Gabrielle Boyce
Aboriginal Health
Palliative Care
An Approach to Pain Management in Palliative Care
Common Problems with Morphine Use
Dressings for Malignant Wounds
Lymphoedema - Palliative Physiotherapy
Antidepressants in Palliative Care
Bowel Obstruction in Palliative Care
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Quality of life
Physiotherapy in palliative care is orientated to achieve the optimum quality of life as perceived by the patient. It aims to facilitate the patientís ability to function with safety and independence in the face of diminishing resources. Traditional physiotherapy treatments need to be modified to accommodate the changing needs of the patient.Lymphoedema occurs when the lymphatic system is damaged or blocked. Protein continues to enter the tissues from the blood capillaries in the normal way and a build up occurs in the tissues the lymphatics should be draining. The accumulation of protein in the tissues causes excess fluid to enter them and the tissues to swell. The swelling decreases the oxygenation of the tissues, interferes with their normal functioning and makes them heal at a slower rate than normal.
Complex Physical Therapy
A special physiotherapy treatment known as ëcomplex physical therapyí or CPT can assist palliative care patients suffering from Lymphoedema.- CPT involves four aspects:
- skin care,
- special massage,
- compression bandaging and later intreatment fitted garments,
- special exercises to complement the massage.
It is therefore implicit to have a good knowledge of the principles involved in CPT, from anatomical and physiological aspects of the lymphatic system through to its practical application in massage of the patient.
Massage
The massage is based on the concept of emptying the central regions first to give the lymph from the periphery somewhere to go. Correct massage causes the collateral lymphatics in the superficial lymphatic networks to become larger and carry more lymph over to normally draining areas or lymphotomes. Part of the idea of the massage is to gently force lymph across ëlymphatic watershedsí (lines dividing lymphotomes that drain in different directions). This dilates the collateral vessels and allows an alternative drainage path to the deeper collectors of a normal region. The other aspect of the massage moves tissue fluid into the initial and collecting lymphatics and through its lymph nodes.Often the optimum drainage pathways in the palliative care patient are blocked by hard fibrous regions, ulcers, pressure sores, radiation burns, metastases, scar tissue etc. So again a practical understanding of the lymphatic system is important to modify treatment and choose an effective pathway for clearance.
Compression bandages
To maintain reductions achieved through massage, special low elastic compression bandages are used as part of the treatment for lymphoedema. A feature of lymphoedema is a loss of elastic fibres from the tissues, and the low stretch bandages cause a mild increase in the total tissue pressure.The compression bandages reduce the hydrostatic pressure gradient from the blood to the tissues and increase that along the lymphatic trunks. They also increase the gradient from the tissues to the initial lymphatics.
The bandaging techniques also have to be modified in the palliative care and elderly patient - and for comfort the compression is of a lower grade.
Special exercises
Special exercises tailored to the individual patient are used to complement the massage. They increase uptake by the initial lymphatics, cause the collecting lymphatics to pump better, mobilise the joints and help combat muscle atrophy from the lymphoedemaPatient education
It is important to teach patients with a lymphoedematous limb how to prevent their limb from becoming worse. :- They should be instructed
- not to ignore a slight increase in size or ache in/or adjacent to the area;
- always keep the affected limb spotlessly clean; ëavoidí trauma (knocks, cuts, sunburn, insect bites, and be careful cutting nails);
- notify doctor immediately if any redness or infection occurs as this should be treated at once with antibiotics. Tinea should also be treated with anti-fungal powders;
- not to carry heavy loads on the lymphoedematous arm; do not have blood pressure taken, injections or IV therapy on the lymphoedematous limb;
- when travelling by air a compression sleeve/stocking must be used; loose clothing/underwear should be worn so the few remaining lymphatics donít get blocked;
- do no over-exercise - ie. donít make the limb ache with tiredness, or overheat; keep the skin supple and moist. Hamilton skin care products are good to use.
Summary
Lymphoedema is a chronic condition caused by a blockage of lymph flow. It can result from removal of lymph nodes as part of the surgery for cancer. Often radiotherapy is a necessary component of treatment, but its use may block the remaining nodes with fibrous tissue.Lymphoedema may also occur as a result of other primary diseases. However, it is usually considered a condition of the arm or leg - with the most commonly recognised form being the swollen arm that may occur following breast surgery. CPT can be of great help in the relief of pain by the reduction of lymphoedema and inflammation in the palliative patient, and help to make them comfortable, mobile and self-sufficient.
Gabrielle Boyce
Physiotherapist
St.Vincentís Hospital
References:
Judith R. & John R. Casely-Smith. Modern Treatment of Lymphoedema, 1994. The Henry Thomas Laboratory University of Adelaide. pp 117, 130, 225. J.R. Casely-Smith. "Information about lymphoedema for patients", 1995, The L.A.A. pp 21.
Discussion
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lymphoedema ....ggrrr!! dmarie, dmarie_05@hotmail.com Posted 9/8/2001 4:22 AM I've never really been diagnosed with Milroys directly by a doctor because none of the doctors around where I live really know much about this. Though, I've been to a vascular surgeon, bone & joint doctor and a regular Dr. I'm 14 years old, and I've had the swelling since June of 1999 right after I started going through puberty. it is now august 2001. After WE ended up telling the doctor about this, he said he'd rather not put me on diarettics (sp?) because of my age, and we do not have a/c in our house because our windows aren't the right type for one or whatever... anyway... I read that through dieting and exercising, and massaging that it'll help with the swelling. Though this is definatly a pain in the butt. I really didn't think someone my age could have this, and it really sucks that this'll stay with me and others for the rest of my/our lives until (or if) there will be a cure. blah. |
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Coping with Milroys Wendy Jones, doublej27@hotmail.com Posted 5/6/2001 8:36 AM I am a 32 year old woman living with Milroys. Started at the age of 9. I have it in both legs. I have a Wright Luneur Pump at home. If anyone would like to talk with me about it i would love to hear from you Sometimes i feel like i'm the only one. Please feel free to email me. Wendy Jones, doublej27@hotmail.com Posted 5/6/2001 8:35 AM I am a 32 year old woman living with Milroys. Started at the age of 9. I have it in both legs. I have a Wright Luneur Pump at home. If anyone would like to talk with me about it i would love to hear from you Sometimes i feel like i'm the only one. Please feel free to email me. Wendy Jones, doublej27@hotmail.com Posted 5/6/2001 8:31 AM tonia, us52tw@yahoo.com Posted 12/7/2001 9:55 AM Hi, so glad I found this site. My nephew will be 3 years old July 12th. was diagnosed at birth with milroy disease. It mostly affects his left foot and leg, he has something like big knots under his skin. His little foot is so swollen his toes stick up. I have never heard of this, is there any cure, what should we do? Please help susan webber, susan@webber5069.freeserve.co.uk Posted 21/7/2001 4:27 AM I have Milroys - in both legs - since I was 17 it has gradually got worse - now I am 49 and every 3 months I get measured - I have gained yet another 1/2 litres. Any suggestions - is exercise of any use - what about dieting - any tips would be most helpful. Glad I am not alone with such a disease. Thank you to you all for being there. gemma shields, crazytart@blinddrunk.com Posted 20/7/2001 7:37 PM My boyfriend has suffered from milroys disease since birth he is now 20 and it has in the last few months become worse! he has been reffered to 4 doctors, specialists etc and is now being reffered to a cancer specialist! in others words they have no idea what to do and are just passing him round, can anyone advise me of any specialist in england for this disease? anyone i can write to or email!! are there any cures or even anything that will just take away the pain or swelling slightly? if i massage the leg for him it takes away the pain but not the swelling and i obviously cant be there to do that all the time?? can anyone tell me any websites, books, phone numbers anything at all?????? WE ARE DESPERATE thanx email me at crazytart@blinddrunk.com gemma shields, crazytart@blinddrunk.com Posted 20/7/2001 7:35 PM My boyfriend has suffered from milroys disease since birth he is now 20 and it has in the last few months become worse! he has been reffered to 4 doctors, specialists etc and is now being reffered to a cancer specialist! in others words they have no idea what to do and are just passing him round, can anyone advise me of any specialist in england for this disease? anyone i can write to or email!! are there any cures or even anything that will just take away the pain or swelling slightly? if i massage the leg for him it takes away the pain but not the swelling and i obviously cant be there to do that all the time?? can anyone tell me any websites, books, phone numbers anything at all?????? WE ARE DESPERATE thanx email me at crazytart@blinddrunk.com |
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Infant born with LE of feet Tammey, huppe1@hotmail.com Posted 13/1/2001 8:32 AM We have an 8 month old daughter that was born with LE of both feet. Have had an MRI of her vascular system and lymphatics. I would like to talk to any parents that have had a child born with this. Thanks |
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So Very frustrating Terri A. Egan, Eganta@webtv.net Posted 29/11/2000 7:41 AM I have swelling in both legs and also feel it in my abdomen at times. I have tried all types of dieting but to no avail. In 1994 I was diagnosed with Systemic Lupus. My legs are getting worse and worse and the doctors don't seem to know what to do. This summer they started to ooze when it was hot out. Just above my ankles the legs are becomming as I call 'petrified' They won't swell there. They do above and my feet swell, the lower leg is discolored. My primary physician is sending me to a vascular surgeon. My arteries and veins are both clear and functional as the tesing was done with ultrasound. What type of physician do we go to for the treatment of lymphoedema?? I had a very serious ruptured ectopic pregnancy when I was 21. I am now 47 and have been suffering with swollen feet and legs for years. Doctors just told me to elminate salt and diet..lose weight! I weighed 130 then and am now 205. Nothing seems to work and it is frustrating. My doctor said she doesn't know whoto send me to or what to do but has finally acknowleged that something is wrong and needs to be done1 elaine, jcrawley@home.com Posted 6/5/2001 4:04 PM has anyone found any diet to help with lymphadema. my lack of exercise is really a problem. I have found an excercise tape by Gunter Klose great for the lymphadema not the weight problem. Is anything working for anyone? Please share... thanks elaine |
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My Lifes History of living with Milroys Pat Jagodic, bronwynj@ozsky.net Posted 12/11/2000 9:25 PM I have compiled a history of my life with Milroys. This includes being diagnosed - Reduction Surgery - Removal of Lymph Glands - Treatments - Medication - Allergies - Pictures of my legs - Added Complication of Mossy Foot - Family History of Milroys - Trying to beat the smell - Doctors Indifference to my pain. This book is not published and was done only for my family. E-mail me and I will send you a free copy. Don't give up!!!!!! Patricia Jagodic, bronwynj@ozsky.net Posted 13/11/2000 8:14 PM I have compiled a history of my life with Milroys. This includes being diagnosed - Reduction Surgery - Removal of Lymph Glands - Treatments - Medication - Allergies - Pictures of my legs - Added complication of Mossy Foot - Family History of Milroys - Trying to beat the smell - Doctors indifference to my pain. This book is not published and was done only for my family. E-mail me and I will send you a free copy. Don't give up!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Kathleen Hendrix, khendrix@dcn.davis.ca.us Posted 9/12/2000 5:46 PM I am a registered nurse and have just cared for my first patient with Milroy's disease. This woman's legs were very edematous, with a terrible odor. The skin was very lumpy and covered with thick brown crusts. The internist who saw the patient gave her the diagnosis of Milroy's, but none of us were certain what kind of skin care to give this unfortunate patient. When these thick brown crusts were soaked with sterile water they softened and we were able to remove them, but I don't know if that simply leads to more oozing and more crusts. Any advise from the experts--you who are dealing with this disease? Thanks Kathleen Hendrix Brenda Douglas, Avanevery@sunvalley.net Posted 21/12/2000 6:14 AM I am 24 years old and have been diagnosed with Milroy's since birth. but had no symptoms until age 21 now my lower calf is 29 inches around and this is after 3 operations I would greatly appreicate any info or cure as to this problem because noe my 7 month also has been diagnosed I need despreately to cure this before she gets worse Sinserely Brenda Douglas Beatrice Dixon, dixon@bedfordave.screaming.net Posted 23/12/2000 11:10 AM I am amazed to find so many contributors to this site. I thought i had some extremely rare condition! A few thoughts on Milroys from my point of view. As far as I know , my Father was the first one in the family with this condition and it seems to have been passed on to his daughters only, or through his sons to their female children. When my father was in his 20's (around 1920ish) he had an operation in which a silk drainage channel was passed up the length of 1 affected leg to aid the lymph back to the glands in the groin. By the time he returned to hospital a few years later to have the other leg done, they refused on the grounds that it was 'too risky'(from the point of view of infection)and they refused to do it. The silk drainage worked perfectly until he died at 87. The other leg gave him endless grief. Other things I have discovered about the disease after having it for 50 years:- Does anyone else get these TERRIBLE leg infections? I have one now (first one for 12 year John Dayton, ajdayton1@prodigy.net Posted 5/2/2001 12:43 AM I was diagnosed with Milroys after a severe strep infection. NIH swore it was cancer at first, due to my high fever and swolen right leg.After several weeks and many tests, they found nothing but my infection that led to the Milroys. I was 14 at the time, now at 30 my leg is still swollen, it veries from day to day. I have the skin eruptions on most of my toes. My left leg has a few eruptions, but no swelling. My family doctor keeps sending me to dermatoligists and they can never seem to tell me anything. What kind of doctor should I be seeing for this? Any help would be great. carol, clshas@peoplepc.com Posted 14/3/2001 5:29 AM I was told my orthopedic dr. some years ago that I had Milroy's Disease. I had gone to him for a problem with my knee( cartilege tear) Since then (i am now 52) i have had to have my left knee replaced and injections in right knee. Also have had YEARS of problems with my weight. I can lose weight but doesn't seem to make a difference in my lower legs, ankles and forearms. I have read other people's stories about oozing fluids from your legs. I have not experienced that. I do have bad varicose veins and the humidity and heat of the summer make the swelling worse in my legs, arms and hands. I take a fuild reduction medication, lasix which makes me run to the bathroom all morning however, even with that and watching the salt intake, I still have days when my legs just ache and walking is painful with the burning pain sensation from all the swelling. I live in the suburbs of Philadelphia, PA. Does anyone know who and where any specialists are that treat Milroy's that I c Pat Jagodic, bronwynj@ozsky.net Posted 8/5/2001 7:07 PM MY NAME IS PAT JAGODIC. I HAVE COMPILED A LIFE HISTORY INTO A BOOK ON MILROYS. ALSO I NOW HAVE ALL OF THIS INFO ON A WEBPAGE CALLED www.globalpresence.com.au/milroys. PLEASE FEEL FREE TO OPEN IT AND LOOK AT ANY INFO THERE. YOUR FRIEND PAT. Pat Jagodic , bronwynj@ozsky.net Posted 13/5/2001 5:30 PM I now have my Lifes History of Living with Milroys on a webpage itis www.globalpresence.com.au/milroys. please feel free to look at it. yours Pat. Pat Jagodic , bronwynj@ozsky.net Posted 13/5/2001 5:30 PM I now have my Lifes History of Living with Milroys on a webpage itis www.globalpresence.com.au/milroys. please feel free to look at it. yours Pat. Pat Jagodic , bronwynj@ozsky.net Posted 13/5/2001 5:30 PM I now have my Lifes History of Living with Milroys on a webpage itis www.globalpresence.com.au/milroys. please feel free to look at it. yours Pat. |
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palliative care of lymphedema viantiana, viantiana@yahoo.com Posted 18/9/2000 1:35 PM I would like to learn about palliative care of lymphedema. I hope that you could send me them as soon as possible. Anyway, thank's for your cooperation. Best Regards, Christine Johnson, christine_2802@yahoo.com Posted 29/9/2000 10:11 PM In June this year I had the lymph glands in my grouin removed dur to Cancer of the Vulva. My right leg swells all the time and I have had it drained once. The fluid is now infected and I can't seem to get any sympathetic response from my oncologist (although with everything else he has been wonderful) can you please advise me when I can go for pysiotherapy. This is more distressing than the radical surgery I have been through. Thank you in anticipation. COLIN BEST, bestc@supanet.com Posted 30/10/2000 6:26 AM Just over two years ago i had a cancerous lymph gland removed from my armpit as a result of the spreading of a malignant melanoma two years prior to that.About 18 months ago i started to get the alarming swellings in my right arm and was informed as to wwhat it was.I was fitted with the usual compression garment but after a long flight to the USA it must have worsened the condition and was possibly bitten by something which developed into cellulitus.I have recently been going for physio complimented by the use of a Flow Pulse machine which compresses the arm at timed intervals.This is only because the swelling in my right hand will not go down. Excellent guidance from my consultant and nurses at the RVI in Newcastle England. Keep ever positive!! |
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High pressure oxygen chambers John, jrr@faxcess.com Posted 17/8/2000 5:18 AM Has anyone heard anything about the use of high pressure oxygen chambers in treatment. Same sort of chanber as divers use if they have the bends. Links, references please John |
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advanced lymphedema sharon, samikwest1@cs.com Posted 9/8/2000 7:34 AM my sister , vicki , is in the hospital , age 39 single mom. Very very ill , left leg is in danger and infected . oozing is smelly and pervasive medicare only, no other insurance. She is in broward county , Florida email me or call 877 546 5814 thank you and good fortune to all , sharon sharon, samikwest1@cs.com Posted 9/8/2000 7:26 AM my sister , vicki , is in the hospital , age 39 single mom. Very very ill , left leg is in danger and infected . oozing is smelly and pervasive medicare only, no other insurance. She is in broward county , Florida email me or call 877 546 5814 thank you and good fortune to all , sharon |
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congenital lymphedema Scottt Martin, rsmhoot@aol.com Posted 8/7/2000 3:49 AM My 1 year old has lymphedema. I'm concerned about his future. Is it possible to grow out of the condition? Will he have it forever? He has swelling in both arms (one more so than the other) and swelling in his cheeks. He also has swelling around the foreskin of his penis. I'm very concerened. |
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What's Up Doc????? John, JPINSC@aol.com Posted 7/3/00 6:02 PM Dear Dr, Thank you for having this site.. I am a 42 yom firefighter in ca usa. Two weeks ago I had a cyst removed....following that surgery, I experienced a bad infection of the affected leg lower leg....I have edema in both legs now....and I am hoping you can refer me to a specialist in ca usa...i live half way between los angeles and san diego....I would like to know if you think I can be back to normal and active again Lisa Sandburge, katetilly@juno.com Posted 11/7/2001 8:08 AM I have been dagnosed w/ lymphadema, it is isolated to my right foot, i have tryed compression bandages and diet but nothing seems to relieve the mass attached to my leg (foot inflamation.) I need to know what this is soon! There is no pain just huge amounts of swelling in my foot and its toes. |
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MILROYS Demelza Lewis, dl@saints.merula.co.uk Posted 8/9/99 12:45 PM I run a clinic within a school in east africa - malawi. I Have a student 17 years recently diagnosed as suffering from Milroys syndrome. Apparently it is genetical with onset around puberty in one limb. I can not find any other texts to explain this diagnosis or locate web info - can anyone tell me what Milroys is exactly??? Thanks. Wendy, wendyf@one.net.au Posted 15/2/00 11:33 PM I would like to find out more information about Milroy's disease. My Mother has had this disease since she was 25 and is now 85. Now my niece has just been diagnosed with the same condition. We can remember only one other member of the family with the same condition. This was an elderly aunt who died some time ago. Nancy , njclark55@rocketmail.com Posted 25/2/00 5:07 AM I am 49, was diagnosed with a mild version of Milroy's disease when I was 17. I started to notice symptoms at around the puberty generated growth spurt -age 13. What I have been told is that it is a recessive genetic condition for which there is no cure, just symptomatice relief of various sorts, since the lymphatic system (for me, in both my lags) is incomplete. I need airconditioning in hot (esp. humid) weather, regular exercise, and have great difficulty with any job which does not allow me to get up and move around. It is also exacerbated if I am missing sleep. At first the doctors put me on diarrhetics (sp?), but I found they helped little, just made me constantly in search of a bathroom. So, I have taken no medication for this in over 30 years. Was worse during pregnancy - especially the last trimester. Also, some medical types confused it with symptoms of toxemia. My doctor just monitored me more carefully for the latter since the shared symptoms could have masked this. Mostly the problem was severe swelling and discomfort - kept my feet up, tried to sleep well, etc. I do watch sodium intake. The worst is the numbers of times I have been to see doctors for something completely different and they see I have this and want to be educated by me - when I am sick! Very annoying. Anyway, hope this helps someone else. Nancy Nanciellen, Nanciellen@aol.com Posted 28/2/00 10:27 AM I have a friend who suffers from this syndrome. He is on a special lofat diet and uses a special type of oil. Would regular use of a sauna help at all? Has anyone had results from any special kind of diet or supplements. Thank you in advance and best wishes to all. Irma J. Fountain, IRMAJ@COUNSELLOR.COM Posted 29/4/00 3:42 AM njclark55@rocketmail.com Your posting, letter 2/25/00 regarding Milroys disease sound like I wrote it. It happens to me about every two years. It appears that the diauretics stop working for some reason. I have been suffering this time for about 3 months with no relief. I finally told the doctor no more pills. I feel so full all of the time that I don't even want to eat or have no appetite. As you say running to the bathroom all of the time. I am scheduled to go to the Lympoedema clinic for therapy in a week. Hopefully this this help. The NET has been very helpful in at least finding out what the problem is and that I am not alone, or imagining this. Thanks for your letter. Dee, deepeke@home.com Posted 2/5/00 5:35 AM My family has extensive Milroy's involvement: My grandmother seems to have been the first, my mother, one aunt, 2 uncles. In my generation - myself and 3 sisters, 6 cousins. One of my daughters, and one granddaughter. We all had it at birth and it was immediately identifiable. My mother went to Johns Hopkins Hospital in Baltimore in 1957 for research into Milroy's under the Moore Clinic, Dr. Victor McKusick. I was the first person to have surgery for it (complete removal of skin of the lower leg, and reattachment) in 1963. Denmark, rohde@iben.dk Posted 9/5/00 4:14 AM I have Milroys disease since birth. It took them some years with constantly hospitals visits before they found out (I think I was the first identified in Denmark). I grew up on a low fat diet and when I went into puberty it sort of went away. How ever it returned with more strength around my 20's. Today I have problems with my legs (swelling so much that I can not walk) and I have problems with eating. Can anyone give me some advice. My specialist does not seem to know what exactly can help (and I am SICK of taking pills). I have tried several kind of pills but they only seems to help in sort periods at the time then they become useless? I can see that some of you have tried massage of your legs - does this give any kind of relief? Furthermore I was told that you receive it from your parents, but no one in my family have this disease - and I was told that I can give this to my future children? I would really be greatful for any response since I feel quite alone with all my questions. Kind regards Barbara, bjoy@ncinternet.net Posted 11/5/00 3:20 AM Have decided it's time for me to do something about dealing with this disease as the size of my legs increases each year. Only began having severely noticeable swelling about 3 years ago in my legs but before then it was my ankles. I work and lead a productive life but am worrying more and more about the condition. What to do? Kevin, kc1959m@msn.com Posted 12/7/2000 5:36 AM I have mild Milroys of the right hand arm foot and leg. I had surgery to remove tissue from the top of my hand and foot as a child which never returned. Are there any new treatments out there for Milroys? Thank you for any info you can give me Linda Arthur, lindaa143@earthlink.net Posted 12/8/2000 3:03 PM I have been diagnosed with Milroys since the late 60's. I recall my grandmother and father having swollen ankles and legs with they said was arthritus. Mine did not show up until my first child was born. I need to know how this is diagnosed today as most doctors do not know about the disease or if they do it is vague. My daughter is having problems with swollen extremities. She has been to four doctors and cannot get anything done to help or understand what is wrong. Endocronologist,Cardiologist, Vascular Doctor etc. Please, if anyone has anything information they are able to share it would certainly be appreciated. Thank you. Iben Rohde, Rohde@iben.dk Posted 21/8/2000 3:35 AM Date 20.08.2000 I have been receiving infusions of human albumin (I'm not 100% sure of the spelling in English). It have prevented swelling and have further reduced the large areas of fluid gathered in my body. With this I have avoided bandages and other treaments. Further I have in general a much better health.It is very expensive, but also very effective. I hope that other people can use this. Good luck to all of ya. Kind regards Iben Rohde Iben Rohde, Rohde@iben.dk Posted 21/8/2000 3:35 AM I have been receiving infusions of human albumin (I'm not 100% sure of the spelling in English). It have prevented swelling and have further reduced the large areas of fluid Iben Rohde, Rohde@iben.dk Posted 21/8/2000 3:34 AM I have been receiving infusions of human albumin (I'm not 100% sure of the spelling in English). It have prevented swelling and have further reduced the large areas of fluid gathered in my body. With this I have avoided bandages and other treaments. Further I have in general a much better health.It is very expensive, but also very effective. I hope that other people can use this. Good luck to all of ya. Kind regards Iben Rohde LEVERE, levere207@home.com Posted 27/8/2000 1:35 AM i WAS DIAGNOSED WITH LYMPHADEMA (MILROYS) WHEN i WAS 13 . i AM NOW 38 AND HAVE HAD THE SWELLING ETC FOR ALL THIS TIME. i HAVE FOUND RELIEF IN USING JOBST PRESSURE GRADIENT HOSE FOR THE LAST 20 YRS. I HAVE JUST RECENTLY BECAME AWARE THAT THIS IS CALLED MILROYS CONDITION. HOW WONDERFUL TO KNOW THAT THERE ARE OTHERS WITH THIS CONDITION. EACH DOCTOR THAT I HAVE VISITED OVER THE YEARS, I HAVE HAD TO TELL THEM WHAT THIS CONDITION IS. THANK YOU FOR HAVING THIS WEBSITE FOR INFORMATION Jill childs, bettyboopvsnod@aol.com Posted 3/9/2000 9:01 AM I have been diagnosed 2 years ago with Milroy's disease it seems i have been born with this cinderella of diseases.I am now 44 years of age my swelling started at 18 years of age.The diagnosis was only confirmed 2 years ago after my 2nd bout of Septacemia (both of which i fought off) in my right leg.The first time i was given only hours to live.I live with severe swelling all over especially in the lower right leg.The illness also according to a little research causes in some cases double rows of eyelashes cysts in the brain liver and kidney problems swelling of limbs.I have been registered disabled for life as septacemia can return at any point.however my own doctor refuses to aknowledge that i am disabled probably because he missed the septacemia diagnosis.I am now on water tablets 3 a day yuk 1 and also rare antibiotics for life.they call this the cinderella of diseases because the docs do not want to know .Why when it is genetic? It occurs most often in females especiall Kristin Hughson, kmadison@gulllakecs.org Posted 8/9/2000 5:40 AM Hello! I am a district health nurse for a public school system. I recently found out that one of my students has Milroy's disease. I have had some difficulty finding information on the disease. If anyone could send me some literature, I would greatly appreciate it. It is important to me to be able to inform all of the child's teachers so that we can better meet the child's needs. Thanks very much! Kristin Hughson,RN, BSN Darlene Russell, DarleneRussell@webtv.net Posted 19/9/2000 3:28 PM I am currently looking for a specialist in the Charlotte North Carolina area for treatment. Please email me with information DarleneRussell@webtv.net Maryann, maandma@earthlink.net Posted 28/9/2000 11:21 AM Check out the book!!!! COPING WITH LYMPHEDEMA by Joan Swirsky, RN and Diane Sackett Nannery. Get it at Amazon.com for $13.00. My daughter has Primary Lymphedema/Milroys. Check out the book, it is the same thing!!!! I have researched this extensively and if anyone needs my help, let me know. A good Pediatric Dr, is Dr. David Alan Olson, Ann Arbor University Med. Center. He is one of the best and maybe could help. Milroys is tracked through the Lymphedema Pages on the web. Search for LYMPHEDEMA. GET THIS BOOK!!!!! Adriahne Crow, crowa@river.it.gvsu.edu Posted 3/10/2000 2:07 AM I am a 21 year old with Milroy's. I have had it since birth. Just recently I got cellutis (spelling) and was then informed that I could receive the physical therapy (i.e. bandages and compression stockings). I am curious about these infusions of human albumin. What side effects there are. How safe it is and exactly how expensive it is. I lead a normal life, except for days when shoes won't fit, I wake up with no feeling in my legs, etc. My main problem, as I now see is everyone's, is having to tell doctors what I have and then what it is. If anyone has information on these infusions I would love to know. Thank you! Jane Schoelkopf, jane_sch@yahoo.com.uk Posted 14/10/2000 9:53 PM There is an extensive family history of Milroys, mostly female, in my family, and I have been a sufferer since my teens. Now it seems as if my 17-year old daughter has developed it. She experienced a tearing pain in her affected leg at the onset of the condition, which I remember happening to me too. The pain is extreme - like a tearing of the muscles, and the leg seems to fill with lymph which never drains away completely. Has this initial pain been anyone else's experience? Our family doctor is questioning my daughter's diagnosis precisely because of this pain, as he does not think Milroy's causes pain. JAIMIE DEGRAND, JAIIMIIEHOT@YAHOO.COM Posted 18/10/2000 4:35 AM I AM 20 YEARS OLD, I WAS SAID TO HAVE LYMPHADEMA WHEN I WAS 16 YEARS OLD, I AM NOW 20 AND VERY VERY DEPRESSED DUE TO WEIGHT GAIN FROM THIS CONDITION, I HAVE NO CLUE WHAT TO DO, I HAVE TRIED EVERYTHING AND HAVE HAD NO RESULTS...... COULD SOMEBODY PLEASE HELP ME!!!!!!!! frederique boumeester, frederique@boumeester.freeserve.co.uk Posted 31/10/2000 10:39 PM I just found this site and now discover that i am a typical case history. What relief, as hardly any doctors seem to be aware of this affliction, and just like so many other's I have seen every possible bdotor under the sun,all over the world. Til finally a g.p. in Kuala Lumpur, where I lived at the time was able to diagnose me. sadly he didn't know of a cure. I have been told that a ho,homeopathic constitunional remedy WILL cure it. However, to find the right one is not easy. I have tried 2 without luck. According to chinese herbalism all ying foods should be avoided, which definitely alleviates the problem. No cold drinks etc. Also according to western herbalism one should avoid all starch food, which I have done and has helped somewhat. I too get excruciating pains when my legs swell, which my mother and my sisters and the sister of my grandmother do not get. I too lose my appetite when they swell and feel nauseous. I would love to hear about the human albumin infusions. What are they ?? Can anyone tell me ?? lori carroll, christinac@primus.ca Posted 5/11/2000 8:10 AM i would like to know the symptoms and prognosis of milroys disease. lori carroll, christinac@primus.ca Posted 5/11/2000 8:07 AM i would like to know the symptoms and prognosis of milroys disease. |
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Lymphoedema - Palliative Physiotherapy deriece, jkopetko@globalpresence.com.au Posted 14/2/99 10:17 AM Need help for my mum, she has Milroys type 2 lyphodaema and her legs are OOzing huge amounts of sickly sweet fluid, she has both legs effected and is on Ab's constantly, her major problem at the moment is how to deal with this smelly ooze. help would be appreciated, she lives quite issolated from the world because of the smell charles Carrillo, twoplusto@earthlink.net Posted 28/5/00 5:12 PM My mom has this lympoedema. Both legs and arms are very large. her legs are so large it is difficult for her to walk. It took the doctors quite a few years to figure out what she had. Many just thought her weight gain was due to a bad diet. Insurance sent her to a hospital in Orange County, CA. They wanted to send her to a hospital in Germany. The insurance said 'NO'. and we do not have the money for such travel. Is there any hospital in the United States that can give the same care/treatment that she would have received in the German hospital. We live in Southern California. Thank you, and you would not believe how I am hoping you have good news for our family. specially my mom. Pat Gareau, patricia.gareau@pwgsc.gc.ca Posted 11/7/2000 3:03 AM is there a place in Ottawa, Ontario, Canada to have a compression bandage for a left arm and hand made. I am hoping to have one custom made as a one piece compression bandage for my left arm and hand. thank you My phone numbers are work (613)990-9202 home (613)729-1197 J. Kennedy, johnkennedy@nf.aibn.com Posted 4/11/2000 4:40 AM My mother in law has been showing the signs of lymphoedema (in her arm) for approximately 4 months now. She has had a masectomy in the past (approx 9 years ago with multiple lymph nodes removed and has had tamoxifen in the past as well). At present, she has been using compression bandages in addition to going to a massage therapist trained in lympoedema cases. The results are negligible thus far though we are still only in the early stages of this therapy. There has been some discussion by the family doctor and several 'cancer' specialists that there could be an obstruction due to past scarring from radiation, or perhaps a blood clot, or perhaps cancer recurrence. How best does one perform massage therapy of any kind when obstructions are in place. Are there any Internet sites which discuss/outline the pathways for lymph fluid drainage; a chart of sorts. Any info. on this would be appreciated... John K. David Courtney, davidc1970@yahoo.com Posted 9/1/2001 8:32 AM I would like to know where I can purchase Judith R. Casely-Smith's books, in particular Treatment of Lymphoedema. Thank you for any help you can provide. David Courtney, davidc1970@yahoo.com Posted 9/1/2001 8:32 AM I would like to know where I can purchase Judith R. Casely-Smith's books, in particular Treatment of Lymphoedema. Thank you for any help you can provide. Freda Gossage, fkendall@fkendall.screaming.net Posted 1/2/2001 7:13 AM I have just been diagnosed as having Lymphoedema, I found this site in trying to research it. I am 47 and my legs are very swollen and have been since I was 14. I could never get a doctor to listen, but one did and sent me to the hospital, i am wearing the compression stockings now. I know how bad this condition can get, my grandad had it and cut his leg open to relieve the pressure, I hope that modern medicine finds a cure. Freda Gossage, fkendall@fkendall.screaming.net Posted 1/2/2001 7:12 AM I have just been diagnosed as having Lymphoedema, I found this site in trying to research it. I am 47 and my legs are very swollen and have been since I was 14. I could never get a doctor to listen, but one did and sent me to the hospital, i am wearing the compression stockings now. I know how bad this condition can get, my grandad had it and cut his leg open to relieve the pressure, I hope that modern medicine finds a cure. joel, rambo@aquanet.co.il Posted 2/8/2001 12:19 AM hi i am a boy from israel and i am 21 years old. i had lymphadema ever since i was born. im not writeing this because im not very good in english so my friend is writeing it. i have it really bad in my legs and its very hard to treat. i dont ever get out of the house becausae it is really hard for me to walk. i really want to keep in contact with you. i want to leave my phone number in israel: 09-8845713 pleasae try to contact me. thanjk you. joel |
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