Hi friends,

As some of you might know, I finally had an appt with a really good RSD doctor. My husband drove me from Rhode Island to southern Jersey (very near where I grew up!) to meet with Dr. Philip Getson. What an awesome man!!

After meeting with me and talking about my history for only about 10 minutes, he figured out the source of my RSD - Brachial Plexus nerve injury. And although the orthopedic surgeon I saw over 3 years ago when I hurt myself diagnosed an operable rotator cuff, in reality the tear was never big enough to have caused the pain that I had at the time or subsquent to the incident. (I hurt myself carrying a heavy workbag at work -one of those big boxy black ones- as a CPA, tossing up into the back my SUV at the end of a long, long day after carrying too far, too long, when it was too heavy, etc.... I should have been issued a bag with wheels by my employer. Amazingly enough, my employer did puchase some bags with wheels shortly before I was injured, but they were being given to new (young!!!) hires).

A simple arm test, if performed by my ortho surgeon, would have demonstrated that my right brachial plexus nerves were injured. A doc I saw in NYC a few months ago did the arm test and figured it out right away. Dr. Getson took the analysis even further, explaining how my muscles and the related nerve bundle were stretched and damaged the day I hurt myself. Even though I did tear my rotator cuff at the same time, it was a minor tear. Almost everyone has a tear in their shoulders by the time they are older and most people live with them just fine. The amount of pain I was experiencing was far in excess of what would have been justified by the rotator cuff problem. My problem, instead, has always been my brachial plexus nerve bundle. It resides in your chest and sends out tendrils like the rays of the sun to your arm, neck, face, trunk of your body, etc.

What happened next is a nightmare - horrible, aggressive PT by an Army reservist who hurt me way more than was reasonable, and which stretched and aggravated the brachial plexus nerves even worse, my liberal use of ICE to chill the pain, and then surgery because the surgeon said my pain levels were so high it was the only way to get better. And after that, the same thing happened all over again (aggressive PT and ICE) and I had a 2nd surgery a year later(same surgeon). Nerve testing performed between the 2 surgeries didn't pick up on the problem, but I was scared of the tests and was heavily medicated. Only one set of nerve tests have been ordered during the entire course of my illness.

I feel so, so stupid and so ripped off and so sad. The physical therapists who hurt me so badly all worked directly for my surgeon - he is the Director of PT for his group of orthopedic surgeons. He is also reputed to be the best shoulder guy in RI. So I trusted him and didn't seek a 2nd opinion. I was in so much pain I thought he must be right. I didn't hear the term "RSD" until a few months subsequent to the 2nd surgery.

Review of my PT notes reads like a definition of RSD for the 1.5 years I was under his care - burning, stabbing, throbbing, on fire. When you can't trust the best person in the State to take care of you (even if it is the smallest state in the country), what's left?? BTW, I wrote letters to the PT's, giving them links to the RSDSA.org, so that they would hopefully never do to another patient what they did to me.

So 3 years later I'm DESPERATELY waiting for WC court to PLEASE approve ketamine infusions so I can hopefully become well enough to go back to work.

I'd just like to know if there is anyone else out there that has a similar background like mine? Where have you have all turned under these circumstances? How do you ever mentally get over this stuff? As if that's not enough, I've been beat up by WC ever since the RSD diagnosis was made.

I am trying Mindfulness. Trying. My appts. with a shrink were cut off by WC, but in the 10 appts that they let me have I did learn about that.

Sorry this is so long. Another one of my rants.... as always, thanks for listening.

XOXOX Sandy