Recent Posts
Topic: Project Patty
Project Patty!!!!
Original Post by Loraine May at 9:11 AM EST on 02/23/2006
Byesville, OH - RNY (05/06/2005) - Dean J. Mikami, M.D.
I want to thank all of you who have requested my address to send clothes and personal care items for my dear friend Patty and her brother Leonard. They have no idea the suprises ahead of them. Since we had the holiday this week and mail is moving a little slow we are delaying the Ambush Makeover/Cleaning team move in until Next Saturday. We have more people available and this will give me more time to gather donations. I am working on a large wheelchair now, and some volunteers to make a ramp. I want her to be able to get out of the house and get some sunshine this summer and not be stuck in a hot apartment and have some fresh air..
Again, Thank you for the compassion you have shown for my friend and her brother. Your kindness will come back to you many times over.
Again we are in need of size 6 x Womens clothing and underwear, socks and personal grooming aids. ( baby wipes, facial cleansing clothes, deoderant, toothpaste etc)
And for Leonard Size 55 jeans, belts, Tighty whitey size 54, 3 x White t shirts, and 3 x shirts and socks.
Also Gently used bath towels, wash clothes, dish towels and rags.. If you have none of these items and still would like to help in some way I have a few ideas that can brighten her days. She LOVES country music. Especially Keith Urban, Conway Twitty, Rascal Flatts, Bluegrass and pretty much anything country. If you would have the ability to burn cd's that would be a great idea.. And she loves to read, so any leftover magazines, paperback novels etc would be wonderful. Cards of encouragement are most welcome as well. I would love to be able to hand her a stack of cards from people all over the country that let her know that there is a whole community of people who have been where she is, and we are here to help. If anyone is interested in being a pen pal with her please indicate that as well. I am just trying to think of any way possible that everyone can help in some small way to remind her that she is important and that there is a real world outside the living room..
I Love you all and thank you so very much for all the kindness you have shown to my dear sweet Patty. I have seen her several times this week and I am about ready to burst trying to keep this Big Secret and not spill the beans.
Thank you again,
Hugs from Laura in Ohio
Contact me for mailing address for clothing etc..
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Topic: What is Lymphedema?
WHAT IS LYMPHEDEMA?
THE LYMPH SYSTEM
The lymph system is one of your bodies circulatory systems. It is composed of lymph vessels, lymph nodes and organs such as the bone marrow, spleen, thymus and is also believed to include tonsils. Is function includes the absorption and elimination of excess fluids, it assists in the absorption of fat and very important is critical to our bodies ability to fight infections and is critical in the immune system functions. When this system is not formed correctly, is damaged through injury or infection or is removed (nodes) then lymphedema is a very real possibility.
LYMPHEDEMA
As mentioned previously lymphedema is a condition that occurs from a damaged or dysfunctional lymphatic system. There are two different types of lymphedema.
PRIMARY LYMPHEDEMA
PRIMARY LYMPHEDEMA can be hereditary. Milroy's Disease or Syndrome will generally express itself at birth or in the very early years. Meige Lymphedema, also known as lymphedema praecox generally begins sometime during puberty. The actual gene that causes hereditary lymphedema has finally been identified and there is now even research beginning that will hopefully lead to prevention and even cures. Lymphedema tarda generally begins later on in life.
SECONDARY LYMPHEDEMA
SECONDARY LYMPHEDEMA is generally cause by an obstruction to or injury to the lymph system that leads to an interruption of the normal lymphatic flow.
In the industrialized world the number one cause of secondary lymphedema is the removal of lymph nodes in cancer biopsies. This is a tragedy in my opinion as today it can be prevented. With the advent of PET/CAT and other scans and especially with small needle biopsies and flow cytometry there is no reason for this type of lymphedema to continue.
Any node removal for any type of cancer puts an individual at great risk of developinf secondary lymphedema. Of the cancer patients that form the largest segment of the secondary lymphedema group, breast cancer patients develop it the most frequently. It can also becaused by radiation in cancer treatment.
This type of lymphedema can also be caused by insect bites and infections. In the tropical climates the most common cause of secondary lymphedma is infection from filarial worms. Generally, resulting from mosquito bites. This parasite then grows eventually blocking and destroying the lymphatic system.
THE LYMPH SYSTEM
The diagram to the below shows the lymphatic system and related organs. (Cancer Research UK)
See this link for the diagram:
http://ourworld.cs.com/AmyLHWilliams/Lymphedema/lymphatic.bmp
Also an article my therapist did and I did. Must have adobe reader to view.
http://www.amylhwilliams.com/lymphedemaOH.pdf
Topic: TREATMENTS- Pumps/Diuretics
Information is courtesy of:
Lymphedema People
http://www.lymphedemapeople.com
Lymphedema Treatment - Compression Pumps - Lasers - Diuretics
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Compression pumps were at one time a standard of treatment for lymphedema.
Due to complications and possible further damage to existing lymphatics, many are no longer in favor of using them.
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Extremity Pumps for the Treatment of Peripheral Lymphedema
Report - Clinical Study
Alberta Heritage for Medical Research
http://www.ahfmr.ab.ca/hta/hta-publications/technotes/tn25.pdf
............................................
Compression Pumps: Frequently Asked Questions
http://www.lymphedemapumps.com/FrequentlyAskedPump.htm
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The Role of Pneumatic Compression Pumps:
preliminary results from a current study
http://www.healthquest-nf.com/CompressonPumpsInfo.htm
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Compression Therapy with Bandages and Elastic Compression Garments
http://www.nortonschool.com/pages/compressiontherapy.html
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CONSERVATIVE THERAPY FOR VENOUS DISEASE
Helane S. Fronek, MD, FACP
http://www.phlebology.org/topics.htm
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Laser May Reduce Arm Swelling After Mastectomy
NEW YORK (Reuters Health) - The zap of a low-level laser seems to
relieve some cases of chronic swelling in the arm that often occurs
after a mastectomy, new research suggests
In a study, swelling diminished significantly in nearly a third of
women *****ceived laser treatment for the condition, known as
lymphedema. "It's not a quick fix, but it does seem to help in some
people and is not invasive," Dr. Colin J. Carati, the study's lead
author, told Reuters Health"Lymphedema is a chronic and progressive
condition for which there are few effective treatment options,"
explained Carati, who is at Flinders University in Adelaide,
Australia.
Low-level laser treatment has proved effective in improving wound
healing and scarring, "so we decided to give it a try in
lymphedema," he explained.
In the trial, 61 women who had had a mastectomy were randomly
assigned to receive one or two cycles of laser therapy or a sham
therapy using a disabled laser.
Laser therapy did not have an immediate effect on symptoms, but 2 to
3 months later, women who had undergone two cycles of laser therapy
were more likely to have experienced improvements than women given
the sham treatment, the researchers report in the journal Cancer.
Swelling was reduced in about 31 percent of women in the laser
group.
Women who had undergone two cycles of laser therapy also had softer
skin on their upper arm than women treated with the disabled laser.
Hardening of the skin is an effect of lymphedema.
Despite the reduction in swelling, laser therapy did not seem to
improve the range of movement in the arm, according to the report.
Also, there was no significant difference between the groups in
quality of life and the ability to perform daily activities.
Exactly how low-level lasers may relieve lymphedema remains a
mystery, according to Carati. One possibility, he said, is that the
laser has an effect at a cellular level, "possibly encouraging cells
to work harder."
According to the Australian researcher, lasers are rarely used to
treat lymphedema outside of Australia. The treatment is under
consideration by the U.S. Food and Drug and Administration, however,
he said.
The study was funded by an Australian government grant to Flinders
University and RIAN Corporation, which makes the laser used in the
study.
SOURCE: Cancer, September 15, 2003
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DIURETICS AND LYMPHEDEMA TREATMENT
Modern Concepts in Identifying and Treating Lymphedema
Healthtronix Lymphedema Conference, March 2000
First, I want to thank all the doctors, therapists and patients who attended the Healthtronix Lymphedema conference in Dallas. There were many good discussions and I enjoyed meeting our friends from across the country again. The conference was recorded on Video tape and we hope copies of this tape will be available soon. Healthtronix did an outstanding job of putting together this important event.
During the course of the meeting I had the opportunity to ask the therapists and patients about their feelings about lymphedema and what advice they would give other patients. Several comment**** home and resulted in a very interesting exchange of thoughts and ideas. I have put some of those comments on our website. Consider them, agree or disagree and respond if you like. The results will be presented in our next eNews.
One of the questions that came up at the meeting is whether diuretics should be used in the treatment of lymphedema. In my opinion, the answer is usually no. There are some exceptions and I will explain.
Diuretics are one of the best treatments for patients suffering from edema of the legs due to congestive heart failure. When the right side of the heart does not work efficiently, the pressure in the venous system increases and this, in turn, results in increased pressure in the tissues and edema results. The edema is not from the lymphatic system and is not lymphedema.
Diuretics, such as lasix, cause the kidney to eliminate water from the blood. This in turn reduces the pressure in the venous system and allows the edema to drain into the venous system. Unfortunately, when someone drinks additional water the fluid and edema returns and so many patients require fluid and salt restriction to have the best results. Diuretics must be given regularly to eliminate as much water from the blood system as possible and control the edema. In some case, even when high doses of diuretics are given, the edema cannot be controlled by drugs alone and compression garments can be of additional benefit for these patients. The lymphatic system can be completely normal and patients will still develop edema due to congestive heart failure.
The lymphatic system drains through the lymph nodes and lymphedema generally arises due to an obstruction in the lymphatic system. This can occur due to surgery, radiation or trauma. Decreasing the pressure in the venous system by removing water from the venous system does not help reduce lymphedema. In fact, patients with normal cardiac function do not have excess tissue edema. As a result, fluid removed by diuretics must be replaced by oral intake to maintain a normal fluid balance and any reduction in fluid due to diuretics in normal people is temporary. Diuretics have no value for the treatment of lymphedema in patients who do not have edema due to congestive heart failure or other similar conditions.
A patient could have a mixed condition where lymphedema is complicated by edema due to congestive heart failure. These patients may benefit from treatment with diuretics because of the mixed condition. Check with your doctor to see if you have some component of edema.
Dr. Mortimer addressed this question in a recent publication in Angiology 48:87-91, 1997. He said,
"Lymphedema, regardless of etiology, is essentially incurable but different therapy approaches exist which serve to contain swelling. The objectives of treatment are to reduce swelling, restore shape, and prevent inflammatory episodes, eg, recurrent cellulitis. There are essentially three main approaches to lymphedema treatment: physical therapy, drug therapy, and surgery. Any edema arises from an imbalance between capillary filtration and lymph drainage. The principle of physical therapy is to a) reduce excessive capillary filtration and b) improve drainage of interstitial fluid and macromolecules from congested regions to normally draining lymph node sites. This is achieved through a combination of compression, exercise, and if possible, massage. Control of recurrent inflammatory episodes can only be achieved through diabetic type skin care, a reduction in swelling, and if necessary, prophylactic antibiotics. Drug therapy comprises diuretics or the coumarin/flavonoid group of drugs. The use of diuretics for pure lymphedema is physiologically unsound but may be of use in edema of mixed origin and in palliative (cancer) cir****tances."
Sincerely,
Tony Reid MD Ph.D.
http://www.lymphedema.com/mar00.htm
Topic: LE TREATMENT OPTIONS
Information is courtesy of:
Lymphedema People
http://www.lymphedemapeople.com
TREATMENT OPTIONS
In decades past there was very little that could be done about lymphedema. The most commonly used therapy in the 1960's was the compression machine. A boot or arm sleeve was placed over the affected limb and it was "squeezed" by use of air pressure. A patient was then fitted with a type of heavy strength hose or stocking. That treatment has largely gone out of favor for two reasons. First, it wasn't that effective and secondly more serious damage was done to good lymphatics by the continual pressure.
Another "treatment" was surgical. Debulking surgeries were performed and the fluid filled tissue was removed. Another surgery tried in the 1970s was called the Thompson's Procedure. After debulking, a flap of skin was sewn into the muscle supposedly to act as a "wick" to draw fluids into the deeper lymphatics. I had three of these 9 hours surgeries and they were not successful. So these surgeries have also gone by the wayside.
Much progress has been made in the last decade in treating lymphedema. Today a new therapy is being used called decongestive therapy.
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TWO BASIC TYPES OF THERAPY FOR LYMPHDEMA
Manual Lymphatic Drainage (MLD): is a unique, therapeutic method of stimulating the movement of fluids in the tissues. The gentle, rhythmic, pumping, massage movements follow the direction of lymph flow and produce rapid results.
Comprehensive Decongestive Therapy (CDT) is used primarily in the treatment of lymphedema and venous insufficiency edema. It is a combination of MLD, bandaging exercises and skin care. CDT may also involve breathing exercises, compressive garments and dietary measures. A frequent indication for CDT is lymphedema caused by irradiation or surgery due to cancer. It can relieve edema, fibrosis and the accompanying pain and discomfort
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TREATMENT FOR LYMPHEDEMA
Complex Decongestive Physiotherapy, (CDP) or Complete Decongestive Therapy (CDT)
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How Can Lymphedema Be Treated?
http://www.lymphoedema.org.au/treatmnt.htm
----------------
Complex Decongestive Therapy (CDT)
http://www.uklymph.com/tr_complex_decongestive_therapy.php
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Complex Decongestive Physiotherapy
http://physicaltherapy.about.com/library/weekly/aa093001b.htm
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Manual Lymphatic Drainage
This treatment is a gentle light touch massage. This prevents damage to the tissues. It promotes lymph flow through the collateral (superficial) lymph vessels to channel the lymph into the abdominal area ( the "watershed") and into normal functioning lymphatic vessels and nodes. These collateral lymph vessels are usually working normally and the problem lies in the deeper vessels which were damaged and scarred.
Bandaging
The therapist places compression bandaging around the limb. Often foam chip pads are placed under the bandaging to increase pressure on fibrotic area to break down scar tissue. These bandages stay on 24 hours a day throughout the treatment period. They come off only to shower, do skin care, assess the swelling reduction and to do the MLD.
Skin Care
Use a soap with a low pH., unscented and not antibacterial soaps. A good liquid soap is Cetaphil. The skin must be moisturized after bathing. Use a lotion like Eucerin or Nivea. If there are any irritations use an antibacterial cream. Always dry the area very well,and gently, after washing.
Exercises
An individualized exercise program will be given by the therapist to each patient. They will improve muscular contractions and joint mobility.There will also be strengthening exercises for the limb that will reduce muscle atrophy. Muscular contractions along with the low-stretch bandages provide constant counter pressure to keep the lymph fluid moving.
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MANUAL LYMPHATIC DRAINAGE
Dr Vodder's Manual Lymphatic Drainage (MLD) is an advanced therapy in which the practitioner uses a range of specialised and gentle rhythmic pumping techniques to move the skin in the direction of lymph flow.
This stimulates the lymphatic vessels which carry substances vital to the defence of the body and removes waste products.
The first visit will include a consultation and the therapist will outline the number and frequency of sessions. Each session will last approximately one hour.
Where appropriate the therapist will work in conjunction with your medical practitioner.
The History Of Manual Lymphatic Drainage [MLD]
During the early 1930's Dr Emil Vodder created a unique range of movements which brought relief from chronic conditions such as sinus congestion and catarrh.
Since Vodder's pioneering work, Manual Lymphatic Drainage has spread world-wide and has become a popular treatment in many European hospitals and clinics.
MLD is now beginning to gain acceptance in the U.K. as a component in the treatment and control of lymphoedema.
The Benefits Of Manual Lymphatic Drainage
Manual Lymphatic Drainage:
is both preventative and remedial and can enhance your well-being
is deeply relaxing
promotes the healing of fractures, torn ligaments, sprains and lessens the pain
can improve many chronic conditions: sinusitis, rheumatoid arthritis,scleroderma, acne and other skin conditions.
may strengthen the immune system
relieves fluid congestion: swollen ankles, tired puffy eyes and swollen legs due to pregnancy
is an effective component of the treatment and control of lymphoedema and assists in conditions arising from venous insufficiency
promotes healing of wounds and burns and improves the appearance of old scars minimises or reduces stretch marks
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Links - Manual Lymphatic Drainage
-------------------------
Manual Lymphatic Drainage Therapy
http://www.mfbewley.org.uk/mld.htm
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Dr Vodder's Manual Lymphatic Drainage
http://www.summertownclinic.co.uk/therapies/mld.htm
--------------------------
Manual Lymphatic Drainage: The Benefits
http://www.summertownclinic.co.uk/therapies/mldben.htm
*******************************************************************
ARTICLE: Traditional Massage Therapy in the Treatment and Management of Lymphedema
http://www.massagetoday.com/archives/2002/06/03.html
Topic: RE: how do you know you have lymphedema
The testing that they have is very limited in actually telling if you do have Lymphedema. Usually you can be diagnosed without these tests. A good therapist can see if first hand if you have it or not.
Here's some info on some testing they can do, but keep in mind that some of these test can cause more damage to the Lymphs.
TESTING FOR LYMPHEDEMA - LYMPHATIC OBSTRUCTIONS
LYMPHOSCINTIGRAPHY
DEFINITION: A method used to identify the sentinel node (the first draining lymph node near a tumor). A radioactive substance that can be taken up by lymph nodes is injected at the site of the tumor, and a doctor follows the movement of this substance on a computer screen. Once the lymph nodes that have taken up the substance are identified, they can
LYMPHOSCINTIGRAPHY - The Procedure
Lymphatic mapping is the first of this three-part investigation. No anaesthetic is required for this component of the assessment. It is performed in the Department of Nuclear Medicine by the surgeon and a medical physicist. The procedure is carefully explained to the patient who then lies on the imaging table with the appropriate anatomical site exposed. The surgeon injects 0.4mll (20 megaBecquerels) of technetium (Tc 99) unfiltered sulfur colloid intradermally in to four quadrants (0.1ml each) around the melanoma scar.
The patient is then positioned under the scanner (Figure 1) and dynamic images obtained (Figure 2). This early phase dynamic scanning shows the lymphatic channels and the sentinel node(s) as they appear in sequence. This is carried out for 20 minutes. The patient is then asked to walk about in the hospital for approximately one hour.
A late phase scanning of the basin is done ninety minutes after the injection
INTRADERMAL BLUE DYE INJECTION
This is done on the operating table in theatre while the patient is under anaesthesia (if general anaesthesia is used) or before the local anaesthetic infiltration. Vital blue dye (0.1 ml) is injected in to each of four quadrants around the melanoma scar (Figure 4). The surgeon scrubs and gowns while the operation site is prepared, thus, allowing time for the dye to reach the sentinel lymph node via the afferent lymphatics. This process takes 10-20 minutes in the lower limb and up to 30 minutes in the upper limb.
www.snm.org/education/pq0103.html
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LYMPHANGIOGRAM
This test is a specialised X-ray of the lymph nodes. It is not done so often now that CT scans and MRI scans can be used to check lymph nodes. But it may sometimes be necessary. You are most likely to have this test if you are being investigated for non-Hodgkin's lymphoma or Hodgkin's disease.
You can have a lymphangiogram of the lymph nodes in any part of the body. The test is done in the hospital X-ray department. It takes about 2-3 hours. It is not painful, but can be uncomfortable and tiring.
To show up the lymph nodes on the X-ray, a dye must be injected into the lymph vessels. This is usually done in the skin of the feet. A local anaesthetic is injected first and then the dye. The dye travels through the lymphatic system and into the lymph nodes. Once the dye is in the lymph nodes, X-rays are taken. Any lymph nodes that contain cancer will show up as enlarged on the X-ray.
You may be asked to stay lying down for an hour or two after the test. You will probably be able to go home the same day.
You may have one or two side effects from the lymphangiogram. Your
Skin may look a slightly blue or green colour
Urine may look slightly blue or green
These side effects are nothing to worry about and will disappear within 48 hours.
The results
It can take time for test results to come through. How long will depend on why you are having the scan. Usually, the scan is examined by a specialist in radiography and a report typed up. The report is then sent to your specialist, who will then give the results to you.
http://www.cancerhelp.org.uk/help/default.asp?page=3951
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Lymphangiogram
Medical Encyclopedia
http://www.nlm.nih.gov/medlineplus/ency/imagepages/9605.htm br /
...........................................................
Lymphangiogram, Lymphangiography, Lymphography
http://www.1uphealth.com/health/lymphangiogram_info.html
...........................................................
The Diagnosis and Treatment of Peripheral Lymphedema
http://scienceed.arizona.edu/ISL/1995consensus.pdf
...........................................................
Diagnosis of an early (latent) stage of secondary lymphedema of the arm - a necessary condition for its successful treatment
http://www.mucos.cz/eng/onko/dessla_e.html
...........................................................
Radiological Assesment of Lymphedema
Joint Program in Nuclear Medicine
Lymphedema
Jac D. Scheiner, MD
Annick Van den Abbeele, MD
February 21, 1996
http://brighamrad.harvard.edu/Cases/jpnm/hcache/1065/full.html
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Lymphedema Diagnostic Aids
http://www.venous-info.com/handbook/hbk20d.html
Lymphedema: evaluation of qualitative and quantitative lymphoscintigraphy in 238 patients
Abstract
H Weissleder and R Weissleder
Department of Radiology, Kreiskrankenhaus Emmendingen, Federal Republic of Germany
http://radiology.rsnajnls.org/cgi/content/abstract/167/3/729
Ultrasound
One potentially fatal complication of lymphedema, particularly late stage lymphedema is thrombosis (blood clot). Ultrasounds provide a quick, safe and noninvasive reading of the overall blood flow in the affected lymphedema limb.
If an ultrasound show circulatory problems, thn your doctor may initiate further testing to find specifically where the problem is and how serious it might be.
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Venogram
A venogram is a procedure that looks at your blood vessels (veins) by injecting x-ray dye and taking x-rays.
http://www.cirarad.com/ptinfo/venogram.htm
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Venogram
http://www.heartcenteronline.com/healthyliving/profile/index.cfm?fuseaction=firstpage&hcoref=pu
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Other radiological tests can be utilized also to determine soft tissue problems and vascular blockages.
.............
How MRI Works
by Todd A. Gould, RT-(R)(MR)(ARRT)
http://www.debakeydepartmentofsurgery.org/home/content.cfm?proc_name=Venogram&content_id=272
...............................
Introduction to MRI
http://www.mritutor.org/mritutor/
...............................
MRI GLOSSARY
http://fonar.com/glossary.htm
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CAT Scans
http://www.colorado.edu/physics/2000/tomography/
...............................
How CAT Scans Work
by Tom Harris
http://science.howstuffworks.com/cat-scan.htm
...............................
Computerized Axial Tomography
(CAT Scan/CT Scan)
http://www.medicinenet.com/CAT_Scan/article.htm
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What is a PET Scan?
http://www.falange.demon.co.uk/explain-petscan.htm
..........................
PET - Positron Emission Tomography
http://www.nationalpetscan.com/petref.htm
..........................
PET Scanning
bodyscan.md
http://www.bodyscan.md/pet_scanning.html
Topic: RE: Surgical Lymphedema Treatment Options
Yeah the weight really does complicate it very much. I know with the weight loss mine had very much improved. I know for me if mine had got any worse I would have had to have done some type of surgery on my legs even before the weight loss surgery. Now I have all this skin and I'm very scared to have anything done for fear it will get aggrivated again. That's the last thing I want. It would be nice to have a surgeon like hisself doing it, I'd feel more comfortable.
Amy
Topic: RE: Surgical Lymphedema Treatment Options
Wow Amy! I read the article you recommended and now I'm even more unhappy about this stupid condition. So after having this 10 years, we have a 10% chance of getting an aggressive cancerr from it? What do you think of the surgery he talked about? The excisional procedure? Also, I am really hoping that WLS will reduce my problem. How has your lymphedema improved after surgery/weight loss? I know lymphedema is not because of my weight...I had a mastectomy and radiation after cancer in 2002/2003 which caused this, but I know that my weight complicates it and aggravates it.
Topic: how do you know you have lymphedema
My legs have been swelling a lot the last two months, I have had swelling problems off and on for years. but usually once I go to bed the next morning they are fine. So if they swelled I learned to stay off of them for awhile. but this is different. going to bed has not been much help and when I recline they hurt to lay on the recliner. they lleave big dents in the lower part of my leg and that takes a while to go away. I also have this habit of wrapping my leg around a table chair and I have noticed that this has been hurting and leaving dents also. At the same time my legs feel hard. Is that lymphedema and what should I do about it. This is a small area and I am sure we have no treatment here. my doctor gives me water pills but they havent been helping.I am also going to have wls in a month or two will that make a difference.