Posted by: patoconnor | March 5, 2012

How to Cure Lymphedema

How to Cure Lymphedema

Yet another “new” item that seems to be showing up in regards to lymphedema is the claim that you can cure lymphedema.

Use this lotion – take this potion!

In the days of the old West, we always hear the stories of snake oil salesmen traveling through the countryside with their wagons hustling “magical cures” for all ailments.

We are much more sophisticated today, now we use the internet to sell the snake oil.

Please understand that as of this date (Dec. 31, 2011) there is absolutely no “cure” for this condition. Don’t be misled by someone who claims to have such cure. Certain techniques that claim to cure lymphedema is exercise and/or microsurgery, lymph node transplant. First, there is absolutely no evidence to support the claim the early intervention and exercise can cure LE. Microsurgery does hold promise and some have had initial good results. However, that is still considered as experimental and there are no studies out showing the long term results (10 years).

Lymph Node Transplant is also very very early in its use and is considered quite controversial and is very much experimental. Also, because there is mounting evidence that anyone who gets secondary lymphedema was born with a defective lymph system. Yanking out nodes in these individuals to put elsewhere is simply transferring the locale of the potential start of lymphedema. We need honest, clear independent clinical research on outcomes that cover not simply a couple years or even five years, but much further out to include 10 years and 20 years.

Why is there no cure?

The understanding of this, rests in the pathophysiology of lymphedema is caused by either trauma/damage to the lymphatics and/or being born with a malformed lymph system. Those born with it may also be missing lymph nodes throughout their body. This is why I had LE from birth. I am missing critical inguinal lymph nodes as demonstrated by a lymphangiogram I had back in 1966,

The only way to cure lymphedema is to have that lymph system repaired (healed) or to have any missing nodes regrown.

There is no way of doing that, at the moment. There IS promising research going on, but we are still a long way off.

Believe me, if anyone would hope for a cure for this rotten condition it would be me. Mine started from birth some 50 years ago and presently I am having to cope with many complications, some of which includes lymphoma (a lymphatic cancer) and had massive pleural effusions.

Can Lymphedema be Treated?

YES!

The preferred treatment today is decongestive therapy. The forms of therapy are complete decongestive therapy (CDT) or manual decongestive therapy (MDT), there are variances, but most involve these two type of treatment.

It is a form of massage therapy where the leg is very gently massaged to actually move the fluid out of the leg and into an area where the lymph system still functions normally.

With these massage treatments, swelling is reduced and then the patient is fitted with a pre-measured custom pressure garment to keep the swelling down and/or is taught to use compression wraps to maintain the leg size.

Following this brief article is a complete list of all our treatment and/or proposed treatment methods.

Are there ways to help delay the possible onset of lymphedema?

Again, YES

Below is a list originally put out by the National Lymphedema Network.

Eighteen Steps to Prevention of Lymphedema

1. Absolutely do not ignore any slight increase of swelling in the arm, hand, fingers or chest wall (consult with your doctor immediately).

2. Never allow an injection or a blood drawing in the affected arm(s).

3. Have blood pressure checked in the unaffected arm.

4. Keep the edemic arm, or “at-risk” arm spotlessly clean. Use lotion (Eucerin, Nivea) after bathing. When drying it, be gentle, but thorough. Make sure it is dry in any creases and between the fingers.

5. Avoid vigorous, repetitive movements against resistance with the affected arm (scrubbing, pushing, pulling).

6. Avoid heavy lifting with the affected arm. Never carry heavy handbags or bags with over-the-shoulder straps.

7. Do not wear tight jewelry or elastic bands around affected fingers or arm(s).

8. Avoid extreme temperature changes when bathing, washing dishes, or sunbathing (no 1sauna or hot tub). Keep the arm protected from the sun.

9. Avoid any type of trauma (bruising, cuts, sunburn or other burns, sports injuries, insect bites, cat scratches).

10. Wear gloves while doing housework, gardening or any type of work that could result in even a minor injury.

11. When manicuring your nails, avoid cutting your cuticles (inform you manicurist).

12. Exercise is important, but consult with your therapist. Do not overtire an arm at risk; if it starts to ache, lie down and elevate it. Recommended exercises: walking, swimming, light aerobics, bike riding, and specially designed ballet or yoga. (Do not lift more than 12 lbs.)

13. When traveling by air, patients with lymphedema must wear a compression sleeve. Additional bandages may be required on a long flight.

14. Patients with large breasts should wear light breast prostheses (heavy prostheses may put too much pressure on the lymph nodes above collar bone). Soft pads may have to be worn under the bra strap. Wear a well-fitted bra that is not too tight and with no wire support.

15. Use an electric razor to remove hair from axilla. Maintain electric razor properly replacing heads as needed.

16. Patients who have lymphedema should wear a well-fitted compression sleeve during all waking hours. At least every four to six months see your therapist for follow-up. If the sleeve is too loose, most likely the arm circumference has reduced or the sleeve is worn.

17. Warning: If you notice a rash, blistering, redness, increase of temperature or fever, see your physician immediately. An inflammation or infection in the affected arm could be the beginning of lymphedema or a worsening of lymphedema.

18. Maintain your ideal body weight through a well-balanced, low sodium, high-fiber diet. Avoid smoking and alcoholic beverages. Lymphedema is a high protein edema, but eating too little protein will not reduce the protein element in the lymph fluid; rather this will weaken the connective tissue and worsen the condition. The diet should contain protein that is easily digested, such as chicken and fish.


Responses

  1. Dear Pat,
    Thank you and God bless you for this information. I too was born with lymphedma-It was first discovered when I was about 6. I couldn’t put my shoe on for school. I’m now 46 and I’m pretty healthy, except for this darn lymphedma. I’m currently in pain now! But things could be worse.
    Thank you again for this information.
    Vanessa P.

  2. Hi,
    My sister has been diagnosed with lymphedema in her left leg and she has been carrying it by birth. We live in Pakistan and we do not have any lyphodema centres in here. Some one told me that there is a very good treatment in india so we are in process of applying for visas and stuff…….so can you please guide me what should we do about it. Apparently her leg is not that big, i mean there is a difference but a slight difference but its growing now.

    waiting for email

  3. Dr. Stanley Rockson has a treatment that may well cure lymphoedema, with a growth factor of VEGF-C to regenerate missing or damaged lymphatic systems. http://www.youtube.com/watch?v=2DSrEyCFNPc

  4. My son has this condition. He is only six. I can’t believe there is no cure. He has been going to the hospital and getting manual lymphatic drainage. It is hard to think of him in compression stockings for the rest of his days. There must be someone who has been cured of this … i am willing to try new treatments. please contact me at catherinejbarr@campus.ie if you think you can help.

    • Hi Catherine – Just wanted you to know that we do have a children’s group: Children with Lymphedema http://health.groups.yahoo.com/group/childrenwithlymphedema/ – we have over 500 families there. It is a great group for support and information. I really don’t want to approve your message though as I am afraid you might be bombarded with phony so-called cures. Come and join us in the childrens group though. Pat O’Connor

  5. Hello
    My name is Richard and I have this ungodly condition, along with my 2 brothers. Gary, my younger brother was cursed at the age of 13.He is no longer with us. He passed away at the age of 43 Christmas eve 2011.God
    rest his soul. James my older brother got his in his early 20,s. He is now 49.
    And everybody thought it was going to skip me, but guess what, not so lucky.
    I’ve had it for 6 years now, and I’m 48.
    What I hate most about this is the way people look at you. I guess it’s normal
    when people see 4 gross looking log legs limping by they cant help themselves.
    Hopefully a cure will be discovered and I can go back to work so I can support
    my family without what very little I receive from disability.
    God bless to everyone who has this HATED condition.


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