Does exchange surgery worsen lymphadema?

mnmbeck

I am new to the "lymphedema" section.  I am not officially diagnosed (my PT said it's too soon to make an official diagnosis), but have swelling in my right arm, hand and had some mild trunk edema.  I am seeing a PT and am in a glove and gauntlet, as well as doing lymph drainage/massage 3-5 times a day, elevating my arm, etc.   There is some improvement, but not a ton.  My surgery was 9 weeks ago.  4 lymph nodes removed (she meant to grab 1, but they were stuck together). I  now understand that it doesn't really matter how many they take. 

This swelling is STUBBORN.  I feel like I can't do anything (housework and dishes!) without it getting a little worse, and I am frustrated and afraid that I'll never go back to life as I knew it.  Not only that, but my biggest concern is the exchange surgery.  It isn't scheduled, yet.  But, I'm guessing it will be in 6-8 weeks.

For anyone who has already gone through this.....what if the swelling isn't gone, yet?  I can't imagine I can do this massage when my mobility is limited and I have fresh scars, and with a new 'insult' to my body....including the breast on the affected side......is this lymph drainage problem likely to get worse? 

carol57

mnmbeck, I had a diep recon so I have no experience with exchange surgery, but I can tell you that my post-surgical swelling seemed to go on for-ev-er, but gradually it improved.  I did end up with mild arm and truncal LE, but it's much better than I ever expected it would be based on those first few months after surgery.  I suspect that your arm and hand swelling does signal LE as opposed to temporary post-surgical swelling, but take heart, because research suggests that early treatment with compression can really help to improve things, so you are taking the right steps. 

I'm pretty sure that there are women in our LE forum who had exchange surgery after their LE diagnosis, so let's hope that your thread will catch some of their attention and you'll hear from some voices of experience.

BayouBabe

I may be an unusual case, but here is my experience.  I had TE placed at time of BMX and was diagnosed with LE shortly there after.  Since my exchange surgery, my swelling has been at a minimum. My LE doctor and I think that the TE, due to their over expansion, must have been contributing to my swelling.  Pinching something or blocking something??? I really don't know.  But am pleased that this has been the case for me.

carol57

Bayoubabe, now that's the kind of story we love to hear!  Do you go to lymphedema doc in Michigan?  The only one I'm aware of nearby that specializes in LE is in Chicago.  Just wondering, as I'm in west Michigan.  

BayouBabe

I go to the LE clinic located in Lemmon-Holton Cancer Center.

mnmbeck

If that happened to me, it would be a dream come true!  Does anybody know if lymphedema in the leg is easier or more difficult to control than in the arm/trunk?  I know three people with lymphedema in their leg.  Two of them have had great results without recurrences....one even did a  76 mile backpacking trip in New Mexico elevation recently!  I would be terrified to do something like that right now!  But, it does give me some hope that maybe life can be somewhat normal for me again!  Kind of tired of babysitting my arm all the time.  Maybe "time" will make it easier to take.

cinnamonsmiles

Hi, I am sorry to hear of your troubles but am confused. How can  your PT say it is too soon to be diagnosed? The PT is providing sleeves, gauntlets, PT with MLD, you have obvious swelling and edema in the arm, hand (I assume hand cuz you have a gauntlet), and trunk.

I think it is time to call a spade a spade, if you have LE, then you have LE. I also wonder about insurance? Will they pay for services for LE without an LE diagnoses?

From what I have read and learned, if you have LE, you have LE. This is very important information to have on record.

Also, with LE, remember that you shouldn't have ANY needle pokes (no matter how small the needle) OR blood pressures in effected limb...that means arm or hand.

I have learned to drink lots of fluid to help LE. The very knowldegable ladies taught me that. Also, do deep breathing exercises several times a day...big belly breaths.

 I  hope you can find some relief soon. Talk to your plastic surgeon about your LE concerns. Hopefully the surgeon isn't a moron when it comes to LE.

I wish you the best and a lot of relief!

Tamiami

I was also afraid of aggravating the LE at exchange, but it didn't bother it at all.  It seems to be better, but I attribute that to knowing what triggers it in me and avoiding some of those activities.  Good luck!

mnmbeck

I have been asking if it helps to drink more water, and the overall response has been that it doesn't make a difference, but if you ladies are finding it helps, I am going to start really pushing fluids! 

Looks like I am having trouble with my sleeve and gauntlet.  My arm is bright red when I have it on.  Something in it is causing irritation.  I am going to try life without it for a couple of days....massage only.  So far, I am feeling more swelling than ever...trunk, too.  UGH!

What kinds of things trigger your LE???

SpecialK

I had rather severe axillary web and LE while I had expanders in place.  My LE was triggered by a sudden body-wide swelling event during chemo.  I actually have less pain, and initially, had less swelling after exchange.  I believe that exchanging the hard expanders for the softer and more malleable implants provided some relief.  I had no exacerbation of symptoms from the exchange surgery itself, and I have also had fat-grafting surgery since then with no worsening of my LE.

carol57

mnm, drinking lots of water is a solid strategy for dealing with LE.  Lymph is naturally quite thick, and LE practitioners believe that hydration helps to thin it a bit, making it easy to move through our lymphatic capillaries.  I recall one woman posting here that after being hospitalized for some reason, and on an IV for several days, her swelling went down considerably, and her LE therapist attributed it to the constant and high hydration she received from the IV.  Food for thought, anyway.  And as far as I know, there's no downside to drinking lots of fluids, except of course all the potty stops.