GRRRRRRRRR I HATE LE..........
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glennie19,
I had a cortisone shot and eventually trigger thumb surgery on my LE side. Like you my LE is mostly truncal with a little in the upper arm. I had short term swelling in my thumb, which is long gone, and a nasty reaction to the internal stitches. I had a localized infection around them. Same thing happened with my radiated breast. Surprisingly I had no LE/swelling except for the thumb, which may have happened regardless of LE.
My doctor had done extensive research because he'd had a previous patient with LE, who then had no problems after surgery. I was in such pain I was willing to take the risk.
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Doxie,, I get having necessary surgery on the affected side,,, but he thinks that I can get an IV & BP on the affected side while he operates on the non-affected side. Nope,, not playing that game. Maybe nothing will happen,, but why take a chance when there are options? If I needed carpal tunnel surg on the affected side, that would be another ball game.
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Glennie - I had lines put in my ankle for the last two surgeries. Even tho I was at a major hospital, there are only a few people who can do that. And it really hurt when a stupid anesthesiologist kept poking & poking for new places until we called the head nurse. Anyway, hold out for what you know is right.
Doxie - I've been having cortisone shots for left trigger thumb for several years. We didn't consider surgery since I was in active cancer tx, and now it seems to have resolved somewhat. But last month I needed a cortisone shot for a right trigger thumb. My LE is also mostly truncal but the right side is where I had the ALND, so has more problems.
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aaccckkkkkk, glennie, what a pile of frustration you're experiencing. And as there are no credible studies on our risk-reduction precautions, because it would be unethical to slap BP cuffs and stick IVs repetitively into a control group, I'd love to know what studies the hand surgeon thinks he's read or read about.
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I will punch somebody who tries to poke, stick or apply a BP wrap on my affected side. Some people have road rage I will have LE rage.
My insurance has denied the Flexitouch machine and the Voltaire gel that helps with the pain. I have filed several appeals with no luck. With all the PT visits they are paying for you would think they would realize it is less expensive to approve the machine. In the meantime, I bought my own from eBay and just ordered new garments from the company. I am lucky that I have amazing LE PT therapists to help. The swelling in my breast is bad again after doing a tiny bit of work with 2lb.weights over a week ago. It is so frustrating. I read everyone stories and they are so familiar. The Drs don't know much about LE or put too much concern into the pain and discomfort it causes. I feel everyone's pain
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Carol, you are brilliant,, I should have asked him for a copy of those "studies" that show no issues with having IV's on the affected side. **next time**
BC2015: did you know that Voltaren gel is OTC in Canada,, and cost $12-20 a tube,,, compared to $55 a tube here? You have any Canadian friends who can help you out? Or try one of those online Canadian pharmacies,,,, Just a thought,,,, And I feel ya with the LE rage.
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Hi there: I see you mention Voltaren which I just got last nite in Toronto, but my LE specialist toldme not to use it, actually I have to to stop the aching sometimes, any comments on this
Traumeel is another one, but pricey tks Sierra I got a small tube for $l0 but it can be pricey too the big ones
ps they always do that re the arm, I do not let anyone touch my right arm.. for anything they DO try at times
good luck to you Glennie, u have a plate full
Sierra 0 -
@ glennie, I have also recently had a conversation about sticks on the surgery side. I have no veins on my unaffected side except in my hand, the tech said she could take blood from my affected side, that a new study shows it's not a problem. I asked her if that info was about breast surgery patients or LE patients and she didn't know what I was talking about. I believe this info is about woman that have had breast surgery avoiding sticks on the affected side not woman that have developed LE. I wouldn't let anyone go against what I've been told unless they can show me what they read and I can see for myself that the info includes woman that have already developed LE.
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Sierra, I have no experience using Voltaren on LE affected areas, but I would listen to your therapist if he/she says not to use it there.
Susan: Agree!!! No sticks on LE arm!! *where's the damn study?*
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Dr. Paula Stewart wrote an article in the NLN journal (in 2009), all about drugs that cause edema. I just searched it for Voltaren (and for ibuprofen, which I think (???) is a topical NSAID. I found neither mentioned in her article. Makes me wonder why it might be off limits on LE tissue.
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Carol,,, excellent point! Not everyone can take NSAIDS due to side effects,,, one of which can be edema. Which could be a problem with the Voltaren since it is also an NSAID. Not 100% sure that the topical product would cause edema,, the way the oral form could,,, but seems possible. It might even be more localized since you are rubbing it on a compromised area too. That LE therapist is probably correct in saying not to use it.
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Is NAPROXEN ok to take or does it cause swell? Its suppose to be antinflammatory.
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Naproxen is an anti-inflammatory (NSAID) so it is possible that it could cause swelling. The % is low,,, but if you have taken it in the past, it hopefully will not be a problem. I alternate between naproxen and ibuprofen myself. Gotta do something for the pain.
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Hi Gals: tks for your input Carol
i do continue to use just a smidgeon as u see the tablets really upset my tummy.. and i use this for arty anyway. not all the time thought it is v. strong I find. Glennie, yes, you have to have something on those bad days now last nite i went to bed v. early rested and no using my buggy .. for food .. so today it is minimal..but the day befor my arm just howled.. i need a new buggy.. wondered those of u with no car how u get your food in.. i do know that some the way they are constructed are better for the arm than others.. a car and chauffeur would be nice
I put some olive oil on my arm afterremoval of sleeve todayand it helped my arm it always itchy when cold weather comes anyway sleeve at inner elbow arm still itches, but hoping it will settle down
Have any of you heard about this Silver sleeve by Juzo? a fitter mentioned it to me .. (not the fitter I am now using however, nor did Juzo suggest it , they said to put a piece of gauze in the sleeve or foam rubber) Hmm
Best to all this chilly day!
Sierra
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Glennie, I do the same as you and noticed no swell but its a crap shoot but a low one. Sometimes we have little choice and thats what makes me so mad about LE. .......dang stupid LE...gggrrrrrr
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sierra, I put anti blister,anti chafing friction Body Glude product on my inner elbow daily to avoid rubbing. Is that your problem? You get it from a running store, cant live without it.
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I had an appointment with the Breast surgeon today and asked about the new study, concerning needle sticks. She said, that even with LE the affected arm can be used. BUT, she said the problem is, with an IV if it were to become "dislodged" ( I have no medical jargon and I am paraphrasing) the fluid would remain where it went instead of being removed in the normal fashion, via lymph system. She also said that if I allowed my affected arm to be used for blood draws to be very aware and get medical attention if I saw red streaks, which I think would be true even without LE.
What I'm taking from this is that it's best not to use the affected arm, but it can be done. Sort of what I thought before I asked.
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She says a le arm can be used for needles... but then she says if you see red streaks go to hospital for treament. Iam not even going to touch her advice with a ten foot pole. She agrees to take the risk and deal with the consequences. Well i guess shes not worried cause its not her arm. Ugh did I misinterpret this? Im confused,
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Iam confused,why would she tell you blood draws are safe and then say but if you get red streaks go get treatment. Sure you could use your le arm she says....well thats because she doesnt have to deal with the consquences she mentioned in her contidictory advice.
Did anyone here see that study? Snowflake I am so glad you inquired as knowledge is power and we are all here in the same basket helping eachother out.
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HI, I'm new to this thread, and I was diagnosed with Lymphodema in September. I have been wearing a compression sleeve and vest, and getting regular drainage massage.
However, in the last week or so, I have been getting real pain in my upper arm, so have not been wearing the garments. If I stretch my arm or raise it up (exercising it like I've been told to do), I get shooting pain down my arm and into my fingers. The muscle under my upper arm aches constantly, as do the shoulder and underarm areas. I must have had some nerve damage during surgery, as this whole area has never felt "right" since January, and there is a large patch on the back of my arm that has no feeling at all on the skin.
My surgeon doesn't want to know me (feeling is mutual), my Oncologist only knows about cancer drugs, and my LE therapist says it doesn't sound like an LE problem but said to leave the sleeve off until it's sorted.
I went to my family doctor yesterday who says it may be muscle damage, and has given me codeine and a sling. I'm going back for a follow-up tomorrow.
I am appealing to the combined wisdom on this thread and asking - does this sound like lymphodema, or damage from the sleeve (it may be a little tight), or have I been a little enthusiastic about stretching?
Any suggestions?
Thanks,
Sue.
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what about a lymph node transplant?
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suems,
The numbness you described is very common after any lymph node removal and it can take a long time to resolve, if ever in some cases. Your other symptoms sound like something else. Hopefully your family doctor is on the right track. Surely you could still do some manual lymph node drainage while it heals.
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Hi Sue, From bmx forward 3 years ago, I had the pins and needles, just awful feeling; and was told by my MO, PS, BS it was nerves regenerating themselves, it wasn't until I had a bad case of bi-lateral breast cellulitis this March which took months to get better w/ antibiotic that the pins, needles and new fullness in trunk, under upper arm and tingling down my arm to my fingers and occasional "bee stings" in random places on my arm that got me a referral to a LE Therapist by my PS -- acc. to my LET all my symptoms, including the cellulitis, were from LE. My under arm skin is much thicker than the rest of my arm too & I have orange peel on left breast from the cellulitis scarring which can foster LE development. I'm in my 3rd week of LE therapy MLD and wearing a sleeve, gauntlet daily and am feeling so much better. Definitely no more bee stings and tingling down to my hands. I have no advice for you as I'm a beginner here, but maybe you can see another LE therapist? Seeing one in the states requires a prescription, maybe you don't need one in AUS. I hope you get some relief soon you've had such a hard year already. Jill
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Someone mentioned dislodged IV's, so I thought I would share this: During my cancer treatments I had to have the entire main vein stripped out of my unaffected side. I got low blood counts during treatments, and got pneumonia. While in the hospital with pneumonia I had a bad IV. I developed phlebitis because of that bad IV, and all the chemo and antibiotics going into that arm. I spent weeks in the hospital while they sucked out all the infection from that arm so I didn't lose the arm. So now, I can't have needle sticks and IV in the affected arm (LE arm), and the main vein needed for IV's has been stripped out of the left arm. When I go to have my BP checked they can't hardly hear my blood pumping to get a decent blood pressure. It's altogether impossible for them to get a BP reading with a digital blood pressure cuff. It's the old fashioned way or no way. I didn't have a port during treatments. Because I didn't have any positive lymph nodes, the protocol back then was only 4 treatments, so they didn't think a port was necessary. They used my unaffected arm for everything. While in the hospital with the arm fiasco they ran a central line, but initially put the IV in my foot. A bad IV can be a nightmare. I am living proof. Definitely avoid IV's in the affected arm or arms. Now if I had to go and have an IV, I'd have to have them put it in my foot. I have already had cellulitis this year, so I told my hubby if I am ever unconscious never let them touch my right arm. I often wondered what women do that have had breast cancer on both sides with needle sticks and blood pressure.
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Hi Sue, sorry you're having pain I hope you can find out the reason for this. Next time you see the LEPT ask her/him to check for cording, just to rule it out.
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Sue - My RO & LE therapist determined much of my pain was from radiation fibrosis & thickening scar tissue under & around the missing lymph areas - so it was a two way treatment. And do get them to look at cording. Hope you can get this resolved soon.
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Suem. I think snowflake and minus have apoint. It does sound like cording but I have no experience with this.Hopefully more girls that have had cording will come on the thread. Welcome to the boards. Stick around and ask any questions.
Paintthesky. Yikes that sounded like a living nightmare. So glad you made it thruall that dang treatment. You deserve a gold metal
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Thank you all. I see my LE therapist on Monday and I'll mention cording.
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suems - sounds pretty normal, that's how mine has been ever since treatments. Numbness after surgery and ALND is normal, my whole axilla, underarm, back of my arm and around my chest and back are numb still. I get a lot of aching in my arm when my LE is more swollen, there are times that it feels like my armpit is really swollen and achy, Also, I see that you had rads, they can cause nerve damage. For a while I had that feeling when I stretched my arm, there is a nerve that can be damaged from the treatments that can cause issues with your whole arm, radiation induced brachial plexopathy. My nerve was just impinged and they had me do some exercises to gradually stretch the nerve and get it moving a little, mine seemed to be stuck from having radiation, it causes scar tissue that won't let the nerve move correctly, so the stretching and other exercises loosened it up. My LE therapist is the one that gave me most of this info, she didn't stop treatment. Check out the some of these websites they can explain a lot of your symptoms -
http://www.lymphedemablog.com/ If you join his facebook page, called lymphedemaguru, he'll answer your questions personally, I private messaged him, he got back to me within a day.
I'm sure there are more sites, just can't find them right now.
Is your LE therapist certified?
Good luck
Linda
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LindaKR,
Thank you so much! The Lymphodemablog website is awesome! I spent hours learning all sorts of stuff and have now figured out it's Radiation-Induced Brachial Plexopathy - nerve damage from the rads. I have printed out a couple of pages and will take them with me when I see my LE therapist in an hour.
It's such a relief to know what's going on, and that there is a treatment process for it. The only other possibilities are cording or a new met in my arm - so I will get her to check out those possibilities too.
That's why I consider this message board to be the best source of info I have ever seen. Thank you to everyone who replied - I love you all.
I will post again after I have seen the therapist.
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