Sunday, October 30, 2005

Georgia Lymphedema Education and Awareness Day

We had our 8th annual State of Georgia Lymphedema Education and Awareness Day on Saturday, October 29th. It was truely an incredible program...I wish you all could have been there (maybe next year).

Our guest speaker was Dr. Kathleen Francis from New Jersey.

One of the nation's top lymphedema experts, she is also Director, Lymphedema Physician Services, P.C.
Clinical Director, Lymphedema Treatment Center at St Barnabas in Livingston, NJ.
Assistant Professor and NJ Medical School in Newark.

I must say stuffed shirt here...she was down to earth, had a great sense of humor and was really neat to be around.

The morning session was in Lymphedema Genetics and Research.

Perhaps, the most exciting news in research is that the lymphatic system is finally being recognized as the important body system it is and plays and important role in cancer, immunity and inflammatory disorders.

As such, through the NIH - which is the major funding body for research in the US, there is going to be a dramatic increase in funding available as researchers seek to understand its pivital role in these conditions.

Much of this is coming about as a result of the tireless effort of Wendy Chaite and the Lymphatic Research Foundation. This is way I'm always sharing about the LRF and urge everyone to support the foundation and its efforts.

Some of the cutting edge areas of research include:

1. Tissue engineering to construct functional lymphatic tissue

2. Genetic therapy through gene transfer

3. Use of VEGF-C exogenously (having been derived from outside the body and inject in - much like a medicine)

4. Increased understand of the actual physiology of the lymphatics.Other areas include research into lymphatic involvment in inflammation and the study of adipogenesis which the the formation of tissue containing fat.

From everything I have read, I have long been convinced that either a solid treatment is on the horizon and/or a cure will be discovered. It was encouraging to me to hear Dr. Francis say the same thing.

The after noon session involved basic managment and care concepts. A good reminder for us "oldies" and great info for newbies.

The part of that session I enjoyed the most was entitled"Challenging the Myths"

Many of the things we hear about shoulds and should nots involving lymphedema are actually based on theory and not clinical evidence. One of these long standing myths has been in relationship to exercise and lymphedema.There is finally a surge in interest on this and good clinical evaluation going on. What is being found is that far from being dangerous for lymphers, exercise can play a pivtal role in over all body and lymph health.

The lymph system has no "pump" like the cardiovascular system which has the heart. Lymph flows through muscle contraction and action. Therefore it would seem self evident that all of us need to be involved in some type of physical activity and exercise regime.

I'll be totally honest with you. Growing up in the so-called "dark ages" on the 1950s and 1960s, I grew up not hearing that lymphedema was this awful forbodding prison where you are chained to the couch and prohibited from being active.

As such, I was always doings things and on the go...very very active.I am convinced after close to 53 years of lymphedema this has greatly benefited me in several ways.

1.) Quality of life - Certainly, I have had to modified what I do, but I would be the first to say my quality of life has truely been great and I have been able to enjoy so many things (can you imagine what the Alps look like at 12000' level on the top of a mountain)

2.) Over all health. Despite decades of battling cellulitis, other lymphedema complications and for the last ten years over all health is still excellent. No blood pressure problems, no heart problems...the only reasons I have had to see a doctor in the last 30 years has been specifically for lymphedema related complications.

3.) Weight - I have never had a weight problem and I contribute much of this not only to diet but especially to remaining an active person.So the key here is to get of that duff and get into some type of exercise.

Of course use common sense, and if you haven't been on a program, talk it over with your doctor and therapist and design a program. Start of slow and work your way up. I wish so badly all of you could understand the absolute importance of this.

In closing I want to express my personal appreciation to the Lighthouse Lymphedema Network for sponsoring this event and special kudos to Dr. Francis. She took an incredibly complex topic like genetics and talked in a way that every single person in the audience could understand.

I will do post also on product review and advocacy issues.

Wednesday, October 26, 2005

Children's and Pediatric Lymphedema - Page Four

Wrapping a Baby's Limbs with Lymphedema

Children with Lymphedema Yahoo Group

Amy - our daughter Jessica was born with LE in both feet/ankles and started CDT when she was a little over 2mos old. What we did then was a multi-stage process (the therapist could do both little legs in 20min, took ME 2 hours!)

1 - Wrap the toes only in a layer of 1in elastomull (dunno the generic term for this, it is a long, loose-woven (is that a word?) white bandage with a little stretch, but not as thick as a regular short-stretch bandage. Keep in mind we did this because she has LE in her toes pretty bad for her age - if your daughter has no toe involvement you might want to ask your therapist if you need to do this.

2 - We wrapped her foot, criss-crossed around her ankle, and up her leg to the knee with something called artiflex, which looks and feels like super-soft cotton balls pressed into badage form. This was to pad her foot/leg against any chafing that might occur from the later layers, we didn't start using a cotton stockinette for this til she was about a year old, and she still prefers it.

3 - A layer of 2in elastomull in the same patttern as the artiflex, stretching it a tiny bit while applying to give a little pressure.

4 - Finally! We topped it all off with a layer for self-stick bandaging called Coban (you can buy it in the store now under a variety of names.) This helped hold everything together and on, as she was learnign to crawl that was important. Toward the end of her therapy we found out the same product was made in colors and sold as vetrap in equine supply stores, and since it was about a $1 a roll cheaper we switched (ok, & cuz she was uber-cute in her color coordinated wraps!). That last sounds unimportant, but I know from at least one mom in the UK whose little LE girl is older that being able to treat with style becomes more important as our girls get older.

Hope this helps. As a last bit of advice, cuz we struggled with this alot when Jay was little, for baby shoes I recommend the Jumping Jacks Perfection bootie, bus it comes in WWW up to infant size 8. Her new podiatrist recently approved our buying her toddler shoes about a size too big to accommodate the swelling width/dorsum height of her foot, as long as we put a foam pad in the toes so her foot doesn't slide. She was so excited! We found her a pair of those toddler shoes with the LED lights in the heels and she won't wear anything else!

And, if you're wondering, no, we do not currently wrap, though I keep supplies on hand. We have her reduced enough to wear non-Rx shoes, and swim for an hour or so at least 3 days a week (joined a local Y with indoor pool). I still have mixed feelings about this, and worry whether we are doing the right thing, but we want her to have the opportunity to be as normal as possible, her pedi keeps anm eye on it with us, and we'll probably start harassing the new podiatrist to see her regularly as well. And, at 3 she can fight back. I was tidying up her wrapping supplies just this afternoon, re-rolling bandages that i had just tossed in the bag ages ago. She saw me and told me very firmly NOT to put that on her piggies! (Course she has an ingrown nail on one foot right now so she's a bit sensitive - you'll want to find a podiatrist for this to get the billing right if it happens to your little girl, this is Jay's 2nd in just over a year, on opposite feet, so this may be a recurring problem for her...)

I'm babbling, so I'll stop now, but post or email me if you have ??? and I'll answer to the best of my ability. When Jay was a baby I knew there were others with LE babies out there, but never found anyone to ask - everyone's kids were older... Anywho, hope this helps.

Dyannamom to Jay, bilateral LE in ankles/feet/toes, now 3yo

Lymphedema People

* * * * * *

Children's Emergency Wound Care Kit - Travelling Kit

Topical anti-biotic cream (fucidin)

Topical anti-fungal cream (lamisil)

Anti-septic/Anti-bacterial wipes

Oral pain relief medication in sachets (Calpol and Neurofen)**

Children's plasters (these are less tacky than for adults and are good forlittle ones because of the pictures)

Sterile pads and micropore tape (for larger wounds) - also masking tape is good as a make do

A Pen!! (for drawing rings around wounds)

A list of instructions for treatments and contacts

**Supply of antibiotics when travelling just incase**

* * * * * *

Lymphedema Emergency Wound Care Kit - Other Version

Below is a supply list of basic first aid supplies I always keep on hand.

Tube of baby diaper rash creme or ointment, should have zinc.

Tube of triple antibiotic ointment

Bottle of alcohol

Bottle of Hydrogen Peroxide

Roll of sterile gauzeRoll of paper nonallergan tape

Compression wrap that is only used to wound careSterile 3x3 (individually wrapped) gauze

Sterile 4x4 (individually wrapped) gauze

List of supplies never to use Never use regular surgical tape on a lymphodemous leg.

Never use regular bandaides because of the tape

Never use plastic tape of any kind (Because of skin condition involved with lymphedema these would present further problems by damaging the skin)

Children's and Pediatric Lymphedema - Page Three

Top Tips for Children with Lymphedema

Children with Lymphedema Yahoo Group

It's always going to be different for every child, but things that

1. Not being too cautious. It helps my son's confidence if he can dothe things his friends are doing, so let them take a few risks if you can

2. Keeping skin in good condition. We Aqueous cream night and morning -in the UK you can get a huge tub on prescription. You can also useit to wash with if skin gets dry. We also put emollient in the bath

3. Going swimming - like a gentle all-over massage

4. Trampolining (for lower limb LE)

5. Using SLD (simple lymphatic drainage) between MLD sessions

6. Sharing info with your child's teacher/school. As well as knowingwhat to do if your child gets hurt, teachers can help in other ways.For instance, my son was worried about other kids lookingat/commenting on his big leg/support hosiery in PE. His teacherexplained to the whole class about LE and why he wears a stocking.The other kids took it all on board and don't make an issue of it anymore

7. Doing things to make LE less of a bind and helping them feel a bitmore in control. Things like choosing own colour of stockings, havinga few hours without the stocking sometimes (maybe if they want tostay in pyjamas in the morning at the weekend), choosing a favouritestory to take along to MLD, having time off school for MLD instead ofgoing after school, having a special day together when you go to theclinic - like going to a film or having lunch out

Special Thanks to member and mom Katherine

* * * * * *

Massage slowly, approx. one cycle per second-
Massage gently, approx. the pressure when stroking a cat-
Use the entire surface of the hand when massaging. Avoid digging inwith your fingers.-
Perform the entire massage in the sequence as specified in this handout.
1. Apply circular motions to both sides of the throat, in thetriangular space just above the collarbone. Repeat 25x (I was told todo in sets of 5)
2. Apply circular motions to both underarms. First to the uninvolvedside, then to the involved side. Repeat 25x each side.
3. Glide the hand across the from the involved underarm to theunivolved underarm, in this direction only. Repeat 10x
4. Apply circular motions to the groin of the involved side pumping inan upward direction. Repeat 25x
5. Glide the hand from the involved underarm to the groin on the sameside of the throat, in this direction only. Reapeat 10x
6. Glide the hand from the involved shoulder to the same side of thethroat, in this direction only. Repeat 10x
7. Glide the hand from the elbow to the shoulder in three patterns:a. from the front of the upper armb. from the back of the upper armc. from the inside of the upper arm in a spiral motion to theoutside of the shoulder
8. Apply circular motion to the front & the back of the elbow. Repeateach side 25x
9. Glide hand from the involved wrist to the elbow, first to the frontside, then to the backside.10. Glide hand from the base of the fingers to the wrist, in thisdirection only. If the fingers are affected (Mia's are), massage eachfinger individually from the fingertip to the base. Repeat each 10x
The BEST advice the LT gave me was ~ stroke Mia as if softly petting acat. That is the easiest way to understand how much pressure touse/not to use.
Hope this helps! Stephanie

Children's and Pediatric Lymphedema - Page Two

Complications of Children's Lymphedema (cont.)


Acute Cellulitis is one of the complications of lymphedema. The patient may not be aware of the source of the etiology. Sometimes it may be a cut, mosquito bite, open wound or other infection in the body.The first sign is increased or different quality of PAIN involving the lymphedema limb. The patients often describe this as a "flu like symptom or an ache" involving the Lymphedema arm or leg. This is usually followed by sudden onset of ERYTHEMA(redness, red streaks or blotches) on the involved limb. The HYPERTHERMIA(lymphedema limb becomes warm, hot) will follow and the patient may experience the CHILLS and even HIGH FEVER.

Long term Prognosis for Children's Lymphedema

It is not possible with certainty to guarantee what lymphedema will or will not do as a person ages. Much of the long term outlook rests of the severity of the condition, complications that arise and other related medical conditions.

However, by having your child diagnosed early and by learning about and insisting on the proper treatment techniques you can keep the condition under control and your child can look forward to a long, active and enjoyable life - despite the lymphedema.

Stages of Lymphedema

Stage 1 (mild) - Upon waking in the morning the limb or affected area is almost a normal size. The tissue is still in a "pitting stage" ( when pressed by a finger the area indents and holds the indentation).

Stage 2 (moderate) - The tissue is "non-pitting" (when pressed by a finger the tissue bounces back without leaving an indentation). The tissue has a spongy consistency.

Stage 3 (severe) - The tissue at this stage is hard (fibrotic) and will be only slightly responsive to the touch. The swelling is almost irreversible and the limb is very large and swollen. Infections are possible at any stage of lymphedema but occurrence becomes greater as stages progress. A swollen limb, left untreated, becomes hard (fibrotic) and full of lymph fluid which is high in protein and a perfect medium for bacteria and infections.

Be sure to check through our entire page at Lymphedema People for updates.

Information at the bottom on wrapping a child's arm and leg, special tips for children with lymphedema, massage treatment techniques for children and more

Also, come join us at our Yahoo support group

Children with Lymphedema


For further information:

Children's and Pediatric Lymphedema

Children's and Pediatric Lymphedema - Page One


There are several parents on our list with children that have lymphedema. If can be a frightening experience when this shows up and there seem to be little or no answers and you are terrified of what the future holds.As someone who used to be a child with LE, all I can say is relax mom and dad. There are certain guidelines that apply to children with lymphedema as applies to adults as well. But, please let your children be children. I am turning 51 very soon and I have lived through falling out of trees, jumping off roofs, nails in the feet,2 broken arms and even being knocked out.

Signs and Symptoms for Children's and Pediatric Lymphedema

There are almost no articles available for parents who suspect their child might have lymphedema. From my childhood, I am going to connect some threads that might help. If other readers have additional remarks or symptoms they noticed in their children, your input would be a treasure.

Naturally, anytime there is unexplained swelling in a child you mustrule out every possibility, this includes cancers, congestive heart failure or anomalies, vascular malformations to mention only a few.

1. The first question to ask is, has there or is there any history or record of unexplained swelling in your parents or their parents generation. Was here an aunt who suddenly started swelling after giving birth, was there an uncle that experienced an injury and suddenly had limb swelling? Remember back then there was no real concept of lymphedema as a distinct condition and certainly even lesswhen it came to such conditions being genetically based.

2. If your child is an infant, is the swelling sudden or has it been a gradual process. Often infants with lymphedema have periods of "bloating" or times when their limbs (more particularly legs) swell unexpectedly. With male infants, you may have times of unexplained scrotal swelling. Remember, these easily swelling more often than not can be transient. The limb maybe swollen one day, normal the next.

3. If there has been any swelling in a limb, how does it react to a mosquito, flea or other insect bite. In my left leg, which was the first to go "permanent" an a mosquito, ant or flea bite would become a major boil.

4. When there has been such an incident as an insect bite, or during periods of inflammation has you child experience a swollen and painful lump in the groin? That could be indicative of where a lymphatic blockage may be.

5. If there has been swelling and the child goes swimming, does it return to normal size? Swimming most mimics the naturally movement process of the body in conducting lymph that in very earl stages of lymphedema, the water pressure will cause the limb to be normal in size.

6. Meige lymphedema or lymphedema praecox presents itself at puberty.It is assumed that the plethora of hormones gushing through a teen's body causes the lymphedema to go from latent to active. Has your teen or tween experienced any "out-of-the-blue" swelling? Was there an infection or injury that caused a limb to swell that did not return to normal.

Remember, I am not a doctor and these are just personal observations from my own experience. I hope this helps, and as I said if any parent has additions or differing symptoms, I would greatly appreciate your input. Maybe together we can build a database of symptoms so these wonderful children can get treatment sooner.

Factors that will determine treatment

1. Related medical conditions and your child's health. There are a number of hereditary syndromes associated with primary lymphedema and treatment for those conditions will need to compliment the treatment for lymphedema.

2. To extent of the lymphedema. Considerations include if it is in one or both legs, one or both arms or if genital swelling is involved.

3. The stage of the lymphedema. Usually children, due to age present with Stage 1 and as such it is much easier to treat successfully.

4. Your child's ability to tolerate certain procedures, therapies and/or medications.

5. Your child's overall prognosis. Again the consideration for this will include any related conditions.

6. Parents preferences

7. Age of your child

Treatment of Children's Lymphedema

As with adults with lymphedema, the preferred method today of treating limb (arm and or leg) is through decongestive therapy. After undergoing therapy, your child will be fitting with the appropriate compression garments and you as the care giver will be taught compression wrapping and how to care for the garments.

I strongly suggest (plead) with parents do not let a doctor perform debulking or reconstructive limb surgery on your child. It is almost never needed except in the most severe and otherwise untreatable situations.

For genital lymphedema, male or female the standard treatment is still surgery. However, new massage techniques are and have been development (with support garments) that I feel will be more successful and less risky than the surgical techniques.

Because of the concern and risk of genital lymphedema, I also strongly suggest that parents not allow the use of compression pump devices on their child. They have been shown to cause genital lymphedema and also damage the existing secondary lymphatics.

Another concern is that you and your child will need to learn proper skin care. This will help prevent dryness, cracking and open areas that could lead to infection.

Complications of Children's Lymphedema

Because of the age, the complications involved with children's and pediatric lymphedema are not so severe as with long untreated adult lymphedema. They do include however

1. Risk for cellulitis, related infections

2. Weeping wounds, breaks in the skin

3. Spreading lymphedema. Often legs may be involved initially and later the hands, arms or genital will become involved.

4. Complications involved with bandaging such as blisters, rubbed sore spots, rashes and other skin conditions.

5. There also may be pleural effusions or lung edema although this is not typical in children

What to do if Your Baby has Lymphedema

By Silkie

I have been searching every where to try and get information for our mumsAnd I am shocked, There is no help. I have been thinking what I would doAs a Mum.

I am a Mum with lymphedema, I could not sit and wait, till my chilld was 3.

I would do simple routine with my baby.

1) In the bath I would always stroke the infected limbs upwards away from the fingers or toes. Playing and laughing making a game of it as we went along .

2) Never run dry a limb that has swelling pat and it must be thoroughly dry all the little creases in the limb take extra care with, Particular attention to between toes and fingers. The least tiny break in the skin can cause bad infection.

3) Nail care. Toe nails always cut straight across keep them short as possible. If one caught on something and tore it could set of infection.

4) I would use a cream (non scented) on the limb paying attention to toes or fingersall the time remember work up not down the limb and soft as a babies breath, stroke the cream up the limb even if only a few strokes let this be a fun thing, your preparing you little one for a routine that he/she will have to follow for life.

Always up the limb one- way don’t bring your hand back down the body in contact with the skin just upward stroke.

If there is any change in colour or reddening of skin stop this has to be so soft it does not change colour of the skin.

5) I am not suggesting you wrap but might be fun to get baby used to you handling the limb by pretending to. May be while your wrapping round do a nursery rhymethe round a round the garden one something like that just all the time getting your baby used to the touch and feel of you doing these things.

6) I would always have the limb covered wither with long sleeves or pants again you will be helping you baby get used to having something on the limb at all times.

7) Remember extreme Heat and cold are bad for lymphedema try to avoid at all times.

8) Always have some form of footwear on if the legs are infected remembering that the limbs can swell and a tight fitting shoe can not only rub the skin maybe causing an infection but also damage the development of baby’s feet.

9) Exercise is good for the limb. I have to do a foot exercise lying down I point my toes to the ground then back up again at the ankle. I lift my leg keeping it straight from the bed as high as I can, I try to draw my knees up to my tummy.Little thing like that could be fun.

10) I did a bonding yoga massage with my daughter, I found the best place was on the floor. My legs in a diamond shape with big blanket over them and my daughter between my legs she was comfortable, we really had lots of songs giggles fun.

11) Baby’s bottom . I would be extra careful changing often, remember one tiny break in skin can allow an infection to start.

These are just my own thoughts on how I would try to deal with lymph if I had a babyLet us hope you get help. But like one or two of our Mums have been told leave it to little. It must be agonising, if nothing else I would try to get my child used to the touch and feel of what is after all going to be their every day routine.You may have your own ideas of how to Help your baby somwe things you have tried all ready If you have weather successful or not let us know lets get some personal experience together for others the positives and negatives.

Lets keep this information coming in. That way mums can find it and do what they think best but there are ideas to help......Silks.................

Additional information: Children with Lymphedema Yahoo Support Group


See Also: Children's and Pediatric Lymphedema

Friday, October 21, 2005

The Flexitouch Device for Lymphedema


Pat O’Connor

Lymphedema People

October 17, 2005


The information contained herein is not meant to be an endorsement of the Flexitouch Device and in designed to be an educational advisory to lymphedema patients. Also, I have received no compensation for this article and in fact, I was not asked by Tactile Systems to write this.

My opposition to use the use compression pumps for the treatment of lower limb lymphedema is well known. Due to the well documented incredibly high risk of genital lymphedema, I personally just don’t feel they should be used.

Upon my review of the Flexitouch device, it seemed to be such a radical departure from the products we are familiar with, that I felt further investigation was warranted.

I also want it noted that I went into this demonstration with a cynical attitude and looking for any reason to not like the device.

Our Problem:

The biggest challenge those of us with lower limb lymphedema is perhaps how to maintain the reduction of swelling achieved after decongestive therapy treatments. We all know the importance of patient compliance in the maintenance phase of lymphedema management. However, with leg lymphedema that is easier said then done.

First, self massage therapy (simple decongestive therapy) is all but impossible without the assistance of another individual. Secondly, the compression hosiery has been for me a nightmare. I stopped using them decades ago because of complications involved. A couple years ago I tried again, hoping there had been an improvement in the product design. What I found was the same complications. Severe bunching and cutting off of circulation at the groin, knee and ankle caused me to once again discard the idea.

My Concerns:

My concerns about the product were three fold. First, basically does the device work towards the reduction of swelling. Secondly, with the pressure used, what is the risk of damaging the delicate superficial lymphatics. Third, what would be the possible risk of genital lymphedema as a result of using the device.

After treatment I was very careful to pay extremely close attention to any scrotal edema and to watch for any residual discomfort in any treated area. This included watching for discomfort in any nodal regions that had been treated.

On that I am able to report there was absolutely no change in scrotal size and not even a hint of residual pain of any type.

The Company:

I will say that I was favorably impressed and pleased that the representative from Tactile was also a registered nurse instead of simply a salesperson hawking a product. The rep also answered each and every question I had in a thorough and knowledgeable manner.

In review the company staff, I was also impressed with the number of medically trained people in the company.

They also have a complete appeals section staff that will do all the work necessary should your insurance company deny coverage.

Also, I want to emphasize, the company is marketing this and makes a very clear point of saying the device is not in any way meant to replace the all important decongestive therapy that we all should have. Instead, they stress that this is an adjunctive tool to be used at home in a maintenance program after you go through your prescribe treatment protocol with a therapist.

The Garment:

The garment used was a soft fabric and is wrapped around the leg and abdomen. It is held in place by Velcro, which means it can be adjusted specific to the individual needs of the patient. For the purpose of the test, I chose the firmest fit.It is also composed of 32 separate chambers and provides a very gentle ripple effect versus the “squeeze” effect used by pumps.

Preparation Phase:

One of the claims of the company is that the device follows the same preparation protocol used by lymphedema therapists. I found this to be accurate. You go through an initial thirty minute preparation phase where at first the abdominal lymphatics are cleared and then subsequent preparation of the leg. The pressure used was extremely light and did in fact follow exactly the lymph flow patterns that a therapist would use.

Treatment Phase:

Once the prep stage was completed, a thirty minute treatment phase began. The experience was one of a gentle ripple effect that went from toes to abdomen. The pressure again was gentle and light.

The Experience:

I must say that overall the experience was extremely comfortable and even relaxing as it felt much like a massage. There was absolutely no pain or discomfort and not once did the thought come to mind that “I can’t wait for this to be over.”

The result:

Before we began treatment, the leg was marked and measured. Afterwards, using the same mark, there was a 2 centimeter decrease in limb size.

Contraindications for Usage:

There are of course, contraindications for the usage of the device as would be common with pumps or actual hands on therapy by a therapist. I would add two more relevant ones.

First, I am still too uncomfortable with possible complications to suggest anyone try any device and/or pump is you already experience any type of genital lymphedema. This would be true for male and/or female.

Secondly, and this is strictly individual, is that if you have any extent of pleural effusions (lung fluid), you should not use it.

As the device cleared the abdomen, the fluid was moved upward. In my personal situation with lymphoma being spread throughout the lymph system and with the extensive pleural effusions I have, I experienced a serious problem with breathing.

This did clear up after I had been up again, and I have no residual problems today.Drawbacks:The central drawback may be in the price.


First, I want to say that I am very pleased that the pressure on the machine is preset at the factory and can not be changed. This eliminates the risk that we have sometimes thinking if some pressure if good, more pressure is more effective. That means the device is safe from patients causing self injury by the miss use of the strength of the pressure.Also, due to the light pressure used and the very gentle rippling effect of the therapy, in my personal opinion, I don’t see how this device could possible cause damage to the superficial lymphatics.

Second, what is still needed is a study on the possible risk of genital lymphedema. Without such a study it is not possible to say emphatically that the device will not cause that complication. However, having said that I would be extremely surprised if the device did cause it. This is a result of the preparation phase, clearing of the abdominal lymphatics and the gentleness of the ripple pressure used.

Finally, for many years I have wondered why a pneumatic device could not be invented that was safe, effective and that mimicked hands on decongestive therapy. Clearly, the Flexitouch is the closest device to that I have seen and I must candidly admit, I am excited about the potential here.

I am not a medical professional, nor have had formal medical training. The opinions expressed herein are my own personal opinion based up a personal review, test treatment session, my experience with lymphedema and knowledge of the lymphatic system.

© 2005 Pat O’Connor, Lymphedema People. Written authorization must be obtained before the reprint, reuse or republishing of this article or any part therein.

Thursday, October 20, 2005

Lymphedema and Your Self Image

Lymphedema and Your Self Image
Lymphedema can take a terrible toll on a person's self image. So many many times I hear people with lymphedema talk about how they hate the way they look, how they can't stand seeing themselves in a mirror...can't stand being who they are.
This to me is sad, because I am much more then lymphedema. I am the person inside, my values, my beliefs, my talents, my creativity....I am the person within my heart and within my soul.
Lymphedema may be a part of my life...but it doesn't define who I am as a person and I can't let it decide for me, what my self image is.
Here are a few items I thought were good on the concept of self image.
Building A Positive Self-Image
Self-esteem is how you see yourself as a person. If you value the type of person you are, you have a good sense of self-esteem and you're proud to be you. You value your skills and talents, respect your own intelligence and act on your beliefs and feelings. But if you could feel better about yourself, these tips might give you some ideas about how to start.
Listen to Self Talk

We all carry on a steady mental dialogue. Do you ever listen to what you're saying to yourself? Do you put yourself down or call yourself names? Learn to hear the things you say about yourself, then replace that dialogue with positive images. Stop negative self-talk and take the first step toward a more positive self-image.

Recognize Accomplishments

Make a list of your accomplishments, no matter how small they may seem to you. Maybe you won't win a Nobel Prize, but your accomplishments have worth to you. By recognizing them, you can begin to understand that you are important and that you have self-worth.

Be Assertive

Learn to be assertive and to practice clear communication. Say what you mean and respect what others have to say. Remember that you have rights, too.
* I would add that if you are comfortable with who you are, it will be ok for others to have different opinions and perspectives without you feeling threatened or intimidated *

Be Tolerant

Be tolerant of yourself and others. Nobody's perfect! Try not to criticize yourself or other people and don't expect others to criticize you. Recognize that a mistake is only a mistake and don't dwell on it.

Know Good Friends

Spend time with people who value you. Listen to what they say about you. If others are constantly putting you down, you might want to reconsider those relationships. People you choose to be around are often mirrors of how you feel about yourself. You can find the best in yourself and others by expecting it.
* * * * * *
Negative self-talk and your self-esteem
Self image is how we see ourselves, and how we think others see us. Self image plays a HUGE role in how we behave and feel.

Q: What is self esteem?

A: Self-esteem is our internal feelings and evaluation of ourselves based on our "perceived" self-image.

Self-esteem and self image are closely inter-related. And, are largely based on our feedback while growing-up (parents, peers, other important figures).

Fact: it takes about 20 positive statements ABOUT OURSELVES (the foundation of our self-image---self-esteem) to counter-act even just 1 negative personal statement!

Here's the difficult part: it doesn't take a continual repetition of negative statements from our parents, peers, and others throughout our childhood to cause low self-image-self-esteem...fact is, once we get a couple in our head, we can use them over and over again. Again and again we take those false negatives and repeat them unconsciously (completely unaware). It's like having a constant heckler with you.
* * * * * *
Charles Stanley
January, 1990 Radio Message
"Self-Rejection: Its Characteristics, Causes & Cures"
"Self-rejection is a form of bondage that causes you to project these feelings on others that they didn't feel them at all." (Self-rejection, and all the so-called feelings associated with it, would be better defined (Biblically) as one's sinful response to ones circumstances and/or sin against him.)
- Uses Col. 1:21,22 as proof-text for this message and the thesis that people who suffer from feelings of self-rejection, "suffer from a very painful form of bondage."- "People in self-rejection syndrome have chronic feelings of unworthiness."
- "Rejection is a form of control, manipulation, and domination; when someone needs acceptance and we deprive them of that, we are controlling, manipulating, and dominating them." (The Bible, of course, knows nothing of this "need for acceptance;" its source in humanistic psychology.)
- Stanley's bottom line is that "people who suffer from self-rejection are willing to base their self-worth on opinion of others rather than on relationship to God."
- "Dominating thought of person feeling self-rejection is this: 'I must please these people in order to feel good about myself.'"- Characteristics of people feeling self-rejection:

- Overemphasis on dress (a self-image problem)
- Difficult time trusting God- Difficult time loving others/being loved by others (psychic determinism/childhood hurts)
- Critical spirit- Feelings of inferiority/inadequacy
- Anger
- Perfectionism ("I must be perfect to feel good about myself; arrogance and pride feelings are really cover-ups for insecurity.")
- Easily hurt
- Suspicious of others actions
- Self-isolation (that way, the only one that rejects them is themselves)
- Depression (because you failed your expectations)
- Self-verification (of their worthiness/self-worth)
- Sensual fantasies (not a matter of sexual morality, it's a matter of acceptance)
- Domineering the circumstances

The above list should actually be labeled "sinful responses of people claiming self-rejection." The above items in the list have no Biblical basis. Their roots are instead Rogerian/behavioristic psychology and Freudian psychic determinism.
- "So what if someone else rejects you, your self-worth is not based on that individual's opinion, but on God's."
*Causes of self-rejection: (This scenario completely ignores an individual's responsibility for sinful responses to ones circumstances and/or to sinful actions against them.)

- Early in life deformity
- Deep emotional hurt from past childhood [psychic determinism]
- Death of a parent ("Daddy died because he didn't love me" feelings.)
- Abandonment ("You create awesome feelings of rejection that will go with that family the rest of their life, and you will be the ultimate reason for it.")
- Divorce
- Child abuse
- Guilt feelings from past sins/mistakes
- Criticism from other people

- According to Stanley, three feelings needed for one to be emotionally healthy:

(a) Feelings of belonging
(b) Feelings of worthiness
(c) Feelings of competence

- Self-worth should be based upon what God says, which according to Stanley is, "I have a sense of worth -- Jesus died for me; I have a sense of competence -- the Holy Spirit is working in me" (complete failure to recognize that Christ died for us, not because of our great worth, but because of our great sin!).
- Stanley's three steps to overcoming self-rejection:

(a) Identify the feelings of rejection(b) Reject the feelings of rejection (based on God having said, "I'm worthy ")(c) Affirm the following: (sounds a little like positive confession)

(1) "Father, I thank you that I am
unconditionally loved"(2) "I am completely forgiven"(3) "I am totally accepted"(4) "I am complete in Christ"

Saturday, October 15, 2005

How to be Safe with Complementary and Alternative Medicine

Our Home Page: Lymphedema People


During the past few months, there seems to have been an explosion of interest in using complementary and alternative medical treatments (CAM) for lymphedema. Unfortunately, there have also been those who are throwing out an extensive amount of links and info without any seeming concern about either the effectiveness of these treatments or of their safety.

We who have lymphedema face enough heartbreak and challenges without adding to them by further damaging our bodies with substances treatment concepts that have not been through clinical studies.

I can only urge my fellow lymphers not to be so desperate for help that you fall victim to and are further damaged by some of these methods and products.
There are many "things" you can take that will actually bring short term relief from edema, but what are the long term consequences?

Here are some tips on how to be safe the complementary and alternative medicine and questions to ask when considering any proposed product or treatment method.

General Considerations:

1.) Lymphedema is caused by damage to, removal of and/or malformation of your lymphatic system. There are no magic bullets, no quick fixes and at this point, no miracle cures. Unfortunately, this is the reality we have to live with and that has to be taken into consideration with any suggested treatment.

2.) It is extremely important to always take into consideration other medical conditions you have and how CAM treatments are going to effect that medical condition. This is especially important when considering supplements. For example, one buzz word now seems to be "lymph-detox." These products have combinations of many ingredients that are dangerous for those with heart, liver, lung and other disorders.

3.) Always look for independent (double-blind) clinical studies that test not only the treatment's effectiveness, but its safety. Be wise, never accept the claims for a product from either the manufacturer or the company that sells it. The reason is simple. Their focus is to persuade you to buy their product. An independent clinical study has only one main focus and that is to find the truth regarding a product's claims and they have no financial gain or loss involved with the product/treatment.

4.) Don't assume also, that just because there is a written article touting the benefits of a product that it is true. Also, don't assume that just because it is on the internet it is valid. Anyone can put together an article and that is why again independent clinical studies are so important.

5.) Find out the credentials of the person writing the article, who discovered the new wonder cure or who is suggesting it is going to help. What is the person's educational background? Have they had any medical training at all? What kind of license or certification do they have? Remember, anyone can put the letters Dr. in front of their name or claim to be a scientist who is in the know. What do they gain financially from the product?

6.) Find out what information is available about the potential benefits, risks and side effects. Check this out thoroughly. When surfing the internet use keywords like "dangers of," "risks involved with," "contraindications of." Often you have to use variations of word combinations to find the information you need on the internet. If you are considering a supplement, you may want to look up each ingredient individually.

7.) Look for buzz words or phrases: (1)

*The product is advertised as a quick and effective cure-all for a wide range of ailments.

*The advertisement includes undocumented case(s) [or testimonials] claiming amazing results.

*The product is advertised as available from only one source, and payment is required in advance.

*The promoter promises a no-risk "money-back guarantee". Be aware that many fly-by-night operators are not around to respond to your request for a refund.

8.) Always, keep all your doctors informed of what you do, are thinking of doing and always be sure you thoroughly discuss everything with them before undertaking any CAM treatment.

9.) It is imperative that you understand how any supplement, herb or ingredient is going to interact with other medications you are on. Your doctor can also help on this and you can also research this on the internet. Many supplements are simply dangerous when combined with other medications.

10.) Remember, it is your life and your health that is involved here. You are the one who may be injured or put in the hospital from using something, not the person who sold you the product, nor the ill-informed friend that suggested you use it. It is our personal responsibility to ourselves to be prudent and safe.


(1) Evaluating Alternative/Complementary Therapy Information: BC Cancer Agency.

Surgery for Lymphedema


Our Home Page: Lymphedema People


Types of Lymphedema Surgeries


Related Terms: Charles Procedure, Thompsons Procedure, Buck's Fascia, Homans-miller Procedure, Kondoleon Procedure, Sisktrunk Procedure, Thompson Procedure, Lymphedema Microsurgery, Dermal Flap, Miller Sistrunk Procedure, Surgical Therapy

Lymphedema Surgery Through the years there has been several surgical techniques used in attempting to treat lymphedema. Generally, all these surgeries involved stripping out of the subcutaneous lymph filled regions and one (Thompsons) procedure even attempted to build a bypass for the lymph system.

These surgeries includes the Kondolean Procedure, The Charles Procedure, The Sistrunk procedure (1918), The Homans-Miller procedure (1936), Miller/Sistrunk staged excision operation, The Thompson Procedure, and The Buck Fascia Procedure.


Lymphedema Surgeries

The approaches to the surgical treatment of lymphedema fall into two categories. Either, one attempts to ablate the offending tissue, leaving behind only those tissues drained by the competent lymphatic system. Alternatively, attempts are made to augment lymph flow or egress from the lymphadematous extremity by 1) attempting to establish communication between the superficial, compromised lymphatics, and the deep, competent system; 2) the provision of an alternative route of lymph drainage (external); 3) the construction of direct lymphatic to venous anastomoses.

Yale Medical School


Kondolean Procedure (1912) One of the earliest procedures is the Kondolean procedure (1912). It involves resection of subcutaneous lymphedematous tissue as well as creating a fascial window as a means of establishing communication between the superficial and deep lymphatics. Apparently, the fascial window does not work, and only the tissue resection part of this procedure is still used, and erroneously referred to as the Kondolean procedure.Yale Medical School


The Charles procedure (1912) is an ablative procedure whereby the affected subcutaneous tissue is resected down to muscle fasci and the area covered with skin grafts taken from the resected specimen. This procedure is no longer performed. The Charles procedure, as an eponym for the surgical treatment of leg edema, is actually a longstanding misnomer, seeing as Sir Richard Henry Havelock Charles is known for describing a treatment for scrotal lymphedema in 1901, having treated a series of 140 patients with this condition. Sir Havelock had never treated a patient with leg edema, but in 1950, Sir Archibald McIndoe, an eminent British plastic surgeon wrote an article in which he mistakenly claimed that Sir Charles had treated a patient with leg edema with excision of subcutaneous tissue and skin grafts back in 1912. Since then, the error has been propagated throughout the years.

Yale Medical School


The Sistrunk procedure (1918) The Sistrunk procedure (1918) is an ablative procedure like the Charles procedure, after which the resected areas are covered with skin flaps.


The Homans-Miller procedure (1936) is a modification using thin skin flaps to cover the resected area. Using particularly thin skin flaps, Miller was able to achieve an aesthetically pleasing result. Miller elevates an anterior and posterior flap from both a medial and lateral incision, raising flaps approximately 1 cm thick. The underlying lymphedematous tissue is excised down to muscle fascia. The skin flaps are trimmed and sutured into position. Good aesthetic and functional results are obtained with this procedure, which is now considered the standard ablative approach used in the treatment of forearm and upper extremity lymphedema. However, occasionally second or even third operations are required to obtain the maximum benefit.

Yale Medical School


The Thompson Procedure is actually a combination type using techniques of both the Charles and the Miller surgeries. The limb is first debulked, the a flap ofskin was sewn into the muscle of the limb with anticipation that flap would act as a "wick" drawing the fluids into the deeper lymphatics.I had three of these procedures done from 1971 - 1973. In desperate hopes by my doctors I could be helped. They were performed by Dr. Richard P. Andrews and Dr. Christopher Haugy at the Good Samaritan Hospital in Portland, Oregon.The effectiveness of the surgeries is doubtful and the procedure has been somewhat discarded.

Pat O'Connor - Lymphedema People


The Thompson dermal flap procedure attempts to merge dermal lymphatics with the deep system by burying a deepithelialized dermal flap. A long flap similar to that used in the Miller procedure is raised and instead of the excess tissue being excised it is deepithelialized and buried, thinking that communications between the superficial and deeper tissue will develop, although there has never been documentation of this, as any benefit with this procedure could well be solely due to the excision of tissue. In addition, the viability of this long random pattern flap is questionable, and the procedure as a whole has not become particularly popular.

Yale Medical School


Surgical Management of Lymphedema

There have been several questions on our Lymphedema forum asking about the surgical treatment options for lymphedema so I decided to provide a general discussion of the surgical management of lymphedema. The are several different surgical approaches to the treatment of lymphedema. For the sake of simplicity, most of the techniques involve the formation of an anastamosis between the lymphatic system and the venous system. An anastamosis is essentially a bridge or conduit from the lymphatic system to the venous system. The goal of these microvascular surgeries is to form a channel between the pooled and blocked lymphatic system and the venous system so that the venous system can remove the accumulated lymphatic fluid.

A brief review the physiology of the lymphatic system is in order to help understand these surgical techniques. Arterial, or oxygenated blood is pumped from the heart to the various tissues. The oxygen is removed from the blood by the cells and cellular waste products are dumped into the blood from the cells. The deoxygenated blood is the venous blood and it flows back to the heart where it is pumped to the lungs to pick up more oxygen.

All cells are bathed by a small amount of fluid that circulates around the cells and then drains into the lymphatic system. The lymphatic system arises from these tiny spaces between cells. In many ways, the lymphatic and venous system are similar since they both function to remove excess waste from cells. The lymphatic system differs from the venous system because it is a much more delicate system of channels. In addition, the volume of lymphatic flow is less than 10% of the flow of the venous system. The lymphatic system is so delicate that in many places the walls of the lymphatic channels are only a few cell thick. These channels are often difficult to identify under the microscope and it takes a trained eye to identify them. The lymphatic channels converge into larger channels and finally drain into the venous system before entering the heart.

These lymphatic and venous systems, while separate, run in parallel. Therefore, a bridge can be formed between the two systems allowing for the drainage of excess fluid from an obstructed lymphatic system. As you might imagine, such bridges would have to be very small. In addition, once formed, flow could go from the lymphatic system to the venous system, but flow could also go from the venous system to the lymphatic system. Since the lymphatic system is frequently obstructed in cases of lymphedema, the lymphatic system is more likely to be a higher pressure than the venous system and the flow is likely to go from the lymphatic system to the venous system thereby alleviating the condition of lymphedema.

While the concept of forming a surgical channel to remove excess lymphatic fluid is very appealing, forming an effective and stable anastamosis between obstructed lymphatic vessels and the venous system is technically very difficult. The trials that report on these techniques are often very small, the follow-up is often short and there is inadequate information about what happens to the patients in cases where the surgery was ineffective. A paper entitled, Microsurgical lymphovenous anastomosis for treatment of lymphedema: a critical review(1) was published from the Mayo Clinic several years ago and the authors followed their patients for an average of three years after the surgery. Their trial was also small, involving only 18 patients. The patients were mixed, some had secondary lymphedema, some had filariasis and some had primary lymphedema. 14 patients were evaluated and of these 14, 5 had improvement, 5 were unchanged and 4 had progression of their lymphedema at the time of last follow-up. The authors concluded that there was no objective evidence supporting the value of microsurgical treatment for lymphedema.

One of the main concerns about using surgical approaches to the management of lymphedema is the probability of making the condition significantly worse. Patients with lymphedema have enough problems without making the condition worse with an invasive surgical procedure. One of the critical questions that must be addressed by these studies is the complication rate and the extent of worsening of edema experienced by these patients. There will be discussion of the surgical approach to the treatment of lymphedema at the upcoming NLN conference and I look forward to learning of any new and effective treatments.

One of the more exciting possibilities is the use of growth factors that selectively stimulate the growth of lymphatic vessels. These growth factors have been identified recently and research is ongoing to understand how they work and whether they will be of benefit in the treatment of lymphedema. While this is only in the earliest stages of research, such technology offers the promise of effective therapy in the future.

One of the problems with these by-pass surgeries is that the by-pass tract becomes blocked soon after the surgery. We learned this while studying cardiac by pass surgeries and surgeries to by pass obstructed veins in the legs. Since obstruction of the lymphatic by pass channels also appeared to occur, anastomoses were performed in dogs to determine the rate of blockage of lymphatic venous by-pass surgeries (2). By 8 months, 75% of the anasotmoses were blocked. The authors concluded that the rate of blockage was high; therefore, chances of success were better when several anastomoses were performed in the early stages of lymphedema, before significant tissue fibrosis and complete loss of lymphatic valvular function occurred.

There have been relatively few papers written about these techniques from centers in the United States in recent years. Many of the publications have come from Russia, China and Japan.

In a Russian study, 152 patients were followed for a period of 2 to 6 years after surgery to form an anastomosis between the lymphatic and venous systems (3). Approximately 2/3 of the patients demonstrated improvement; however, 1 of 3 patients did not improve or got worse. Only the abstract is available in English and the authors did not report the percent of overall percent changes in limb volume. In addition, they did not discuss the whether complications of the surgery were observed.

In China, 110 patients with lymphedema of the were treated with microsurgery forming an anastomosis between lymphatics and veins (4). Ninety-eight patients with lymphedema of the extremities were followed-up for 26 months and about 2/3 of the patients demonstrated improvement. In those patients, the average reduction in circumference of the affected limb was 59%. However, there was no discussion of the long-term effects of the surgery or the results or complications among the patients that did not respond to the surgery.

In Australia, 52 patients were treated by microlymphatic surgery (5). Significant improvement was observed in 22 patients (42 percent), with an average reduction of 44 percent of the excess volume. However, long-term results were not available. In addition, the authors concluded that better results can be expected with earlier operations because the patients usually have less lymphatic disruption.

A recent article from Japan, reports the use of microsurgical lymphaticovenous implantation for the treatment of chronic lymphedema (6). This technique involves placing a lymphatic shunt in the area of obstruction. Only 8 patients were treated with this method and larger studies are need to assess the long-term benefit of this technique.

One of the main concerns about using surgical approaches to the management of lymphedema is the probability of making the condition significantly worse. One of the critical questions that must be addressed by these studies is the complication rate and the extent of worsening of edema experienced by these patients. There will be discussion of the surgical approach to the treatment of lymphedema at the upcoming NLN conference and I look forward to learning of any new and effective treatments.

One of the more exciting possibilities is the use of growth factors that selectively stimulate the growth of lymphatic vessels. While this is only in the earliest stages of research, such technology offers the promise of effective therapy in the future.

Tony Reid MD Ph.D

AcknowledgmentPeninsula Medical, Dr. Reid's Corner


For additional information:

Lymphedema Surgeries