I have been diagnosed with Parsonage-Turner Syndrome

[miserbank0312]

Robinj,
Let me know if you'd like copies of my tests. It may shed some light. I was never to the point of a disability as I work in an office and do no real physical work. Pain is limited to right index finger which hurts ALL of the time. Arm strength is very poor but I can swing a golf club, snow ski, run, bike, etc. I can't throw a ball or anything like that but I am thankful of the return of movement even w/o the muscle strength. I am always willing to share information I have gathered. Having a wife who is a doctor and using her friends in the medical community was very helpful. I know I have received exceptional care. Take care. Jerry in Indy

[rbwalton]

Hi Robinj
You are not alone. I recently was diagnosed with Parsonage Turner Syndrome. Difference is that mine just happened, and was not found after a surgery. But, from what I have seen on the web, other cases have been reported after surgery- so it is possible that the surgery had an impact on this. That is not to say it was caused by something the surgeon did that he or she should not have done.

I have had two incidences of this since 2000. The first time, I lost most of my right hand. That gradually has returned, but I still have a ways to go. Then in 2006, I had the second attack- this time, it took out my long thoracic nerve, so I have winging in my right scapula. From what I hear, recovery can be good, but generally is not to 100% of original movement or strength.

MRI of arm and shoulder showed nothing significant. EMG was a pain, and showed nothing both times I had it. A couple of weeks ago, I finally got MRI of my neck to rule out syrinx.

All I know is I have a recurring BPN of unknown cause. They suspect a virus. Some suggest it could also be an immune system response. Doctors are not much help so far.


Syrinx could be caused by trauma. Maybe your surgery could have triggered that? I am not sure the surgery you had would result in syrinx, but that is one thing the MRI of your neck could show.

Good Luck!
Richard


Message was edited by: rbwalton

[sommersuz]

Dear Robyn thank you thank you thank you. I went in on august 6,2008 for the same cervical fusion as you only to come out exactly as you. Absolute exact symptoms to the nail. Amazingly exact. I too am going, had to have been the surgery to which the neurosurgeon says "absolutely not." Wish there was some way t contact you. I'm not sure that you still check into this site. The pain for the past 3 weeks has almost put me into suicidal thoughts. Have always been an extremely touch girl...until this. Have never been in such pain in my entire life! The nights and mornings are almost unbearable. If not for the day time, wherein i get a little relief, i would have already done someting to myself. I am a paralegal in downtown Dallas amd I too, need both arms. As this is relatively new to me, I am just beginning to feel the onset of the financial paralysis, not to mention the paralysis of my arms and then that God-forsaken pain to boot.
Please reply hopefully with some good news! Suzanne Sommer

[ptrefam]

Suzanne,
If you click on Robin's login name it will take you to a page with more info including e-mail address. This may help you get in touch.

Sorry, I don't have info for you as my son seems to be in a minority with no pain, so far, from his bpi.
Sue