Thursday, November 15, 2012

Radiation Induced Brachial Plexopathy - RIBP WHAT IS THAT???


Most have never heard of it.  Nor had I until 2010.  As I searched for answers to physical problems I was having, I found a shoulder surgeon who understood.  He scheduled an MRI to rule out any tumors or shoulder tears.  I had neither.  However, he told me I had Radiation Induced Brachial Plexopathy caused by the mantle radiation treatment I received in 1983.  WHAAAATT??  It’s 2010!!  I had a few further EMG tests to confirm.  He understood, what several other MDs could not.  The surgeon told me that there is nothing that can be done to correct this damage.  And surgery could be more dangerous, as scarred radiation tissue is difficult to heal.

Previous to the shoulder surgeon, I had already been to my PCP several times.  He shrugged his shoulders. Gave me a couple steroid injections, that did nothing.  Talked with my ONC multiple times about it.  She shrugged her shoulders.  And as I thought back on it, my problems began to surface when I was about 10 days into my Breast Cancer rads in 2006.  At that time, I brought it to the attention of my Radiologist.  She didn’t know why I was having these symptoms.  She most definitely should have.

Radiation-Induced Brachial Plexopathy (RIBP) is caused by radiation damage to the brachial plexus, a bundle of nerves located near the neck and shoulder. These nerves are responsible for the sensory and muscular sensation of the entire upper extremity. As the feed to the nerves die, so do the nerves.  Nerves feed muscle.  Muscles die without food.  This damage, in my case, was originally caused by mantle radiation received for treatment of Hodgkins Disease in the early 80’s.  Collateral damage on the path to kill cancer cells. This old type of rad treatment has since been changed.  However, with survivors living longer we are seeing and feeling late-effect issues from these extreme rads. One of them is Breast Cancer. Hence my diagnosis in 2005, 22 years after the mantle radiation.  The additional radiation I received in 2006 for the Breast Cancer overlapped the area of the right Brachial Plexus, thus giving it fuel for more damage.  As noted above, neither my ONC or Rad MDs knew anything about this in ‘06, ‘07, ‘08, ‘09, nor ‘10, when I would bring up my increasingly worsening symptoms.  Hhhhhhmmmmmmmmmmm.

So, off I went into the world of the internet.  Filtering through those who want to capitalize on our pain with supplements, vitamins and expensive roots, tree bark, snake oil, was tiring and frustrating. I began writing in various forums on the Breast Cancer sites.  I found that I was not alone with my symptoms, problems, and pain.  Hey - I’m actually not the only one!  That isn’t something I would want for others.... but to know it’s not just me, and the medical field cannot think I’m crazy anymore is kinda priceless, I must admit.  

In one of those forums, I read about a Dr at Memorial Sloan-Kettering Cancer Center who specifically sees Hodgkins Disease survivors with RIBP and other cancer treatment related problems.  I communicated with him, and made arrangements to travel to NYC in August 2011.  I stayed 2 weeks.  Examinations and various EMG and MRI tests later, confirmed the RIBP diagnosis. Plus, the entire upper body is fusing scarred tissue called RIF (Radiation Induced Fibrosis).  I learned a lot from that trip.  It is not repairable.  It will continue to get worse.  Drugs may mask some of the pain and discomfort.  The more I use my hands and arms the more muscle loss occurs.  Same with neck, shoulders and back.  While I was there I spent  a lot of time with their PT and OT clinic.  They taught me good stretching, core strengthening, and relaxing techniques.  They also helped me with finding some tools to aide with the loss of right arm use.  The Dr told me the overall radiation damage to my entire upper extremity was the worst he had seen.  

It took 5 years to escalate to where I am today.  Five years ago I was wondering why I couldn’t control a pc mouse, or why my handwriting was looking bad, or why I kept dropping things, or why is it so hard to button shirts?  It was a combination of little, take for granted things, that grew worse and worse.  Gradually, I could feel, and see, my right hand waste away.

As of about 1 year ago, I can no longer use my dominant right hand. I am now totally, and only, left handed.  I dream left handed.  The pain enters my dreams when I sleep.

My RIBP life.... 24/7.... 100% of the time.... pain level 6-7 out of 10 normally... escalates to a level 9 often:

This is with my prescription drugs -
  • right arm/forearm/hand/fingers severe neuralgia pain, sensitivity, clumsy and muscle atrophy - 5 lb measured grip strength, 0 finger strength
  • left hand/fingers neuralgia pain, clumsy and muscle atrophy - 45 lb measured grip strength, limited finger strength
  • back, shoulders, neck, weakened, limited movement.
  • back, shoulders, neck, arms, severe neuralgia pain, muscle atrophy, and muscle spasms

Unless you’ve ever had nerve pain, it’s hard to grasp.  But imagine you grabbed a bare electrical wire, and never left go.  Yeah, like that.  Tingling, buzzing, stinging like angry bees, stabbing, jolting, intense pain.  That's with drugs.  Without is indescribable.

If you, or someone you know, has had radiation treatments for Hodgkins Disease 20+ years ago, and are having any neurologic problems, please reach out to your PCP.  And if they don’t listen, or shrug their shoulders without offering to figure out what is going on, then find a Dr that does.  Additionally, any lumps, bumps, changes in, or under, the skin seek medical attention. Breast Cancer is often common from mantle radiation, be alert, know your body!

21 comments:

  1. Hi. Like you I have RIBP from radiation therapy back in 1984. In 1998 I went to the doc with tingling in my right (dominant) thumb and index and forefingers. Two years of nerve testing proved nothing and they were ready to think about surgery even though all the tests conflicted with what they would expect for carpal tunnel syndrome. I had mentioned this at two oncology appointments and no bells had rung for them. On my third yearly oncology visit I happened to see the consultant who instantly recognised the problem. Her solution for me - once an MRI showed the scar tissue and that there was nothing else sinister there - "learn to use your left hand".
    Now it's creeping very slowly but surely up my arm. My shoulder is getting weaker and weaker. And my phrenic nerve is also affected, leaving my right diaphragm stuck a few cms higher than it should be, which explains my breathlessness for very little effort.
    The only good thing is that so far I've had little pain but it's only going to get worse. And since I appear fine I'm not sure my family &friends really get how bad this is, or how bad it's going to get.
    Anyway, it's good to know I'm not alone.
    From across the pond,
    Janet

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    1. You are not alone for sure Janet! If you are as hard headed as me, you still think you can do the things you've always done. And, you try to appear as normal as before. I think its our animal instinct to blend in as part of the herd. ;) It may be why it's hard for those close to you to understand. I have learned even through my hard headedness that some things may need to remain as something I used to do. I'll find a new way to do it, or a new thing to enjoy instead. That's ok. It's life - one moment at a time. I am glad that you don't have the pain! That is awesome! Checkout the STEPUP SPEAKOUT webpage http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm Also, across the pond in your direction is R.A.G.E. at http://www.rage.webeden.co.uk/about-rage/4521696969

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    2. I am sick of being told to learn to accept the microwave damage they did to my left axilla/chest area for Stage ZERO breast cancer at age 33. I had a budding career as a classical musician and now hobble along. It took me years and thousands and thousands of dollars, and sadly more CTs/radiation/tests to finally get a diagnosis. The people who radiated and cut me are SILENT and I am enraged. I trained with some of the best teachers in the world and had not an ounce of physical pain or hindrance playing my instrument until shortly after the radiation. A smug doctor in NY told me to change from my wind instrument to the piano. Oh, really? Why doesn't he suddenly switch from an ENT to an OB Gyn? I am not going to take the loss of my passion and career (I, too, am a Doctor in my musical field) lying down and will fight. I want to expose what horrible damage they are doing, especially to people with slow growing and non-spreading cancers. They are all too quick to microwave muscle and nerves; yet with all the waivers we signed they cover their own asses. I will check out the STEPUP/SPEAKOUT website. I want collateral damage, as I'm broke, frustrated, and symptoms are worsening nine years after my treatment. I've read it can continue to burn you for more than 20 years. Thank you.

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    3. You are absolutely right.... We need to be heard.... There needs to be change in the way those who have been subjected to cancer therapies are medically diagnosed and treated for late effect side effects. Our quality of life has dramatically changed. Our once capable and exceptional skills have diminished or totally vanished. Stripped away by the very therapy that saved our life. It's a nightmare.... An ever chasing demon within our minds. Having us look over our shoulder, ever fearful of what will get us next? What else will I lose? In order to raise awareness, we need to raise our voices. Be heard in numbers through social media, news media, radio, TV, video channels. Whatever ways and means available until we get action. And then we still don't shut up. My friend, Steph, at MyHeartYourHands.org, is diligently placing all her energy into raising awareness of cancer therapy late effect side effects. Here's a video she created to get things rolling. Please feel free to pass it along. Better yet, come join us in making our cause go viral! ow.ly/mnXqn

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  2. They should never have given you radiation a second time. Sigh. Just wanted to add a few links that others may find helpful:

    http://accidentalamazon.com/blog/2011/08/24/arm-shoulder-pain-after-breast-cancer/

    http://accidentalamazon.com/blog/2011/06/01/adapting-practical-stuff-for-hands-arms/

    xoxo, Kathi

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  3. Shame on the BC docs for not knowing and adding more radiation! am, alas, quite familiar with neuropathic pain (Hodgkins 1968!) A med called Neurontin helped me a lot, you might want to ask about it. (European name, it might be called something else, but you can google it) Meds originally made for epilepsy sometimes work for neuropathic pain for some reason.

    I hope you can find some relief, no one should have to suffer those levels of pain, esp the torture of what I always describe as electric fire ants.

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  4. Hey Judee - Hodgkins treatments seem to like to fester and then show their ugliness when we least expect it. Yes, I have tried Neurontin... it wasn't real helpful for me, plus gave me super space head. The Cymbalta seems to help me the most.
    Thanks for the well wishes. I hope your pain issues stay small!

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  5. Hi Cindy,

    I actually discovered this post while Googling RIBP after seeing it on your Twitter profile. This post was one of the first results on the first page for "RIBP." Good work. I'm so glad you have this high visibility because this is such a supportive post for people affected by this condition. I am sorry you had to do your own research to uncover a cause for your symptoms, but I'm glad that your research and the accessibility of this information empowered you -- and now, your readers.

    Great to connect with you yesterday and today. I have a few health problems that I've been especially struggling with lately. You gave me a boost. Thank you.

    -Ashley

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  6. Hey Ashley - I'm glad you were able to find my blog post on RIBP... and more importantly, I hope it has helped. Another great resource is at http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm
    I look forward to communicating more with you.... always happy to make a new friend! Please take care and keep in touch! :)

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  7. I am so glad to have found this site. Suffering from RIBP is not fun. I started with the symtoms of numbness and tingling in my right hand about 5 years ago. After seeing several physicians and a batter of tests, it was concluded that I had RIBP. I woke up one morning last week and my brain wouldn't connect with the muscles in my right arm. Needless to say, I am progressing with this disease. The shoulder pain is at times unbearable. I am going in for a cortisone shot tomorrow to see if I can alleviate some of the pain. I am wondering if exercise is ok, such as the pully and stretching my arm out on a table. Does anyone know? I would do anything to keep this at bay but am very afraid that it might be fugile.
    Shari

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  8. I'm very saddened to hear you too are suffering from RIBP. To put it in a nutshell, IT SUCKS! Last night was rough for trying to sleep. The constant pain and feeling of bees buzzing around my arm and hand, stinging here and there, like they are trying to get out. Believe me, I want them out!

    As far as stretching and exercise.... I have had several visits to a PT clinic (with a prescription from my Doc) that helped me a great deal ad far as range of motion and easy stretching techniques. It is well worth the visits. They are careful not to over stretch and tear any tissues in the process. Our tissues are so scarred, they tighten up and restrict movement. If you can, give it a try. Hopefully it will help. I also see a great massage therapist.... It feels so wonderful to have my back, neck, shoulder, and arm, massaged. She massages my hand too, but unfortunately I don't feel that anymore. :(

    Keep me posted, and do whatever you can to find some relief.

    Cin

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  9. Cindy,

    I was diagnosed with RIBP in June 2013 after seeing countless “specialists” since October 2012. I noticed something wrong last Labor Day while putting up siding on the house my wife and I are building on our property we bought for retirement. Just couldn’t swing the hammer over my head. It started with some weakness in my arm and hand and it’s progressed to the point where I can barely type and the dexterity of my right hand is diminishing weekly. The numbness, weakness and tingling is also something that only those with RIBP could understand. Annoying just doesn’t cover it.

    I was diagnosed with Unknown Primary Cancer in August, 2004 and the tumor in my right Axilla grew to the size of a baseball (about 10 cm) by November 2012. The cancer was very aggressive and none of the chemo cocktails slowed it down, although a couple of the chemo treatments almost killed me. We’re still not sure where the cancer metastasized from but we know where it found its new home. I had radiation treatments 5 days a week for 6 weeks—November/December, 2004—and had chemo twice a day during that time to “enhance” the radiation treatments. The boost phase (last week) was amazing. I still have scars on my back from where it missed the tumor and burned the skin. It’s amazing that the procedure I believe saved my life (shrunk the tumor to a reasonable size that could be removed) is now screwing it up. Can’t complain though…I’m alive and had 8 good years in remission before experiencing this newfound challenge.

    Typing is a real challenge these days, as is anything that doesn’t involve caveman activities. I can still work on the house—just built a new deck and arbor—but the finer movements, like using a pen or pencil, aren’t happening. I recently applied and was accepted to take a voluntary layoff so I’ll be “retired” this September. The RIBP had a major part in that decision. I want to get as much done before this gets much worse. I’ll turn 63 this December. I’m still going to the gym and will try acupuncture, magnetic therapy, and possibly massage to stem the progression. It may be wishful thinking but I have to do something, no matter how pointless it is. Good for the mind. We’re all attracted to illusion and slight of hand. Right? BTW, the pun was intended. I’m also a woodworker and was to build my “dream” shop upon retirement but that will have to wait until I have more tests and data points to determine how fast this is progressing. So far, it’s moving along at an undesirable pace. We’ll see. I’m putting in a large organic garden in September so there are always backups to my retirement plan. I always have a plan to back up a plan. And I found that my positive attitude got me through cancer and the treatments that I did for 18 months. So, why stop now?

    Well, I’ll stop pecking at the keyboard and read all of the comments listed here. Thanks for posting your information and inviting others, like me, to share, vent, offer suggestions…whatever. Cheers!

    Gordon Sampson
    Pearland, Texas

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  10. In addition to what I posted earlier, I would like to thank you for the insight to an issue few doctors can grasp. I've had nerve pain in my right shoulder and Axilla from the surgery, Valentine's Day 2005, due to all the nerves that were cut or damaged during the removal of the tumor. My right arm and hand are now experiencing moderate pain. I have a very high tolerance for pain and this has been mostly annoying until this week. I did a lot of heavy lifting and work this past weekend and I'm paying for it this week. I thought exercise would help the problem but, after reading your words, I'm not sure that is a wise thing to do. I'm seeing my oncologist and surgeon in September (annual checkup) at MD Anderson and will ask them if they have any insight to this issue. Thanks again.

    Gordon

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    1. Hi Gordon! Thank you for your comments.... I'm glad they were actually able to diagnose you with RIBP.... Only from the side of the ability to now do so. It took me a two week trip to NYC to get a real meaning and understanding of the chronic pain and loss of muscle in my right arm and and. When you go to MD Anderson, tell your doc to reach out to Dr Michael Stubblefield at MSKCC. He is my RIBP hero! He has a few You Tube videos out there that were recorded at MSKCC on the subject of Radiation Induced Fibrosis that are interesting to watch. As we also have major scar tissue develop. It was sad for me to learn that the "the more you use it, the quicker you lose it" when it comes down to nerve damage and muscle mass. :( I thought I ended to work my right arm, and hand harder to build back muscle..... Wrong in this situation.. And, like you, when I do use it more than usual, I pay for it later.... Ive learned to do many things left handed, than i ever knew would be possible. Crap happens to us, we adjust, and keep rolling. Keep me posted on your annual check at MD Anderson. They may have more insight and possibly better treatment plans established. Hang onto that hammer!

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    2. Thanks for the reply Cindy. The hand has gotten worse in the last month and I can barely lift my fingers to the keys to type this. I'm looking into Trigger Point Therapy also to ease the pain in my back and arm. I'll keep you posted after the MD Anderson visit on September 28 & 29.

      Gordon

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  11. Gordon (Woodworker) - would you be comfortable with contacting me directly through email? My email is cindy.graeff@gmail.com I'd like to discuss your RIBP a bit further. Thanks!

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  12. After 3-4 years of going to Drs about numbness, pain and lack of strength in my left hand and arm - and having 3 surgeries - a neurologist diagnosed RIBP yesterday. I had been asking the many Drs I saw if the cancer I had 20 years ago could be the cause. I now understand RIBP is so new that the Drs don't even know about it. I'm scheduling another MRI to rule out cancer - but the neurologist is confident with his diagnosis. I'm now beginning to research RIBP and am feeling very overwhelmed. There is limited (and conflicting) information such as exercising - and it's upsetting that even the Oncologist I have been going to for the past 4 years (thinking it could have a cancer connection) -- even HE didn't have any idea my symptoms had anything to do with the treatment/radiation I received. I have gone to have acupuncture for the pain and have had some success -- and will continue to use that resource. After reading material on the web I'm also concerned about my lung and heart. RIBP is extremely frightening. I don't even know what kind of a Dr to go to to oversee this. Cindy -- thank you for your blog -- it's given me valuable information.

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  13. Nora - Hello! It is so discouraging to me to hear how the medical field is not paying attention to the late-effect side effects cancer survivors will have. I am in the midst of writing a new blog post about RIBP and it's continued toll on quality of life, along with some of the fact finding I believe would be helpful to cancer survivors. This would be facts anyone can take to their doctor/oncologist.
    I found a physiatrist who knew very little about RIBP. Although she was willing and wanting to obtain the knowledge necessary to help me. And she did.
    Since RIBP is not reversible, and it has no magic pill to make it go away, we all suffer the collateral damage of the very radiation therapy that saved our lives. Now, our quality of life has changed, and will continue to change throughout the rest of our lives,
    To help answer the 'What else may be expected?' - your heart health is extremely important. I recommend finding an Oncology Cardiologist to take a look at your heart health. We are our own best advocate Nora.... We are always fighting. More to come, on the RIBP devastating late complications we are facing, soon!

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  14. And.... more importantly, you are not alone.... RIBP affects all too many cancer survivors. I am very glad I was able to help you, Nora!

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    1. Thanks Cindy -- your information is extremely helpful. I'm now in the process of meeting with Drs so they hear about RIBP. So far I've only met the one (neurologist) who knows anything. Meeting with my GP today and will take what little info I've collected to far. I KNOW there are many of us dealing with this and your site is such a positive resource of us. The Dr that diagnosed me didn't know of anyone else in this area -- I know there are though. We all need to continue to get the word out. And lastly, as you are probably very aware -- it REALLY helps to know I'm not alone. Thank you -- and my thoughts are with you on your journey.

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