Posted by: patoconnor | January 9, 2013

why don’t I post?

Why don’t I post anymore????

Duhhhhhh………………

I have received emails from wordpress saying my blogs are suspended due to lack of activity.

Why did I stop being active?   Duhhhhhhhh…….wordpress

They stole a blog, shut it down and took all that hard work, research and information from me…without every saying why.  I have absolutely no idea what I did that was so horrible that it necessitated them taking such a draconian action.

I will watch over this site, but why would I want to continue working my back side off when WordPress can come along and simply wipe it out and/or steal it from me.

 

 

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.

Posted by: patoconnor | March 1, 2012

Neu-Laxova syndrome: a prenatal diagnosis.

Neu-Laxova syndrome: a prenatal diagnosis.

Source

Division of Maternal Fetal Medicine, Department of Obstetrics and Gynecology, University of Mississippi Medical Center, Jackson. 39216, USA.

Abstract

Neu-Laxova syndrome is a rare autosomal recessive congenital disorder. Prenatal diagnosis is possible via second trimester ultrasonography. Characteristic ultrasound findings include hydramnios, severe intrauterine growth restriction, craniofacial and CNS anomalies, limb contractures, skin lymphedema, skin restrictions, and akinesia. Fewer than 70 cases have been reported, and no survival beyond six months of age is known with most neonatal deaths occurring within the first few days of life. Overall, this is a lethal condition after birth secondary to severe lung hypoplasia and brain anomalies. Herein we report a recent case from our institution with prenatal diagnosis.

PubMed

For additional information relating to Neu-Laxova Syndrome and Lymphedema

Posted by: patoconnor | March 1, 2012

Multidisciplinary Lymphedema Treatment Program.

Multidisciplinary Lymphedema Treatment Program.

Feb 2012

Papadopoulou MCTsiouri ISalta-Stankova RDrakou ARousas NRoussaki-Schulze AVGiannoukas AD.

Source

University Hospital of Larissa, Larissa, Greece.

Abstract

Lymphedema is an underrecognized and undertreated condition that requires a multidisciplinary approach in an individualized program that will address the special needs of each patient. In an ideal setting of an outpatient management program the team should be composed of a vascular surgeon, a dermatologist, a physiotherapist, a dietician, a psychologist, a social worker, and an office employee, working together in the assessment and management of all aspects of lymphedema. All treatment strategies and actions taken should ultimately focus on the improvement of the quality of life of patients suffering from lymphedema and on the prevention of lymphedema in high-risk patients.

Lower Extremity Wounds

Posted by: patoconnor | February 25, 2012

Management of limb lymphedema

Management of limb lymphedema.

Jan 2012

[Article in French]

Source

Unité de lymphologie, centre national de référence des maladies vasculaires rares, hôpital Cognacq-Jay, 15, rue Eugène-Millon, 75015 Paris, France.

Abstract

Lymphedema results from impaired lymphatic transport with increased limb volume. Cellulitis is the main complication, but psychological or functional discomfort may occur throughout the course of lymphedema. Lymphedema management is based on complete decongestive physiotherapy (multilayer low stretch bandage, manual lymph drainage, skin care, exercises). First phase of treatment leads to a reduction of lymphedema volume. The second phase stabilizes the volume and is based on elastic compression. Resection surgery is a useful tool in external genitalia lymphedema.

A case of an end-of-life cancer patient in which lymphedema care improved the QOL enabling home hospice care.

2011

[Article in Japanese]

Source

The Palliative Care Units, Sanshu Hospital.

Abstract

Recently, the importance of prevention and care of lymphedema has been recognized. It appears that the complex physical therapy is relatively taboo for an end-of-life cancer patient with lymphedema. Therefore, an intervention of care is often difficult. In our case, the patient strongly desired a hospice care at home, so we introduced a home hospice care gradually taking a step by step approach with anticipated harmful symptoms. As a result, the home hospice care was doable with ADL and QOL improvements. For lymphedema care of an end-of-life cancer patient, a goal setting, sharing the patient’s will based on anticipated symptoms, and an introduction of a gradual care were all important.

Pier Online

Posted by: patoconnor | February 18, 2012

Cutaneous lymphatics and chronic lymphedema of the head and neck.

Cutaneous lymphatics and chronic lymphedema of the head and neck.

Jan 2012

Source

Mayo Clinic College of Medicine, Mayo Clinic, Rochester, Minnesota, USA.

Abstract

Keywords:

  • solid facial edema;
  • acne rosacea;
  • Morbus Morbihan;
  • acne vulgaris;
  • lymphoscintigraphy

Extensive attention has been directed to lymphedema involving the extremities. However, there has been relatively limited study of the cutaneous lymphatics of the head and neck. In this review of head and neck lymphatics, we capsulize the history of the lymphatics, the anatomy of the cutaneous lymphatics, lymphatic function and physiology, and imaging modalities used to define this intricate vascular system. To appreciate the clinical challenges associated with head and neck lymphatic dysfunction, we also provide an overview of disease processes of the cutaneous lymphatics and their treatment, theories on the etiology of lymphedema, and future directions to better understand lymphatic function and disease. Knowledge of the cutaneous lymphatics of the head and neck are critical to the clinical evaluation of patients, who present with this debilitating condition and to our understanding of its pathogenesis and appropriate management.

Wiley Online

A case of an end-of-life cancer patient in which lymphedema care improved the QOL enabling home hospice care].

Dec 2011

[Article in Japanese]

Source

The Palliative Care Units, Sanshu Hospital.

Abstract

Recently, the importance of prevention and care of lymphedema has been recognized. It appears that the complex physical therapy is relatively taboo for an end-of-life cancer patient with lymphedema. Therefore, an intervention of care is often difficult. In our case, the patient strongly desired a hospice care at home, so we introduced a home hospice care gradually taking a step by step approach with anticipated harmful symptoms. As a result, the home hospice care was doable with ADL and QOL improvements. For lymphedema care of an end-of-life cancer patient, a goal setting, sharing the patient’s will based on anticipated symptoms, and an introduction of a gradual care were all important.

PubMed

Posted by: patoconnor | February 13, 2012

Lymphedema Family Study – the financial crises

Family members, last Fall, in my Yahoo online support groups I wrote a post about the desperate financial situation of the Lymphedema Family Study at the University of Pittsburg and I wanted to share it here as well.

When I got active online back in 2003, there was only one confirmed gene – VEGFC
and one suspected FOXC2.

Now with the one I shared about yesterday, there are eight. With many more
being extremely close to being found.

Now, it appears d-day is looming closer.

I received this note yesterday from the director, Dr. Finegold.

We always complain about the medical world not caring, and I wish I could convey  Dr. Finegold’s dedication in this post. You’ll never find anyone more committed to the lymphedema world then he is.

This is our chance to stand up and be counted – and – to show that we believe
our lives to be worth being cured. If there is anything, anything you can do,
please follow the link to the study and help.

Lymphedema Family Study

or

http://www.hgen.pitt.edu/projects/lymph/

Here is an excerpt from his note:

“I’m in a situation where I need to reach out to people in the lymphedema
community.

I believe we have identified an opportunity to significantly affect
wound healing by stimulating lymphogenesis in preparations of adipocyte
stem cells or a mesenchymal stromal fraction prepared from adipocytes.
I believe this may also possibly be an avenue to the effective treatment of
lymphedema.

At this point in time, we don’t have sufficient funding to do the
experiments for proof of principle. I need to identify a commercial or
foundation entity who might be willing to seed us for six months or so
to solidify our preliminary data.”

Best

Dr. Finegold

Posted by: patoconnor | February 13, 2012

The Genetics of Lymphedema

When I originally became active in online groups, blogs and websites, there were only two genes identified as being involved with causing hereditary lymphedema.

Now, eight specific genes have been identified as causing several  hereditary lymphedema syndromes and associated syndromes with lymphatic malformations.

At our main website Lymphedema People, we have complete information pages on each one:

Lymphedema Gene CCBE1

Lymphedema Gene FLT4

Lymphedema Gene FOXC2

Lymphedema Gene GATA2

Lymphedema Gene GJC2

Lymphedema Gene KIF11

Lymphedema Gene SOX18

Lymphedema Gene VEGFC

also:

Hereditary Lymphedema

Lymphedema Genetics

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