along with a few other "gadget" ideas y'all have suggested. Our webmistress, OneBadBoob/Jane, has been sick (not to mention socked in by those monster snow storms back East!), but hopefully all will be well with her shortly. <Sigh!>
Cafelovr, GramE, Lionessdoe, what news?
Hugs all around!
Binney0 -
Happy New Year everyone. How thoughtful, Binney, to ask about me. Nothing new here and since my BP is Trauma induced, I feel I have little to complain about. How fortunate that your Dr, Cindy, is acknowledging that RIBP exists.
When I had rad onco consult, she told me it is very rare, but when I mentioned I already had BP due to car wreck, she told me such a line of nonsense, I had to block her phone # --- she kept phoning me to say I HAD to get rads, even with no Node involvement and totally clear margins.
The new year is marching forward and I sent Good Wishes to all. Hugs, GramE
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Hey! Some news about SHOULDER SUBLUXATION (which, in plain English means the partial dislocation of the shoulder joint that can happen with progressing RIBP). Hope it's helpful to some.
Some time ago I heard that kinesio taping, which is sometimes used to help drain areas of lymphedema, is also used to support joints, and in particular the shoulder. So I've been casting around trying to get information about this and yesterday received an email from one of the foremost experts on kinesio taping. I had asked her if kinesio taping could be used for this situation; here's her reply:
"You are correct in thinking and seeing that Elastic support and Taping could assist with this condition. I have used it with Brachial plexus injuries many times and subluxed shoulders for stabilization of the anterior capsule. In the past had a patient with radiation injury post radical neck tx and it did help with relief of the "burning parasthesias" that radiated to the hand.
The only concern is the strength/health of the skin of the individual where the tape will be placed. Each case would also need to be assessed for implementation. Provide anterior capsule stabilization? Supporting the weight of the arm? Relax the antagonist (Latissimus Dorsi)? Many ways it can be used and in addition the edema in the area will be reduced."Since it's so often difficult (impossible?!) to find therapists who will or can help with this issue, hopefully it will help to at least have this much information to pass along to doctors and therapists.
Hugs, all,
Binney0 -
Hi Everyone, The last time I posted I told you about my positive experience with a very talented Feldenkrais practitioner. My progress continues. I am experiencing lots of pain, but no worse than before, and I am moving around much better. My shoulders are alligned, and my head is much more centered. I am learning to move my upper body by shifting weight on my feet, knees and pelvis, butt, and I am much more flexible and definitely more balanced and sure of myself. I am moving my right arm, guided and held by my shoulder.
Binney, please text or call me on my cell, 206-954-3670. I live on the west coast, so Pacific time...I want to tell you more about my treatment.
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Ronimom, I really enjoyed chatting with you, and I'm so impressed about the gains you've made with this program!
It's so good to hear some good news and progress. THANK YOU for sharing your information here, and please do continue to keep us posted.Hugs!
Binney0 -
Connie/Terri, missing you! What news?
Hugs and prayers,
Binney0 -
Well, hel-LO out there, Binney and Ronimom! I just tuned in, and am delighted to hear about your progress, RM! I have heard of Feldenkrais; my lymphedema therapist is Vodder trained, and these therapies are related. I would love to hear a little more about it, and would especially like to know if your therapist knows anyone in the Boca area in Florida, or in the Chicago area.
No fair keeping secrets, ladies...............the world is waiting.
Barbara-
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Look what just appeared today -- the first part of a two-part blog about RIBP written by Joe Zuther, the director of the Academy of Lymphatic Studies, a fully accredited training school for lymphedema therapists. He's also associated with both the International Society of Lymphology and the National Lymphedema Network. So far this entry in his blog is just a description of RIBP, but the next blog entry will deal with treatment, with an emphasis on the lymphedema end of it. It's here:
http://www.lymphedemablog.com/2011/01/28/radiation-induced-brachial-plexopathy-and-lymphedema/
I'm so cheered to see it even arise as a subject -- hopefully we can expand the discussion he's begun so that medical professionals will begin to put together some better strategies.
Barbara, I had a wonderful talk with Ronimom and wanted to share with you that the Feldekrais has given her ways to control her arm and shoulder, which makes it possible for her to avoid getting her arm "stuck" behind (say, on the steering wheel as she exits the car) when she's moving in another direction. It has also given her confidence that she simply didn't have before because it allows her to move with grace. It's a method that increases both our awareness and control over the muscles we still use, to compensate for those we don't. Ronimom's trainer is a real pro, so I've asked her to write about it for our StepUp-SpeakOut RIBP page and to explain how we can find experienced Feldenkrais practitioners nearby.
We will be up-dating the RIBP page shortly (hopefully today!) with abstracts of all recent RIBP research, some more tips for gadgets and goodies you've all suggested, and information about kinesio taping for shoulder stabilization. More news soon!
You're so right, Barbara -- the world really is waiting for good news, and hopefully some of this will be exactly that!
Hugs all around,
Binney0
