My arm surgeon

Stavmom, if I were you I'd ask to see those studies. LE is a chronic and sometimes debilitating condition and, yes, the fluids going through an IV into an arm with LE and the constant BP cuff (it is inflated and checked very frequently during surgery) is a danger.

You said you don't want to question his knowledge to his face but this is a case where you might have to. Ask for the studies. Tell him you want him to use your leg. It's uncomfortable but can be done. When I had my port surgery I had the cuff on my leg (lower leg) and the nurse apologized before she put it on for the increased discomfort. In my case it was actually less uncomfortable than an arm BP. If they are concerned about the difference in leg BP to arm BP (sometimes there is a difference) ask them to take your BP in your non-LE arm before the surgery to compare the values. IVs can be put in your leg or foot, too. If there are objections ask what they would do if they had a patient with only one arm having surgery in that arm!

Best of luck.

Leah

I just had a discussion about this with my rheumatologist.  He wanted to take my blood pressure so I told him that he would need to use a thigh cuff.  He didn't have one, so was unhappy about being twarted.  He said he thinks it is silly to think that a taking blood pressure could trigger a flare up of LE.  I pointed out there were no studies indicating it was safe - he was unhappy.  I told him I have to answer to my LE therapist.  

Stavmom,

It's your body, your arm and you are the one that will have to live with the consequences if the IV and blood pressure cuff aggravated the LE.  Regardless of whether IVs and blood pressure cuffs would make LE worse, your doctor should respect your concerns and find another solution.  Also, you may want to get a G sleeve to wear to alert medical personnel to avoid using your affected arm.  Check out g-sleeve.com.  Good luck to you!

VoraciousReader, Glad you came through the surgery unscathed, hope all continues well.

Leah: If there are objections ask what they would do if they had a patient with only one arm having surgery in that arm!  Very good point     well they would just have to use a leg wouldn't they, unless you're talking highly invasive central lines etc, so if they have no leg cuffs available they better go get one! Have they no paediatric cuffs either, because there are some ladies especially very elderly or oriental ladies with childsize arms: what do they use in the bariatric surgery section? They should have a full range of sizes. You will find the fat men's arm cuff goes round most normal size thighs.

and Stavmom, it's not the surgeon you need to convince its the anaesthetic team. They are the ones normally more holistic, concerned about the whole patient coming out not just with a fixed elbow but generally actually alive and healthy. See if you can talk with them direct?

There are times when it might be medically necessary to have IV in your arm but this isn't one of them. When I had my port surgery they put the IV in my foot… and I wasn't even diagnosed with LE  yet. They automatically gave me pink sleeves to wear on both my arms that said no BP or sticks.

When I needed a CT scan of my liver I had to fight but I got the IV in my foot as demanded. (I think they knew I was about to walk out).

It's your body. Your surgeon may very well believe the IV won't cause LE but the bottom line is if you get it you will be the one dealing with it the rest of your life.

Thanks Hymill. It really was such a tough decision.

I had IVs, blood draws, etc in my feet for a year until my recent recurrence necessitated a port.  IVs in the feet are not fun but not that bad either.  I have even had large bore IVs for CT scans in my feet.  I always insist on bPs in my legs as well.

Good luck!

Lori