Will I ever see my knuckles again?

Diane, I definitely understand your frustration. Hand LE is one of the most difficult sites to treat. Once tissue changes including fibrosis develop, it is rare to have the hand return to a completely normal appearance, but things can definitely improve.  I have had long standing hand LE with fibrosis for over 6 years and it is much better now than it was 6 years ago.  I am currently at a plateau where things are not getting worse but not much better either.  There are a variety of treatment modalities I have used, all of which may have a positive influence on keeping swelling at a minimum and helping to break up fibrotic tissue.  I will try to list the actions/modalities I have used that I feel were helpful.

• If you find that your current compression glove / sleeve combo causes increased constriction at the wrist area or is not effectively keeping your finger swelling down, it is time to be re-fitted and make sure the proper compression gradient is being delivered by your garments. 

I used to use custom Jobst Elvarex sleeves and gloves, but found that the fingers of the gloves did not maintain adequate compression.  After a few weeks of wearing and washing, the fingers would stretch out causing swelling at the base of my fingers.  Because the glove itself was providing higher compression than the fingers, lymph fluid would pool at my knuckles causing tissue irritation and early fibrotic development right across the metacarpals, which then impacted my finger mobility and ability to grip and make a fist.  Ultimately, I switched to Mediven Custom 550 sleeves and gloves.  The Medi gloves have done a great job of keeping my fingers compressed, plus I added custom dorsum and palmar pad pockets in which I use yellow foam inserts.  I still have to be careful that both the wrist area of my glove and the wrist end of my compression sleeve are slightly looser and not applying a "constriction effect"  at my wrist.

• If you have a properly fitting daytime glove / sleeve, make sure you are not losing ground with your nighttime wrap/garment. 

I wrapped with short stretch bandages and heavy padding to my hand at night for quite some time before going to a nighttime garment. When wrapping a hand, it is important to apply added compression without causing undue pressure and irritation on the bony sides of your hands.  This is the Law of Laplace in which you attempt to build up padding into a circular shape around the hand so that the compression is evenly distributed.  Here is a picture of my hand wrapped by Steve Norton which illustrates that Law.  I would wear wrapping like this at night, because it pretty much makes my hand non-functional for daytime use, but it was effective at applying much needed compression to my hand.

 

After my hand improved and I graduated to wearing a nighttime garment, I had a custom Jovi Pak with built-in dorsum and palmar pads that did a good job for overnight compression.

•  Try other modalities like Kinesio Taping the hand.  When applied properly, and worn underneath the compression glove, KT can work in tandem with your muscle movement and create a mini MLD effect throughout the day while wearing it.

In addition to the added compression, I also found that Kinesio Taping (KT) my fingers and hand, both dorsum and palmar surfaces helped to pull fluid out of those areas. If you have never used KT before have a professional show you how to apply it and always do a test area first to make sure you do not have allergies or sensitivities to the tape. Also make sure you are using Kinesio GOLD with the wavy adhesive pattern.  This is the only version of KT that is suitable for LE.

• In spite of ongoing debate and lack of large clinical trial data, there is clinical and anecdotal reports that some patients do benefit from the use of Low Level Laser Therapy (LLLT) when used in conjunction with traditional CDT.  http://www.ncbi.nlm.nih.gov/pubmed/20445997

I have found the use of LLLT to be helpful in reducing the degree of fibrotic tissue in my hand and forearm.  LLLT should not be used as a primary LE treatment. It is not a substitute for CDT and it cannot prevent the re-development of fibrosis if proper garments and CDT are not maintained, however, I have found it to be an effective adjuvant modality. 

• In the presence of persistent and resistant hand LE involving fibrosis, extra time spent on special hand massage techniques by a qualified LE therapist may be helpful.

It has been my personal experience that spending extra time for hand massage during a standard MLD session and utilizing massage techniques not typically intended for LE may be helpful.  I have found the use of "skin rolling" in which the skin is gently lifted and rolled from distal to proximal to be effective in helping break up scar tissue and improve mobility of the skin surface.  I achieved my greatest improvement in forearm fibrosis when using this massage technique in conjunction with the LLLT.  Skin rolling can be done on the hand but is difficult on the palmar surface. It is possible on the dorsum if the skin can be gently lifted. When done properly by a LE trained therapist it is not painful and does not create inflammation. 

Diane, I hope this information will be helpful.  Kira is right that we just have to stick with it.  What works for me may not work for you, but we just have to keep trying to make progress anyway we can.  If it helps, here is a progress pic of my LE hand in 2006 and again in 2010.  I don't expect my hand to ever be "normal" again, but I can attest to the fact that it CAN get better!

Dear DianeKS - My heart goes out to you.  After having had pretty stable LE for 2+ years, I experienced a very bad stubborn hand flare that began in January of this year.  

Even after 2 months of 24/7 wrapping & consistent MLD, there was very little improvement.  Around month 3 of round-the-clock wrapping, I started to see noticeable reduction (could begin to see knuckles and make a fist), but my hand would swell back up within minutes of removing bandages (even when doing MLD).  My LE therapist ordered me custom Jobst class 2 gloves.  The cut of the first one (elvarex seamless) didn't work well with my hand and the second (elvarex classic fabric) made my hand turn bright red and swell when I took it off.  Back they went, and I continued wrapping round-the-clock.  My therapist then fitted me for a Juzo silver expert.  Because of various snafus, almost 2 months passed from when the measurements were taken and when my therapist could check the fit.  

During that 2 months, my hand and arm had reduced enough that they didn't fit!  Much to juzo's credit, they remade the garments.  All in all, I ended up wrapping 24/7 for 8 months.  I have slowly made the transition back to day garments.  My hand swells with the day garments, but not so much that it doesn't reduce with overnight wrapping.  

Has your therapist had you wrap?  Do you have a lot of fibrosis?  Keeping my hand compressed at all time (even while doing MLD) was really was key for me.  My therapist also took fairly aggressive steps to break down fibrotic tissue in the wrist and fingers (laser treatments, lots of hard textured foam pieces under the wraps). Good luck! KS1

KS1 wrote:

LindaLou, From your pictures, it looks like the fingers of your Jovipak are individually sewn.  Am I correct?  In terms of your hand, how effective is it compared to wrapping?  Have you ever had a Solaris Tribute?  If so, how does it compare? 

LoveToCook wrote:

I have the same thoughts/questions about Linda Lou's night garment vs. using the tribute and wrapping my hand with gauze.

KS1 and LoveToCook, I got my first Solaris Tribute a year ago this month.  After more than 4 years with 3 different JoviPaks I was not unhappy with my JoviPak at all, but after reading so many positive reviews about the Tribute I decided to try something "new".  For me it was a mistake.  The Tribute is very comfortable, more lightweight and flexible than the JoviPak but it provides much less compression in general and is much less effective on my hand. When my Tribute was first ordered, my fitter requested both Dorsum and Palmar pads be incorporated into the hand portion.  When my new Tribute arrived, it came with 2 small separate pads in plastic bags, nothing was built into the actual Tribute. I asked a Solaris rep how I was supposed to put the pads in place on my hands and then be able to pull on a full finger tip to shoulder garment?? 

One week after receiving the Tribute a Solaris rep offered to take the garment back and have extra foam put into the channels of the hand area because "constructing pads inside the garment" would void the warranty. (??)  They put more foam into the channels of the dorsum area, but as we all know, lymph fluid gravitates to the area of least resistance, which in this case is the seams between the channels. The compression level provided by the extra foam in the channels was still not enough and without a full dorsum and palmar pad keeping the hand uniformly compressed, the lymph fluid built up all along the seam lines on my hand.  As a result, I ended up applying dorsum and palmar Swell Spots to the outside of my Tribute and wrapped them on using short stretch bandages all the way up my arm. So basically, I was using my Tribute the same as a Caresia bandage liner and wrapping every night on top of my Tribute.

My fitter was really unhappy with that situation and contacted Solaris again.  They offered to attempt building pads into the hand for me, so my garment was shipped back again.  During the several weeks waiting for my revised Tribute, I went back to short stretch bandaging with pads at night, or wearing my old JoviPak which really was not a proper fit anymore. I had lost significant weight 2 years ago, so I was also applying short stretch bandaging to the old JoviPak. I did realize, however, just how much more effective the JoviPak hand portion was compared to the Tribute.

The JoviPak does have individually sewn fingers which applies much better finger compression than the simple fabric dividers in the Tribute finger area.  The built-in pads in the JoviPak provide a uniform compression across the dorsum and palm areas which means there are no areas of only a seam between my skin and the outside surface of the garment.  On the Tribute hand portion, I can press the seam area along my index finger and thumb and feel my unpadded hand directly below.  This area develops fluid build-up unless I add a swell spot on the outside of the Tribute and short stretch wrap it.

So when I got my Tribute back, they had opened the seam at the wrist area and sewed dorsum and palmar pockets into which they had inserted foam stuffed pads.  The wrist area was left open with a fabric flap and velcro on one side so I could pull the area shut.  The theory was that the pads might shift out of place and need adjustment, or I might want to launder the pads separately from the Tribute, so they thought easy access to the pad area would be desirable. The Solaris designer truly was working hard to make my garment more effective for my hand requirements and I do appreciate the effort that was put into it.  I have no complaints about the Solaris customer service at all, but I just don't feel they have much experience related to specific hand compression issues.

The pad pockets were made too small and do not provide adquate coverage to the dorsum or palmar areas.  As a result I have fluid build-up in the non-padded seam areas over the hand.  The opening at the wrist, while making it easier to donn the Tribute, was really not necessary in my thinking and it is now an area of decreased compression and fluid build-up. If permanent pads such as in the JoviPak were used, instead of removable pads in pockets, shifting or laundering would not be a concern. SO...while I know that Solaris is a good company and the majority of their clients are perfectly happy with their products I have found the Tribute not to be as effective in treating my LE hand needs as the JoviPak has been.  Both my LE therapists and myself have seen a reversal in the improvements of my hand this past year as we have tried to adjust to the lack of adequate nighttime compression.  I am very anxious to get fitted this month for a new JoviPak which will hopefully help get me back on track.

Here are photos of my Tribute after the final customization with opened wrist area flap/velcro and inserted pad pockets:

Hope this helps.

EDITED 11/17/12:  Adding a photo of my wrist area with the increased swelling due to the flap created by Solaris when they added dorsum and palmar pads to my Tribute.  I'm sure the Tribute works well for many, but it was not a good choice for me.  Happily I will be ordering my new JoviPak on Monday now that enough time has passed my insurance will allow another night garment! 

Linda

LindaLo & Kira, I have had a similar experience to you WRT Solaris's hand.  The folks at Solaris are terrific, but so far, I haven't gotten them to make a hand that works for me.  My first garment from them worked pretty well, but my LE was milder then and critically my hand wasn't as affected.

My second Tribute, they remade twice.  I felt guilty so guilty that I said attempt #3 was fine.  Big mistake:  when I showed it to my therapist when my bad hand flare started (3 months after I got it), she pointed out that there wasn't much stuffing in the hand, and that some of the fingers weren't long enough and there was little functional compression at the fingers.  Who knows, maybe that is why I flared.

Literally yesterday, I got approval for a new night garment.  I had read on this board and from my therapist that Jovipak isn't very good about alterations, and so I went with Solaris again.  I asked them NOT put the finger spacers (means I can wrap my finger and simply slip in dorsal and palmar pads from the top) and  to  overstuff the garment.  I am going to call Solaris first thing on Monday to make sure they REALLY overstuff the garment.

Having read your post LindaLou, I am regretting my decision not to give Jovipak a try.  LindaLou, how hard it is to get the Jovipak on vs. your Tribute? I have brachial plexus neuropathy in my LE arm, and limited dexterity in my non LE hand, so even on the days I don't have a gauze fail, it takes me 30+ minutes to wrap my fingers and get the Tribute on.

Anyone know how much someone paying out of pocket would be charged for a custom Jovipak with individually sewn fingers?  I use 3 rolls of gauze every night with the Tribute, so the cost adds up.... KS1

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