GRRRRRRRRR I HATE LE..........
Comments
-
Oops, I forgot to say what I meant to say! I am having a rough time with swelling right now. Doing so-so with the dietary/salt watch over Thanksgiving. I am calling my therapist tomorrow. Pretty sure I am feeling in my arm. Oh, and Blue Cross denied my appeal. Apparently, the Solaris night vest is considered experimental. Yeah, right.
I have to find out if there have been any peer-to-peer studies on the use of this. BX said they are not aware of any. I am not quitting!! I have 60 days to request next level of appeal. If I had this vest months ago after my surgery, I might not be having issues. Who knows, but I think I need to order and pay for one myself and then see if I can get them to pay for another one. Have I mentioned lately that I hate LE? Now my arm. Really??!! Have been wearing my sleeve and glove, doing deep breathing, elevating, and hydrating. 0 -
I just found this entire website today, and then this thread --and am so happy I did. I've had lymphedema in my arm, hand, back area since BC surgery in 1998, but for the first time saw mention of something at the very beginning of this thread that has been a chronic problem for me --- paronychia! (And now I even know a name for it.)
I've had problems with swelling, redness and infection around the base of my affected side thumb and index finger. Over and over different doctors have taken a look at it, act like it's very trivial, and prescribed either a topical anti-biotic or an oral one if the infection is bad enough. But it never really goes away. And through the years, both the thumb and index finger nails have grown all rippled and malformed. If I happen to irritate that area, by for example reaching in my purse and a comb catching that area, inevitably it swells up an angry red and is painful for quite a while.
It was just a relief to have it acknowledged that this could be due to the lymphedema in my right arm, since no doctor has ever made that connection for me before, even though I suspected it. And maybe it is trivial, but maybe not so much for the person who is experiencing it all the time.
0 -
KittyDog, thinking of you. What a great tech you had. When all the scans come back negative, you will have wonderful peace of mind. Hugs and brownies.
Tina, good luck with your appeal. It sux that you have to push so hard for it, but I think you will be successful.
3jays, sorry to hear you're hurting. Hope it gets better soon.0 -
Ellemint, I have a chronic paronychia on my finger of my LE hand, and it started before LE, but just never goes away. My derm gave me lotrisone and it caused it to blow up over night.
Once, it did get actively infected and I had to drain it.
I had another dermatologist tell me to apply straight hibiclens to the area to cut down on bacteria and fungus, and when I'm diligent about it--apply with a q-tip at night, it gets so much better.
Kira
0 -
Well I looked. grrrr Now to wait to tell me whether all those little dots I saw are normal.
Here is my question about LE. I got my new sleeve and glove. I am not sure if the glove is the problem or my hand is the problem. It makes my thumb area hurt. I have neuropathy in that area bad and now I have started with trigger thumb too. I haven't been wearing the glove and it is finally feeling better. Do you think it is the glove or the new problems thanks to the arimidex. He also changed my gauntlet to the same material my custom sleeve is made out of. I really don't like it. I have also started back having my fingers turn purple again. I know it is a circulation problems like the Dr. said because when it happens my fingers are cold. Something about the blood vessels having spasms. Taking glove or sleeve off doesn't happen and it seems to be a cooler weather problem too. Grrrrrrrrrrr
0 -
Oh and thanks for thinking about me today. Thursday seems too far away right now.
Brownies for everbody.
0 -
Hmmmmm.... I go back to LE therapist on Thursday. Haven't been there for several weeks because he wanted me to finish rads and have a break to settle down. I am having pretty similar problems to you, but I think it is the glove. I am not sure why. It doesn't really seem too tight, but my hand gets swollen after wearing it. It also gets swollen if I don't wear it. The only thing that keeps it from being swollen is wrapping it. Grrrrrrrr.....
Hang in there, Thursday will be here before you know it. And brownies definitely help.0 -
Christine5: I have been using a flexitouch machinie for the past year and am delighted with it. Because I have fairly severe osteoarthritis in my non-LE hand, it is hard for me to do MLD effectively. I try to combine the use of the flexitouch with Lebed exercises and also wear a compression sleeve and wrap at night. With all of those measures, I keep the LE under control and manage to lead an otherwise pretty normal and active life. It all takes a lot of time but I listen to audiobooks or good music while using the flexitouch and that is my quiet time. Good luck.
0 -
Kira,
thanks for the tip---hibiclens, I 've never heard of it, but will check it out.
0 -
Also, I'm not expert in this, but for you ladies whose fingers are turning blue while wearing the glove and sleeve, I was taught that is a clear sign that things are just too tight and your circulation is being cut off.
0 -
I am about to explode.............................As everyone knows I started this frigging LE journey with sleeves, and shit back on July 6th...........I went from bandaging, and doing it quite well, to 2 custom made sleeves each costing $150.00 which did not fit well, and they tried to make them 2 times................ok, then I got a sleeve from my LE therapist (gratis) which was a sample given to her by a salesperson...........used that for a while, then it was decided since that one was working ok, lets go for a "ready made" sleeve....................ok, we did that..............they came in the mail................sucked, actually sucked......................so tight it stopped the circulation, and caused my had to swell..................I called them, and they told me I could try another size.......................well my LE therapist ordered another one, not as heavy duty as the 2 they sent.............have not gotten that one yet .
Today I got an email from Aetna, showing me what they were billed for the last 2 sleeves, which would be the ones I called about and said I was returning.......................those bastards at a company called RHC, charged Aetna $650.00 for the 2 sleeves.................they covered their share, and now I am responsible for the balance...............which is $260.00,............and the friggin things are no good to me.
They will get a phone call tomorrow.........I am so steamed, I can't see straight...........it only cost me $150.00 for a custom made sleeve, and these freaks are charging $650.00 for 2 friggin sleeves "out of a box"...........................oh I am about to blow..........................Tomorrow cannot come fast enough for me............................I am livid.........................talk about thieves.............................they are not gonna like this phone call...............I can't believe it, and my next call after them will be to Aetna.....................talk about Insurance fraud.
0 -
Kay, I just noticed your tag line and love it!
KittyDog, still sending good wishes.
Wouldn't it be great if there were giant LE supply stores and your therapist could accompany you and watch you try on sleeves and gloves? They would also supervise the fitting of custom sleeves, gloves, night garments . . Oh, and they would have lots of "loaner" models so you could try a few for a couple of hours or days and then return and order the one that fit best? They could call it "Lymphedema Land . . for all things related to LE". They would have classes in wrapping, self MLD, Lebed, etc. Yes, in my dreams! Oh, and they would have advocates there who made sure all the necessary info was submitted to your insurance so everything you need is approved!
Come on, Ducky, let's go to Lymphedema Land! You will find your dream sleeve and the advocates will handle the snafu with your off-the-shelf sleeves, and get my Solaris night vest approved by Blue Cross.
I think I'm going off my rocker lately, ladies! Please let my LE therapist return my call tomorrow and figure out how to get me in to see her ASAP! Fingers crossed.0 -
ellemint: welcome to lymphedema land, where the "swell sisters" come to vent!!!hahaha
im feeling better today, thanks, ladies. i ended up wrapping like a mummy, but today is much better. i think it IS the cold front coming through.. i FEEL for my sistahs that live up north!!! it might be hot here, in the summer, but i don't know how you deal with the winters!!!
i've noticed, some states allow le therapists to also be fitters. not so in Fla.. it so makes sense. so why would they!!!i'll have to start with a new fitter soon.. i want two different sleeves/gloves; so i'll be fighting with the ins company, im sure!!!
i was good with the salt over thanksgivng.. i've finally realized its just NOT worth the price.. and i bring my own, unsalted air popped pepcorn to the movies, now, also... simpler....3jays
0 -
I am so sorry you cannot get the perfect fit Ducky!
My first glove made my fingers numb. My therapist told me to put a tube of lipstick or something just slightly larger than the finger in it while it dried. If that did not work we would send it back. After two nights it worked! I have had to do that for my gauntlet thumb--all of my hand garments. My fingers were only getting numb, not purple. They also did not swell.
Tina--I love lymphedema land!!!! My therapist though has done a great job of getting me well fitted sleeves. I go again Friday for a fitting. She is so careful and spends a lot of time measuring.
Becky
0 -
A question because I am getting mixed information. I think I probably have a pretty bad case of LE, just started with it at the end of September, and I can't keep my hand from swelling unless I keep it wrapped all the time. My MO said I will eventually reach a point where maybe I will just have to wear the sleeve some days and won't need to wrap at night. My LE therapist said I will have to wear the sleeve during the day forever and he'll get me a night garment when I am as good as I am going to get so I can do that instead of wrapping, but will have to do that for the rest of my life. I hate hearing for the rest of my life, but is that probably what I am in for?
0 -
Kay, just my impression here, but my LE therapist--and she's been doing it for over 20 years and worked with all the "greats" in NYC when they had a Foldi clinic model--she believes that we can create new paths for the lymph to flow and that things do gradually get better.
I think that everyone has kind of a baseline impairment, and with good care, we can improve the situation, but there will be periodic flares.
For me, and it's weird how memory dims so soon, with a chronic condition, it came on three weeks post op, progressed through radiation, and was very problematic for at least a year. Was getting better, then I broke my hand. Now a year later, I still wrap at night, but only wear day time compression intermittantly.
I asked my LE therapist why my hand tended to be worse at night, and she said: Because the fluid has been accumulating all day. Duh!
It's also a disease of inflammation, and really should settle down, IMO.
Also, hands--it's in my left hand, and I can tell you from experience, that hands are HARD. My LE therapist had a pediatric dentist in NYC whose hand they just couldn't control, and she's always telling me how hard hands are.
When the LymphaDiva's got Andrea Cheville to write about the need for gauntlet with sleeve, she mentioned hands:
http://lymphedivas.com/lymphedema/gauntletandsleeve/
Even a normal lymphatic system works harder to drain lymph from the hand than other parts of the arm. This fact explains why hand lymphedema is often the most challenging to treat and why lymphedema specialists take great pains to prevent it
And I met Andrea Cheville MD of Mayo Clinic at the NLN conference: brilliant, beautiful and just amazing, so take it from her--hands are tough.
Personally, I have to wrap, the night garments just don't cut it for my hand. I resent it, but I don't resent the results.
Kira
0 -
Ahew and Jo5- thank you for your imput on the flexitouch. I am really hoping it will help. I have had a few meltdowns over the past week, I am so tired of feeling like this. I am still struggling with an abdominal issue from my survey in July. My dr thought it was a hernia but the CT said no. I am so fearful of them not being able to discover what the problem is and having to deal with another chronic issue. My internist believes the blood clot I developed in my leg (from the July surgery) will be there always and I will need to be on Coumadin for the rest of my life. I have appts tomorrow and have some anxiety about going. Might be an ambien kind of night. Thank you ladies, you are so very appreciated!
0 -
Does anyone know of any LE clinics or clinicians in Orlando, FL? Thanks in advance
0 -
Thanks I am going to join you in Lymphedema Land. Feel better already!
I am still waiting on my referral back to the clinic for my leg. Grrr. I talked with my Dr.'s office last week and she said she sent it on Nov. 4 but she would pull it back up and send it again. I gave them the benefit that it was Thanksgiving but I still have not herd from them. If I don't hear from them by Thursday, I have already decided that I am going to ask to go to the other place in our state. There is no call for it taking a month to set up an appointment. Once they set it up, there is another two to three week wait to get evaluated and then two to four weeks to start with your appointments. My local clinic is overbooked and needs more than two people dealing with LE. Grrrr.
My hand turns purple sometimes even when I don't have the glove and sleeve on. I wish I knew what he called it but it did have a name.
Ducky I hope you have raised holly Cain today!
0 -
I can not imagine what you gals are going through. I'm one of those in the 6 month check ups and absolutely hate it already. FUC* CANCER!!!!!! can I type the actual word here, because just the FUC* is not cutting it for me.
0 -
Thank you Jo 5, I currently wear a sleeve, gauntlet and compression bra, do the exercises but not very faithfully and my left arm doesn't last five minutes doing the massage. I went on the flexitouch website and it did mention blood clots being a problem with using it. I'm hoping that because it is in my ankle and the pump would only be on my trunk and arm, maybe they will approve it. The company got all of my information last week and no one has contacted me about it. My co payment is 20%. And I'm having trouble finding the cost of the darn thing, any ideas?
MariaB hang in there! Six month checks are hard and I'm with you 100% on hating cancer and everything connected to it!
We need brownies and lots of them!!0 -
Jo-5
I never thought of a paint roller for the back...always a tricky area for me to reach...I'm going to try that out
0 -
Hello Ladies,
I went to an LE Dr. and he said he didn't think I would benefit from a sleeve because my LE is way up high on my arm. I'm leaving for my first vaca in years and I'm worried about swelling on the plane. Does anyone have any input, ideas or comments?
Also do you swell up when you have a bad cold?
0 -
haltsaluteatx - Check through the Florida Hospital Cancer Institute. I see a great LE therapist in Lake Mary, north of Orlando, through Florida Hospital Rehab. MD Anderson probably has LE therapists as well, but I don't know anything about them. Good luck with your search!
0 -
Valgal: the official National Lymphedema Network recommendations are that if you have LE, you wear a sleeve and consider gauntlet/glove on a plane.
I don't get why he wouldn't recommend therapy as lymphedema can be patchy. It doesn't mean you don't treat it.
Here's the NLN stuff:
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
"Air travel presents several considerations for individuals with lymphedema and for those at risk for
lymphedema. It is the position of the National Lymphedema Network that:
Individuals with a confirmed diagnosis of lymphedema should wear some form of compression therapy while traveling by air.
Individuals at risk for developing lymphedema should understand the risk factors associated with
air travel and should make a decision to wear compression based on their individual risk factors. "
And, LymphaDivas hired Andrea Cheville MD of Mayo Clinic to address the issue of hand protection with a sleeve:http://lymphedivas.com/lymphedema/gauntletandsleeve/
"For women with established lymphedema the decision to use a gauntlet or glove is based on slightly different considerations. Lymphedema of the upper limb may be distributed in a surprisingly patchy manner. For example, lymphedema may be restricted to the underside of the upper arm or the back of the hand. It goes unsaid that lymphedema is a very individual phenomenon. Many women with lymphedema never note hand involvement despite use of an arm compression sleeve for many years. However, even these women should remain watchful for hand swelling since lymphedema is a dynamic process with the potential to change over time. A quick check for hand edema after engaging in the activities listed above is always warranted. Differences in skin texture or the visibility of bones, veins and tendons may indicate lymphedema. These changes suggest a need to consider some form of hand compression. "
So, I vote for a sleeve and gauntlet. And have a sleeve and treat your localized lymphedema.
Sometimes I wonder who these self proclaimed LE doctors are, as there is no recognized specialty in lymphology and any doctor can call themselves an LE doctor.
And Valgal, many, many of the women on these boards swell when they get a cold--lots of reasons, likely inflammation and the illness.
Feel better.
Kira
0 -
Valgal...how about exercise and do your lymphedema massage intermitantlly all the way there???
0 -
OK, started PT today. apparently my shoulder is "almost" frozen. Good news, she thinks she can work it out, bad news, the therapy hurts like heck, and she was going lite on me...over the summer I began water aerobics with teh attituide "use it or loose it" and I thought by mild, repetative stretching I could work out my own kinks, and strenghten my arm. Honestly getting into the sport bra (which holds my swim foobs and makes me less conscientious-more cover up) anyway, getting into teh bra was a chore, but I went faithfully and thought I was doing gentle simple exercises. Long story-short, I went from doing teh arm exercises to observing, and I would stay in teh water up to by chin and roll my shoulders while they stretched thier arms, I wouldnt even try anymore after a few weeks. I seem to have favored and thus injured my right arm by compensating for my left's immobility. My edema on my left side is kinda bad, not terrible, but then again, it was never too bad. I kinda stopped my exercises, dont wear my compression garments and hardly ever use my pump...WHAT was I thinking? Well as you can see, my "plan", or ignorance made my situation worse then ever. The "massage" to loosen my cramped muscle "nodules" -KILL! I saw stars. I am very concerned I let this get out of hand. On teh miraculous side, since I have been doing insulin, my sugar is doing better (not great, but better) and I HAVE NOT had any cellulitis episodes this month! I dont think teh PT knows anything about lymphedema exercises/treatment...she didnt seem to understand about compression garments or wrapping. Bottom line she is digging deep into my tissue to try and fix my shoulder. They are also, (THANK GOD!) working on my back, too, as it has been KILLING me teh last few months (turns out I have scoliosis...geez, I am only 49...but I have been over-compensating my whole body to avoid using my arm, shoulder). ALSO she mentioned to me my insurance co (BCBS) is now contracting out approvals for therapies, and it has been "a nightmare". So even though I am entitled to 60 visits a year...they may...and probably will, try and cut taht WAY short. SO she is trying to loosen my shoulder, working on my atropied chest muscles from radiation, tring to relieve my other shoulder which I injured by using it too much, and working on my back pain. argh! WHat do you think about the deep tissue massage on my lymphedema arm??? She said I barely avoided surgery on my shoulder, it is REAL bad. I have kinseo tape on my shoulder also, it was folding "in" from the contracted muscles. THANKS to all who respond, hugs Terri in MI
0 -
PS maybe teh PT really does know whats shes doing? despite my concern over her deep massage on my dema arm to get at the nodules that are helping to feeze my shoulder...I just pumped, and my stomach is soft...its been a long time...usually it is full and firm...now its all jiggly...yay??? hugs terri
0 -
PS I guess I should have said WHAT my trouble with my shoulder was, when I would try and use my arm like put my shoes on or basically anything (even driving was stiff and I had to have my hands lower on teh wheel) I would get spasms and bad pain. It hurt and was embasrrasing when I would yell out and grab my chest. These were different spasms and pain from when the radiation was healing initially. have a lot more movement and range this morning, I am encouraged. hugs terri
0 -
Terri--I broke my LE hand and after wearing the cast for 6 weeks, realized I had lost a lot of motion in my shoulder.
I did go for PT--with a PT who has some LE training, and she did a lot of myofascial work on my left shoulder, chest--and it worked.
She was mindful of LE.
Pain is bad for LE.
It sounds like you needed to get back into the LE self-care--which should help your pain, and need to loosen those adhesions on your shoulder.
Be careful if they try and strengthen you--often the theraband exercises involve repetative motion.
Here's a link to LE for health care providers--you can share it with her. The APTA says all PT's can treat LE, but realistically, most PT's have never been trained in it:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Please let us know how you're doing
Kira
0
