Need some lymph sisters

Had three doc appointments today. My lymphedema doctor is the Director of the Lymphedema Clinic of the best rated hospital in three counties. I went to see him today to get my records corrected because at my last appointment he announced (due to morning measurement) there was no lymphedema in my arm. I have a pathology report of lymphedema in my breast from a punch biopsy, but of course not of my arm. When I asked for an evaluation for Radiation Induced brachial plexopathy, he prescribed an MRI of my neck and while handing me a script for PT said "Even if there is nothing found by the MRI, I want you to get some PT any way".

I left there feeling totally unheard and disbelieved. I had the MRI. Of course it showed no significant changes since my last one approximately 8 years earlier. I ignored the script for PT. I was determmined to follow my own gut. Found a RIBP specialist at Uof M in Ann Arbor. Paid a total of $400.00 for out of network services and was told I do have RIBP. I also wanted to update him on this as well and ask for an MRI of my brachial plexus.

First I was told, he "could not change my records to show I have lymphedema in my arm because there was no difference in the measurements of both arms. In fact, my affected side was slightly smaller".

Well..........YEAH! ....... It's my left and I'm a rightie. I take very good care and keep the swelling down with massage and compression garments.

I challenged him on how many times he had an opportunity to measure a lymphers arm circumference or see the bulge of lymph collection in their arm pit in the evening?

Then I updated him on what the RIBP doc said. 

He totally anialated me!

He said there was no pain involved with Radiation Induced Brachial Plexopathy.

He said I couldn't have it because it never occurs as early as mine did. I started complaining about pain in my neck and jaw during radiation. It all grew non stop from there. That was February of 2008.

I flat out told him he was wrong.

I got the same ol', same ol' ..... I'm the doctor, you're the patient routine and maybe you should continue seeing the other doctor (She's a surgeon for Crist's sake!) and blah! blah! blah!

So now I'm on a mission. Cuz you see, it's not just about me. It never is. It's about all the women who walk through the doors of that clinic he runs and all the women he sees in his office.

I just finished printing out every web MD, Pub med, Step Up - Speak Out, etc, etc, etc, document I could get my hands on. This guy is in need of an education. I couldn't get the RAGE to print, not even with a copy and paste because they use a white font. Even changing page colors didn't help!

One hospital at a time girls! I originally was diagnosed at Karmanos (a cancer Institute). But the idea that measurement only is the criteria for lymphedema at this hospital just infuriates me. And I'm stuck with this guy, if I don't want to lose what I have left (which isn't much), seeing an out of network doctor. So I told him, "No, I want to keep you as my doctor but, you are wrong."

So he measured my arm again and I felt his anger when he did, he pulled that tape so tight around my arm it hurt. Trying so hard to prove to me I didn't know what I was talking about.

Later during my appointment with my oncologist, whom I totallly trust, I asked for advice. He suggested sending articles, writing him a letter and having the RIBP doc give him a call. Which I am doing.

But I want help. Kira, Binney, please PM me! We're talking three counties or more of women. He's just got to hear from someone other than me!