The Struggle, the Pain, and Misdiagnosis.

  Hello there, I'm a 25 year old male, that was, until recently, a life long commercial fisherman with extreme physical capabilities and overall, blessed by good health. Overnight my life was turned upside down, and literally torn apart. I hope through my experience others can get comfort in relating, and gain the will to stay positive every moment forward.

 It all started suddenly one morning about two weeks before thanksgiving o8'. I awoke with a pain in my right shoulder and arm that resonated all day. That evening it got a little more intense but sleep-able. The next morning and day, still there. That evening it got even worse, bad enough to actually loose sleep. The third evening, Bang, it felt like my elbow and shoulder was being torn apart from the inside by hot dull pliers. I also experienced extreme sensitivity to touching and moving.

 With no medical coverage, I held off the #10 scale suicidal pains with black market pills(Without them I would be fishing with Davey Jones fore sure!) for about four weeks before I finally was drug  to the ER. The Dr.'s answer was more drugs and c-spine pictures. The MRI showed a small protrusion on the c5-c6.

 A typical month wait for a neurological visit then led to possible neck surgery due to cervical spinal stenosis. But during that month wait, symptoms changed slightly. The pain was still there, but the agony was replaced by numbness of the forearm and fingers as well as loss of function of my thumb and pointer finger. But the prognosis was still the  neck. At the time of my pre-opp appointment my pain was only there if I tried to extend my arm straight or up, and lots more numbness. At the last second my neurosurgeon wanted an EMG test to confirm the nerves involved. The EMG test showed that there were alot more nerves involved than a little cervical pinch off. Everything was then changed to a diagnosis of Brachial Plexus Neuritis(Parsonage Turner Syndrome). It was a good thing to avoid sugery, but PTS is only healed with time, full recovery time is 2-5 years for 90%.

 This is a paralizing disorder, literally. Currently the pain is gone, but the wasting of nerves and muscle atrophy is still there. My finger movement is slightly improving every day as well. It has been about four months since the begining of pain. I start more physical therapy soon, and I pray to overcome this lesson. I also pray that people facing the knife with similar circumstances get the right diagnosis. Be as absolutey honest, and detailed as possible with your doctor, and yourself. I questioned living, your damn right I questioned my doctors.

 I wish this upon no one for it is the most painfull and de-humanizing thing I've ever encountered, but to be positive, and keep loving is the only cure.      Love trumps fear,God bless

 

ResonantBlueHand ResonantBlueHand
22-25
2 Responses Feb 17, 2009

hi there my name is joy and i have a son who is 31, he was diagnosed with bpn 9 years ago and was realy left untreated for 8 years until last year when he had a muscle transfer,they took a muscle from his back and put it in his arm but it did not work, so they are going to do another one where they take a muscle from the inside of his thigh and put it in his side and hope that he will be able to lift his arm,i was wondering has anyone gone through this would love to hear from you <br />
<br />
joy

brachial plexus or parsonage turner syndrome has no cure,, muscle operations do not work,, recovery usually takes almost 5 yrs but some never recover and have recurring episodes,, there is absolutely nothing you can do but to see if any agency can help to give him at least financial security

I am glad that you have gotten that right diagnosis, and wish you luck with your recovery.