Can't believe medical negligence of PA regarding LE

cinnamonsmiles

EDITED TO ADD: THIS DIDN'T HAPPEN TO ME, IT HAPPENED TO SOMEONE ELSE WHO POSTED IT ON ANOTHER WEBSITE. i NEEDED A PLACE WHERE I CAN UNLOAD HOW UPSET I AM WITH PEOPLE WHO UNDERSTAND HOW MADDENING THIS IS.  I can not explain how pissed off I was when I read this from another breast cancer discussion boards. The PA this woman had should be repremanded if not fired. This is what she wrote:

Hi, has anyone else had problems with doctors who refuse to listen to your wishes about not doing IVs on the affected arm? I am scheduled to have a shoulder replacement surgery on my left shoulder two weeks from today. I had a mastectomy on my right side thirteen years ago. I have not developed lymphedema. I believe it is in part due to the fact that I have been following the precautions since the day after my mastectomy. I only had five lymph nodes removed because I had a sentinal node biopsy during the surgery. The PA who was doing the pre-op visit for my shoulder surgery just laughed at me when I told him that I couldn't have IVs in my right arm. He said my worries about lymphedema are ridiculous, " that it is so rare it's not even an issue anymore." I was shocked and upset with his attitude. he said "we are putting it in your right arm, end of story."
What would you do?

EDITED TO ADD... This was not from my and one of my doctor's....if you read thebolded first part,it is something written by someone other than me, regarding HER trip to the PA.

 

lisa-e

I had recently had a hip replacement.  As I have had a bmx, with lymph nodes out on each side, I didn't want to use my arms for IV's or blood draws.  I also didn't want to use my non- surgical leg, for two reasons;  I've had cellulitis three times in that leg and that leg would also be in the way during surgery.  I talked with my primary care doctor about the situation during my pre-op physical.  He stated that I would need a central line placed for surgery and post surgery in his clearance to my ortho surgeon.  That information was then given to the anesthesiologist.  I didn't have a problem.  The central line worked out well and was less painful than having an IV in my foot (I've had that in the past).

I would talk to your primary care doctor and your surgeon's patients care coordinator, if he has one.

pupmom

Unbelievable! I would have walked out and found somebody to complain to. 

Marple

Cinnamon~your Dr. is very poorly informed about LE.  If you do a search on these boards about risks for LE you will find plenty to back up your fear.  Until you get this problem resolved I would not go ahead with the surgery.  He is flat out ignoring your concerns and he is 100% wrong when he says your worries about developing LE are ridiculous.

Leah_S

Cinnamon, if I were you I would make it very clear at the time of the surgery that you refuse to have your right arm used for IV or BP. If your left arm can't be used (which makes sense since that's where the surgery is) than BP can be done on your leg, as can IV. IV can also be done on your neck.

You might want to write on your surgical permission form that you do not permit any procedures whatsoever on the right arm. Some women, as a reminder, have written on their arm "no IVs or BP".

And, of course, complain loudly to anyone and everyone about this PA.

Leah

Marple

Cinnamon~this link may be of some help.   http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Estel

cinnamon - I saw that post on the other bc board.  I am beyond mad!  I responded over there ... but that doctor was an arrogant, ignorant fool.

I too directed her to the suso site.

hugz4u

Find out if your hospital where your surgery is has a consent form. Mine did. Sign that you don't want your arms used for IV. When you meet your anesthetic doc talk to him as he makes the decisions for the operation. Mine was a doll.



Regarding my MD, he heartily laughed at me when I presented the fact that I could get LE. Oh you will ever get that! Stupid, stupid man, because he had obviously heard of LE before. He now sees me in a glove,sleeve and compression shaper! Yes, ........I want to wrap his body tight in my bandages and stick him on top of the Seattle space needle.

carol57

Yikes. In addition to directing misinformed medical folks to SUSO (where you can download a handy handout designed just for them), I can give anyone who's interested a pdf of a 65-page LE how-to written for nurses.  Maybe print it out, and hand it over to the nay-saying clinicians, and say you'll continue the discussion after they've read the book? I gave it to my primary care doc, who admitted quite honestly that she knows almost nothing about LE, and it was ummm..a real conversation starter.  

It's so sad, but true that LE education has become largely the patient responsibility.  My motto on this is 'tag, we're it.' I don't think we can do enough educating, because not only do we have to fill in the blanks for the uninformed, we regrettably have to correct the misinformed.

Carol

coraleliz

I am not suprised by this at all. It's just sooooooooo wrong!! I am a nurse & if someone tells me I can't use their arm, I don't. Even B4 BC, I would never argue.

At the hospital where I work, I'm required to get a flu shot or sign a declaration & wear a mask when caring for patients beginning Nov 1st. I asked to get the vaccine in my leg because of my bilateral LE risk(BMX with nodes taked on both sides). It went to the medical director & the decision was that only my arms could be used because that is the only site the manufacturer tested the vaccine. The employee health nurse also told me that she spoke to the manager of the oncology unit & asked how they handle this situation with patients. She was told that they get doctor approval to use one arm & that patients in my situation do get IVs & BPs in at risk arms. Sounds like assault to me(imagining myself in that situation). I pray to God I never end up on the oncology unit. For outpaient,elective surgery I "think" I could negotiate with the anesthesiologist.

This stuff just makes my blood boil!

exbrnxgrl

If I am reading the op correctly, this did not happen to cinnamonsmiles, nor was the medical professional a doctor, but a PA. However, the person who it did happen to should voice her complaint loud and clear to her surgeon and insist that the PA become educated on LE. If I were that woman, I would delay the shoulder replacement, unless there is an urgent reason not to, until my medical team were very clear amount LE risks.

Caryn

purple32

My LE therapist  ( a BC survivor) told me the other day that she is thinking of switching DRS because each and every time she goes to hers , he tries to convince her to have the BP taken on the affected side !  ( why ?)

She said the last time he cajoled her saying" C,mon. One time wont matter!"

it rather reminded me of the 16 yr old boy who gets a girl pregant that one time he doesnt use a condom... for some sensual pleasure.

One kind of  a nutjob is this man ?

What pleasure would he get out of " winning" this battle with her.

I URGED her to leave him and let him now why - for all of us who have LE and all at risk.

Sickos out there!

carol57

The problem is the lack of solid evidence to prove that BPs, needle sticks, etc. are risky for those with at at-risk for LE. A while back, Kira posted about an article that a physician wrote--it was horrible--calling all these kinds of risk-reduction practices a myth.  That was an irresponsible article to write, and I won't condone it, but it did underscore the problem of not having studies to back up the kinds of guidelines we all prefer to follow, i.e. protecting the LE quadrant from harm.  There are not any real studies that I'm aware of, and for good reason: what kind of researcher is going to take a control group of us and subject us to purposeful BPs, needle sticks, flying without compression, etc., so our LE responses can be documented? Who would volunteer for such a study, even if it were ethical to run it?

So unfortunately, we have no studies to point to, and all those clincians who find it inconvenient to respect arm precautions have probably not seen disaster consequences after doing BP on an LE arm, etc., because I don't suppose the LE flare is immediate, so the nurse, PA or whomever has no clue what happens that evening, the next day, etc.  Add to that the articles, like the one I mention, and including some parts of NLN position papers that seem to give a tepid endorsement at best for some of the risk-reduction practices, and what do we have?  A misinformation mess!

I sometimes wonder if it would be plausible for some of the thousands of women who have LE to participate in a huge LE journal, where we simply make note of cause and effect for LE flares. It could be designed as good quality research; give us forms to log into and have pre-formatted categories with lists of risks to choose from (accidental skin injury, such as cut or burn; medical skin breach, such as IV, blood draw, surgery; BP; limb injury without skin breach; air travel 2 hours or less in one segment; air travel two hours or less in two segments; etc.) and then a place to record what happened (no LE consequence after three days; added swelling within 24 hours; added sensations of heaviness/ache but no added sweling within 24 hours; etc.).  This kind of study would be anecdotal, but if well designed and if thousands of us participated --and we were sure to record incidents where 'nothing happened' as well as incidents where there was an LE flare, or an infection result--good data analysis could help document the risks we worry about.

But that's my dream.  Too bad I am not at a big university with a huge research budget!

Carol

pupmom

A scary thing I think about is what will happen if I am taken unconscious, without DH to speak for me, to the emergency room and can't tell them to leave my right arm alone. Yes I have a medical alert bracelet, but in that situation they might not notice or just choose to ignore it. Ugh, guess one can't plan for every contingency. 

Binney4

Yorkie, I'm a firm advocate of risk reduction practices. In fact, my reply to the doctors who are pooh-poohing risk reduction because there are no studies "proving" it triggers LE, is to remind them there are no studies proving it doesn't either. There are NO studies on the subject that have any validity. So "Do no harm" requires that they remain on the careful side of this issue and leave our arms alone.

Despite my strong feelings on this issue, I also believe that in an emergency the priority is to save your life. After that's safely taken care of (using whatever means is quickest and most readily available) is the time to deal with the LE consequences--and to start educating the attending medical personnel too! So don't worry about that one, Yorkie--you're way more than just a bad arm!

As for Cinnamonsmiles' report about the destructo-PA, thanks to all who helped this woman out on the site where she posted. Unfortunately, we all CAN believe that level of medical negligence, and we have no choice but to stick up for ourselves. Or as Carol put it, "tag, we're it!" (Hmmm, as I recall, tag used to be FUN--this version, not so much).

Carol, I love your idea for studying this. It's just crying out to be done. And the beauty of starting it would be that once a study is actually underway everyone suspends their judgement and waits for the results, so we'd all have a reprieve, at least. Let's see if there's anyone we can interest in this!

Hugs all around, and especially to our poor Sistah on that other board! You can do this, Sistah!
Binney

carol57

Binney, there are several wonderful LE researchers who truly 'get it' that there are more symptoms to LE than just visible or measurable swelling, and allowing for non-swelling symptoms after an 'event' would be so important to discovering the real truth about our bodies' responses to events such as injury, needle sticks, BP, flying, etc.  Jane Armer comes to mind, with her wonderful questionnaire instruments.

The beauty of what I am imagining is that it could be an online registry of participants from literally anywhere, and not necessarily limited to one continuous group of individuals, because the idea would be to connect events to repercussions, not to follow one group of people long term. Patients could opt in as they discover the study. I'm imagining that each time I logged in to report an event, such as cutting myself while cooking, I would identify my already-registered self, and perhaps update the current status of my LE--am I still Stage 0, or has it progressed since the last time I logged in to report something?  Then I would log in one day, three days, and seven days later, to choose from some drop-down window options that describe what happened:  no flare, big flare, little flare, etc., probably with some descriptions of outcomes instead of those simple labels.  Dr. Armer's data mining project with the American LE Framework must already have some of the data architecture this approach would need.

This is easy to imagine, but no doubt much more challenging to design such research in a statistically valid way that would yield the credibility needed to establish evidence-based risk-reduction guidelines.

We can dream, no?

Carol

purple32

Oh, it sounds like a project that could be so enligthening and educational!

Yep, a dream.

but seems so do-able somehow.

dassi52

I really like Carol's idea. Of course, everyone of us has individual LE responses, but I'm sure that if there are lots of people willing to participate, there could be many different "similar" groups. Just our histories should make fascinating and informative study material. As far as all idiot medical personel out there - they just are totally ignorant but unwilling to admit it, so then you get that kind of response.

We are our own best advocates. Maybe we should carry the SUSO pdfs with us when seeing a new MD. I do believe it really depends on the individual MD - if he's arrogant and thinks he knows it all or if he's willing to admit that he doesn't. Let's stay far away from the first kind of MDs. And even better, tell them or write them why we prefer others.

carol57

A research project like this no doubt has design challenges I do not see, and in any case it would be very, very expensive.  So I'm not holding my breath for this to happen. But dassi, it would be a very good idea to drop off the SUSO pdfs every time we visit with a new healthcare provider.  That's a great (and unlike my pie-in-the-sky idea), and practical suggestion!

purple32

depends on the individual MD - if he's arrogant and thinks he knows it all or if he's willing to admit that he doesn't. Let's stay far away from the first kind of MDs.

Which MD?!
There should be a "LE  MD"!  This condition deserves tx from a  medical doctor who is committed to study and research in THIS field. ( sorrry, maye  this was menat for the GRRRR forum !  :>)