Solaris Tribute in the freezer?

Binney,  Thank you for the information on overwraps.  What is a flare? 

Sher, thank you for the advice on the color change and it being softer.  If when all is said and done and it would need it to be remade, I might go for the teal.  Thank you!!!  Thank you for the pictures.  They were very, very helpful.  Quite a garment you have there.

Kira, thank you for the flight tips too.  I am unfamiliar with the jovipak and will have to do a little research on that.  Back to the Solaris:    Yes, it would be superb if they would see me personally.  I am not quite sure what to do.  I see my therapist on Wednesday and will ask her advice on how to handle this.  The other thing you mentioned is about the swelling above the elbow.  I just developed that too.  How do you get that to settle down?  I was hoping the tribute might help, but no luck.  Any advice.

KS1- this new tribute of mine seems full enough and defintely leaves indentions in my arm, so much that I am wondering if the thing isn't too tight.

All Ladies:  Thank you for this wealth of information!!!  I am so grateful to all of you.  This lymphedema situation can really be aggrivating.  You all seem to handle it so very well.  Honestly, I just wonder if I am not being a bit of a baby about this.  I wore my Tribute garment last night and did not make it but 4 hours.  It felt like sandpaper  on my skin and tight so much that sleeping wasn't even an option.   I am determined to make it work though because I am thinking I would prefer this over wrapping.  And all of you that wrap at night, how do you stand the feel of the wraps?  I can hardly take them for 3-4 hours even during the day.  In my defense, I do think maybe my skin might be pretty sensitive as I am allergic to tapes and salves and end up with rashes even after wearing some bandages.  But still...all of these garments just seem so very uncomfortable on and many times intolerable.  How do you all do it, day after day?   Oh and one more question:  What detergent are you using to wash your Tribute in?  The same fitter that didn't know what the overjacket was for told me to wash only  in All Free and Clear.  Solaris, said wash it in whatever I do my normal wash in. 

Thank you everyone   Let's all sleep well snuggled up in our Tributes or Jovipaks

Suzy, I got lost somewhere. If you can't dry your Solaris in your dryer because it's too hot, you can't dry a JoviPak in it either, and they both are equally difficult to dry. So don't switch just because of dryer temps. But then, like I say, I'm not sure I'm following all this too well. LE-brain!

Anna, by all means ask your therapist before going directly to Solaris. I've had some cautionary experiences dealing directly with garment makers (as have other women here) and now won't deal with any of them at all except through my fitter. I appreciate the buffer, because you can't tell at what point the communication might break down and leave you in a bad place. Even with Solaris. All of them are businesses, even the nice ones, and businesses have a different bottom line than we do.

A flare means those times when the LE gets out of control. For me that usually has to do with the barometric pressure or with over-doing it at some activity I should have stopped earlier (and usually know it, too, but sometimes you just want to finish a job you started, y'know?!) To get on top of it usually means I have to either wrap (if it's my arms) or wear my night vest instead of a cami (if it's my chest and back). And get back to my Lebed exercises. And elevate my arm. And remind myself to drink enough water. And add a Swell-spot here or there. And...grrrrrrrrrrrrr!

Solaris and Jovi both suggest an extra rinse cycle for their garments -- they claim it extends the life of the garment, but it might also help remove irritants for you, Anna. That said, Jovi does have an extra-soft, silky fabric as an option. I have it, and it feels really nice, but it tends to run so I wouldn't order it again. But even their regular fabric is softer than the Solaris fabric. If your fitter (or therapist) doesn't have fabric samples from Solaris and Jovi, ask her to request them so you can see what you're getting.

Becky, in answer to your question, I have both Jovi and Solaris, and my next set will be Solaris. They're effective, they wear very well, the remake-for-free can't be beat, and frankly they always fit a lot better. But I have both arms and a vest, and the fitting problem has to do with the way the sleeves and vest meet. The Solaris design just does a better job of covering the back and sides and meeting the sleeve to the vest without everything scrunching up when I lie down.

On that note, let me add that I recently started lying down at the fitter when I'm trying on new night garments so we can get a real idea of the fit, because the standing-up fit is completely beside the point. But maybe that's just me! (My fitter is awesome!)

Hugs all around,
Binney

I use something called Charlie's Soap that I buy over the internet.  I first found it when I was desperately trying to find something I could wash my daughter's cloth diapers in.  She wasn't a kid with a lot of allergies, buts she reacted to a lot things we put on her butt!  That made me read some about detergents, and I realized I didn't want brighteners, softeners and fragrances on my clothes either.  Then 16 month later along came my son, who had very, very sensitive skin but also did OK with the Charlie's Soap.  It is a vegetable based powder.  It works fine as far as I can tell to clean things.  Maybe not as sparkly-bright as something from the grocery store aisle, but read how those sparkles get there!  FYI, I have no connection to this company other than buying from them.

Insurance payed for 80% of my Tribute.  My insurance has been great, but really I think it's been my fitter who's been great, finding ways to talk them into things. 

Becky, there could be something in what you say. I'm also someone who always liked being wrapped in blankets etc. and don't find the garments or wrapping onerous.  I thought that since my LE is fairly mild and only in my upper arm that I didn't mind it as much as it does others but it just might be a temperament thing.

For me it's mostly knowing that I need it that bothers me. I can't get away from BC/LE.

Leah

Hi all

Thank you for the tips on detergents.  I was very curious as my first wash with the Tribute was with Dreft too.  I just wasn't sure if that was a good choice or not, but like I said Solaris said wash it in anything as long as you don't add bleach or softener, which I did not. 

Binney, I am totally with you. I have always hated the feel of tight clothing.   It is not so much the fact of my arm being enclosed but more that I find the wraps to get itchy as the day progresses.  I put on a light sleeve, like what goes under a cast ( the best way I can describe it), and then sometimes a cotton gauze type wrap and then the lymphedema wraps that look like ace bandages.  My arm gets hot in the crook of the elbow and the tightness and itching just gets unbearable.  Now when I have the compression sleeve on, yeah that ends up being an aggrivation too, but I can tolerate it much longer than the wraps.

But just maybe my arm has a bit of claustrophobia.    The thing is that I have absolutely no problem in the MRI machine or elevators for that matter, so thinking maybe that isn't it.

Outfield, thanks for the comment on the insurance. I sure am hoping this won't be a battle to have them pay for the Tribute. They bucked my compression sleeves until I pulled out the "Women's Cancer Right Act of 1998" card, then they reprocessed and paid it in full( I have already met my $8000 out of pocket for the year)(Yes, I said $8,000!!!  That too, another story for another time.

On another note, I saw my therapist this morning and she agrees that firstly the material is a little rough, but suggested I should wear it inside out as the filling, padding and stitching are on the outer side of the garment and on the inside of the garment.  She felt, in terms of effectiveness, that would work just as well.  Any thoughts on this?  Now about the tightness in the hand that she felt was incorrect.  My pinky shouldn't have to rest on top or under my other fingers.  The Tribute is pulling the pinky over.  So I have an appointment tomorrow to see the fitter.  She also thought they could just tighten up the portion just past the crook of the elbow as that is where I have a lot of pooling.  So that is the easy part, getting her suggestions, the hard part will be to hope that Solaris can get it right.

Thanks for all the info everyone!!

Anna4969 - When I first got my Tribute, I really didn't like it and had difficulty sleeping wearing it. But, now 1.5  years later, I sleep better with it than without it.  I still find daytime compression garments unpleasant -- at best they feel like really constricting pantyhose.  Most days, after 7 or 8 hours, I just can't stand them and rip the them off. and put my Tribute on for an hour or two. 

I spoke to Emily @ Solaris today about fit & fill issues with my new Tribute.  She was fantastic - I really don't think I have ever dealt with a company that is as good about customer service as Solaris.   Kudos to them.  KS1 

Hi Anna4969,  I just got my second Tribute.  Solaris says to replace Tributes after a year because the foam breaks down.  My old one still seemed ok at 16 months, but it never did that good a job on my hand, and my LE therapist felt that she could work with Solaris to get a garment that did a better job.  (My original tribute was fit by a fitter, not a therapist.)  This will be the second alteration on my new Tribute, and Solaris is being sweet as pie about it. I should send them brownies ... KS1

KS1, thank you for explaining.  I guess then it might not be too much for me to expect Solaris to do a couple of changes.  At $800, I would think that would be a fair request.

Binney, Thank you so very much for that explanation.  I did know the vessels are delicate but didn't think that delicate.

On another note, has anybody looked into lymph node transfer surgery or lymphatic bypass surgery?  I have been participaing in a clinical trial at MD Anderson and my next trip is in November and along with that trip, I made an appointment with a surgeon who does the lymphatic bypass surgery here in the United States.  It is just a consultation and so I am not quite sure about what it really is or such and most importantly, the success rate.  Anybody know anything about lymph surgeries and their success?

Sher, I'd say that might explain the morning imprint puzzle. That's pretty interesting! I've asked a lot of LE professional people if, for instance, their own arm circumference would be reduced by MLD if they didn't have LE. They always say the same thing: "Gee! I don't know. I never thought about it." This is the same sort of question: does a directonal-flow garment move fluid if there's no swelling from stagnant fluid? Guess not!

When you get a chance, do ask your therapist what she thinks.
Binney

Kira, I've asked a couple of Vodder folks, who attend their every-two-years skill update workshops where they spend time working on each other, and they tell me they've never measured each other before-and-after to find out. (They do mention that they have to pee a whole lot, so I assume they're moving fluid.) But what actually happens to "loose" fluid in their tissues is something they've never tried to measure. It just seems to me that in a business that's trying to establish objective validity for their methods, somebody would have looked at a comparison between MLD on "normal" and LE people.

I need a hobby...
Binney

Sher--I don't know if the Tribute is anything like the Jovipak.  I was getting lines all the way up to the top of my Jovipak until I lost 20 lbs and the lines above the elbow quit appearing.  I could tell it was looser at the top.  My therapist told me to start bandaging over the Jovipak from just below the elbow up with just one  short stretch bandage--still keeping the compression less than the forearm.  I started doing that and now the lines are appearing again.  Becky

Kira, I think it's probably just luck!  But just maybe it's that the hand design is different from the one you have.  Have you ever tried a Caresia glove?  I had that first and loved the fit and the way it worked even without adding bandages on top.  So when Solaris did the remake of my Tribute, my therapist stressed that the hand and fingers should be made as much like the Caresia glove as possible. There are places in the hand part that seem to have either too much or too little filling, but it seems to work well regardless.

I wish I could remember if I had lines on my upper arm when in therapy and wrapped 24/7, but just can't seem to picture it in my mind. This might be a good idea for anyone starting into therapy...........take pictures so you have them to compare with later.

Becky, good suggestion to bandage from the bottom side of elbow up!  If that works, I may look into trying an oversleeve.

Sher, I have seen the Caresia glove and always wondered why the full arm Tribute didn't incorporate the nice hand stiching and anatomical thumb. If I get another one, I'll work with them more carefully.

Ironically, I do have a two piece set from them: made without therapist or fitter input--when I was trying to do it all myself at the beginning, and the top is a glove, which they remade and the bottom is an arm piece, and the glove is gorgeous, but just never worked for me, and convinced me to use a fitter in the tuture. And sure enough, using the fitter, the first one came back all wrong. Second one is better.

I do think they should take the technology they already have and use it for the hands in the one piece, as opposed to the finger spacers and weird thumb, and the fact that they tend to either make it too short or too long.

Well, our feedback helps.

Kira