The Struggle, the Pain, and Miss Diagnosis.

  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
4 Responses Feb 17, 2009

I now have the same finger/thumb problem as you did, & just been diagnosed BN today - 11 months after initial pains surfaced!. Hope my digits repair, as yours seemed to do, & hope you're fully recovered now.

hi I can certainlyrelate to what you are saying i was diagnosed with brachial plexus.. it is only supposed to happen once or perhaps twice,, i first developed it when i was 22 i am now 61,, not to soung negative,, but i have had 6 episodes the muscle wasting , at least for me continues they then decided i need cervical neck surgery .. they first did it from the front when that did not work,, they did it from the back,,, now all i have is more neck pain. At one time my biceps measured 19 in around they now measure 7.. I hate to say it but there can be many other things most likely caused from brachial plexus;; dental problems, heart disease, and a paralzed diaphram on one side .. I do not know which will get me first ,, but i live every day as best i can . I usually spend at least 3 hrs in the hot tub.. or avery hot shower,, of course i have a cocktail,, although drs frown upon it i figure that i have had enough medical problems so am doing what i can to enjoy.. I do wish that you only have the one episode,, and have a complete recovery,, even if you go through what i have had to endure stay p[ositive because i believe it to be a better alternative then death

Helloo! Was just wondering how you're getting on now? I'm hoping you're going to say you're completely recovered! I started suffering from BN at the start of January 2010 and although the pain has almost gone I'm really struggling with the paralyis part. Would be great to hear how you're doing! Take care x

My total and utter sympathy goes to you and anyone who has had brachial plexus related nerve pain/issues. I had something similar happen to me August 2008. I never got a satisfactory diagnosis because I only saw a GP and not a specialist (long story behind that) but "fixed" myself by reading about the problem figuring out that the nerves (esp median nerve) in my neck / shoulder area were being pinched/compressed because of bad posture / head position issues and spasms in my scalene muscles. It was the WORST pain of my life, did not respond to pain medication, and I will never forget it. I am extremely paranoid that it will return and have altered the way I sleep, sit, etc. to guard against it. My question to you is: Did you have a hard time moving your neck as well? The very worst/most intense pain was in my forearm, elbow and upper arm, but I also was unable to move my neck until it resolved. I am now ok, although if I get tense, slump, or sit wrong for very long, my fingers go numb and I start getting little sparks of pain, but I know how to nip it in the bud /get it stopped.

sounds to me that you have cervial neck problem get an mri to confirm,, if drs decide you need an operation,,, they will want to do it from the front first,, but if you can have them do it from the back because they can do a lot more to make you better .. I have had both operations still have neck problems along with many others but i try to remain positive as it sure beats the alternative