Using a swell spot...

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naps
naps Member Posts: 61
edited June 2019 in Lymphedema

Hello all,

I have been fortunate to have minimal LE after my ALND almost 3 years ago. Use my compression sleeve at times. I just got my tissue expander out last week to go flat on that side, and now I have what the plastic surgeon believes is lymphedema swelling above the incision, which makes the skin droop over the incision in spots. Also now have quite a bit of swelling extending under my arm--not sure if that is LE vs typical post-op swelling. The surgeon has offered no guidance whatsoever(!) Disappointed in that. I eventually obtained a referral to a LE therapist from his PA that will not happen for weeks (this was not forthcoming until I asked whether or not there was anything I could do.) I want to try to mitigate this in the meantime. I asked if I could try a sports bra, and PS said "sure." The one I have is not very snug but does seem to help at least with the swelling under the arm. I learned about swell spots from this forum and have now ordered the "small Sobol spot." It hasn't arrived yet. I can imagine it could help put some gentle compression against the area above the incision, maybe if I get a somewhat snugger sports bra to hold it? How thick are the swell spots? Any tips on choosing a sports bra for this purpose? Do you use the swell spot around the clock, as needed? Any other ideas?

I have also been trying to do some MLD based on what I was taught after the initial surgery 3 years ago. Not sure if that's doing anything--it was/is mostly focused on the arm, though there is some massage of the trunk as well.

I will see a LE therapist at some point, but I am hoping to be proactive.

Thanks so much!!

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited June 2019

    I had a whole fat pad with 24 nodes removed when I had BC the first time in 2003. I had immediate lymphedema from that. I saw 4 different therapists over about 8 years and I wore compression sleeve and glove on my left arm. Then I had problems getting my custom garments to fit properly. I ended up not wearing anything. Initially I saw a little increase in my arm size, but it remained at the same level so I didn't worry too much.

    I was diagnosed with ILC in Dec 2018 and had a mastectomy with DIEP reconstruction in Jan of 2019. My MO asked me yesterday if I noticed an increase in swelling under my left arm, in the arm pit area, and I said yes. She said she thought it looked quite a bit larger than it was at my last visit and told me to see a lymphedema therapist. I didn't want to go to the hospital where I had my treatment and still see my doctors because it is over an hour drive one way. My MO said going to a local therapist is fine and my local hospital has a great program for lymphedema therapy so I just called for an appointment for a consultation. Of course the scheduler wasn't available and I leave on vacation soon, so doubtful I will get anything scheduled for at least 3 weeks. I'm just going with the flow. I doubt it will me much worse in three weeks.

    I am sure we aren't the only ones with arm pit swelling, but honestly, I don't even know what they could do for that other than massage? Does anyone know?

    I plan to start an exercise program after vacation. It would be great to see what the therapist says about that.

    Honestly, I feel like I was run over by a truck, so broken, a walking body of inflammation!

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Hi Naps - I have a breast swell spot I use for my Breast LE and Fibrosis. I love it. I was surprised at it's thickness BUT it's smooshy and actually feels good on my LE areas. Somehow it drops my pain level when it's on. Strange as you would think more thickness would equal more pressure and subsequently more pain. I typically wore it daily for 4-6 hours in the beginning. Now I wear as needed. I wore it with this sports bra from Amazon "Amazon Essentials Womens Light Support Sports Bra" and had no issues. I also used COMPREX daily (up to 8 hrs) or as needed too. FYI It's spendy but it lasts forever. I just cut to size, hand wash and line dry as needed...good as new. I have not needed to reorder and am not even close even 6 months later. Komprex is thinner, only 1/4" I think and easier to hide while wearing out and about. I found that it was very efficent in moving around LE fluid and decreasing swelling/pain. My Breast LE and my Fibrosis are very manageable now due to the use of these three items and daily/every other day (as needed) LMD. I will see if I can dig up my LMD handout/drawing my LE PT gave me last winter. Maybe that might be helpful too.


    image

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Found my handout for you on Manual Lymphatic Drainage (MLD) for Chest Wall Swelling given to me by my LE PT.

    The directions on the front go along with the picture my PT drew and numbered on the back. I usually do this for about 20 mins every other day now. In the beginning I did it nightly for about 30 mins. The "strokes" going across the chest (from affected side to unaffected side) and down the truck (away from the affected area) are to be done like you are "petting the cat". Small strokes, done softly but in continuous movement along the path you want the fluid to flow to. Hope that makes sense. Oh and I had asked my PT if it mattered which direction the small circles were done, she said it doesn''t matter as long as during each therapy session you did them all in the same direction.

    If you have any questions let me know. Glad to help. :)

    image


    image

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  • xxyzed
    xxyzed Member Posts: 230
    edited June 2019

    There are also compression vests and camisoles that can be used. I used the vest for post surgical swelling and now use the camisole which is lighter compression on a daily basis for the chest area.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Yes, XXYZed is correct.


    My LE PT directed me to a few different product lines, one of them being from LymphedemaProducts.com. I ended up choosing swell spots but I think if my needs had been different I would have gone with one of these


    Compression Shirt & Vests


    These are offered by the same company where I purchased my other Breast LE products, the swell spot and comprex. I trust them.


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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited June 2019

    I was able to get an appointment with the lymphedema specialist for the day after I return from vacation!

    Spoonie & xxyzed, great information!

    An unrelated lymphedema question. We are driving 3 days one way to visit our son. We used to drive it in two days but they were 12+ hr days and I don’t think I am up for that now. My son keeps saying we should fly and I said I was too afraid to with my lymphedema, especially now that it seems to be spreading to my underarm. He said I should have asked my doctor about flying, I was going to, but I forgot. I’m almost 100% sure she would have said I should drive. Am I right to drive or crazy not to fly?

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited June 2019

    I was able to get an appointment with the lymphedema specialist for the day after I return from vacation!

    Spoonie & xxyzed, great information!

    An unrelated lymphedema question. We are driving 3 days one way to visit our son. We used to drive it in two days but they were 12+ hr days and I don't think I am up for that now. My son keeps saying we should fly and I said I was too afraid to with my lymphedema, especially now that it seems to be spreading to my underarm. He said I should have asked my doctor about flying, I was going to, but I forgot. I'm almost 100% sure she would have said I should drive. Am I right to drive or crazy not to fly?

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited June 2019

    Sorry, accidentally posted same thing twice, thus the deleted post.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    MavericksMom - I'm not completely sure about flying. I know there are some members who have posted their experiences and their differing opinions of doctors. My best advice would be to ask your own team before making a decision about flying. I know, since I haven't had to fly yet since everything happened, I would want my PT to evaluate me and let me know what my current risks are if I fly. Hopefully others that know more about the risks specifically will be on soon to help you out. Have fun on your vacation either way and good luck at your first LE appointment!

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  • naps
    naps Member Posts: 61
    edited June 2019

    Thank you Spoonie77 and xxyzed--I really appreciate all this information.

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