Pasonage Turner Syndrome ///// Look out

Posted by admin in Life, Philly to Colorado May 19th, 2010 | no responses

Last summer I wrote about a mystery and acute pain in my shoulder, neck and right arm with slight paralysis, tingling and numbing in both my right arm and some in my legs. I woke up one Monday morning with most of the symptoms above in varying degrees. I thought it was just something like a bad night of sleep, a stiff neck, riding my bike too much, etc. By the end of the Monday I was in more pain and a my right arm was a little more weak.

As the week progressed this all got worse, with pain ranging on a perceived pain scale of close to 10, the worst pain I have ever had. I went to my primary doctor at the Jefferson Medical Care in the Fairmount section of Philadelphia. I must talk about this doctor, whom I actually never saw, I saw the nurse practicioner and she was less then helpful, at points she even accused me of lying about the pain and told me she knew what real pain was because she had real pain and started to tell me about her issues. She did not listen and accused me of being a liar. She send me on my way with a prescription for tylenol and go see a physical therapist – I was perplexed and frustrated. This place is horrible, do not send yourself or your family there. I have had negative experiences there on more than on occasion, each visit never once seeing the doctor but this nurse practitioner.

So, I left the doctor got my prescription advil and hoped I would wake up the next morning and the pain would be gone, no such luck, it was even worse and my arm was almost rendered useless. I went to work the rest of the week, just toughing it out. At points I was hiding out almost in tears, trying to manage my pain with mental toughness.

We were moving in a few weeks from Philadelphia to Boulder, Co so things were a bit busy and we had plans to go out to dinner with a friend on that Friday. As we sat and eat, I had zero appetite and the pain was even worse, a 11 of 10, basically brought to tears we left dinner and went to Pennsylvania Hospital in Society Hill, Philadelphia. The doctor was helpful and listened, I talked about the pain and where it was localized, she asked the right questions and brought us to find the Winged Scalpula. She was intrigued by the scapula, must not have seen many in her career, other doctors shuffled in and took a look at it. I was truly a freak. She used this a springboard to possibly isolate the problem or cause, she recommened a few doctors and specialists to see. When I called them they treated me like a criminal, man the doctors these days are just plain wrong. I think they are unqualified and have become no more than mechanics of the body with huge attitudes and poor work ethic. Anyhow, after getting nowhere with the doctors I spoke with and the hospital not releasing my test results or documents to me but only to my primary doctor I once again went to my primary in Fairmount ( the bad doctors office – Jefferson Medical Center). Once again the nurse practicioner saw me and treated me like a fool, I got nowhere once again and left empty handed. In a percocete haze I left my new Oakley Sunglasses at the office, when I called about them they played dumb, degenerate office workers stole my glasses!

Fast forward a few months and the pain had more or less gone away, still some days with a little bit. The numbness and tingling would come and go with some mild pain. The arm was still not 100%, only able to lift it up partially into the air. The arm and shoulder was also very weak and I did not really use it that much, for example I could not use my right arm to reach up and change a light bulb.

One morning in Boulder I woke with more pain and tingling than usual so I scheduled an appointment with Dr. Jack Stanley. He was great, listened and although did not know what was going on provided some direction, made some phone calls and within a few weeks we had a diagnosis! Parsonage Turner Syndrome! Dr. Jack, although confident was not an ego maniac like most doctors and I actually saw him! Not some nurse, nurse practicioner or assistant. He got me into Spine West to see Dr. Gronseth, after some poking, prodding, bending and a few other tests he had a diagnosis and it was spot on!

PARSONAGE TURNER SYNDROME!
Parsonage-Turner syndrome (PTS) is a rare syndrome of unknown cause, affecting mainly the lower motor neurons of the brachial plexus. The brachial plexus is a group of nerves that conduct signals from the spine to the shoulder, arm, and hand. PTS is usually characterized by the sudden onset of severe one-sided shoulder pain, followed by paralysis of the shoulder and lack of muscle control in the arm, wrist, or hand several days later. The syndrome can vary greatly in presentation and nerve involvement.

So, there is not much I can do but try and keep it strong and just wait. But, the months leading up to the closure of this was stressful, scary and painful.

Useful Links::
Parsonage Turner Syndrome

http://www.healthline.com/galecontent/parsonage-turner-syndrome

Dr. Jack in Boulder

http://www.flatironshealth.com/

Spine West

http://www.spinewest.com/