Topic: radiation-induced brachial plexopathy

Well girls it has been a while since I have posted a note here mainly because the several medical providers (including myself) (oxymoron here) were trying to identify where this horrific pain was coming from in my Right arm.  The Left arm behaves like a typical (if you can call this that we have typical) lymphedema arm. So after 3 very long weeks of no physical therapy to allow the lymphnodes in the axilla to enlarge enouge to do their thing I guess to the nerves wherever they are, arepeat EMG was performed and I was blessed again with another diagnosis of Mild Brachial plexopathy...no motor response of the ulnar nerve...I'm right hand dominant and still work full time.  Am I nuts or what???  So here I sit alone in the living room with tears steaming dowm my face wondering what is next?  My oncologist supposedly is not impressed with the findings on the EMG, problem is I never had radiation treatments so what is causing the brachial plexopathy and who the HE.. is going to do something about it before it gets any worse? I can't get her nurse to call me back with any recommendations.  My physiatrist is mad at himself because the first EMG he did was "normal", he never checked the brachial plexus even though I was telling him I was having symptoms...he listened to a colleague of his who is also my boss who convinced him there was nothing wrong and now he has egg on his face.  I'm just so lost right now.  Hope has gone out the window, work has become more difficult and the pain is just wearing on me.  Nothing seems to help decrease it.  I'm taking 600mg of Neurontin every 6 hours and 900mg at bedtime to no affect.  I don't sleep for two to three days then I crash because of sheer exhaustion.  I'm really lost here and am not sure how much longer I can cope with this.  My friends have dissappeared and my parents are indifferent at this time because this has gone on too long.  They are also concerned about an older sibling who is overweight and needs a knee replacement.  It's hard to explain but it's the Greek way.  If any of you ladies have any suggestions as how to cope or other treatment options, I'm game, please let me know because I'm flat out exhausted.  Don't know where to go from here or how this happened.  Really baffled.  Thank you in advance for reading.

Brachial Plexus Signs Are Usually Caused By Tumor Infiltration Or Injury From Radiation Therapy

In patients with cancer, brachial plexus signs are usually caused by tumor infiltration or injury from radiation therapy (RT). We analyzed 100 cases of brachial plexopathy to determine which clinical criteria helped differentiate tumor from radiation injury. Seventy-eight patients had tumor and 22 had radiation injury. Severe pain occurred in 80% of tumor patients but in only 19% of patients with radiation injury. The lower trunk was involved in 72% of the tumors. Seventy-eight percent of the radiation injuries affected the upper plexus (C5-6). Horner syndrome was more common in tumor, and lymphedema in radiation injury. The time from RT to onset of plexus symptoms, and the dose of RT, also differed.

Tina, Watts..Ladies...Mom asked me if I had posted recently and I told her about Tina's post.  She says don't stop asking questions Tina.  BP is not just caused by radiation, or tumors, it can also be from injury.  Do you have a neurosurgeon?  Have them find the cause..it takes more then an EMG.  She is keeping you in her prayers, she knows that the pain is the hardest thing to deal with...

Mom herself has  been on an interesting journey...Since being diagnosed with Horner's syndrome she has been experiencing the worst pains ever....so the Drs have begun the switch from Lyrica to Neurontin with Lexapro as a stop gap.  Poor girl has been in bed for a week!!  She is now up to the full dose of the Neurontin so we are hoping the quezy stomach will end.

She has also had an EKG and there seems to be an irregularity..we are now going to become aquainted with the cardiologist. 

If I understand everything that I have read,  there is a rare chance for delayed radiation damage to the heart.  This can manifest itself in one of three ways, congestive heart faillure, valve damage or muscle damage.  We already know that she has scar tissue in the upper lobe of her lung, which is causing the Horner's...We are also aware that some of the symptoms she has been having are heart problem symptoms..I will keep you posted as to the results of her cardiologist visit.

She is also having what I think is called an Ulnar Nerve Transposition.  They hope that this will keep the Ulnar Nerve from becoming so irritated when she bends her arm.  This seems to be one of the biggest causes of her pain.

The good news is that her lymphedema has been under control, and she has actually been down further than when she first started with the therapist 8 years ago.!!

This RIBP is such an enigma.  Each of you have had different responses, some have progressed a small amount and others like Mom have total paralysis of the appendage.  PT and, Exercise...may help those with mild damage,..but it will not stop any progression if you are going to progress.  Mom exercised regularly and had physical therapy, all to no avail.

But not to despair...My mother just celebrated her 10th anniversary.  She was stage 4 IDC,  we thank God everyday that she is with us.

May you each find a few moments of peace today.

Terri 

Terri , Binney, ladies,

I just want to thank you so much for your encouragement, sharing your experiences (Terri your Mom's) and sharing such valuable information! It means so much. We struggle daily with our condition. WOW! Congratulations to you Connie for every day of those ten years! 

We have to keep going, taking it one day at a time.

Take care....

Watts 

Hi Everybody, 

I'm making do, and I know we all have to...The nerve pain doesn't know when to quit!  I'm sorry you all have this to deal with, but at the same time, I welcome your company. I am adding a Jovi-Pak vest to my night time attire.  What a sexy babe I am!!!

Keep well,

Ralpha

I have trauma induced brachial plexopathy, from  a car wreck 30 years ago.   The moon phases are not as much a factor as the barometric pressure reading.  The higher it is, the stronger the pain (for me).   And I am one of what they said was 10% of the population, who are radial artery dominant - meaning the major blood flow in my arms is thru the radial artery.   Since I had left side lumpectomy and my bp is left arm (also my dominant arm), I fear for lymphedema.  So far, so good but my hands are very sensitive to cold and I wear gloves when it is near or below 50 degrees.  I call it my fashion statement !!!!    Isotoner gloves work very well for the neuropathy also.   

I was fortunate enough to have out patient therapy at a hand rehabilitation unit of a large rehab facility.   It took over a year to make a fist.  My hand surgeon - 7 reconstructive surgeries - was a plastic surgeon, specializing in hands.   I know much of this is not the same as any of you have, but sometimes a thought turns into a question for the doctor or therapist and things improve.    

OH, another thing, I have cervical disc disease and that has caused "flares" of pain radiating down my arm.   Heat helps, as do various medications...   Here's hoping you all have a pain free rest of the week and restful sleep.   Hugs,   Nancy

edited to correct spelling, I hope !! 

Oh, my goodness, Terri, a great "gadget"! Is this the one she has?

http://www.acehardware.com/product/index.jsp?productId=3703109

(Actually looks great for anybody, especially with kids.)

Sorry about the full "dance card," but looking forward with you to some great new dance moves! Thanks for keeping us posted.

Hugs,
Binney

Hi!

I have RIBP as a result of radiation and the arm suffers from cold even when it is not cold.  I was able to get relief after 3 sessions of acupuncture then she told me to comeback when I need it. I had to wait for her to return from vacation to started again. I am now on the second treatment and it is getting better.  The acupuncture helps mainly with the cold, some of pain and it also helps the shoulder. I did not expect the shoulder to act up at this early stage.  I did not mention to the acupuncturist that she should not put needles in the affected arm.  Last summer I did get an infection in the arm and I don't mind the trade off.  Thank You everyone for being there.   I think the thing that hurts me the most is to be told that some are worst off.  I don't see how that minimizes my pain and sense of loss.....   

God bless you all

Anita