GRRRRRRRRR I HATE LE..........
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Hi everyone,
I'm so emotional..I never knew about lymphedema. I had a crap BS. My plastics team has been great but they didn't take the nodes, my BS did. She seemed to be upset that I decided to have a bmx with a DCIS stage 0 diagnosis. But I decided it after 6 months of taking tamoxifen, doing a ton of tests and wanting the most absolute assurance I could get to be cancer free. She really focused on telling me how bad a bmx would be over a lumpectomy. All the while I could have had lymphedema either way and she never once explained this possibility to me. and now I believe I do have it! I thank you all..reading these posts have helped me. She took close to 10 on one side and 3 on the other. I chose to have the DIEP surgery and now after my second phase, I'm noticing my arms swelling, my stomach swelling. ripples and tightness. I go to PT tomorrow to talk about a LE treatment. But it was my plastics team that referred me not my BS!😡😡😡
If anyone has any suggestions, I'm taking them all. I have a vacation to fly on Novembet 13th. Should I start researching compression garments again?
Thank you in advance,
Crystal
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cwins: You're not the lone ranger. Most docs get only 15 minutes of education in med school about LE. I can't think of one person I've "met" on these threads who was informed or warned ahead of time.
My BS, my PS & my MO all said pooh pooh - seldom happens, very rare couldn't be, not to worry. The one who understood and get me to a competent, trained LE therapist was my radiation oncologist.
I never fly without sleeves and gauntlets and a Belisse Compression Bra. At home I wear a WearEase Sydney Bra 24/7. It's my goal that the LE doesn't spread any further. So far it's working.
If you haven't seen the thread below, it's great information & has good tips.
Good luck at PT.0 -
Thank you MinusTwo, this is crazy to think that this isnt something told to a patient the minute they start talking about removing the lymph nodes. Which they immediately told me I had to do regardless of my elected surgery. Some, a few or all can result in this. But moving on....
Thank you for the link and I'm reading it now! I will be getting those items. which I'm sure the PT LE specialist will suggest. Then my doctor may figure out it is why I am so uncomfortable.
Crystal
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JO-5 - Well to start, yes the Sydney bra is a 'pull on', but you can step into it and pull up. I did that when I wasn't supposed to move my arms up over my shoulders. This site has a video about donning garments. https://www.wearease.com/
There is a 'pocket' for a prosthesis, but since I have implants I've never tried them. My PT therapist was particularly pleased with the high back & under arms.
The company representatives are great about answering questions and their return policy is very generous. Give them a call 866-251-0076 and discuss your particular needs. They might suggest other styles that might work for you. Disclaimer - I have no connections with the company.
That said, I wear a Belisse Bra when I fly because that's what I started out with in the beginning. It's heavy & confining with zippers & hooks & velcro, and I can hardly wait to pull it off when the hour post touch down is over. I'm sure there are others out there that work as well (maybe even a WearEase model), but I tend to be a creature of habit.
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Jo - I can imagine your frustration. Hope you find something that helps.
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This night time padded garment is ucomfortable! I'm feeling very overwhelmed that I have to wear all this stuff for the rest of my life.
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mammalou, I totally empathize with you! I hate it so much, that go next week for lymphedema surgery consultation. Even if there’s 50/50 chance to get rid of this nightmare, I’ll take it.
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innaB2018 I’ve wondered how bad do you have to be before they will consider that. It would be worth it.
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would live to hear the outcome of the appointments! I'm in compression 24/7. I've gotten used to the night garment the cover that goes with it does not stay closed good witch gets a little annoying. And until I figured out where something over top of it it was wearing holes in my sheets!
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Vargadoll, I found your note when I did a search on the lymphedema pump and Velcro. My chest garment is fine, but I've had to resort to flinging myself into bed with my arm down and my legs as straight as possible to keep my leg garment in place. Lymphedema is no laughing matter, but my sometimes dark sense of humor has me envisioning a huge, brown penguin flopping about.
Do you recall how long you'd had your pump when Tactile agreed to replace your garment? I recall the pump proper having a 5 year warranty, but no mention was made about Velcro failure issues. Thanks!
Lyn
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Lynn, I had it about a year and half. My LE therapist told me to call that they would replace it and it my surprise they did! They just wanted me to mail my old pieces back to them. They provided the postage to!
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That's great, Vargadoll! Thanks for the information.
Lyn
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I have left arm and trunk lymphedema. I just got cellulitis in my face. Ugggggg. Do you think there's a relationship between lymphedema and cellulitis somewhere else in your body?
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Oh no! My PT would tell me that the back of my neck would be swollen sometimes from lymphedema. I was told it was pretty much anything in the upper right quadrant including my head and neck. So it wouldn't surprise me if it was connected! Take care of yourself I know those's antibiotics suck I've had to take them before.
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I definitely have swelling in my neck, but I haven’t learned how to deal with that. I am getting an education every time something happens to me. I will be ever so vigilant after experiencing this. It was very scary how fast it cameand how sick I felt.
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Thanks Jo!!! I havent been on here to much. Life has been so busy! Hope everyone is thriving!
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I developed a cellulitis infection on November 15th. I’ve been treated with antibiotics but I still notice redness or more pinkness in the area where the infectio was. Can anyone tell me how long it takes to clear totally. Is it normal to remain pink for awhile.
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i was hospitalized for almost a week, with cellulitis, in October, I was on IV antibiotics for 5 + days, then on oral antibiotics, 2 kinds, for 3 and a half weeks. I was told to stay on antibiotics for 3 days after the signs of infection, like redness and warmth were gone, and my skin looked pretty much normal. So, I think if you have redness still you need to contact your doctor. Mine went from not much to life threatening in a couple of hours. Also, take temperature and make sure it's not elevated.
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HOPE FOR LYMPHEDEMA!
After surgery and radiation I had major edema swelling in the left arm, torso, ribcage. Went to PT, learned self-massage techniques, wore compression garments and so forth. They told me I'd probably always have it and would need to wear those garments forever. Then I started doing Zumba at the local YMCA and ... like magic ... the edema gradually went away.
Go figure. My doctor seemed surprised. He never suggested any connection between physical movement and circulation. In hindsight, seems kinda obvious to me. In any case, I no longer have any swelling and don't need compression garments.
So don't give up regardless what they tell you, it can get better.
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Yes maj, you can have a remission. Exercise is good, they just recommend starting slowly & building up. But it could come back at any time. Be sure you take all the precautions you can.
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Great news on your exercise program providing relief from the edema, maj2.
Lyn
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Hi I need some advice. I have cellulitis (6th time) and have been on antibiotics for over 48 hours, 2 IV infusions in the hospital and oral since then. Redness is receding and swelling is awful. When can I safely resume compression? I've had different answers, even from doctors. What have you been told? Thanks in advance.
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reflect - I see your post but don't have enough experience to answer. Hopefully Binney or Hugz or someone with more knowledge will check in.
Edited to add - soooooo sorry you're going through this.
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thanks Jo5 and minus2, I will try to contact LE PT tomorrow. So discouraged.
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reflect - I've only had cellulitis once where the redness and swelling were located mainly on the side of my elbow. My regular sleeves felt too tight around my elbow, so I used my night compression sleeves with the velcro loosely attached. They're also easier to take on and off since I wanted to check the area frequently. I saw my LE therapist after I had healed, and she thought I did the right thing. I hope you feel better soon. The redness went away after a day, but I remember the pain lasted until day 9 of the antibiotics. I was worried I would have to go back to the ED.
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Oh my goodness! So sorry to read this! I've had cellulitis but not that severe. I had to wait a week after I finished my antibiotics to use my flexitouch pump. But no one told me not to wear my compression! I wore it well I had a bacterial infection and cellulitis ! Hope you get the right guidance soon !
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Oh my goodness! So sorry to read this! I've had cellulitis but not that severe. I had to wait a week after I finished my antibiotics to use my flexitouch pump. But no one told me not to wear my compression! I wore it well I had a bacterial infection and cellulitis ! Hope you get the right guidance soon !
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Jo - Wow - so sorry to hear that you're still having problems from that dag-blasted deer fly. I'm sure this sounds evil & cruel, but I hope you smashed him.
I have truncal & breast LE on the right side since my ALND surgery. So far I haven't had any problems with calf or ankle. When I'm sitting I usually have my legs up and I walk a fair amount, but I don't know if that makes any difference. What does your LEPT say? Hopefully someone else will have more experience.
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I have truncal and abdominal LE. I have not had a problem with my leg but my right hip does hurt. I had a MRI and it came back clear not even arthritis!
I'm sorry you are having an issue! When you are told LE and it's for life....sigh.....
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I was wondering if anyone has had LE before their surgeries or radiation? I'm waiting on my core needle biopsy results, but I have a 3cm mass in my left breast. I was BIRADs 5 with high suspicion of malignancy in both the mass and a swollen lymph node under my arm. For months, before I felt the mass, I had been complaining to my doctors that my left arm kept going numb, or tingly, or aching. One night I couldn't even get to sleep because no position was comfortable for my arm. The doctors kept blowing me off and telling me it was due to nerve issues in my neck. But I have that in my right arm as well, and this felt different. After I found the lump in my breast last week I noticed that my left arm is definitely swollen, and I'm wondering if it's from that lymph node? Does this mean I'm probably going to have LE in that arm permanently? I'm sorry you are all dealing with this. Definitely not a club wanted to join, and it's too soon for me to gnash my teeth with you all, but I'm definitely feeling a little pissy about it.
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