What else can I do?

Moiralf

Hi Everyone,

I usually hang out on the stage 4 forum but need to come to the experts here for your advise.

I was dx 5 years ago with stage 4 from get go and had a mastectomy and 13 nodes removed from right arm.

About 18 months later I developed lymphedema in my right hand and arm. A little under my arm in the back but nothing major there.

I have had gloves and sleeves from Jobst and Juno. Also was under a LE therapist and had massage monthly and did manual drainage at home. Up until this year the swelling has been there but manageable and to be frank I rarely wore my sleeves because they never made any difference. In fact when I wore my glove with my sleeve my hand seemed to swell more rather than go down. Glove by itself, still swollen. Even flying, with or without garments, no difference.

Now, beginning this year I thought the arm was getting bigger. LE agreed and I was measured and fitted with a custom sleeve and glove from Jobst. Still monthly massage and this time wearing the garments most of the time. Due to my job it was often difficult to wear the glove but the idea was that then I took the sleeve off and wore the glove in the evening. Also I couldn't wrap due to my job. Arm didn't really change though doing all this. Still bigger than before.

In August my husband and I moved and I changed health districts. Here the health board does not have a specially trained LE therapist and physios do an assessment. Because I was not working we all agreed it was a good opportunity to do a weeks wrapping and measure the results. Not a lot of change in measurements, some decrease but not major. Physio said try a month of wearing sleeve and remeasure. No real change again. So her response was that is all we can do and you are just one of these women that do not response to compression. Wear your garments or not, it's up to you.

I'm not a quitter and that didn't seem enough to me. I have now found someone to do drainage massage and I spend time doing manual drainage twice a day. I get half hour massage once a week from the masseurs and she has some training but not expert. There are no experienced LE therapists around here. So we are learning together. I can see about paying to have more wrapping done but the physio said if we hadn't had a response in the week we did do it, the chances were that longer wrapping would not result in any changes.

Now I have added aqua movement to my plan. I have a fear of water so actually swimming is out but I go to the physio pool and spend an hour doing arm movements that I learnt before that were suppose to help move fluid.

Here is my question after that long intro. What else can I do?

Should I give up. After a week of water therapy, no change but I realise it can take time. Should I actually get help and do real aqua jogging? Like I said I prefer to keep my feet on the pool bottom but if it is better to go to deeper water I will.

Thought about reflexology which I have done before. What about acupuncture? I also thinking about getting a lympdiva sleeve and gauntlet as I might as well have cool looking sleeve if I have to wear one all the time.

Would appreciate any help as I'm determined that if the fluid got there it can get back out again. 

Any suggestions would be most gratefully received.

Moira

kira66715

Moira, boy, you are really fighting this battle without a lot of support. In my opinion, there is no one who can not reduce further, the only exception would be if the lymphatic drainage is somehow blocked, and scar tissue/treatment effects could be contributing to that.

Nitocris has published some great exercises to do in water, I think she calls them Ai Chi, if you could pm her, she'd let you know--she has amazing references that she finds on the web.

The aqua therapy works best if the water is up to your shoulders, and you don't fatigue your arms. Dorit Tahir published an aqua therapy guideline, and Nitocris has it.

The key to reduction is not the day time compression sleeve, but bandaging or a night garment. It does sound like bandaging didn't do miracles for you, but hypothetically, bandaging reduces and compression maintains the reduction.

I'd suggest pm'ing Nitocris and searching for her posts, as they're loaded with information.

And reflexology can't hurt, and there are concerns about needles in the affected quadrant, but recently studies are being done doing that, and some women get good results--see if the accupuncturist can use meridians that don't involve needles in the quadrant.

Hopefully more people will have better ideas.

Kira

Binney4

Moira, I'm so sorry you're having to struggle so hard with this! Grrrrrr!

A night garment might really help (Solaris or JoviPak). And they're comfortable too, as they support the swollen tissue while helping to reduce it. I'm wondering about the effectiveness of the wrapping if the person doing it wasn't well trained, because the technique calls for careful gradient compression Anything else would not reduce the swelling and might actually make it worse. The night garments are fitted to your measurements with gradient compression figured in (and both companies claim they'll make adjustments for reduction in swelling), so the issue of the proper wrapping technique isn't a problem.

Lymphedivas doesn't make a glove, just a gauntlet. Since you already have swelling in your hand that will cause real problems with swelling in your fingers, so maybe hold off on that.

Please keep us posted. Gentle hugs,
Binney

BeckySharp

Moira--I was wrapped for quite awhile before I started getting results.  One week was not enough.  There are several women in my support group who were wrapped for six weeks and are now in sleeve and gloves and night compression. I now wear a jovipak at night and sleeve and gauntlet in the daytime.  Some women on this board cannot take a lot of compression.  In my case I needed more and still have to have it to control my swelling even though it is minimal.  Don't give up.  Keep at it.   

Moiralf

Thank You for the wonderful and helpful replies.

I had read here that many women had wrapped for longer but my physio said her experience said no. She is trained but I don't think she is vastly experienced. I live in New Zealand so we don't have lots of options. My old therapist did specialize in Lymphedema and my treatment and garments were paid for by the health board. Coming to a new health board and services are not the same. There is one private women who does wrapping but she is in america until Jan so when she comes back I will get in touch and she what she recommends. I will have to pay for it and it could be very expensive.

Funny thing here is that night garments are not recommend at all. I queried that some time ago with my old therapist and she said they showed no real benefit and would not be paid for. Her costing was around $1000.00 for a very bulky looking arm thing. I would have to be very sure I was going to get real benefit before I sold one of my kidneys to pay for it.(Joking) No-one would want one of my kidneys now!!

I am definitey going to check with nitrocris and see what i can find out. I do stay shoulder deep and make sure my upper arm is under water level and moving through the water to cause ripples for massage.

Kira, I keep threatening my therapist that I just going to stick needles in my hand and arm and watch the fluid run out. I'm only half joking but it is worth it to see the look of horror on her face. My new therapist , and to be honest she isn't really, has little training but does the massage for drainage. That's about as much as she knows. She wants to help and that I appreciate but it is like battling against fog. No-one seems to have any answers or be prepared to look for them. So, it's up to me, but that's how it usually is isn't it. 

Well, I'm not giving up so onwards we go. Thanks so much for your help. We have no support here and I really can't be the only one in NZ with this problem.

Moira

Anonymous

Hi Moira, Im not sure what DHB you came from and where the jurisdictions start and end and where Dunedin fits in, but youre right.... The DHBs are soooo different. From memory my LEist said that somewhere down your way, (Canterbury???) you are funded for 2 compression sleeves each year, where as our DHB is only one. I think up until very recently Auckland wasn't even funded at all. It's so wrong to have all these inconsistencies. I've complained about this many  a time, and my LEist says each DHB is alotted funds and their own boards get to decide where the dollars are spent. I also am funded when I see my LEist around once a month. Are you saying where you are now you are not funded for LE visits?

I keep threatening my therapist that I just going to stick needles in my hand and arm and watch the fluid run out. I'm only half joking but it is worth it to see the look of horror on her face. 

LOL!  I can see it now. My next appt could very well entail me feeling a sudden attack of naughtiness coming on.

Moiralf

Hi Musical,

Down here there is no funding for massage, so I have to pay for every visit and find my own therapist as the hospital doesn't provide any service. Not even sure how trained each therapist is. They are physios who do lymhedema as well. My own therapist is more a general natural massage therapist. She would be the first to admit she is learning as she goes. She does have some lymp drainage training but not an expert.

I think we get one garment a year down here I think but I haven't got that far yet. My therapist said I should get onto finding out cos it has been a year since my last one and they only last 6 months on average. 

I knew my old therapist really well  and she knew I wouldn't do it but she never quite knew that one day I wouldn't be pushed to trying it out.

So I  guess enjoy the benefits you do get where you are.

Moira

Anonymous

I am sorry to hear theres no funding for massage Moira. Seems unfair to me but it is what it is and we have to do the best we can with what we've got. Still, it would be nice to have some consistency, like, how is Southland BC needs different to Greymouth or NOrthland or anywhere else not only in NZ but worldwide. 

Yes I was told too, that sleeves last 6 months. My Jobst Custom Sleeve cost around $300. Just about fell over backwards. Night garment 1,000??? wow.  When I got my last sleeve it was a bit too tight and so I had to "break it in" by using it for a couple of hours and alternating it with my old one. Also my LEist says to wear sleeves all day now instead of just when I was being active.

Becky may I ask what you mean by ...

"Some women on this board cannot take a lot of compression"

Do you mean, duration-wise or the measure of tightness, or both?  Sometimes I find my arms ache a little with the sleeves and I just have to GET EM OFF! Whether this is a slight difference in how I put the sleeve on or whether I'm carrying a little more fluid I'm not sure.

Momine

Moira, my swelling is very minor, but used to be worse. Not sure if my experience "counts" (given the less serious swelling), but I found that eating anti-inflammatory foods seemed to help a little. It is nothing very complicated really, just leave out or limit white carbs, sugar and processed stuff, make up for it with greens, fatty fish, garlic, leeks, onion, cabbages and chilis (if you like them).

I also think the water exercise is a good idea. Further, I found that exercise generally helped, even walking and even if I had to walk with my bad arm draped over my head at times. I do wear a sleeve and glove though when I exercise.

BeckySharp

Musical--I mean tightness wise on the compression.  In my case the more compression I have/had the more my measurements went down.  For some it seems it makes the swelling worse.  Maybe some who have that problem will weigh in on that.

Binney4

Musical, some of us are compression sensitive. Basically, less compression is better for controlling my swelling. In practical terms, when I wrap my arm I still have to use gradient pressure (more at the hand, less as I go up), but instead of tugging the bandages with each turn I wrap gently, and if necessary add more layers of bandage rather than tighter bandages. For garments, I can't use the heavy-duty stuff like Elvarex and have had to find a softer material with less of a containment factor--in other words, just not as firm.

If I wrap too tightly or wear too-firm garments the reaction is not only more swelling ("rebound swelling"), but my fingertips turn strange colors--usually a bluish tinge for me, but for some it's red or even white. We're all different. It takes a bit of trial-and-error to figure it out. Hang in there!
Binney

kira66715

Musical, there are cheaper alternatives to a custom night garment: for instance, Solaris makes a Caresia Sleeve that can be wrapped over, and biacare makes foam to be wrapped over as well. It takes a lot of the need for custom and learning how to wrap out of the equation.

I don't know if lymphademaproducts ships internationally, but shipping is free with them today

http://www.lymphedemaproducts.com/

http://www.lymphedemaproducts.com/products/cd_arm.html

Consider a non-custom night garment, either one that doesn't require wrapping over it, or one you wrap over and can control the amount of compression you apply.

Kira

Anonymous

A collective thanks for your helpful comments

Becky thanks, and thats great that that works for you! For me, I get random fluctuations in the measurements partially (I think) because I retain fluid to one degree or another which ISNT consistent, ( or convenient lol) my sleeves can annoy me some days and be fine, others.  It seems though, it's become more of a more permanent problem just below the elbow. Makes me wonder if wrong fitting garments were the cause of that, though my LEist says it's a common problem area.  I also have a sensitive area on the outside edge of the wrist. Seams from glove digging in plus seam from sleeve. It's a troublesome area because of natural hand positions and movements causing puckering sometimes.

Binney  How long does it take you to wrap? I am soooo sorry you have to do what I think would be so infuriating... aside from knowing we just have to get over it and on with it .  Wrapping scares me spitless! Can't remember who but I saw an interesting comment yesterday here about day garments dont reduce anything it's the night garments. I didn't know that. Would be interested to know why that is. I too get the bluish fingers. I've mostly had issues to one degree or another with getting gauntlets and sleeves to fit and this last time when my LEist measured me, from that time and when I got the garment I must have put on a little weight or retained a little fluid, because it alone (before doning the gauntlet) caused my hand to go blue. My recent measure up for new garments included a person who was helping/instructing my LEist for glove measurement. I have a very small hand, and I thought it much more likely to cause issues because of this and that the jobst garments Ive had are very robust. Surprisingly my glove has not been too bad. Today though I can see my fingers are somewhat redder than my other hand so I probably cast it off for a while.

Kira thankyou so SO much for these links and tips! I'm going to check these out with my LEist. It will be early January. I have to say she is a great person with a wonderful bedside manner and I get on with her very well. She may not know everything but who does and she knows a lot more than me. I feel soooo fortunate to have her. She travels a lot around NZ and to OZ to conferences and seems to be always increasing in knowledge about new things etc. She was open to me giving her an article that Binney put me onto about prophy side being at risk too. As mentioned above in this thread, some areas in NZ are sadly lacking and others are streets ahead. Certainly pays to be our own best advocates. Another thing about my LEist, is she is run off her feet. Others have come and gone to help her but she sadly seems to be left holding the can, and for a large area. This is probably because of funding issues and how our DHBs work.

hugz4u

Musical, I so hear you on your arm sometimes feels achy with the garments and you have to rip them off. This is the exact feeling I get when travelling in the mountains up and down the valleys. As soon as I get to lower elevation (around 2000 feet or lower) I feel better within a hour time frame. Anyone know what I should do in this case? Leave sleeve on and suffer or rip off and put back on in lower elevation? This is the main reason why I won't go back to Yellowstone park as the elevation flucuates from 4,000- 10,000 feet and back down again all withing a hours timeframe of driving. It's my fav place in the world and dang it, I can't tolerate that tight achy feeling! So I have park my bones at home until I have a solution. Dang, Stupid LE.

Musical, You gave me a chuckle today as you call your Lymphedema therapist an LEist. That is the first time I have seen IST to abbreviate an LE therapist. We use many short forms here for our Lymphedema therapists, When I post I call mine, my LE girl, or MLD girl, but I have never seen LEist. I like it.... and totally get the connection! So today I guess I need to make an appointment with my LEist!  There are Physiotherapists, physchologists, so why not LEists?

Anonymous

"park my bones at home" LOL hugz ..... and me?  I guess I'm getting a bit slack on the acronyms....I mean these days the English language is challenging enough without remembering all these newbies...so I guess I make em up as I go. Well sometimes. . 

Yea stoopid LE. Yellowstone park .... Wow I saw a doco on it some months ago and what an amazing place!  I Love the Grand Canyon too. Hey perhaps if we go into that rent in the ground as apposed to Yellowstone, it might fix our LE!!!  Ideas anyone?

If we are to wear our garments (definitely) whilst flying, it makes sense about this altitude thing. Only difference is we have our feet on the (higher) ground as opposed to in the air. Just a thought.

yellowdoglady

Hi All,

I developed lymphedema a few years back a while after I had 14 lymph nodes taken during a lumpectomy.  That was the right thing to do-4 of the 14 were malignant.

Anyway, I RAN to get a lymphedema specialist to look at the swelling once I realized it was not just from the surgery.  She was wonderful.  Did the massage to drain the arm, then wrapped it for a few days I hated entirely.  It wasn't noticably smaller, so she offered to wrap it again.  Okay, but I'd like to wash my hair first.  She laughed.  Gave me a sleeve to wear until mine came in.  I wear my sleeve, each and every day, and have for about two and a half years.  I'll confess, I do not do drainage exercises except if my arm feels heavy.  Not but a few or several times a year.  But over time, the compression sleeve on the arm has done its magic.  That arm that was larger than my dominant arm is now smaller overall.  I was told at the outset that my LE was too far along to reverse, but my LE therapist said that if I would wear the sleeve when it didn't really matter, like as I go about my business and sit at my desk at work and do my chores at home, it will make a difference.  I take it off to go out or when I see people I don't want to see me like that.  In a few years, it's like it never even happened, but I know it did and will again if I get too lax.

What I always keep in mind is that my Dad had lymphedema in the worst way.  Something that never has to happen to anyone anymore.  He had a lesion under his arm that was removed but never healed.  His arm blew up like a balloon.  His wrist was larger than my thigh.  I thought the skin would split.  The pain was intolerable.  He could not use that arm, could not tolerate a sleeve or a sling.  He walked around with a pillow under that arm.  At one point a doc said he'd be better off if it was amputated, but Dad didn't want that.  Then Dad had an incident with law enforcement.  He was pulled over for not fastening his seat belt.  The officer reached in and clamped his seat belt in place and gave him a citation.  He got home and could not release the seat belt, so he sat in his driveway for hours waiting for help.  He missed the court date because he was in chemotherapy and spaced on it, and a warrant went out for his arrest.  He called and said he did not want to die a felon.  I wrote a letter to the judge explaining that he had not renewed his drivers license and would not be driving anymore.  He missed his court date because of his cancer treatment and he didn't even remember that was happening what with the more important things he had to do.  He can't reschedule right now because he can't get there by himself or be anywhere around people who might be sick.  Here is my check for the fine for his violation.  Here's a note from his doctor saying he isn't physically capable of using a seat belt, and hasn't been for several years.  I had to temper what I said because a copy was going to my Dad and he was a man with a great deal of pride and he wanted to live, though even he probably knew he wouldn't live for long.  I got a call from my Dad even before I got a copy myself.  Fine paid, CASE DISMISSED.  Good judge.

NO ONE needs to go through that.  I refuse to do so, and you all should as well.  

    

Binney4

Hugz, Yellowstone! Love it! Used to live in Jackson Hole. (Actually the tiny town of Kelly just north of there. Had to chase the moose out of the yard every day when it was time for our kids to come home for school, so they could get home safely.) I now live in a huge Valley, elevation changes in every direction. Day garments just don't get it for major elevation changes, so I either wrap or wear my Solaris. Once you're settled at a certain elevation for a few hours you can switch to day garments. But if you're riding a tram up the Tetons or hauling yourself out of the Grand Canyon you may need heavier-duty protection. Wrapping is much more comfortable if I'm going to be up and down all day, but my Solaris works great for getting up a mountain if I'm just planning to stay there awhile. Either way I do get a lot of stares, but they're mostly in awe and rush to open doors for me and such. (We have two service dogs in our family so if I'm wearing my quilted black Solaris garments some people assume I'm training attack dogs. Huh? Goofy Golden-doodle attack dogs?!!)

Musical, if you're small-boned or thin you're more likely to have issues with compression sensitivity. There's a physics law that covers why that is, but I sure don't pretend to understand it. If I lay out my supplies and keep my mind on it, wrapping only takes minutes. If I try to do it while keeping track of the kids or otherwise being distracted it can take half an hour and several re-rolls of the bandages--back to square one!

Day garments can help reduce minor flares, but they're not designed to reduce, only contain the swelling (and as Hugz suggests, under some circumstances they won't even do that.) Yellowdoglady's experience might reflect the fact that IF you contain the swelling long enough without a lot of flares, sometimes new lymph pathways can heal/develop and provide better drainage. Wrapping provides a different kind of compression that interacts more directly with the muscles to create a more efficient lymph pump. It's also adjustable each time you wrap, so reduction can be responded to and increased. It can also accomodate a badly swollen arm after an infection, say, and expedite the reduction of the new swelling. It's the gold standard of reduction and fibrosis management.

Night garments provide a dynamic kind of compression that's similar to wrapping but not as adjustable. They do, though, actively reduce swelling in most people. They can also work on fibrosis, which often further reduces the swelling by unblocking lymph flow.

EVERYONE with LE should know how to wrap. If we use it only infrequently we need to practice at least monthly in order to keep the skill--when you're flaring and need to wrap is not an ideal time to regain lost skills! It's an important tool to have in our LE toolbox, because it gives us ways to treat ourselves when professional help is not available, and provides much more flexibility and the courage to travel, try new activities, and tackle unexpected challenges.

Okay, stepping down off my soapbox! Everybody have a great Tuesday!
Binney

Anonymous

Moiralf, I feel like I'm hijacking your thread but then again that title "what else can I do" is a real good title

Yellow and Binney, great posts. Thankyou. When people post their experiences in my view it is a great resource to add to the pile. In some ways at least, theres no teacher like experience.

What a nightmare for your poor dad Yellow! Thats awful, and I'm sorry he had to go through that.... but great outcome!

Heres a little on my LE . Im fairly small boned but a bit overwieght. Not easy to lose on Arimidex but I'm trying.. LE was caught early, very soon after RT noticed aching and swelling. I haven't had cellulitis post LE Dx thank goodness, and will do everything I can to avoid it.  I do slip up on the very odd occasion like randomly seeing a weed and I pull it and dont put my gloves on grrrr. I put that down to the " I'll jist ....." syndrome. Naughty naughty I know. I make sure it's only little and not a real yanker LOL

- My LE has progressed slightly because I have a little pitting around the elbows which apparently puts you into the next stage. To be honest I cant remember what stage I am. HAd too many things on my plate to deal with this year and ya brain gets overloaded at times. So, we're not sure if this pitting is caused by another issue I have with retaining fluid or what. To my knowledge I've never had a flare, but from the get go, just a bit of "up and down" swelling and a few trouble spots because of garments digging in or not fitting properly. NOw and then theres a "strip" from my underarm to the elbow at the back of the arm which gives a burning pain, and sometimes it feels a little hard. I work on this area and it softens up.

- Theres a new kid on the block. Thanks to surgery, 9/10 I get a deep itchiness which is triggered when I or my hubby does the shoulder part of the MLD process. I have a fix that is pure bliss. I tell my hubby, "soft nails" and he's got it down to a fine art . If he tries to relieve it any other way, like using fingertips (at any pressure) it actually irritates it more.   I doan want heavy fingertips, I want sharp but soft nails, and he's got GREAT nails LOL

- I have never really been able to get my arm back to it's normal size once Dxd with LE. My LEist wrapped me ONCE at the beginning and it just about drove me nuts. Don't know whether it was just me or wrong bandaging or what, but I ripped em off, I just couldn't stand them any more because of the aching etc.

- I try and remember to do the 4 simple exercises twice a day but must admit I forget too many times. When I get aching it does seem to help.

- I almost always do MLD morning and night.

Binney...thankyou so much, and NO embarrasment needed thats for sure..  If I read of this aspect about the night compression, I was either too fagged to take it in or forgot or both. I'm going to mention your advice to my LEist and see what we come up with. It was Kira further up who said about day garments not actually reducing too, and I've already looked at her links and noted the brands. These night garments for me just might be doable.. For years I've had real sleeping issues (between 2 and 4 hours not uncommon)  and even at the best of times it can be difficult, but this in not always and I do have my reasonable periods. I sometimes have to have sleep aids and I don't like that. This was what put me off the wrapping.

I want to learn to measure my arms as another useful tool. It seems to me, using a tape measure could leave quite a margin of variation because of the width of it and being somewhat cumbersome etc. Is there a better/more accurate way. LOL with all the gadgets theyve got out these days, surely they could come up with something electronic to measure circumferences.

LOL Wednesday here Binney! so have a great one everybody, when it arrives at your place....

Moiralf

Hi everyone,

Musical I will be interested to see what your LEist ( I like that) thinks of night garments. When I mentioned them to my old therapist, she wrote them off and said they wouldn't go much good and here hideous expensive for no gain. 

Same with the wrapping down here in my new health board. I'm sure my old LEist would have persisted with wrapping for longer. Sigh, I have to work with the people I've got.

Compression sleeves have never seemed to really have any effect on me. I've never had flare ups,or great reductions. More a stable thing and then slow increase. Even flying with or without sleeve made no difference. In fact I flew from New Zealand to Europe, a flight of around 24 hours all up and wore sleeve on the flight over and glove too. Guess what, hand really swollen on arrival. Didn't wear sleeve for all internal flights, arm and hand fine. Put both back on for long haul home and half way ino flight ripped it off as so uncomfortable. No problem with swelling. See what I mean. It doesn't follow what is the normal pattern. Leaves me second guessing everything.

I am now into week 3 of aqua walking and arm waving in the water. Try to go everyday. People must wonder what I am doing flapping my arms around in the water for an hour but I think, cautiously, I am starting to see a slight reduction in the hand and maybe the arm. Do lots of moving arm through water and feel the ripples on my skin. Do node massage twice while doing it and make sure I wear my sleeve and glove to carry on any more drainage once I stop.

Got some good advice from nitros and what she suggested looks very similar to what I am doing in the water. I'm just do it faster. Ai Chi is so slow and I'm hyper so I can't go that slow for anything.  

Still paying attention to all the advice I get. 

Moira

Binney4

Moira, I hear you on not wanting to go slow with the water exercises, but as one therapist put it, our lymph systems are "slow and stupid." Since you're trying to stimulate lymph flow in response to the movement of the water, going much slower makes good sense (even if it's maddening!) Give it a try and see if slower movement helps.

Just a thought,
Binney

Anonymous

Hi Moira,  looks like I've got quite a few things to put to LEist so I'm going to have to get organized about it.  She's pretty well up with the play with what we can get here etc etc.I hope she's alright though as last time  I went she had a health issue that is extremely tiring for the 2nd time this year. I don't know what I'd do if she became unavailable. Have to always bear in mind, take the good you can get while you can and be grateful. You never know what tomorrow might bring.

Yes, at the end of the day we ARE all different for a zillion reasons and it's really hard to work with things that don't appear to be working for our particular situations which are the gold standard or proven to work. There's so many variables in this rotten game, and when anything happens that doesn't stack up and it should, we have to ask ourselves why? It is no wonder youre second guessing everything. As far as I'm concerned, the whole thing with the measuring of sleeves to get the right fit is fraught with problems. In that way, for some of us who aren't consistent it can be a logistical nightmare. Who can afford to pay for custom garments every time your flippin arm decides its going to do the its inconsistent thing. 

Im so pleased the water is working for you. That is great! I live rurally and it wouldn't be doable for me to pursue that avenue. Too bad what anyone thinks when youre doing your thing in the water. If anyone stares at you, you might ask them " Am I wearing something of yours?" LOL

Moiralf

That would be funny musical. I do actually go to the hydrotherapy pool at the hospital so people are less inclined to stare but it closes soon for maintenance and has no opening date. Another sigh; still never give up. Might try the public pool but it will be full of school kids on holiday. Sure they will love seeing a one breasted lady flapping around on the spot!

One thing I have done is instead of using my sleeve and glove I found one of my older sleeves that is actually too long for my arm but stretches to my knuckles so there is no break for the glove and end of sleeve. It seems to be less interfering to the flow.

Binny I did do that yesterday and it is doable. I actually have a fear of water and can't swim so am working slowly at gaining some confidence and yesterday actually put the floater belt on and "jogged" sort of. Very proud of myself and laughing at myself too. 

Moira

Anonymous

Ah yes I could imagine it would be far nicer doing this at hospital pool. Mmmm public..... well if youre an early riser Moira you never know, you might be able to beat the kids. LOL hopefully they will be all sleeping in. Failing that, it may be worth a try to play the cancer card and see if you can get a private time or something. It may be worth a try. FOr sure I wouldn't want kids gaping at me.... There are foobies you can get for swimming but I don't know anything about swimwear cuz I don't go swimming these days. Anyway good on you for taking the bull by the horns and feeling pleased with yourself when you have that fear of water.

Thats interesting about your old sleeves. My LEist told me to always keep them because if a new one gives you issues you can alternate them while breaking in the new one. Binney will probably frown at this, but we do have to make the best of what we've got and  prices in NZ can be beyond the joke compared to other places.  Im sure they think of a number and double it

I'm  hearing some ladies here get off the shelf ones and are OK with them and I ve been thinking of seeing what is available for some backups. Unfortunately my arms are quite large at the top compared to the wrist and hand and I need custom made ones....well at least I get custom made for the BC side, but I get the off the shelf Juzo for the other side which is NOT really ideal.

Momine

Musical, when I was in NY in the spring I went to a proper medical garment place that had a huge selection and some of those ladies who have been fitting people for 50 million years. I have long spider arms, but she found an off the shelf sleeve and glove that work for me. It was extremely helpful, because where I live, the selection is pathetic. Now I have brand and product numbers and can re-order as needed via the net.

purple32

they're not designed to reduce, only contain the swelling (and as Hugz suggests, under some circumstances they won't even do that.)

YIKES!
I didnt realize that, Binney .  Makes one wonder if it is really ' worth it '.  ( just meaning perhaps I should just wear a night garment instead )
Just spent all my INS $ ordering  sleeves and gloves ( WTH is my fitter btw?    grrrr!)

In any case, I will be seeing LEist <LOVE it!>  Kathy Fleming next week.  I surely will ask her opinion on my compression, my wrist, the wrapping etc ....  I do ' feel' compression sensitive. I cannot explain it well.  All I know is the darn Istotoners and Imakk OTC gloves  actually work for me right now . ( after many hrs if I wanted to I could actually put my ring on but why bother- by AM it would be digging in  )

  OTOH , the only RX gloves I have ever tried felt like a vice grip.  Fitter tried to convince me it was normal, but when I ripped it off and saw the deep, red cutting line in my thumb , common sense told me nada .

Binney4

Musical, I do keep all my old garments--they're very useful for messy jobs, for when my hands are going to get splashed or wet, and for those days when I'm just a bit more swollen than usual and need a more "relaxed" fit. Lots of uses for them. They aren't as effective at their job as new ones, but they don't just suddenly become useless either. The prices of these things really are spectacular--aaaaugh!
Binney

Anonymous

Awwww thanks Binney for chiming in on that. I know you've done many hard yards with this and I respect and value what you say! 

Thanks Momine for your input.

Purple...reckon Im experiencing that with my custom jobst glove. Its a very "robust" glove for my lil hand to cope with even though against those odds the dang thing seems to fit much better than what I've had. I get very little blueness on the odd occasion.

BTW, can someone put me straight please and tell me the difference between a glove and a gauntlet. Im referring to my latest apparatus which has individual fingers to the 1st knuckle as a glove. Is that correct?

Yesterday was the worse day I've had since dx with LE re aching and a sore spot on my outer edge wrist area. Don't know if it's LE driven or Arimidex. I've heard a number of times girls refer to a feeling of being "clamped" or in a "vice grip"....well both arms felt like this (in bicept area) with each subsequent change of old sleeve until I got to the 2nd to latest one which didn't give me any trouble for 2 or 3 hours. I tried all my garments on except the 1st Jobst which is about 1 step away from being rope !!!!!  Hard as. PASS The sore spot went away when I took sleeves off but annoyed me last night in bed. OK I thought I give up!!! grrrr.

Today I'm doing better. It's lunchtime and all I've had so far is a little tightness which is doable which is vastly different from clmping effect of yesterday. Ive decided I need to overhaul my whole LE management and need to look at what I'm actually doing more carefully (Gee thanks LE for taking up more of my time) I need more answers for my situation. For example:

I need to find out where Im at with my prophy side. There is gaping at the wrist and I'm in a bit of a catch 22 because I'm only deemed to have "suspected LE" on prophy side but have never actually had a conclusive dx. My  LEist did tell me what a dx involved but I cant remember what it was. I wonder if there is a world wide standard for dx. I have swelling and aching but it may be from a prior fluid retention issue and the general after fx from BP, blood draws , chemo etc. Consequently I was given a sleeve to "try" and I seem to get issued with one along with my other one.  I don't appear to have any swelling in my hand or wrist and dont wear a gauntlet/glove on that side. I was talking to my LEist last visit about this and she said one brand does have more options compared to Juzo which if I remember correctly said there was just 3 sizes.  I've been thinking about what Binneys been saying on this compression sensitivity issue. I'm really beginning to wonder if my Jobst is too harsh on me in this way.