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GRRRRRRRRR I HATE LE..........

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Comments

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    Thanks, Lyn...you're not being too nosy if I came onto this forum. This is the place where I share.

    I had osteopenia, that developed into osteoporosis though I did not know it. ( had been on actonel before etc etc ..) Anyway, I got this great little Golden R. pup after we lost our Golden to cancer Christmas before last. I did everything with that dog, INCL. throwing a ball to it a zillion times a day ( will post my youtube) with NO harm to my LE.
    As I walked my 'bumpy ' grass yard so often, I began to 'feel it' more and more, and thought I might have sprained my ankle so I bought an OTC ankle brace. I only wore it a few days , and decided it wasn't helpful and was irritating.

    A couple of days later, I started to go out to throw the ball to the dog and BEFORE my left foot touched the stair , it sort of twisted and the ankle literally snapped/broke right out from under me. ( osteoporosis) MAYBE that 'sprain' had been a stress fracture ? I dunno'. Anyway, that caused my other ankle to IMMEDIATELY collapse under the weight of my body as I fell and when I did I extended my arm out, desperately trying to catch myself , but I heard " crack, crack and crack again as my arm slammed into the wall of the house. That was the right arm/ humerus breaking.

    Now picture all of that in 1/16 of a second :>)

    I went into rehab for 17 days, leaving my sweet husband alone with my sister popping in on him. When I was released, I was in a wheelchair for a few mos, and I came to realize quite quickly that I would have to REhome the dog , which was the REAL heartbreak at that time. (We did find her a FABULOUS home though)
    All that tossing of the ball and TONS of physical activity and my (left arm/ truncal)LE never went into the R arm.

    One mammo later, and UGH!
    Here is a youtube of me tossing the ball to little Mabel:

    IRONICALLY, in this video, I was taking about ppl. with a bum arm being able to do this! Don't think I will ever be able to get another dog , now that I have the LE in both arms :>( My 13 yr old BC still looks at me from the yard and waits for me to come toss him the ball!

  • vlh
    vlh Member Posts: 773
    edited March 2017

    Ohmigosh, Purple, just imagining that experience makes me a bit queasy. How sad to have to re-home your cute pal. I'm very sorry that health issues forced you to do that.

    Lyn

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2017

    freya. Personally I wouldn't buy meds off amazon. You never know if outdated or where it's been stored etc. Yes it 24 bucks from the company which is more.

    I bet you only need one tube spread on thinly. Amerigel.com the makers are great. You can ask to talk to the maker/scientist there all about their product and your problem. They were super attentive to me. It's used as a antibiotic cream but I don't think they advertise it as that as I guess due to legal issues. Google them and call

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2017

    purple. Awesome cute doggy. Sad that you had to get rid of her but was probably best decision in the end.

    You may be able one day to get a dog but think small and light. I was always a big dog person but have switched to small. They still have great personalities and you can take them everywhere. I now think like this; big dogs bigger cleanup,bigger dirty paws, bigger food Bills, bigger more costly flea meds. Bigger bath problems. Bigger everything. I have switched happily.

    I use a dog halter to stop my littledog from pulling. It saves my le arm because the halter is much like a horse halter and you lead your dog like a horse when walking. I literally can walk doggy holding the leash with my baby finger and I get no pulling because I'm the leader with the halter.

    I'm so glad you've checked in with us purple. We miss you

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    Thanks hugz I appreciate that!

    I'm finding it so hard to believe that 4 weeks after my husbands passing, I had a mammo that has give me biltarel LE. I think I am in shock. It seems there have just been so many losses.

    I still have my ole border collie, but I was actually LOOKING for another dog just 2 weeks ago. Figured this would be a good time for a companion! Dont you have to play ball with your little dog ? We always exercised ours in the yard, and then there were no leash pulling issues.

    I dunno'.

    Really missed you (gals) too, but not so glad to be back under these circumstances.

    Sad

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2017

    purple. Shock is an understatement! Good thing you have a sister to talk to.

    Just throwing a ball doesn't play out my young dog. Let's put it this way. If I walk two miles with doggy then he'll rest for a couple hours but will bounce back with the same energy. Waiting for him to turn four hoping age will suck out his energy for his old old owners!

    And to think of it I had two pups but lent this one to my sister to raise. My First sibling pup had to putdown due to sickness so sis give me back other pup. Both of them I couldn't wear out even though they chased after eachother all day. I just keep walking and walking with doggy. At least I'm getting in shape

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    It is a GOOD thing, hugz... but she just doesn't understand LE ( who does ?!)

    You said :" Just throwing a ball doesn't play out my young dog."

    You haven't tried a chuck -it , have you ?
    My border collie is SUPER active (they are agility dogs) and in his life he has * 2x) actually passed out from going after the chuck it ball again and again and again and ... etc.......not bad on the NON Le arm, but walking is much better for getting into shape.

    The 2 broken ankles kinda ruined that though, and now the bilateral LE is saying no the ball.

    Singing

  • tinkerbell49
    tinkerbell49 Member Posts: 177
    edited March 2017

    Hi ladies I need a little advise as I wrote before i had lymph node surgery 1/9/2017 (3 auxillary) At 6 or 7 weeks post op my breast swelled when my menstrsl cycle started and its been a week now and swelling has gone down. Not all the way though. I have a mammogram next week. Should I postpone it or should i still get it. I get checked every six months after adh diagnosis in 9/15. I have not gotten cancer yet. Thank God.. should i wait another month. I am now worried since what happen to purple. So sorry you are going through this on top of everything else. Any advise???

    Medicating

  • chisandy
    chisandy Member Posts: 11,408
    edited March 2017

    I doubt it was the mammo that caused the bilateral LE—it was probably cumulative stress (especially from your ankle fractures and rehabbing from them) or something else that somehow caused impeded lymph flow or aggravated a preexisting asymptomatic blockage (perhaps in your supraclavicular nodes, which drain to both sides—did you have chest or collarbone trauma too?) that finally cascaded into LE. Was it a bilateral mammo? Even so, I’ve never heard of a mammogram causing LE, especially bilaterally.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2017

    Purple. Maybe I do need chuck it. Sometimes I throw the ball from 2nd story deck down far into the yard. He runs down two long flights of stairs and back up which is 35 feet high of steps He fetches about four times but then keeps the ball! He does pant a lot but is ready to do it again soon after. I wish I had the patience to train him on a treadmill!

    I can't wait till he just lays around and sleeps all day! He's wearing me out! But I gotta admit having your border collie would be tough to tire out. Now that's a job that requires the chuck it! Pets just are the best though aren't they just the loyalist!

    Did you know Binney trained her dog to sniff her kids sugar levels. Amazing...the dog wakes up the kid to alarm her! Wow!

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    ChiSandy: *I doubt it was the mammo that caused the bilateral LE*

    To my mind, I am 100% positive that it did!

    I'm sorry, I don't ' know ' you, and I wish more ppl would write LE in their info notes, but do you even have lymphedema?

    The mammo caused the issue on my right arm. First of all, I had left arm and truncal LE under very very good control. My ankle rehab did not involve my arms AT ALL. The rehab on my R. arm was over many many mos. ago, and I wore my left arm sleeve (ONLY when I rehabbed my R arm.) It was fine...for months. Since last July.

    On FEB. 22nd ,2017, I went in for a mammo. I noticed that she put too much pressure on the right, but I didnt complain because I know they have to compress firmly in order to get good pictures. When I went to get dressed , there was a deep 'line' where she had compressed. Immediately, it reminded me of the lines I used to get in my left arm when first DX with LE, and before it was under control. Still, I thought i would go home, apply an ice pack and take an anti inflammatory. I basically forgot about it after that. LE in the right side was the farthest thing from my mind.

    Just a few days later, the ring I had been wearing on the R. hand , seemed tight. ( The second sign I had nearly 5 yrs ago when I got the LE on the left!) That concerned me. Just few days after that, I came out of the shower, and noticed my elbow was MUCH puffier than the LE arm and my wrist ( a trouble spot on my left arm ) was now just as big on the right. I took the ring off ( it wasnt easy) and the wrists now measured the same. Just above the R. elbow is now bigger.

    None of that can be a coincidence. The 'trauma' was the mammo, and it didn't cause bilateral. I already had the left and truncal.

    I had a LX with 2 nodes removed from the left side only and NO rads, against the Drs advice. I was not even a likely candidate for LE on the left, but I got it... and it is now bigger on the right.

    Also, the supraclavicular nodes don't make sense. :"The swollen supraclavicular lymph nodes are *easily felt* as small tender lumps at the top of the collarbone. As the infection is treated and resolves, these lymph nodes eventually revert back to their original size.

    I recall long ago, Binney advising a good MLD session and low salt and certain precautions before mammos.

    I would not have given a second thought to do anything like that involving my R , side, but now I wish I did. My mind was in a fog with the passing of my husband anyway, but let it be a word to the wise for ppl. to be as prepared as possible when going for a mammo!

    Anyways that's my story, and I'm sticking to it!

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    hugz

    I used the chuck-it for years on my NON LE arm with no issues at all. It's easy!

    My old Golden was a therapy dog for kid in the cancer ward. I brought him for 3 years. Dogs are GREAT!

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    Tinkerbell

    I would never advise anyone not to get a mammo, but I would suggest you do self MLD the night before, make sure you have been on Low salt, bring an ice cold water bottle with you ( and use it right away if there is any swelling). Also, TELL the woman your concerns and ask her not to compress any harder than she has to.

    I am sure you will be fine.

    My case is highly unusual. Even the LE on my left was unusual.

    Don't be afraid. Go prepared, and let us know the results. ...fingers crossed you are clear!

  • binney4
    binney4 Member Posts: 1,466
    edited March 2017

    Tinkerbell, might be a good idea to postpone until you can get in to see a well-trained lymphedema therapist. Over the years here we have had women occasionally post about post-mammo flares, but the point here is that you really do want to know if the swelling you're experiencing is LE or not. If you haven't already, the therapist will also do baseline measurements for future reference and give you some personalized tips for lowing your LE risk. In case you don't already have one, here's how to find a well-trained lymphedema therapist near you:

    http://www.stepup-speakout.org/Finding_a_Qualified...

    Purple, it's absolutely possible the mammo triggered your LE. Still, therel are those factors ChiSandy mentions that may have been building up to that outcome. LE is complex, and the fact that most of us don't develop it right at the time of surgery is evidence of a domino-effect chain of events leading to that one triggering event that brings it to our attention. Any way you look at it, though, it's a bummer of an event, and a big-time job to get on top of. Hang in there! Keep us posted on your progress, please!

    Tinkerbell, if you use ice on your breast after a mammo (or ever), be sure it's not directly against your skin--pad it well with a cloth of some kind. Any extreme temperature (either hot or cold) draws lymph fluid to the site, and you sure don't want that!

    Hugz, our daughter's dog, Penny, goes on saving her life on an almost daily (and nightly) basis--such an incredible relief for DH and me! But Penny's still just a dog at heart--so funny and cute and smart and (maybe best of all!) non-judgemental. Has no use for ball-chasing, but herding the cat is right up her alley!

    Hugs all around,
    Binney

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2017

    Binney what agem penny is. She very fortunate to be in your home!

  • chisandy
    chisandy Member Posts: 11,408
    edited March 2017

    It wasn’t the mammogram per se, but the ineptitude of the technician in using too much pressure. Radiology techs need to be taught about precautions to take to avoid triggering LE, especially new LE in those already diagnosed with it elsewhere in their bodies.

    And yes, I have been diagnosed with LE. My LE specialist (Dr. Feldman at NorthShore Evanston Hospital, a founder of LANA) diagnosed “sub-clinical,” or Stage 0 arm LE. His PTs noticed flares that they termed “mild,” or Stage 1. I’m back to Stage 0 and acutely aware of possible flare triggers. I tell mammo techs (and now warn gym instructors) I have LE, and wear compression for exercise, long flights, and playing guitar outdoors in hot weather.

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    ChiSandy

    I'm sorry that you too deal with this beast! Sure hope it stays in check. I wish the LE was mentioned in the bio signatures.

    You said :"but the ineptitude of the technician in using too much pressure. Radiology techs need to be taught about precautions to take to avoid triggering"


    I thought of that and VERY VERY nicely called and told then what happened. I know that are in a catch 22 situation with having to apply a lot of pressure in order to get a proper DX though. Must be tough for them.

    As for letting them know you have LE, it is probably a good idea and I have done so in the past, but my mind was otherwise occupied.

    Having said that, they should at least be trained to know that EVERY BC pt. has the lifelong risk, and again, I would not have been as concerned about the R arm anyhow.

    I will always believe the mammo was the trigger, and yep, it's a bummer !

    BINNEY ........

    Thx for all your help.

  • denise-g
    denise-g Member Posts: 353
    edited March 2017

    Diagnosed with Shingles today - in my "good arm" thank you, Jesus. Has anyone else had Shingles while having LE?

    Anything I need to know? On anti-viral drugs and caught it early.

  • tsoebbin
    tsoebbin Member Posts: 199
    edited March 2017

    i haven't....So darn sorry!!

  • AliceS
    AliceS Member Posts: 74
    edited March 2017

    Yes, Denise, I did have shingles on my back just at the end of my chemo when I was anemic and starting to deal with LE. I had had the shingles shot 3 years earlier so had a light case but was shocked that that was what it was. I took a drug that was prescribed and it did the job in a short time--like 2-3 weeks. Thankfully, yours didn't show up in the "bad" arm. Best wishes to you and hope you and your sister are doing well.

    Stephanie

  • denise-g
    denise-g Member Posts: 353
    edited March 2017

    tspebbin - THANKS! Appreciate it!

    Stephanie - oh yikes about chemo. I hear that happens quite often, and so sorry you were one of the ones! My sister and I are doing quite well - thank you!

    The reason I caught the Shingles in my good arm so early was because of Lymphedema. I'm so used to paying attention to weird feelings in that arm that when I got another strange set of feelings in the other arm, I knew something was up. Lymphedema can be useful once every five years! LOL!

  • AliceS
    AliceS Member Posts: 74
    edited March 2017

    Yeah--things we never thought to be thankful for!!! :D Never used to think of every little pain somewhere-- now suspicious of everything, however, most things go right away, thankfully. Let's hope we do well for another 50+++ years!!!!! Life is good!! Stay busy--

  • reflect
    reflect Member Posts: 280
    edited March 2017

    Hi all,

    Introducing myself as part of the LE group. I saw an LE PT before surgery, thanks to someone's post here, and so we had baseline #s. After surgery I had swelling and had some MLD and a sleeve and it went away. Now (rads were 3-4 months ago) it is back w/vengence. Swollen and painful, including breast. I think a day of laundry put me over the top--is that possible? So now 3x week w/PT for now, ordering custom sleeve and compression bras (any recommendations?) and...and ...hoping insurance will pay for some of it--what was your experience?

    My great joy in life was hot tubs and saunas. Gone forever? Yes, LE sucks, hoping I can manage it.

  • tsoebbin
    tsoebbin Member Posts: 199
    edited March 2017

    so sorry reflect. I haven't been able to get back in the hot tub, but I hope to one day soon. It will need to be at a lower temperature than I used to enjoy... But hopefully I can enjoy our hot tub soon!

  • minustwo
    minustwo Member Posts: 13,418
    edited March 2017

    Reflect - I have truncal & breast LE. I have a heavy duty Belisse bra for flying. For every day (24/7) I use a Wear Ease Sydney Bra #780. My LE/PT likes that it comes up high in back & under the arms. Not cheap, but I don't think anything for LE is cheap. At least they regularly send out emails for specials BOGO or free freight or 30% off, etc.

    http://www.wearease.com/wear-ease-products/post-surgical-bras

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    Hi reflect

    I am from MA., too!
    So sorry to hear about your LE flare.

    RE :"I think a day of laundry put me over the top--is that possible?"
    Theoretically, it is possible. Did you have a sleeve on ? Avoid heavy lifting/ sort that laundry up into smaller/lighter bags or toss it down to the washer in several pillowcases.

    I dont wear custom, but I am sure someone here will help.

    LE generally does not make friends with hot tubs :>(

    Take it EZ and best wishes to you.

  • homemom
    homemom Member Posts: 845
    edited March 2017

    reflect - Welcome! I believe it is the temperature you have to watch out for in a sauna or hot tub. I have a mild case I believe of LE, where I can tell there is a difference, but no one else can. I am in sales so I don't wear a sleeve during the day, but I do put it on when I get home. I figure 3 hours + a day is better than nothing!

  • reflect
    reflect Member Posts: 280
    edited March 2017

    Thanks tsoebbin, HomeMom, purple32, and MinusTwo.

    I had stopped wearing the sleeve thinking I was home free and it was just post surgery swelling. Silly me. Today my arm feels better but my breast is very hard, swollen and painful. The LE PT suggested self MLD and for the breast to gently compress it down/release. I guess that makes sense. He suggested compression bras (wear ease) ..the sizes don't look like they will work, smallest band size for my DDD is 42 and I'm a 38. Hmm. Also recommended compression vest (for night). The bras and the vest, sleeve and glove is all looking pretty expensive. Hoping insurance might cover some. We'll see.

    Mid blizzard here. At least it's light weight snow and there is no school.

  • tinkerbell49
    tinkerbell49 Member Posts: 177
    edited March 2017

    Hi ladies

    Reflect sorry for your flare up. Hope you can get it under control. I too had or maybe still have a swollen breast. My pt thinks its hormonal which my nipples are sensitive on both breasts so hoping shes right. I finally got an appt with a lana certified therapist for friday morning which is good cause i have a mammogram on Thursday. I spoke to my mo and she said i should not post pone. This started with my menstral cycle and if i postpone it will be at the end of the month during my cycle again. Im not trusting drs latley so im really having second thoughts. My swelling is down a lot not sure if its back to normal as looking at my breast was not a daily thing for me. It feels soft again. Praying and keeping my fingers crossed. I will tell the tech not to squeeze to hard and if she insists im just walking out.

    purple i left you a message on the other thread.

  • purple32
    purple32 Member Posts: 1,767
    edited March 2017

    TINKER
    What thread ? Look under Private messages in blue on your left side bar . I did PM you OR just click on my name, and PM me.

    You will be okay!

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