United Brachial Plexus Network, Inc.

Gary,
I would try to see a specialist at Mayo Clinic in Rochester, MN. Drs. Spinner, Bishop and Shen may be of help. I think I have the same thing (Parsonage Turner Syndrome) you have except mine is unilateral with complete paralysis of rt. deltoid. My appt. is in mid March. There are surgeries which may help. I am 45 and in excellent health otherwise and mine occurred immediately after a cervical laminectomy.
Jerry

Gary,
This may seem like a dumb question, but did you ever get a cervical MRI? Did they rule out degenerated discs, spinal cord compression?

yes in fact thats what they thought it was at first a cervial problem ,then i ran across a web site that showed a man with his arm drooping like mine.at that moment i knew bpi is what i had altho the cervical problem does mimic bpi a lot thanks for that input tho gary

hi Jerry sorry about your bpi also.......mine just happened out of the blue so they call it virule. at first they did think it was a cervical problem and i thought i was going to have to have the same type of surgery, I suggested they do a emg which showed bi lateral bpi and long thoracic nerve damage, with both ulnar nerves shot......I do think that last two were caused by the bpi, it also has given me a frozen shoulder but were afriad to fix that for fear of falring up my bpi. my pain has lessoned but it still is a big issue, till this happened i was in fantastic shape for a man my age thanks for your input jerry
gary

Garytj1,
I saw Dr. Mackinnon in St. Louis about 2 weeks ago. She suspects Parsonage Turner which flared up during my 5-level cervical laminectomy on Oct. 16th. She said she has seen about 7 cases in the past year or so and all with the same symptoms. 6 cases resolved themselves w/in a year. She can do a nerve transfer in my case if it doesn't heal before 1 year has passed. I am getting another opinion at Mayo since the appt. was already scheduled. I don't mind paying and I am eager hear their thoughts. Good luck. Jerry

Hello. my name is Gary i am a 52 yr old male... been in good shape all my life, 2 yrs ago i noticed my tricept in my left arm was gone, but i had no pain. then aproximately a yr ago i woke up in terrible pain.....after many test i told my doctor i thought i had a bpi injury finnaly they gave me a upper body emg which showed bi lateral bpi along with long thoracic nerve damage and both ulnar nerves were shot also.....i have no idea how this happened. doc says its virule which basicaly means they dont know why. im in horrible pain and have been on fentanyl for almost a yr now. i have no stamina , i sleep or try to 12 to 14 hours a day, since i wake up every two hours...i am having to take a medical retirement.......im so angry all these yrs i kept myself in such good shape and i wake up like this one day........my life has totally changed........does anyone have any suggestions??? doctors here dont even seem to know as much as i do about this. i guess in some ways im lucky my arms still work , but the muscles are highly atrophied. the smartest thing i think i did was when this first was happening it felt like my muscles were shrinking , so i got in my hot tub nightly and kept my arms stretched out, i see on some sites it mentions spontaneous recovery, i surely have no faith in that...i had almost 30 yrs in at gm and was looking forward to retiring young and this happened to me... can anyone help me???? i am sorry for the rest of you and your pain. and im not a great typist Gary