Home Forums Melanoma: Stage III How are you controlling the swelling and lymphedema?

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  • #57550
    Shirley Z
    Participant

    Hello everyone,

    I am a big fan of crocs because they give me the extra room I need for the up and down swelling and it usually prevents me from having to buy 2 pair.

    Our daughter got married this past summer. Finding cute dress shoes when you have lymphedema is almost impossible. I managed to keep them on for the wedding only and then ended up in a pair of slippers.

    Shirley Z

    #57551
    GaylaB
    Participant

    I got the DR RX for the pump today, faxed it to the medical supply and after approval from my insurance, it will be ordered! YAY!

    Oh and I cannot log into the forum from my IPAD any longer, I am using the correct ID and password but it says I have exceeded the attempts, hmmm…

    do you think I will have to create a new user ID?

    Therapy Monday and pump on the way, life is about to be good ( I hope :P )

    Happy Thanksgiving everyone!

    Gayla

    #57552
    Shirley Z
    Participant

    Happy Thanksgiving to you Gayla, and to everyone on the forums.

    It will get better. I PROMISE you.

    Hope the pump works well for you.

    Shirley Z

    #57553
    msue5
    Participant

    Hope the pump is successful for you. When they come they will show you how to use it. My first pump conked out and I çalled and another one was on the porch the very next day. For me it is the therapy I can be most compliant with plus my husband just says time for your pump! No arguing allowed. Watch for abdominal bloating to make sure fluid is not pooling in your Abd. Mine was being trapped in scar tissue so they added an Abd piece and there was a big improvement. Just make sure you have everforything near you before you start such as phone remote book etc cause you will be trapped for 45 mins to an hour. Good luck Gayla and have a great holiday.

    Look for my update on Stage 4 board. Finally a plan.

    Mary Sue

    #57554
    GaylaB
    Participant

    Hope everyone had a WONDERFUL THANKSGIVING!

    I must share this with you although when I heard it I thought it was complete nonsense so you may as well but I tried it and it WORKED!

    My husband wrapped my leg in cabbage leaves and then took regular bandages and wrapped around those and the cold felt great against my leg but within a few hours the swelling was GONE!

    soooo I googled it since my husband had found it to see how this works and it actually works for spraining and injuries so naturally it worked for lymphedema!

    Simply amazing…..stocking up on cabbage everyone! LOL

    Gayla

    #57555
    Linny
    Participant

    GaylaB wrote:

    Hope everyone had a WONDERFUL THANKSGIVING!

    I must share this with you although when I heard it I thought it was complete nonsense so you may as well but I tried it and it WORKED!

    My husband wrapped my leg in cabbage leaves and then took regular bandages and wrapped around those and the cold felt great against my leg but within a few hours the swelling was GONE!

    soooo I googled it since my husband had found it to see how this works and it actually works for spraining and injuries so naturally it worked for lymphedema!

    Simply amazing…..stocking up on cabbage everyone! LOL

    Gayla

    Wow! Never knew that about cabbage leaves. What a great thing to have in your arsenal. Thanks for sharing that.

    Now if I can just wrap myself up like a mummy in it and drop 20 lbs… 😆

    #57556
    GaylaB
    Participant

    The pneumatic compression pump came today! But as I was being evaluated (first visit) with the lymphedema massage therapist that will be treating me, I mentioned to her that I had the pump coming and she said she did not recommend using those!

    Now what????

    I do not know the negatives in using these devices so if anyone has a negative experience, please share with me!

    Now I don’t know if I should put it on or send it back.

    Gayla

    #57557
    msue5
    Participant

    Hi Gayla

    I know there are conflicting opinions on the pump use. I started my therapy out with massage and wrapping for 3 months until my measurements stabilized and then was transitioned to a pump. I go to a large rehab

    center and see the physical medicine Dr for measurements every 6 weeks. I had a flare up last summer and went back to massage and wrapping until things calmed down then back to the pump. In fact I have an appt tomorrow and will ask the Dr what the controversy is about. You could get a second opinion. You could ask the pump Rep which Dr’s are ordering them and go to one of them. I think the design and efficiency of the pumps has improved since they first came out. Perhaps you are not stable enough yet for the pump. You need to see a Physiatrist who specializes in lymphedema.

    Mary Sue

    #57558
    Shirley Z
    Participant

    Hi Gayla,

    My therapist felt the same way but in Mary Sue’s case it seem to have really helped her. And Linny’s neighbor as well.

    Opinions really seem to differ on this.

    Cabbage leaves? Have never heard of that one, but it does make me hungry for stuffed cabbage lol.

    Have a great week!

    Shirley Z

    #57559
    GaylaB
    Participant

    I went with my gut and WOW! I love it :P

    Actually it’s 7 am and I am wearing it again 😆

    I can’t see my therapist again for 10-14 days until she gets approval through insurance, yesterday was an intake evaluation and she staged me 1 or 2- and determined swelling was still post op somewhat, which is VERY good news!

    My foot never actually swelling until a few weeks ago and that was after myofacial therapy, do perhaps that was just too aggressive therapy.

    I am doing manual drainage immediately after removing the pump so so far, so good!

    Gayla

    #57560
    Thandster
    Participant

    Hi Gayla!

    I’m curious to hear how things have been going with your lymphedema. How has the therapy been going? Have things gotten better? I’m 4 weeks after surgery (bi-lateral inguinal lymph node dissection) and am starting with the therapy in 2 weeks. My swelling isn’t horrible but it is there and I’m curious how helpful the therapy has been for you.

    Thank you,

    Thandster

    #57561
    GaylaB
    Participant

    Hi Thandster and everyone else!

    Things are good with lymphedema therapy, I am having good days and bad days… Cannot hit the floor in the morning without pulling that stocking on however:(.

    If I go without it 5 minutes, I pay for days 😮

    I have finished my first round of therapy, last week was my last visit. I’m going to do it at home then sign on again in a few weeks. I need a break.

    Still undecided how much swelling is still post op. A friend I met here had his surgery same time, very similar story as mine and he is still swollen so keeping my hopes up this is still some post op going on. I am starting another thread- got 3 biopsies back – not melanoma – but require wide excisions ….???? Starting to think I need a new derm or at least a second look at these biopsies. Wow!

    Gayla

    #57562
    Thandster
    Participant

    Thanks for your reply Gayla. I hope you continue to get the swelling under control. I started the therapy yesterday. It will be 5 days/week, 1.5 hours/day, estimated 3 weeks but will be evaluated as they monitor my progress. If it goes longer I’m fine with that.

    Good luck to you!

    #57563
    GaylaB
    Participant

    Thandster,

    Has your swelling been determined post op or lymphedema ?

    Curious if it is just post op….

    Still praying that’s what the majority of mine is- the pump is FABULOUS- if it comes to that for you (hopefully it will not). But it does wonders. Very pleased with it even though my therapist was against it in the beginning, she was actually impressed with the results!

    Keep me posted!

    Gayla

    #57564
    Thandster
    Participant

    Hi Gayla,

    It is lymphedema. I am just finishing the daily treatment, but can go back if I think it’s necessary. Still have the swelling but the home massage helps considerably and I’m fairly content as long as it continues to improve. Will keep you informed.

    Thanks

    Thandster

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