VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

LindaLou53 · April 2010

LindaLou53 · April 2010

Hi Ladies,

I have been wanting to post a pictorial of visible signs of LE for some time now. I finally took some time yesterday to take comparison photos of my LE and NON-LE hand and arm. It was no easy task to position one arm while holding the camera with the other but I hope some of you will find these helpful.

Just a few comments up front to be clear. LE can be present long before there are any visible or measurable changes noted. Early stage 0 LE may appear only as a sense of heaviness or achyness in the limb without any visible signs of swelling. There are still tissue changes occuring in the interstitial spaces of the limb, however, that could be detected by specialized tools such as perometry or Bio Impedence units. This is why it is so important for women at risk for LE to be aware of these early warning signs and get evaluation as soon as possible by a certified LE therapist. Please do not wait for swelling to be visible before being evaluated if you are already having concerns with discomfort, a sense of heaviness, fullness or achyness.

Once we have visible signs of swelling it may be easier to convince the physicians and other medical professionals that we have LE but even then our unique symptoms may be attributed to other potential medical conditions. There is something in the medical field called "differential diagnosis" which just means they look at all the possible causes for your presenting symptoms and using the process of elimination try to narrow down the actual cause. That is why when presenting for the first time with swelling the doctor may want to rule out other causes of edema like infection, blood clots, vascular insufficiency, congestive heart failure, adverse response to medications etc. Getting the correct diagnosis is important so we should not just "assume" we have LE when presenting with symptoms of pain and swelling. Our ability to describe and point out the visual clues of our symptoms, however, will greatly help the physician in coming to the correct diagnosis.

One other point I want to stress is that everyone's LE is unique in its presentation. My LE will not be exactly like your LE. We may share many common aspects though, so I feel it can be helpful to show visual images of LE. I post these images purely for informational/educational reasons and just as an EXAMPLE of how LE may present. I wanted to emphasize the comparisons beween a LE and NON-LE limb to make you all aware of some of the more subtle changes you should keep an eye out for when trying to detect your own LE.

As a quick personal history note, I have had LE for 4 years in my left arm and hand with minimal truncal LE. My right arm is at risk for LE but has not yet shown visible signs. My LE is considered Stage 2 because it does not revert to normal with elevation or garments. I have never had large volume differences between my arms. I do have a fair amount of fibrosis and swelling primarily in my hand which results in diminshed strength, flexibility and fine motor skills of that hand.

MODERATOR NOTE: Hi, all! The photos that LindaLou originally and so graciously shared here are no longer available on the hosting site. Unfortunately, LindaLou has passed and these photos are no longer available. If someone would like to start a new thread that has a similar theme, it would be much apprecited.

revkat · April 2010

Thank you so much for posting these. My LE is fairly mild so I often can't see a difference (but can feel it) but when I posed like your pictures I noticed the swelling around my thumb that I hadn't before. So I can keep track of that as a "sign" of when things need to be taken care of. It's good to have pictures somewhere between normal and the "worst case" things the PT showed me (I think to scare me into being compliant with treatment. It worked.)

KS1 · April 2010

Thanks so much for posting these pictures. - KS1

Binney4 · April 2010

Wonderful, LindaLou. Thanks so much for doing these -- very helpful. Pictures of elbows would be great -- hope you can find an assistant to help with that.

Hugs,
Binney

Emme · April 2010

Hi. I had a bilateral mastectomy on March 31st, with 3 nodes removed. Sunday my arm started to ache and I had very limited amount of swelling on the inside of the elbow joint. Monday I had an appointment with my oncologist and he ordered an ultrasound to rule out a blood clot. The arm is clear, no clots.....any suggestions?

Emme

CherylG711 · April 2010

Wonderful information!!!!

lisa-e · April 2010

Emme, you should get a referral to a le therapist.

LindaLou, the pictures are very informative. Thank you so much for posting them!

lionessdoe · April 2010

Linda Lou,

This is so very helpful. You've done a world of good for a lot of people today! Thank you so much for taking the time and for all the effort! These images will stay with me!

Member_of_the_Club · April 2010

This is great. I am one with hand and finger LE and I think it is surprisingly difficult to recognize.

jancie · April 2010

I can't thank you enough for posting those pictures. I found myself bending my thumbs towards my pinky fingers - looking at the back of my hands, etc. WOW....I don't know what else to say other than you in this one thread have helped so many people understand some signs to look for. This thread needs to get bumped to the top for awhile so that everyone will look at it!

Binney4 · April 2010

Emme, here's information about finding a well-trained lymphedema therapist near you. (The "Therapist Locator" link on that page is especially helpful!)

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Keep us posted!

Gentle hugs,
Binney

ruthbru · April 2010

Very good information; a picture is worth a thousand words, thanks!

Lilah · April 2010

Wow that is SO helpful! I've been obsessing lately and I have to say your pictures helped me to realize that I am fine (and just obsessing

Thank you!

Neece · April 2010

thanks Lindalou! My hand and arm look almost EXACTLY like your photos. this will be very useful for women to help identify if the have LE. For a while I just wasn't sure because mine came on very soon after surgery so I thought it may have been post surgical swelling. Also encouraged to see oyur improvements on the 'before' and 'after' pics.

Can these photos be 'stuck' to the top of the list of topics under Lymphedema so it can be easily located to new visitors?

erinkoepp · April 2010

Wow! Those could be my hands. I've been having the lymphadema thing going on for about six weeks (or so I thought, I do have pitting edema in my hand, it all started after a cellulitis on my affected arm) I am supposed to wear both the sleeve and glove, but when I do my hand seems to be ALOT worse, you can see indentations on my wrist from where my sleeve ends and my hand is very puffy. Consequently I haven't been wearing my sleeve much at all. I noticed in the pictures that there didn't seem to be any indentations on your wrist area. Do you wear a sleeve all the time? How often do you do the massage? Do you have any good techniques to recommend? I have watched a video from the Northwest Lymphedema institute and I try to do it like they do. Didn't like the way my LEspecialist showed me. Thanks so much for posting the photos and any response you can give me.

LindaLou53 · April 2010

Hi Erin,

I do wear a sleeve and full fingered glove all the time during the day and then wear a full fingered JoviPak night time sleeve at night. If you are seeing indentations at the end of your sleeve it may be time for a refitting and also to check the gradient pressure in your glove compared to your sleeve. The pressure should be the highest in the glove and gradually decrease in the sleeve up to your shoulder so that the fluid is properly moved upward. If your sleeve is too tight at the wrist it is probably creating a bottleneck where the fluid in your hand becomes trapped.

One trick I use to eliminate too much pressure at the wrist is I have all my gloves made extra long extending midway up my forearm. I put my glove on first, then my sleeve on over top so that the wrist end of the sleeve is not directly on my skin but is buffered somewhat by the glove underneath. It is very important when getting fitted for garments to keep the ends of the garments at the shoulder, wrist and finger tips slightly loose to avoid too much constriction.

I do self MLD at home and spend quite a bit of time working on my hand since that is my most problematic area. I get professional MLD twice a month. Your best bet is to find a certified LE therapist who has had at least 135 hours of specialized training. You need a therapist who will take the time to educate and show you the process of self MLD and who will address any questions you may have.

Wearing an improperly fitting sleeve or glove is not a good thing, but not wearing any garments at all is also to be avoided. I would check around for a new therapist and make sure your garments help make your LE better not worse. Check out this link for info on finding a qualified therapist:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Melinda41 · April 2010

Great pics, very informative, Thanks!!!

3jaysmom · April 2010

thanx lindalou; i have a small caseb to quote of le on cancerpos. armpit and hand.went 2 therapist again this week.the tips of my fingers r killing me.they told me neuropathy and le aggravating each other.fun,isnt it? will hopefully getting a full glove soon. can't sleep from the pain at nite.swelling is minimal,but i'm being real careful.nice 2 know there r others like me out there. 3jaysmom

annadou · April 2010

Lindalou

Great tutorial.

Anyone got any ideas about getting rid of the palmer swelling?

Great day to all

Anna

otter · April 2010

Oh, my goodness! Those pics do more than anything I've seen or been shown. My LE therapist pointed out a few of the distinguishing features you've noted, like the visibility of the veins in my forearm, prominence of knuckles and metacarpals in the back of the hand, and (try this at home) the separation of the muscles from the bone in the forearm if you put your arms in front of you and bend them at the elbows, bringing your fists up to your shoulders. (Look in a mirror. It works).

Yes, we need to get this thread "stuck" to the top of this forum. Some of the changes of LE, especially in hands and wrists, are so subtle as to be unmeasurable. But they can be seen by someone who is familiar with her body.

Thank you so much for taking the time and care to do this!

otter

BoobsinaBox · April 2010

Lindalou,

Thank you so very much for posting these pictures and your explanations. I do not have LE that I know of, and these photos are very helpful for me to understand exactly what to look for. I read this board regularly to stay informed. This is extremely helpful!

Dawn

kira66715 · April 2010

How do we pin this amazing resource to the top of the thread?? Thank you Linda!

Kira

3monstmama · April 2010

Thank you for posting this. It is so helpful especially for those who need to know what to look for.

best wishes!

Binney4 · April 2010

Kira, the way to get it pinned to the top is for several of us to go ask the Moderator (Melissa) to pin it permanently to the top of the forum.

Click on "member list" (top right-hand corner of this page.)

Then, in the "search" box, enter the word moderators (be sure to put the s on the end). You should then see the bc.org twisted wreath logo. That's the one you want.

Click on "Moderators" and then on "send a private message." Then just ask if she will please pin LindaLou's thread called "VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL" to the top of the forum. Click to submit your message, and voila!

Please take a minute, all of you, to let the mods know we'd like to see this done.

Thanks, all!
Binney

Binney4 · April 2010

Just want to re-post LindaLou's statement above for those of you with no visible signs of lymphedema, because IT'S IMPORTANT to know that LYMPHEDEMA CAN BE PRESENT BEFORE ANY OF THESE SIGNS APPEAR (emphasis mine Wink ). Here's what LindaLou said:

Just a few comments up front to be clear. LE can be present long before there are any visible or measurable changes noted. Early stage 0 LE may appear only as a sense of heaviness or achyness in the limb without any visible signs of swelling. There are still tissue changes occuring in the interstitial spaces of the limb, however...

Treating lymphedema at the earliest stage (even before any of these indications can be seen) greatly improves the outcome and future management. Do request a referral for evaluation by a well-qualified lymphedema therapist at the earliest indication of heaviness, fullness, aching, or just plain feeling "funny."

Be well!
Binney

AnnaM · April 2010

LindaLou, this is one of the most informative and helpful posts I have seen. Thank you very very much!

OneBadBoob · April 2010

Thank you LindaLou!!

These pictures are so, so informative--like they say, a picture is worth a thouand words!

Again Linda, thank for all you do to help us "swell girls."

Edited to say thank you for also mentioning that one can have LE without any visible signs of swelling--

I have my arms down, the measurements are normal, yet I am participating in a study on LE at NYU and both the perometer and the bio-impedimence testing showed LE in both arms, even though the tape measures show no swelling.

So, be aware of any changes in feelings of heaviness or other unusual sensations and seek help immediately from a qualified LE therapist.

Jane - Dance as if no one is watching!!
Diagnosis: 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-

LindaLou53 · April 2010

Hi Annadou,

I have found the most effective treatment of hand swelling to be inserting pads either inside or on top of your garments whenever you can. I wear a JoviPak nighttime garment that has dorsum and palmar pads built into it and this helps to reduce my hand swelling alot overnight.

The hand is very difficult to treat because of its shape. With a standard compression glove it is almost impossible to get adequate compression over the dorsum and palmar areas because of the concave shape of the palm. If you try wrapping bandages more tightly over the hand without using pads you will cause too much compression on the sides of your hands and still not have adequate compression on the palm. If you are wrapping with short stretch bandages, the goal is trying to create an oval shape by building up the center of the hand so that it is about as wide as the width of your hand.

Here is a picture of my hand being wrapped by Steve Norton at one of his Norton School LE certification training courses in 2006. We used a palmar Swell Spot for my palm and a dorsum Swell Spot for the back of my hand.

We then applied custom cut sections of yellow foam to continue to build up the center of the hand before finally wrapping with short stretch bandages. The final result looking at a cross section is more of an oval shape so that compression can be applied evenly around the hand including the palm.

This works great at night or if you can stay home and not have to be very physically active. But obviously the function of your wrapped hand is very limited with this type of bandaging. For daytime purposes when I still need use of my hand I will sometimes just stick a dorsum pad inside my glove or wrap a dorsum pad outside my glove using short stretch bandaging to hold it in place. As long as my palm is not heavily padded I have full use of my hand for gripping things like the steering wheel, door knobs etc.

Another option is to have your compression glove custom made with both dorsum and palmar insertable pads that slip into pockets in the glove. These pads are much thinner to wear for daytime use and yet provide more compression than the the glove fabric alone.

sisterinspirit · April 2010

Linda Lou,

Thank you so much for posting the pictures. Very helpful indeed! I especially like the one showing the improvement from 2006 to 2010. Wow! I'll keep that picture in my mind when I get discouraged. Thanks a bunch!

Gentle hugs,

o2bhealthy · April 2010

Lindalou - Thank you so much for posting this information, I am difinately going to send a note to the moderators to pin this thread at the top of the LE thread

VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

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