Emergency surgery and the sob dr that put an iv in my hand

cinnamonsmiles · February 2013

9 pm enter ER room with severe abdominal pain
immediately told staff no bps or needlesticks in arms due to le
13 pokes in the foot and no iv was able to be started, i was too dehydrated (all i had to drink that day was one can dr. pepper, a glass of milk, and two sips of coke, i wasnt feeling well but was busy)
prior to 3:30 am had xray and ultrasound
diagnoses appendicitis
told surgery would be at 6.30 am/7 am
admitted to hospital at 3.30 am
all staff was well aware of LE and everyone
8 am or so anestheisiologist starts right foot iv with no problem, lab gets blood from left foot no problems
9-10 am i was finally given an IV bag of fluid, so i went 12 hours with no fluids at all
SOMETIME IN THE MORNING THE FUCKING SURGEON COMES IN, i had asked nurses earlier if the surgeon was doing other surgeries, i was told no, he was in the clinic
saw surgeon sometime in the morning, he was telling i had food poisoning even after a definitive diagnoses of appendicitis from radiologist.he asked what i ate, i told him: bowl of oatmeal and a banana, a few cracekrs, and one bite of meatloaf, one bite of mashed potatoes and gravy, one bite of short rib (it was leftover day).surgeon told me my food was bad. i was so exhausted from little sleep, severely dehydrated, and on dilauded and morphine. i told him but i ate off of brian's plate. he asked how is brian? i told him he was fine. surgeon smiled and me and said that that negates that theory. he said he would do surgery and take it out.they may find that it is infected or that there was nothing wrong. he told me he didnt believe i had appendicitis.
10:30 am fever was 102.5 (that rollon the forehead thermometer they have out now was a ful 1.5 degrees lower than a mouth thermometer.i will NEVER let nurses use that kind on me again)
12:40 i was in the OR preop, surgeon must have thought i was out. he was telling staff that i did not have LE, they asked him something and he replied,"SHE (and it was said very sarcastically)said she has it." They asked how he knew I didn't have it and he replied that he looked at my records. He said I didn't have any lymph nodes removed. I was mortified and humiliated. I WAS THINKING ABOUT THIS, I HAD SENTINEL NODES REMOVED, AND HIGHLY DOUBTED THAT HE WENT THROUGH ALL MY PT RECORDS FOR LE, AND MEASUREMENTS, ETC. HE MUST BELIEVE THAT WOMEN WHO HAVE ONLY SENTINEL NODES REMOVED CAN NOT GET LE
2 pm i wake up with an iv in my right hand, the arm/hand, i repeatedly told hosp and surgery staff that that is the arm i ahve the worst trouble with le in
2 nursing staff told me that they knew i was going to be mad
post surgery temp. was 104, my lips were dried and peeling, my mouth was so dry, the nurse slathered lips with vaseline, gave me two sponges of something wet in my mouth
arrived back in hospitial room
two nurses told me that they couldn't figure out why the surgeon put an iv in my le hand, and told the charge nurse who didn't know why either
spent night in hospital because i couldnt be discharged with a fever
last nurse told me that she called the patient advocate for me regarding the surgeons treatment of my case. i told her that i didnt think i had it in me to fight him, he was a pompous ass with the god complex surgeons get
nurse said, but what about for the next patients he has?
patient advocate never saw me before i left
it took them 6.5 to fucking discharge me, the nursing assistant kept telling me nurse was doing paperwork
my IV ran out at around 7.30 am, i had to listen to it beep until 9.40 am, when i called the switchboard and told them i have been listening to it beep for almost two hours and that someone needs to fix it. nursing assistant had some in the room at least three times, the night nurse came in once and told me she would put in a new bag at 8.40 am. she never returned.after the call to the 3rd floor nurses desk, iv bag was changed
later that afternoon, another nurse brought in my paperwork. later the nursing assistant came in and told me the nurse was working on my paperwork, i held up the paperwork and asked really angry...you mean this paperwork and i flapped it in the air.
when the surgeon came in at 8.15 am, he told me that i did in fact have a severely infected appendix.i asked why was my fever 104 when i was done with surgery, did i have that malignant hypothermia reaction to anesthesia (i have never had problems before). SURGEON SAID FEVER WAS FROM THE INFECTED APPENDIX.
I LET ALL NURSES KNOW THAT I THOUGHT HE WAS AN ASS, AND THAT HE HAD AN ANTQUATED, OUTDATED MISINFORMED INFORMATION REGARDING LE AND SENTINEL NODE REMOVAL

SO LADIES, I NEED YOUR HELP. I WILL BE HAVING A FOLLOWUP APPT ON FRIDAY, FEB. 22,2013 AND I NEED CREDIBLE SOURCES TO BRING TO THE APPT. WITH THE SURGEON SO I CAN SHOW HIM. I WILL ALSO HAVE A PATIENT ADOVOCATE THERE WHEN I ASK HIM WHY IT TOOK 15 HOURS (IT WAS ACTUALLY IT WAS 22 HOURS SINCE I PRESENTED THE FIRST SEVERE ABDOMINAL PAIN) TO PERFORM EMERGENCY SURGERY ON AN APPENDIX, WHY HE ARGUED WITH THE ER DR'S AND RADIOLOGISTS DIAGNOSES,AND WHY IN THE FUCKING HELL DID HE FEEL THE NEED TO PUT AN IV IN MY HAND WHEN THERE WAS A WORKING IV IN THE FOOT. HE DISCONNECTED THE CABLE AND PUT IT IN MY HAND. I WAS TOLD IT WAS HIS DECISION TO DO THAT. OTHER STAFF WERE WILLING TO USE THE ONE IN MY FOOT.

I AM ALSO THINKING OF CALLING MEDICARE AND THE HOSPITAL FOR NOT PAYING FOR THE IV PUT IN MY HAND AFTER I WAS FUCKING UNDER ANESTHEISIA. WHY DID HE WAIT TIL I WAS UNDER AND UNRESPONSIVE. THOSE WERE UNNECESSARY SUPPLIES AND TIME CONSIDERING THERE WAS A PERFECT WORKING IV IN MY HAND. AND WHEN I GOT UP TO THE HOSP ROOM, THE NURSES REFUSED TO TAKE THE IV OUT OF MY HAND UNTIL THE LATE MORNING OF MY DISCHARGE.

LATER FRIDAY NIGHT, AROUND 8.15, MY LE SYMPTOMS HAD BEGUN AGAIN. I AHD TOLD ALL NURSES I RAN INTO WHILE BEING TREATED AND NOT BEING TREATED THAT MY LE SYMPTOMS HAD BEEN THE BEST THEY'D BEEN SINCE I'D HAD SURGERY BECAUSE I AHD THE FLU REALLY BAD FOR A MONTH AND COULD HARDLY DO ANYTHING.

UNFORTUNEATELY, I CAN'T GO FOR MEASUREMENTS CUZ IT IS THE WEEKEND AND I CAN'T DRIVE MYSELF AFTER SURGERY.

ANYWAY. SORRY FOR THE LONG RANT, BUT I AMFUCKING PISSED OFF. THAT DAMN SURGEON WAITED UNTIL I WAS UNDER ANESTHESIA BEFORE HE PUT THE IV IN MY HAND. AND ALL STAFF, INCLUDING HIM WAS AWARE OF MY LE AND REFUSAL OF ANY BPS IN THE ARMS OR HANDS. AND HE PICKED THE ARM THAT I TOLD STAFF WAS THE WORST PROBLEM.

ANYWAY, PLEASE HELP ME WITH WEBSITES THAT HAVE PROOF LE CAN BE CAUSED BY SENTINEL NODE REMOVAL. I TOLD STAFF THAT THERE WOULD BE HUNDREDS OF PISSED OF WOMEN ON BC.ORG THAT HAVE LE FROM SENTINEL REMOVAL IF THEY HEAR HIM.

THANKS EVEVERYONE.

liefie · February 2013

Cinnamonsmiles, this is just unbelievable! I had surgery this Wednesday, and all the staff were very aware that I should not get any needles in my left arm at all. There was a big sign up by my bed with this info, and everybody respected that, no questions asked. I don't know where to get the info you need, but somebody will be along shortly to give it to you, I'm sure. This surgeon should be put in his place. What an arrogant fool! So sorry you had to endure this. I'm still shaking my head . . .

SpecialK · February 2013

Did you sign a surgical consent that authorized any and all medical treatment? If this ever happens in the future I recommend that before you sign anything you write and initial an area that refuses to authorize IV placement in your LE arm. Prior to BC I have had surgery where the IV was moved but it is ridiculous that he moved it to your arm when you had stated you did not wish to have it there. Hope this helps.

This is from Dr. Susan Love:

Suffice it to say, the risk of lymphedema ranges from 3-5% after sentinel node biopsy compared to 15-20% after full axillary dissection.

More links:

http://www.lymphedemapeople.com/wiki/doku.php?id=sentinel_node_biopsy

http://www.ncbi.nlm.nih.gov/pubmed/20574774

http://ww5.komen.org/BreastCancer/Lymphedema.html

http://www.cancernetwork.com/display/article/10165/100278

coraleliz · February 2013

Cinnamon-sorry to hear about you recent surgery & associated nightmare. I had outpatient surgery in December. My surgeon was great. I told him I couldn't have IVs or BPs in either arm. He told me "no problem" & that an IV could be placed in my foot or neck & my leg could be used for BPs. The nurses were GREAT about this. One offered to tape up my arms & write no IVs or BPs. I told her if I "crashed" my left arm could be used. It's my most problematic but my non-dominant hand. The aneasthesiologist showed up & started an IV in my foot/ankle area. He then told me he didn't think it was neccessay for me to go thru life having to have IVs & BPs in my lower extremities. Uhh!!!!.....I DON'T MIND!

I went into surgery with an IV in my foot & a BP cuff on my leg. I could hear some discussion about having to set up the room differently. I guess the anesthesiologist likes to stand at the head of the bed & not the foot. My surgery was only an hour long & my IV lasted. Your experience makes me rethink how I'll handle future surgeries(I'd like to think there won't be anymore-but I think the anesthesiologist was right-(sigh) I'll need more IVs in my lifetime.

Hope your recovery is going well. You certainly don't deserve anymore problems. Take care.

Ariom · February 2013

What adreadful experience you had Cinnamon. If it isn't bad enough that you are that ill, I know what appendicitis is like, you have to encounter this jerk.

I don't get what this is about, wouldn't you think if there was even the tiniest possibility that someone could get LE that, being a trained physician, with knowledge in this area, or so you'd expect, you'd do anything possible to make sure this wouldn't be possible. What happened to "Cause No Harm?" I wonder, just what was the point he was trying to prove?

Too late now for this Hospitlisation, but I saw online there are sleeves that you can buy that are an alert not to use that arm. I have told my family that they have to remember to tell Doctors if I can't, and that I want it written on my arm in marker pen. I only had the Sentinel Node removed too, but I am not taking any chances if I have anything to say about it.

I would definitely be writing a formal complaint to the Hospital too.

I hope you get well soon.

purple32 · February 2013

WHY DID HE WAIT TIL I WAS UNDER AND UNRESPONSIVE.

That's obvious!
He was a pompous ASS and deserves to be SUED. No less ! I would see an atty asap. Then get LEist and all drs to gather copies of your records. The records you will want asap are those surgical ones...BEFORE they could be altered! Ask for them asap.

Yes, if I am conscious...anything I sign will say WARNING: LE left side ABOVE my signature, I can tell you that . I will ask my husband to do the same if I am out of it.

Your DR said " SHE" says she has it. Who does he expect to say it your lymphedemadologist? There are no damn drs for LE! grrrrr!

I am So so sorry you had an ASS for a dr! My first LEist was also a cancer pt ( survivor ?) She said she was considering switching PCPs because every single time she goes he says she is " silly' because she want her BP taklen in her uaffected arm and each and evry time he harasses her about it ! WTH! WHO would go to such a pompous ass intentionally ?!

I am soooooooo angry for you ....Pls consider a lawsuit to send the message for all of us and to get some compensation for yourself.

Also- I think your best website is SUSO:

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

cinnamonsmiles · February 2013

I don't know what I signed. I was pumped up dialuded and morphine for around 14 hours at the time of surgery. There was a sign above my bed that no IVs or BPS in BOTH arms. That pompous ass was the ONLY medical staff personnel who had a problem with me.

It would not have mattered whether or not I had written anything on my LE arms or hands. This surgeon would have ignored it just like he ignored my oral requests AND notification from staff that I didn't want any needles or bps in the right arm especially.

My surgery was only an hour long or so as well. As far as the anesthesiologist needing to stand at the foot of the bed, I heard staff commenting that it was the SURGEON who requested the change of IV. And there are two sides of a damn bed to stand on if the IV is in the foot.

KittyDog · February 2013

good info on this blog.

http://www.lymphedemablog.com/

and of course

http://www.stepup-speakout.org/

Kicks · February 2013

I'd be wanting to know why the anethesilogist (sp?) had changed the site he/she had established a good line, that they were 'happy' with, changed it. Makes no sense unless perhaps it had occluded. He/She is the one responsible for maintaining you while the surgeon does the surgery.

nibbana · February 2013

cinnamon,

I'd contact a malpractice attorney.

I think if I needed emergency surgery or any surgery, I would write in Sharpie all over my arms, no bp cuff, no IV, no needle sticks. Then I'd say, "If I find any IVs or cuffs on my arm when I wake up, I have the number of a malpractice attorney in my phone."

That surgeon was ridiculous. If I ever meet someone like that I will say, "Let's save some time here. Can I have the name of your malpractice insurance carrier so I can start the paperwork now?"

Nurse_Lizzie · February 2013

Cinnamonsmiles - I am professionally appalled by the behavior that this surgeon displayed. You most definitely need to take some action here, but you do need to be mindful of not appearing hysterical and out of control.

First, when you make your scheduled follow up appointment with him, absolutely bring an advocate with you. During this appointment, please tell him verbally that you were distressed about his actions, and as appropriate, give him the research articles with you. Carefully observe and have your advocate document his response to you. However, do not engage him in a debate.

Additionally, you should be contacting the hospital administration and registering formally a complaint about this physician (consider doing it AFTER your appointment, not before). Speak to a hospital administrator, which depending on the size of the organization, could start with the OR manager, or you may want to start with the administration office. You probably will be asked to present your complaint in writing..

You also should contact your state medical practice board and file a complaint with them too. You can find them on the Internet, and there should be instructions on how to file a complaint.

Finally, speaking to an attorney is an option, and one you may want to consider. However, if there was no harm, there may not be much basis for a suit. However, only a lawyer can help you with that.

Oh yes, and absolutely request a copy of your medical records. Start writing down everything you can recall about that day. Good luck

Nurse Lizzie

kira66715 · February 2013

Cinnamon: There are several issues here

1) The delay to surgery, which put you at risk of a perforation

2) The lack of treatment of your very high fever: did you have a microperforation and perionitis? It should have been treated, or at the very least, evaluated.

3) the "gold standard" now for diagnosing appendicitis is a CT, so why this guy questioned it is unfathomable.

4) He will argue that there is no good evidence that an IV will exacerbate LE: and there are no good studies as it is unethical and no one has done them. He'll argue that in an emergency he needed a line he could count on, but you can counter that with a functioning foot line, he went against your express wishes and started an unnecessary line in your hand, which could exacerbate your LE--sometimes permanently--especially if something irritating was put in the IV and/or the IV infiltrated

5) Totally agree about NOT getting a lawyer: the standard is high to prove that harm was done, and you have three years to pursue it

6) But as someone who just met with the head of the board of licensure and discipline in medicine for my state (for a job, not because I'm in trouble....) the board's job is to protect patients. A complaint to the board will be investigated, and if you decide to make on, include all the information on LE you can find, as they'll likely know little about it.

The key points are: delay in treatment (this is a malpractice) which caused a possible microperforation and infection and the surgeon stating that you were lying about your LE and he deliberately moved the line for his preference, but not for any medical need.

I think it's best to assume that everyone has no understanding of LE, and work on educating them, and and explaining that you felt mistreated in several ways, the delay, the line, the nurses leaving you with an empty bag.

Write it all down and sort it out when you have the strength and energy.

Hope you're on the mend.

cinnamonsmiles · February 2013

Kira,It ended up NOT being an emergency surgery. I entered the Er room at 9 pm 2/13/13. The surgeon refused to perform the appendectomy until after 12 PM on 2/14/14. Two anestheisiologists put the IV in my foot around 8-9 am so the IV was in use for several hours prior to surgery with no problems.

I was in so much pain and had had two dliauded shots, at least two morphine shots and multiple anti-nauseous shots. It is easy to say, this is what I would do in this situation, but for me, I told all staff that I did not want any IVS or BPS in teh right arm especially.If I had written no IVS or BPS on my arm, worn marked sleeves, this asshole would have done the same thing.I thought that all staff would honor my oral request. The ONLY one who didn't was the surgeon. In fact, one anesthesiologist remember me from my previous two surgeries there.

cinnamonsmiles · February 2013

Kicks: When I arrived back in my room after surgery, the nurse disconnected the IV line from the hand and reinserted the tubing into the foot IV. I used the foot IV unti I was discharged in the after noon on 2/15/13. It was such a good IV line, that I was able to walk to the bathroom and back to bed with never a problems.

Did I mention that the nurses made me listen to my IV beep for over two hours while the bag went empty? I rang for the nursing assistant several times. She would come in the room, silence it, but it only stayed silent till the door shut on her way out. It wasn't until I called the hospital switchboard operator to call the nursing desk on my floor and told them that my IV had been beeping for two hours straight, that I had a headache, and it was time for someone to fix it. THEN my nurse came in and put a new IV bag on.

coraleliz · February 2013

Cinnamon-not trying to defend the person who put the IV in your hand, but sometimes they need more than one IV line. See what your operative report says. You do have another leg & an IV can also be placed in the neck.

Estel · February 2013

cinnamon- ((((((((((((((hugs)))))))))))))))

Good advice here already and I can't add anything.

So sorry this has happened to you.

I am scared to death of my local doctors and my local hospital...I've had nurses slam doors on me because I refused BP on my arm and that is just in a doctor's office. I shudder to think what would happen if I were hospitalized and put under.

My mother worked in same day surgery and could she tell stories of some of the arrogant ass docs.

If I ever have a choice I'm not getting treated here because of their ignorance but I know that sometimes we don't have a choice. I am just sorry and I pray for complete and total healing, no progression ...of the LE.

purple32 · February 2013

I'm sorry but if it is malpractice then get a lawyer. file a complaint, do all kira suggested and then, file a malpractice suit.

IVS or BPS on my arm, worn marked sleeves, this asshole would have done the same thing.I thought that all staff would honor my oral request. The ONLY one who didn't was the surgeon

I SOOOO hear and believe you on this ! This person deserves to be punished and you deserve justice. I was only suggesting ( for all of us ) to write LE ...no this or no that ABOVE our consent signature for the future so it might be easier to handle with an atty IF need be. In your case, I would get one- now.

As for the 'no harm done' (?)- this could worsen your LE permanently. You have to live with that worry .,..the anxiety enough should be harm enough.

purple32. Hope is our light ... in the night.
Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 05/01/2012 Lumpectomy (Left)

purple32 · February 2013

The key points are: delay in treatment (this is a malpractice) which caused a possible microperforation and infection and the surgeon stating that you were lying about your LE and he deliberately moved the line for his preference, but not for any medical need.

If this is malpractice, then why not get an atty ?

just perplexed

itsjustme10 · February 2013

Where does Cinammonsmiles live, and how do you know what the malpractice laws are in her state or country? What elements have to be proven in her local court for it to be malpractice? Does she even have damages that rise to the level of malpractice? Shoulda, woulda, coulda doesn't matter without there being a serious problem resulting from the doctor's actions.

OMG, why not help her get her thoughts together for her meeting (and tell her that if she uses the language she used in her post in the meeting, no one will listen to her), instead of sending her on a witch-hunt that may or may not be feasible? That's the only thing that makes sense....let her get the doctor censured by the ethics committee in the hospital.

This "sue him, sue him" mentality is the exact reason for the expensive medical care in the US.

dlb823 · February 2013

WoW!!! No words of advice, cinnamon, but just wanted to say, I'm so sorry that happened to you. Unless it's a life & death situation with no other choice available, no doctor should ever be allowed to ignore or override your wishes re. where you have an IV. This doctor sounds way beyond pompous. He sounds callous and cruel, and his actions delaying your surgery could have endangered your life if your appendix had burst. Without hearing his side of things, some type of action to ensure he doesn't do this to others in the future sounds entirely reasonable to me, although I would caution you that a malpractice action can make it very difficult to get any doctor to treat you in the future, as no one will want to risk that sort of experience with you, even if you are in the right this time. So hopefully, you can get satisfaction short of needing to do that. JMO... Deanna

purple32 · February 2013

I don't know, itsjustme- she would have to contact an atty for legal advice in her state . I said : " why not get an atty?"

There is a P.M. feature if you want details about what state she lives in etc .. if you think you can help.

As for her language, I'm going to go out on a limb here and guess that cinnamon would not use that language with a lawyer , a patient advocate or in a courtroom. I believe she is terribly and understandably upset right now. I think it would be next to impossible to help her gather her thoughts at this juncture and through an internet forum no less . I only know what I would do, and that would be to seek legal advice. After that, I may or may not act upon it.

All ANY of us can tell her is how WE would feel and what WE would do. Thats what a support forum is all about - empathy.

itsjustme10 · February 2013

Thank you for your quite interesting suggestion about PM's, purple...but I believe that if I have something to say, I say it in public, and have no need to PM anyone.

I obviously don't have the same close personal relationship with the OP that you do, if you know her thought process, and how she usually speaks and writes, but I am more than happy to take your word on that... most of the adults I know, when they express themselves using the written word, manage to do so with a self-censor... it's not heat of the moment when it's written...

Empathy is not throwing gas on a burning fire. Empathy is understanding what the person is saying, and trying to help them deal with their situation. Empathy here would be to acknowledge she was upset, and try to offer HELPFUL ways of taking action - such as speaking properly with the hospital grievance committee, and suggesting the doctor take courses in LE and in patient relations, and perhaps issue an apology to her. Thankfully, she has no lasting effects according to her story, so that's all that is needed to calm the situation and still acknowledge that she was wronged.

Unless you're the only WE who gets to say how "WE feel and what "WE" would do? And "WE" don't get to disagree with YOU?

purple32 · February 2013

Thank you for the lesson on empathy, itsjustme.

WE is a collective word to include ALL of us. I am having trouble understanding how you might imagine that it was meant otherwise.

You are correct - I surely do believe cinnamon was speaking in the heat of the moment. I find it interesting that you imply she should censor herself as you declare you will say whatever you like- and publicly. I believe that is precisely what she did .

As for throwing gas on the fire, I said what I believed also as WE are all entitled to do - the only difference is that most of us do not hop on and start to judge . As for what harm was done, it is most unfortunate that none of us knows that yet.

I surely hope I am never in her situation or that you or any of us ...WE find ourselves there.

Binney4 · February 2013

Cinnamon, in answer to your original question, have you found the sources you need to and are comfortable with for this Friday's appointment? As you look over your sources, are there gaps you need help filling? If so, please let us know so we can scrounge our collections of studies and such and mount the best possible mountain of incriminating evidence.

By the way, I'm one of those with bilateral LE after removal of one node on the side with cancer and a prophylactic mastectomy on the other, so I too find his ignorance offensive. Not uncommon, just offensive. On the other hand, LE can be caused by ANY breast surgery--even those completely unassociated with cancer. It can be caused by trauma to the chest too, which is why auto accidents where somebody slams into their steering wheel can result in LE. Football players sometimes develop it too, same reason. In Haiti after that horrific earthquake there was an "epidemic" of LE from all the crush injuries to arms and legs. Still, doctors as a whole are not aware of LE, and surgeons in particular tend to downplay it, so educating this one will be a huge help to many women coming along behind you. Not only his patients, either, since he'll undoubtedly have lots to say to his colleagues after this Friday's meeting!

YES! You go, Cinnamon!
Gentle hugs, and please keep us posted,
Binney

itsjustme10 · February 2013

Well, purple, unlike you, I was trying to give her practical information - I hope she goes into her meeting, conducts herself well, and gets the hospital administration to listen to her concerns - it's a bigger deal than what happned to her - it could happen to anyone, and if she can conduct herself ina professional manner, much good can come out of a bad situation. She is in the unique position to be able to educate an institution on a topic that is over-looked, misunderstood, and has much misinformation out there. I personally hope hits a home run in there!! Is that what "WE" are allowed to think and say?

Have a nice day, this is the last post of yours that I will respond to.

carol57 · February 2013

Cinnamon,

Do you have a strategy in place, in case he blows you off as you try to educate him at your meeting? What I mean is, this person does not sound like someone who is going to respond well to anything he remotely interprets as challenging his expertise or authority. So I am hoping that you are prepared to diffuse things if he dismisses your attempt to engage in a lymphedema conversation. One thought is to have a well organized binder of information, with a table of contents-- one topic might be LE incidence studies; another risk-reduction practices; another your PT visit/measurement history. As Binney said, our little LE community here can help you gather resources, such as studies.

If the guy pushes back or attempts to change the subject, you might then use what in negotiations practice is called a 'reflective' statement--something you say to acknowledge another's position without agreeing with it. For example: "Doctor, I understand that in your experience, you've not seen patients get lymphedema after sentinel node biopsy." With luck, that makes him pause, because you're not challenging his position or statement. Then, something like: "I don't imagine you had time during the rush to surgery to scour my full medical record, but I've been treated for LE since (date). I'd like to share with you some studies of LE incidence after sentinel node biopsy, and thinking that you don't have time to go over them with me today, I put together a few printed pieces for you to look at later."

Forgive me for trying to be so specific here, but I teach a negotiations class (in the financial world, so of course, it's different and maybe egos are not such a problem there!). Reading this conversation thread, I can see some potential pitfalls in your meeting and thought I'd just share what I know to work in some similar circumstances. You are a brave woman to confront the fellow's uneducated preconceived ideas, especially on the heels of what is of course, a very understandable emotional reaction to what happened to you.

Best wishes and if you haven't found studies on LE/SNB yet --perhaps you've had some help with that already via PMs--just ask.

SpecialK · February 2013

carol - I threw some LE/SNB specific links in my first post - hopefullly they are useful.

cinnamonsmiles · February 2013

I can not print off any informational pages from stepup-speakout.org. They have copy blocked all their webpages. I tried to email them, but my hotmail does not allow me to email stepup-speakout.org because it does not follow the proper domain of name@example.com.

I found the phone number and left a message of the basic information, and that I wanted copies of certain webpages.

Those web pages are a crucial part of my information for my follow up appointment with the surgeon this Friday, February 22, 2013.

I have been going through websites today, and I have to be very careful about which ones I choose. One that was recommended on here, actaully downplays the rold of sentinel lymph node removal and LE. I need to choose very carefully because I am sure this surgeon has his own arsenal.

Thank you to those of you who are offering emotional support, as well, as informational sites, and kira, who broke down the greivances for me.

kira66715 · February 2013

Cinnamon: I sent you a pm about SUSO: Jane is away and she controls the site, but please use any info you find helpful.

Carol is the master of negotiation. I think the point is just to keep it simple.

I teach medical students and we teach a section on medical error, and the theme is so consistent: patients just want validation, someone to say they're sorry (a policy now endorsed by risk management and many major medical centers--notably U of Michigan started it).

My advice is to keep it simple: express your concerns and let them know how it has impacted you

For example--the post op fever--if it truly was a reaction to anesthia, that's a medical emergency and a small perforation and peritonitis is also a significant medical concern.

I would keep it simple, not expect much other than being heard. Ask for future meetings--let them digest this and respond, and Carol's negotiation techniques are so important.

My daughter had a horrible experience during a hospitalization and I just answered the questionarre with the concerns: a serious medication reaction, discharged while unstable, and about a month later I got a hostile several page letter from a VP that "she sufered no permanent harm". Not the way to build bridges

cinnamonsmiles · February 2013

I changed how the printer prints the info. from stepup-speakout.org. I can now print things. When I used the easy way to print it, it wouldn't work. When I went in and choose a different way to print things, it would print.

It is interesting that people say "no harm done." There are issues of needless prolonged pain, dehydration, and the emotional aspects of being put through something like this. The emotional aspects are far worse, in my mind, because they can last much longer than physical pain. And the emotional side can affect our physical well being...high blood pressure, tightening chests which effects the breathing, headaches, panic attacks, decreased cognitive functioning due to high amounts of stress...We all know, that diagnoses of cancer and the treatments, can give some people PTSD. So yes, there is harm done in instances of clear medical malpractice.

Do I want to sue? Sure, I would love to sue them for undue amounts of pain and dehydration and putting my life at risk by delaying surgery, but for the devastating emotional effects. Do I think I will, probably not.

However, like kira states, and I will be using that quote when I speak with hospital management, that I want vallidation that the surgeon put me at a danger risk for my appendix rupturing, that they let me writhe in pain and dehydrated for over 12 hours, that the surgeon flat out lied to staff about me not having any lymph nodes removed, when I have hard copy of the pathology report stating that I had sentinel nodes removed bilaterally and one axially node removed on the right side, that the surgeon argued with me a few hours before surgery that despite a definitive diagnoses from the radiologist and ER doctor that I had appendicitis he choose to go over everything I ate and drank that day, thinking that I had food poisoning until somewhere in the dilauded and morphine filled brain, I told them I ate those three bites off of Brian's plate and that he was fine.

I want the surgeon and the hospital to be in trouble with the medical review board, I want them to admit they were horribly wrong, and I want an apology (especially from the surgeon who I think needs a big lesson in humility, but am not expecting one from him).

Once again I want to thank almost of all you for you help and support. Everyone is so busy and for you to take the time to help me is appreciated more than you will every know.

kira66715 · February 2013

Cinnamon: here is the definition of malignant hyperthermia--it's a very serious condition, and it runs in families:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002292/

"Repeated episodes or untreated episodes can cause kidney failure. Untreated episodes can be fatal."

I really hope you're treated with respect and validation.

Emergency surgery and the sob dr that put an iv in my hand

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