GRRRRRRRRR I HATE LE..........
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Whew! SO GLAD you found a therapist worth seeing. Bet she's delighted too.
Onward!
Binney0 -
I wear my Velcro when I am driving, sleeping, or if I am going for a walk, you know walking dog whatever. Cause yes, it's hard to do stuff with it on. But lt does loosen up as the day goes o
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Jo. Sending you a happy dance snd chocolate. So glad you didn’t give up.
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Looking good, Joanne!
Lyn
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Have any of you who use a lymphedema pump had shingles? if so, how long was it after the rash appeared that you were able to resume use of the pump? Thanks!
Lyn
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Have any of you who use a lymphedema pump had shingles? if so, how long was it after the rash appeared that you were able to resume use of the pump? Thanks!
Lyn
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Have any of you who use a lymphedema pump had shingles? if so, how long was it after the rash appeared that you were able to resume use of the pump? Thanks!
Lyn
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Thanks for the response, Joanne. I wouldn't dream of using the pump now since my neighbors would hear screams and call the police.
I've read that shingles can last three to six weeks so I was just curious about how long others had to wait to resume pump use. I haven't seen the lymphedema specialist in months. I had my arm measured to order a new sleeve and, luckily, my lymphedema hasn't worsened so I plan to stay the course unless something changes.
Lyn
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Good grief, Joanne...LE just won't give you a break! I hope the lump responds fully to massage.
I realized that the stupid shingles have extended to my upper arm a bit below the armpit. I guess that explains why my armpit was so tender as the pain often proceeds the rash. That's disconcerting because I've always gotten more of a response (swelling reduction-wise) from my sleeve than from the pump and now neither is an option. Other then the very limited rash area, there's no redness on my arm consistent with cellulitis nor do I have a fever. The newer, more effective shingles vaccination is in short supply, even if you could take it. My doctor said that I will have immunity for about two years, then can have the vaccination. Hopefully, there will be an adequate supply by then.
Lyn
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Joanne, I asked my therapist about lymphedema migrating to the neck and she replied, "Yes, it can happen. I've ever seen it in people's faces." Oh great. That is not what I wanted to hear.
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Yep. ..LE can affect the neck. I have had swelling there before. My PT even said it can cause brain fog...well, that explains alot!! So sorry you are experiencing this Joanne!
Ladies, I'm have the abdominal cording AGAIN!! It has been happening for the past 4 months. I can pop most of them but every now and then I get one that needs to be dry needled to pop. The cords only annoy me at night. When I roll over I feel like I rolled over a pencil. Of course I looked up abdominal cording and there were a few articles. Which surprised me! Anyway, one was about Mondor's Disease. It pretty much summed me up! Has anyone heard of this condition? I see my PT Tuesday I can't wait to get this one big cord popped!
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Joanne, here's a LE massage for head, face and neck:
https://ahc.aurorahealthcare.org/fywb/x23169.pdf
I've used it several times in the past just because things felt "congested." It's effective, and I've found it wonderfully calming, too. I use it on our son who has autism when he's upset and he never fails to respond to it, so for that alone I'm thankful for everything I've had to learn about LE.
Varga, Mondor's is the name of the "cording" that occurs below the breast and into the abdomen, and it's theorized that it has a different origin than the axillary web syndrome (AWS) we commonly call cording. For AWS it isn't recommended that the cords be intentionally "popped," because some studies have shown AWS to consist of thrombosed lymph vessels, and they may be damaged by popping. (Gentle manipulation and stretching, preferably by an experienced therapist, is preferred). Since Mondor's is a different beast popping may well be the treatment of choice.
Hugs all around!
Binney0 -
Jo, I get some swelling in my neck. I didn't realize it until my therapist commented on how much better it was looking after several sessions. When I stay on top of things (exercises, compression gear, Flexitouch pump, etc.) the neck swelling pretty much disappears.
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Thanks Binney! My PT would pop the cords in my arm but my OT said No! The last big one in my abdomen is not as bad as it was. It did not wake up me last night. I have been stretching the fire out of it! Maybe that helped! I just wish it would STOP IT NOW!! Is this a "rest of my life " thing to???
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I had an alternate PT for 2 of my last sessions, and she was great. When she took the measurements at the beginning of the session, she said there was almost no difference in the total -- some had gone up a little, some down a little (the good news is that the upper arm had gone down a little). So she decided to put me on the pump for 45 minutes. At the end of that, every measure on my arm was down. On that basis, she started the process to order me a custom sleeve and glove. My insurance will apparently cover 6 of each for every calendar year. The glove is for flying, since I don't have lymphedema in my hand. I'm guessing that later she will have me order a gauntlet to go with the next sleeve? Right now I'm wearing just a light compression sleeve they gave me. The bandaging they gave me (Round 1) really irritated my skin, so we tried it again with a different inner liner and some different material. It still irritated my skin, though slightly less. Hope to meet with the company rep about the custom sleeve before too long...maybe the end of this coming week. My PT also set me up for a pump. She really likes one of the new pumps that came out that has more "capillaries" -- the problem is that it comes down below the hips, whereas the regular one (black box) stops at the waist. I told her I thought the new one would just be way too much for me, especially with my bad back and arthritis hips.
Putting on the light compression sleeve is not that hard until you get to the top and do it without a mirror. Punched myself in the face lightly yesterday, even though I read about not looking at it here. Did it again today only slightly harder. Yeesh. I really need to get a mirror. Or get something to stay inside of my Swiss cheese brain. This is when I miss my estrogen the most!
My adventure earlier in the week was showering with my DH who likes much hotter water that I do, and when he closed the door to the bathroom and turned on the overhead heating element, my L hand started swelling up and I lost definition in my knuckles. I was terrified I'd given myself lymphedema! PT suggested we leave the bathroom door open. We remodeled the bathroom about 10 years ago, replacing the tub with a tiled shower with two double shower heads, one at each end, and a fold-up bench in the center. At first, we had only one control. When I knew I was going to have radiation again, we had our guy come back and reconfigure the plumbing so that each of us has our own shower temperature and volume control. Lifesaver! Still, we may have to rethink our comfort lever for whose side is whose, since when I sit on the bench (and I'm the one who uses it), my left arm is closer to his hotter water, and if I decide to get friendly, I right in the stream of hot water with my LE arm.
My "Now that it's cold, I remember I have Raynaud's in my fingers" time has arrived. I used to use heat packs in my gloves. Guess that's out for my left hand. I just ordered a men's large glove (and an extra large) to see if I can get something over the extra bandaging. I can't afford to go without because of the Raynaud's. What a cruel trick this all is. Bah humbug. Still, any day that I'm not told I have breast cancer is a good day!
I say my oncologist on Thursday. All is well. I told him I was embarking on a mission to change his practice so he referred his patients right away when they showed signs of LE, or even when they thought something wasn't right. He had been only referring cases of moderate to severe LE in the breast or arm, and deferring to Radiology, since they had so much more experience. (I had previously sent him a short, but diplomatic email on the subject about early detection.) Much to my surprise, he said, "I'm there." I gave him the handouts given me by my PT (about 3 pages worth, designed for patients as well as any medical personnel not familial with LE - and even those who are.) I felt really, really good about that. I think I may have made a difference in some women's lives in the future.
Ravel
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I may have mentioned that I have been seeing a therapist that told me because my hand is not swollen like at stage 2 and my arm is not at stage 2 I could not have lymphedema. She also told me last week that she really could see no reason for me to come back. She said she doesn't believe in teaching self massaging as I could never do to it as good as her. She said that since using the off the shelf Wear Ease Compression has helped than I don't need to have a sleeve and she is tired of my coming in and wanting massages and she thinks I am wasting her time.
I saw a new person at a different facility yesterday. Took a while to get in for the first appointment. She heard my story about 22 nodes removed, the heaviness, the pain, the not being able to sleep, the crazy things like sleeping with a stack of pillows to hold my arm up, how I raise my arm to keep the pain away. She said that if using the compassion shirt was working I needed to get a sleeve and yes I do have lymphedema because it looks like it. And that not all people have major hand swelling. She asked about getting me a FlexiTouch. And I started to cry. she was saying all the things that I had read about and knew would help but my other therapist was against, "they don't work, cost too much money and you don't have lymphedema."
I am seeing her again today to start the ordering of the equipment I need and to maybe put me on the Flexitouch for the trunk to see how it works on my issues in my chest and side. Oh Happy Day!!!!
By the way she, my new person knows and had worked in the past with my old therapist and said, "yeah she is very old school and very pure."
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My LE arm has a bruise and it hurts! I haven't had a bruise on this arm that I remember anyway since the LE diagnosis. Should I be concerned? My veins are all raised to. Something is just very different.
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If I remember correctly Vargadoll, don't wear your sleeve if you have a bruise. Elevate it! and watch it. If it swells go have it checked out.
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I didn't pump last night or wear my night garment. I have my sleeve on now but I'm taking it off right now. Thanks ladies! I can probably see my therapist Monday if I can work it in! My girl has 2 appointments
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Oh no. Jo, I'm so sorry to hear about your granddaughters struggles. Glad she's recovering and alive but that's a hard road.
Hugs my friend.
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Jo-5 Oh No! that is so sad. I will add your family to my thoughts and prayers.
I have some good news. Saw my breast surgeon for the last time. She said everything looked good. She told me what to look for in a re-occurence.
I also had my Flexi-touch machine delivered. The person who will train me will be by tonight. My sleeve is on order. I am so excited.
It seems everyone has taken a break since Thanksgiving. Hope to hear how everyone is doing.
Side story. I told my surgeon about my experience with the LMD lady attached to their hospital group. She said she would find out what was going on. She was appalled at my lack of treatment.
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Joanne, I'm very sorry to hear your granddaughter's stroke. How horrible to have the excitement of a new family member turn to worry and fear. My mom had a dickens of a time with c. Diff so you're wise not to take a chance on exposure.
I'm still not using my pump because I have one large shingles lesion on my back that is slow to heal. I think the compression would be painful and might re-open the wound.I'm going to try a sleeve this week and see if it irritated the remaining rash on my upper arm.
Good luck with your pump, Kandy.
Lyn
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Jo, oh dear if it doesn’t rain it pours! Looks like your family will be taking it one day at a time. I know it’s hard butPlease try to carve out a bit of time for your arm so you don’t slip backwards.
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I have been so busy I'm just now checking out BCO! Joanne - I'm so sorry to read about your granddaughter's stroke! I'll be praying for her and your family! I'm at my grandson band concert waiting on it to start and thought I would just check in so my heart skipped a beat when I read your post! More later!
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Dear ladies, I am seeking your feedback.
My LE specialist tells me that I need a circular knit sleeve and gauntlet, like those made by Jobst or Juzo or Mediven. I prefer the LympheDIVAs sleeves, but the specialist is not at all on board. She's concerned that my limb will fill, negating the progress I've made so far.
I'm feeling confused and would appreciate any advice and input. TYIA.
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I like Jobst better than Juzo. Mediven is OK. I've never had LymphaDiva sleeves. When I was first looking, they didn't come long enough for my long arms.
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Im sorry about your gd. Hope things have improved. I believe in miracles. ‘‘Tis the season.
I am a lymphadiva fan too. They are smoother and lighter. Think they have aloe or colloidal silver infused in the fabric. I’ve had no concerns with them. Have used them on/off for five years.
At first I just needed them when I exercised or for flying. Occasionally if I overused the arm. Now the SE of my meds mean I am swollen all the time. Unable to get my wrist small enough to wear my sleeve. Was in bandages most of the fall.
I gave up since nothing seemed to make a difference unless I was off xeloda. That’s not an option. However I’ve noticed an increase and need to try again. I’m really interested in the Velcro sleeve. Would need the hand too.
Do I need an Rx? Unfortunately my therapist moved on to another job. It’s a 3 week lag time to get in to see anyone else.
Thanks
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Oh Zills, I'm sorry the meds are interfering with your lymphedema. I wish the bandaging had given you some relief. My LE specialist tells me that it is the "gold standard treatment." Do you have an appointment set with a new therapist? Perhaps the office can add you to a cancellation list in the meantime.
I did not need a Rx for the Velcro sleeve and glove. The specialist measured me, and I placed the order based on her measurements.
I wear the Juzo sleeve when I'm flying, but I much prefer LympheDIVAs (especially under long-sleeve shirts and tops). On the other hand, I don't want all my treatment efforts to backfire because of wearing the wrong type of garment.
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Hi, guys. I just got lymphedema... it sucks big time. Will appreciate any advise on the topic.
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Inna: I urge you to take some time reading through this thread. There are so many good discussions. Below is a link that was created with the valuable input of several BCO women. Lots of good info.
https://www.stepup-speakout.org/
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