Need some lymph sisters

lionessdoe

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!

ktym

lionessdoes, don't know what to say, hopefully others will, just wanted to send hugs and tell you how sorry I am that you are going through this.

kcshreve

Rude, arrogant, condescending, ignorant, cold-hearted individual, that one.  Can your LE therapist do the dx, measurements, and report instead? 

Anonymous

Oh, lionessdoe, I am sorry you're dr. isn't listening to your concerns or taking them seriously. I've been in your position of having my doctors deny the existence of lymphedema and a problem with my implant. Ugh! I agree it might be a good idea to go back to your LE therapist for measurements and diagnosis. My LANA LE therapist actually suggested I see a LE physiatrist (an M.D.) for further insight into my situation. She has been very helpful. 

Glad you are doing your part in providing this dr. with articles and info. We do need to make sure our sisters that come after us are treated better. It really is one hospital at a time! 

kira66715

Doe, although size discrepancy is the usual method of measurement, if you treat your LE, the size may be equal or smaller--I've also been told I'd don't have LE because my arm is smaller--because I treat it. (I believe you need a 2 cm size discrepancy to justify insurance--and I've argued that if your blood pressure comes down on meds, do you still have hypertension? Or is it now treated hypertension?)

Here's the thing: as far as I know, there is no licensure, or board certification to allow one to call oneself a lymphedema specialist. Usually these doctors are rehab medicine--physiatrists--but I just found out that by taking the one day lecture at the NLN (which wasn't all that helpful...) I could sit for the LANA certification. 

So, I would kind of research his credentials. How did he become the LE doctor? What is his training in LE?

I recently reviewd the on-line physician course for a major training school, and it's really good, but after watching it, again, I am not in any position of being an expert.

So, the problem in LE is that there is no standard for diagnosis--I'd love to see a perometry reading on your arm--and no standard for physicians to declare themselves expert in it. And you will find entrenched belief systems--all the time.

You know I have a literature file, and can send you articles, but also, Binney has a HUGE file on RIBP.

There are no doctors in my area who treat LE: just therapists. 

Kira

I was looking for references, and went on Joe Zuther's blog, and this article from Cancer is good:

It's free full article

http://caonline.amcancersoc.org/cgi/content/full/59/1/8

Binney4

Doe, I do have a very comprehensive file on RIBP research, compliments of our own bc.org research guru, Beesie. PM me if you're interested. As you're probably aware, there are no magic bullets in any of it, but at least it does prove there's such a thing as RIBP, and you could be unlucky enough to own that diagnosis.

Who did you see in Ann Arbor? They have a good center for traumatic BP, but they can't help with RIBP, yes?

Why on earth should we have to prove this to our doctors?!!!

Let me know how I can help. Hugs!
Binney

Medigal

Lioness:  I am SO proud to read that even with the problems you have to combat that you still have the determination and power to stand up to that "doctor".  I am so very sick of doctors thinking we are their victims instead of patients and if we don't agree with everything they tell us, they feel we are tarnishing their "God" complex!   My doctors can't stand it when I remind them they have forgotten to put down a necessary test on my lab report and I won't take it unless they do.  I "backseat" drive my doctors and don't care if they despise me as long as they make the correct necessary choices for my health.  They DON'T know it all and we patients have to be willing to confront them.  I am so glad to read you are doing your part.  They are only human and make mistakes but BOY they sure don't like being shown their mistakes!  I hope you get your mess straightened out.  It is sad we have to go through such measures to get the care we need.

KittyDog

What is RAGE? 

So sorry he is a  a s s.     Send him lots of info. Maybe you will get lucky and he will read it.

Binney4

Abby, Radiation Action Group Exposure (R.A.G.E.) is a UK group that has long been advocating for legislation in the UK that acknowledges and seeks preventions and cures for radiation-caused conditions like RIBP. They don't have a website, to my knowledge, but they do publish a print newsletter you can subscribe to. I believe that's the group that Doe's referring to. There's a British site that explains their concerns and the causes of RIBP here:

http://www.cancernetwork.com/display/article/10165/67858

Be well!
Binney

KittyDog

Thanks Binney.  It was a new term for me. 

toomuch

The article that KIRA posted is one of the best that I've seen and read about LE. Thanks so much for posting it!

Suzybelle

Doe, I read your post several days ago and have no advice to give other than this - don't give up.  You have been on my mind ever since I read your experience with this doctor...and I have just been thinking about you ever since.  It's weird how you get to 'know' people that you've never even met!

You have been through so much, and have kept right on plugging.  I cannot tell you how much I admire you for that.   So that's all I have to offer here - just know that people recognize your strength and your persistence, and it definitely makes a difference.  You are one of my heroes.   Give 'em hell, Doe. 

lionessdoe

Have a busy day. Hope to respond in depth this evening. RAGE does have a web site though:

http://www.rage.webeden.co.uk/

Thanks for all th encouragement and support!

Look for me later!

inspiewriter

Wow, can't believe you are going through that.  So sorry!