Surgery Question

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teachermom4
teachermom4 Member Posts: 101
edited October 2014 in Lymphedema

Hi All,

I am going to have my exchange on 9/11 (still tough to type that date...) and have a question. After my BMX I was told no needles or blood pressure cuffs in my arms since I had lymph nodes removed on both sides (3 on one side, 2 on the other). Since then, I have asked to have my bp taken on my ankle and blood draws in my hands. Should this be the case during the exchange surgery? I know they always have that automatic bp cuff on the arm--will that be a problem? I sure don't want lymphodema if I can prevent it? Also, will they run all the anesthesia through an iv in my hand? What has anyone else experienced?

Thanks!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2014

    teacher, It is very good for you to prepare. No one wants LE that's for sure.  A good website to get all your answers and more is stepup-speakout.org. Some girls here from our boards developed that fantastic LE(lymphedema) site. Meanwhile others will come on here to guide you.

    When I was at risk and had my exchange surgery I asked for all foot draws including even anesthesia and was given them. I got LE somehow many years later maybe from a sunburn and fire burns.

    When a person has arm LE that means the whole arm and hand are not to be needled or bp'd. This includes the upper quarter of your body also. Think of a chicken when it is quartered. Trunk ,arm ,hand is involved and at risk. 

    So for me I have my draws done on my foot and bp should be done on legs. 

    Make sure you write with a sharpie pen on your arm in big letters" no needles or bp in these arms" because although your doc may know, the nurses on duty may not. I woke up after surgery doped up and saw a nurse coming towards my arm with a needle. Thank goodness I was alert enough to tell her no. She then put up a warning sign in big letters above the bed which was a fantastic idea.

    Seeing  that you are at risk on both sides due to nodes out. I would definately search the website I gave you for preparing for surgery while at risk. Be well, be smart, be LE educated for life and do keep asking us questions.

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited September 2014

    For every one of my surgeries, as the various members of the surgical team came to meet me in pre-op, I told each of them in no uncertain terms that I was to have no right arm or hand procedures at all, and that I did not want to wake up with a BP cuff, IV, or any thing else on my right arm or in my right hand. I had the pre-op nurse do what hugz suggested - write No Rt Arm Procedures - BP/IV/Needles. I also had them write it on the surgical consent form before I signed it.  

    I got the feeling a few times that some of the staff thought I was being melodramatic, but I'm the one that has to live with LE for the rest of my life, not them. 

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  • Kicks
    Kicks Member Posts: 4,131
    edited September 2014

    I'm sure some others will have better info than I have on this than I do as I had a UMX so have one arm 'useable' (that has great veins).  I was told that UMX/LE side was 'off limits' for BP and draws and that 'arm'  INCLUDES hand also.

    I don't know for sure but it would seem logical that using the right size cuff (larger) for leg that the BP machine could be run using leg.  There has to be ways to handle without using arms  -  some literally have no arms.   

    I've had 4 surgeries (2 cataract, wrist, detached retina) since UMX and LE, all staff I dealt with were very knowledgeable and proactive in being sure my LE arm was not 'messed with'. (Well, wrist surgery was on LE side and my LE guy was in surgery and wrapped above bandage immediately.)

    Write down all your concerns and take them with you to the pre-surgery appt and get answers.  If you do not feel comfortable the what,you are told - keep pushing for answers.  Take a pencil/pen and write down what you are told - or record on cell.  It's easy to, think you can remember all the questions but it is easy to forget some.

    Just MY thoughts/experiences.  I'm sure others, with more more experience with BMX will have (possibly/probably) better ideas for your situtaion now.

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  • teachermom4
    teachermom4 Member Posts: 101
    edited September 2014

    Thanks everyone--this was really helpful information. I have run into nurses at my pcp office who have questioned me when I've asked for the bp in my leg and it's made me feel a little silly. Of course there's nothing silly about it and I will definitely speak up on Thurs.

    Wishing everyone health and peace

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  • clmtootie
    clmtootie Member Posts: 63
    edited October 2014

    Teachermom4 how did your exchange surgery go?  What did you end up doing about the IV's, blood pressure, blood draws for the surgery?  I know it has been a little over a month since you posted but though I would ask in case you do log in here and see it. 

    I'm curious, I have my pre-op testing scheduled for 11/20 and my exchange is scheduled for 12/11/14 and I have already begun wondering what do I do about all of that.  It seems by what I have been reading that most places won't do anything unless it is a written order by a doctor.  I'm also concerned about a foot draw as I have read it does put an increased risk for DVT.  I'm at risk on both arms, 1 node on left and 4 nodes on right. 

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  • Jbug
    Jbug Member Posts: 4
    edited October 2014

    This is not a recommendation but my experience and the decision I made on this topic.

    I asked my surgeon this same question when I knew that I was having a SLN biopsy on both sides (one was for a known cancer and the other for a possible cancer). She told me that having one or two nodes removed shouldn't be reason enough to avoid BP and blood draws. She said that it is extremely rare that one missing node would cause a backup of lymph fluid given how many other nodes are still there. I was extremely glad to hear this because having BP taken on my leg in the hospital was quite painful and I can only imagine what having blood drawn from my foot would feel like. So, my good arm is the SLN side (one node removed) and the ALND arm is protected. I have had many, many BPs taken and lots of blood drawn on my right arm plus 3 outpatient surgeries over the past 18 months where I used this arm for the IV. I was also told that I should seek immediate attention at the first sign of lymphedema so I keep awatchful eye and try to avoid infections (treat hangnails, scratches and bug bites immediately).

    I do believe you must have a doctor's note for blood draws from any place other than your arms. I'm assuming most doctors tell their patients to avoid BP and needle stick after a SLN biopsy but when you have a large number of lymph nodes removed from one side and only one on the other you have to weigh the possibilities and how this affects the rest of your life. I recommend that you ask your surgeons this question and see what they think the risk is if only one lymph node is removed. Best of luck to all you!

    http://www.mayoclinic.org/tests-procedures/sentinel-node-biopsy/basics/risks/prc-20013550

     

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited October 2014

    I recently had sinus surgery and was worried about my LE side, I was so glad to arrive at the hospital and have them give me a bright pink wrist band with a DO NOT--- on my wrist.  I hardly even had to ask.

    Certainly bring it to their attention but maybe you will be surprised in a good way!

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  • clmtootie
    clmtootie Member Posts: 63
    edited October 2014

    That is good to know Jbug about doing everything on the side with just the single node removed.  I did just recently have my flu shot and had them do it in my left arm which only had the single node removed.  I didn't have any issues with it.  My SIL had a BMX 11 years ago, on her left side she had 17 nodes removed and the right was 5 nodes. She always uses the right since it was only 5 nodes for everything and said she has never had an issue. 

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