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!