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Hello, my son (now 12) was born with a hard lump on the top of his foot and toes and was diagnosed with a Lymphangioma. His middle toe and large toe became much larger than they should be. The hard lumps have been removed with surgery. Over time the toes started developing blood blisters which hardened and rubbed together painfully before falling off and another batch developing. We are now left with pain in the foot where the lump used to be. Sometimes the foot weeps with lymph and the blood blisters develop all the time. The area is often affected with dermatitis. Has anyone else had experience with Lymphangioma? Hi Helen Saw a post someone made on another site about Lymphoedran. Could you share any experiences with this? Perhaps also how it is supposed to work. Many many thanks! Pat O'Connor - Lymphedema People - www.lymphedemapeople.com - Lawrenceville GA USA l wanted to enquire on wether you have a support group in this area. l am an occupational therapist carrying out a research on the services avilable for pts with LE in the hampshire area and what role both PT amd OT can play to improve services in the area. The researh is done for the trust for areas that need improvement in service delivery. also to enqure on the roles that physios and ots play within your service delivery system. esther mavurah - - portsmouth england My mother developed cellulitis in her right leg approx 5 months ago and was treated in hospital with antibiotics IV. During this time her leg also swelled to an enormous size and she was diagnosed with lymphodema. She was also told this may have been brought on by her treatment for breast cancer approx. 15 years ago. The swelling in her leg has not reduced although it is not too bad in the morning but on walking a short distance during the day begins to swell up again and is painful and red. My mother has resorted to raising her leg whenever she is not walking which is not too convenient! If anyone can give me any advice/information on this I would be extremely grateful. Thank you. Helen Rainbow - Nottingham, England -Monday 18th September 2006 Hi there I have started to see a wonderful man who happens to have severe lymphodema. He was born with severe club feet and after 37 operations and pins everywhere his mobility is very poor. Then 18 months ago he was in a car accident that made his lymph glads pack up. He has always been a big man but now with his poor mobility and his constant pain and the lymphodema his weight has shot off the scales. It is a viscious circle. He can't get rid of the excess fluid and now it is too painful for him to walk - his legs and feet lok like they are going to burst. The lymphodema clinic is only open one day a week and have offered us an appointment a month away. But I am so scared. It is terrible seeing him in so much pain and I feel useless. He can't get his weight down because he is immobile but his weight makes the lymphodema worse. I am new to this illness and I just don't know what to do or where to go for help. It's not helped by the fact my partner is terrifed of hospitals - not surprising really. We want to get married next year but I can't see him being here for it. Any advice would help but it's been nice just being able to get it off my chest. Alexandra - Grays, Essex, England -Sunday 17th September 2006 Does anybody know anyone that can make mocassions, or shoes to fit our feet? I did the doctor way and came up with Frankenstein shoes, in which I could not walk with, Currently I wear sandals all year round, and when the winter comes I have 2 pairs of socks on, with open toe sandals...I would like to find a clog/mule to slip on and go! And, I am looking for Doctors and Hospitals in Michigan, that handle this problem. My doctor, doesn't know what to do? darlene richmond, mi usa -Friday, July 28, 2006 at 14:35:47 (EST) I had a melanoma removed from left leg in 1977 then had lymphnode removed from smae leg at front in1992 then in august 2005 had a bout of cellulitis and then another bout of it again in feb 2006 and now have just had another bout of it last week.I am a 57 yr.old lady. Could anyone tell me why after all the time since I had the lymp nodes taken out why am I having this problem now. sue jordan devonport, tas aust -Saturday, July 08, 2006 at 14:29:35 (EST) My 2 year old has had swelling in her hands and feet for about a year (now arms, legs, trunk, face). She has weak muscle tone and can't crawl or walk, or get to sitting. She eats with a feeding tube. We have been to Mayo and Seattle Childrens Hospital, with no diagnosis. Any ideas? Connie Smith Kennewick, WA USA -Saturday, July 08, 2006 at 04:18:57 (EST) Hallo All, I've been reading your posts having recently been diagnoses with cellulitis and lympheodema in both legs. The basis problem was caused by a car accident where I hit my shins badly and caused lumps and bruising on my forlegs and feet. I have have never been able to move around the same since and this swelling gradually got worse until this recent diagnosis. With regards the infected skin, I live in Australia and 20 years ago Oz stopped stocking Synalar Ointment Full Strength. I am quite sure that this would heal my skin infection as it is the only thing that worked when I had a serious infection several years ago. My doctor gave me 4 creams before trying this one (my son got the infection too) and we could literally 'See' our skin healing - once this was applied. First the skin went red and very slightly sore - in a way that was pleasant and relieving! then as the redness went the skin was healed.. I thoroughly recommend this ointment if you can get it. It is only Australia that is is unable. Be careful of the many fraud prescriptions that are being sold online. That is Synalar ointment full strength. My doctor has given me a prescription in the hope that I can talk a chemist in another country to supply it for me. I wish you all God's Healing and I will pray for this. I've been doing a wonderful course that is all based on scripture and it promotes Love, Healing and Wealth in our lives. I was given this 24 week course by a top investor for Christmas. Here is the address, I strongly advise you to do it - it will change your life as it is doing mine. I know that my recent diagnosis has been brought out from this as I have been suffering from it for many years and now I can deal with it (at least God can) I will also say that since doing this course - I have great new possibilities of providing a house for my son and pay off my daughter's mortgage etc etc! It is all part of the same thing. God Bless You http://www.psitek.net/pages/PsiTekTMKSContents.html alice holland kilburn, SA Australia -Saturday, June 03, 2006 at 23:35:57 (EST) IF YOU WANT HELP....PLEASE READ THIS! Hopefully you will get some relief too!!!! After a fall in my backyard 4 yrs ago..which resulted in surgery and a steel plate and 12 screws in my right ankle...I developed Lymphadema in my right leg and thigh about 2 yrs later. I searched and searched for an answer and the best one I could come up with was on lympha-press.com. My doctor wasn't aware of the Lymphapress products..so I enlightened her. She wrote a prescription for the Lymphapress PANT and Lympha-Press Mini machine, and my Health Insurance paid for it except for 10% of the total cost. I try to use this machine every day and most of the time I also wear support pantyhose of some sort..and I can really tell it helps. I also have a Chi Machine that helps move the fluid on out of my body. (my Chi machine is a SunAncon, but there are several others out there..some on ebay cheaper than I paid for mine) Also...I try to get Manual Lymph Drainage Massage when I can. I do whatever it takes to keep my leg down, because I've read that if the fluid continues to build...it will be hard to get the size of my leg back down. Swimming seems to make a difference for me too. If you can't find someone who sells the Lymphapress...there is a company in Nashville, TN that does....but you have to be fitted for them. Good luck..and if you have any questions please feel free to email me! Brenda Beaty Watertown, TN USA -Saturday, June 03, 2006 at 12:21:58 (EST) I have had Lymphadema/precox since I was ninteen years old, I am thirtyfive now. Ive done the lymph massage, and the stocking. With little to no results. I do feel isolated and I am tired of people looking at me like I am a freak. I would like to chat with someone who understands and knows what I am going through. Id like to get some information about the debulk operation or the chi-machine. Ive seen approxamatly two hundred doctors. Most of whom refused to see me after several visits for no aparent reason, leaving me that much more frustrated. Helen Tucker Doniphan, MO America -Monday, May 29, 2006 at 12:39:19 (EST) HI.. I was diagnosed with LO in january after 6 months following breast cancer surgery and not knowing what was going on with my arm and breast and doctors telling me it will go away. I do lymphatic massage,special Lymph draining exercises which i found online myself,I swim, I do cardio exercise daily, and have lost weight which all combined has bought my arm down to only 1cm larger than the other now.So dont be scared to exercise as I know if it wasnt for me persisting to exercise, i would never have reduced my swelling.I now no longer have to wear my compression garment 24/7. None of this is a cure but it all combined has definatly been MY answer to controlling this annoying condition.. Next week i have my first mamagram on my affected breast.. blahhhh wish me luck !!!!!! cause i know it aint gunna like it. :) Kaz south hedland, WA Australia -Sunday, May 28, 2006 at 18:43:46 (EST) hello. i have problem in my left leg.my left leg is vey fat from last yer. i have been to hospital also bit its not cure so can any one help about my problem ganesh kathmandu, bagmati nepal -Saturday, May 27, 2006 at 22:20:35 (EST) In Oct 1990 I was in the ocean and something brushed the bottom of my right foot. Nothing seems to sting, but just shocked me. An hour later I had a red spot on my ankle the size of a quarter...within the next 2 hour I couldn't stand on my leg and was in the hospital on IV's. They didn't kill the infection the first time, so 30 days later it was inflamed again. Dr said it was cellulitis. This time I was hospitalized for 10 days followed by home nursing care and additional IV drips. I've ahd about 5 episodes since then, each more severe. Dr says my lymphatic system was damaged. I tried stockings but they caused too much pressure at the ankle..sliding down as I walked. I recently heard of the massage treatments but haven't found anyone locally that specializes in this. Does anyone know of a place in Northern Florida..Jacksonville would be preferable...that does this? Is this normally covered by insurance? I saw the term lymphedema used on the Health Channel and realized that Dr's today don't want to spend the time treating this holistically...they prefer to despense water pills, etc. MJ Jax, FL USA -Wednesday, April 26, 2006 at 13:53:17 (EST) i have had this condition since birth . it affects the whole left hand side of my body. if there is anyone who would like to talk to me about it please contact me. i am 45yrs old and still hate it. it doesnt get any better but at least im alive and well denise sheffield, england -Tuesday, April 11, 2006 at 02:13:51 (EST) Sent wrong Email address with last message! Linda Mort nottingham , notts England -Sunday, March 19, 2006 at 02:38:29 (EST) Our daughter was dianosed with lymphoedema at six months old, first affecting boyh feet and ankles,then left calf. Over a few months the swelling went in her right foot and ankle and has remained relativly unaffected. She was prescribed, and wore a support stocking from this young age. She first encountered an infection at seven years old , we had no idea this was a risk and had no advice about avoiding this. She was hospitalised, and suffered a lot of pain, it also frightened her and her sense of vulnerability has stayed with her. A year later she developed small weeping blisters, which were misdignosed by several doctors for a year, by which time she contracted another infection, and was hospitalised again. After seeing several skin specialists the blisters were finaly diagnosed correctly. as part of her lymphoedma. Since then we finaly refered to a specialist Lymphoedema clinic, and have been given lots of good and effective help and advice. Iam very frustrated that we didn't get this help earlier, as her condition has worsened through her two bad infections. Iwould definatly recommend fighting to get specialist help as soon as possible after diagnosis. We now have our own dry antibiotic mixture to enable us to treat any infections as quickly as possible, we have learnt simple manual lymph drainage, which our daughter, now ten years old, likes to take charge of herself,and recognises the benifit of. We are aware of the benifits of the right kind of exercise, all of which help her to feel some sense of control over her condition, which understandably get her down at times. Web sites have given us a fuller understanding of this condition which my daughter feels quite secretive about, and worried by the unknown future it might hold, no matter how posotive and helpful we as her parents try to be, we appreciate that ultimatly she needs to feel as empowered as possible, with all current advice, to be able to enjoy her childhood and rest of her life as freely as possible. We hope our limited, but personal experince may be of some help to other young ,or older people with lymphoedema, and families trying to help. Linda Mort Nottingham, Notts England -Sunday, March 19, 2006 at 02:27:19 (EST) Hi All, My mum has lymphoedema in her left arm. She has been told about a "debulk" operation - but its not Liposuction...... Does anybody have any info, has anybody had this done? Kx Kim UK -Monday, February 20, 2006 at 08:54:42 (EST) I have been wearing the venosan4002stocking with the rubber around the top of the stocking, last time I wore it it has left a red welt around the top of my leg which is quite painfull, I think I have become allergic to the rubber. does anyone else have this problem? If so what did you use instead. I only use my stocking while travelling in the car but we are thinking of travelling overseas and I will need something then. Sherril Garner Macksville, N S W australia -Thursday, February 16, 2006 at 10:11:01 (EST) my husband may have cellulitis or lymphodema or both - just looking for some info anne wa -Monday, February 06, 2006 at 01:45:41 (EST) my daughter was born with swollen feet and has been diagnosed with primary lymphedema. Not many people seem to know of treatments available for infants. I have been to a massage therapist who specializes in treating adults with lymphedema. She has never treated an infant and is unsure if the same treatments apply. Does anyone have a child undergiong treatment and what are they doing for him/her? debra ns canada -Saturday, January 28, 2006 at 08:17:42 (EST) My mother developed lymphoedema after an operation for cancer of the cervix in 1997. Ever since, she has had Lymphoedema in her left leg. At first her Doctor referred her to the 'Blue Nurses' who would come everyday and put a special stocking on. Over the last few years they have given up doing this and her Doctor does not appear to care about treating her leg any longer. I think he feels because she is 87 he does not need to bother helping her anymore and I don't think he really cares. She will not go to another Doctor and I feel very frustrated. I went and spent a week with her recently and was appalled at the condition of her leg, it was huge with one area that was red and rough looking. She said her Doctor called it 'orange peel'. I would like to know if there is a Lymphoedema group in Queensland who I could contact, to see if someone could go and have a look at her leg and give us some constructive advice. Thank you June Hobart, Tas Australia -Wednesday, January 25, 2006 at 22:26:16 (EST) hi my name is laine .i suffer from lymphodeama in my left leg .im hoping to start a uk support group for people with this awful condition .please feel free to get in touch laine thorne newcastle, england -Thursday, January 12, 2006 at 22:44:03 (EST) hi, My name is Ben, I was diagnosed with lymphodema at 14 years old, i am still 14.. its really hard.. like, im pe, i have to wear pants, and like.. yah. its embarrising.. buy this really nice lady named Leslyn helped my and i was in wraps for a week and a half, and now i am in stockings.. for life.. but at least I have legs..:-) okay well if anyone wants to talk.. im here. [email protected]. thanks. ~Ben Ben -Friday, December 30, 2005 at 11:38:33 (EST) Lymphoedema? Lymphodema? Lymphedema? Cellulitis? What are the difference ? yim SP, WA aust -Tuesday, December 20, 2005 at 19:19:02 (EST) I've heard about a LO masage machine for LO limbs. I'd like to know how it looks like, where can one purchase that and is there any published study on its effectiveness. Also, is decongestive therapy really useful? what is the most effcetive treatment for LO yim SP, WA aust -Tuesday, December 20, 2005 at 19:15:44 (EST) hi I was diagnosed with Lymphodema at 19 when I fell pregnant with my little boy who is now 4 my Labia both swelled up so much that I could not walk, urinate i had to have a catheter fitted and could not sleep I was in and out of hospital and had to have a c- section to deliver my son I recieved no medical help and told nothing could be done for me I joined a support group and get a news letter now and again i was given a support stocking but no one wants to help one doctor told another over the phone that i looked like i had a scrotum and before lymphodema was diagnosed was told it was an abcess, herpes and allegic reaction to thrush cream.I think i may have it in other parts of my body face, stomach and legs but the genital bothers me most i hardly eat but cannot seem to lose weight and get really depressed would love to hear from anyone with same condition or advice Pauline Cordwell Stoke On Trent, England -Wednesday, December 14, 2005 at 10:18:32 (EST) hello everyone my dad is suffering from lymphodema at the moment it started in one leg and now it is in his other leg very red swollen skin flaking off and very painful for him he is 65 years old he is on a course of penicillin for two weeks and is having district nurses in everyday twice a day to change his bandages it is leaking heavily his leg is and we as a family are very worried for him also can some one tell me if it is hereditory as I suffer from arthiritis and I am scared that I might get this problem or my brothers will please can some one advise on best excersise for my dad and ourselves my dad is seeing a lymphodema clinic near us too. we are just very confused as to how he has this problem thanking you all hhawes burntwood, england -Wednesday, November 16, 2005 at 10:08:59 (EST) My mom is suffering from elephantatis leg since past 25 years she is diabetic, blood pressure and at times gets fever & vomiting due to her leg. Kindly suggest to me a remedy for her leg. Thanks Manoj Mansukhani Mumbai, Maharastra India -Friday, November 11, 2005 at 22:02:25 (EST) My name is Helen and I have been seeing a Surgeon for a few months now and he has mentioned to me that he believes I may have Lymphodema. I have had an angiogram, Lymphoscan, Cat Scan, soon to have a mammogram, and next to see a Lymphodema Specialist. I am 30 years old and a single mother of three beautiful daughters and I am so scared because it has been a very lengthy process for me! This problem initially started back in June 2005. I was told by my regular Primary Care Doc that it was a spider bite, was given some antibiotics, told to ice my hand and arm. But it has not worked, neither has a secondary antibiotic prescribed, ace bandage wrapping my entire right arm and hand. This has put me through a serious emotional roller coaster! Sometimes I feel like I am getting the run around from these Docs. It took awhile for my PC Doc to put in the referral to the Surgery and Radiology Department in the first place which was very upsetting. Don't get me wrong, I have been given good test results that there are no critical findings in all these tests I have undergone but what do I do, if I have clearly made it clear that I don't only want the swelling to go down in my hand and entire arm, but I want it be normal again!!! It is so much to ask? I feel like a guinea pig. As if they may not know for sure, and it is becoming a way longer process that I would have ever imagined. I don't want my medical needs and care to be guessed about! Don't get me wrong, I do understand that Physicians and/or Hospitals usually have to go through their process of ruling out but I am scared, nervous, uncertain, and fear the unknown causes of what I have been facing. I am hoping and praying that God can help place some people into my path that can or may help explain if they know about anything of what I am going through. It would help me so much. I may asking to much for you and I don't know you but I have Faith that there is someone out there who may offer some help and/or advice and I pray that you may be one of them??? Praising GOD through it ALL, GOD is so GOOD, ALL THE TIME, Helen [email protected] I am thinking of going to Egypt to learn to dive with my husband. However I have lymphoedema in one leg and a Urostomy. Would either of these conditions prevent me from learning to dive.I am 48 yrs old, and female Bobbie Minshull Maastricht, NL -Saturday, November 05, 2005 at 05:38:09 (EST) I had a bad fall, resulting in severe lymphodeama in my right leg ( I was hospitised for 5 weeks) I have been left with really bad discolouration of the affected parts plus severe swelling of the affected area. I also have knee replacements in both legs as well as congenital deformities of both feet. I am 62 years old and am a very happy positive person, I teach maths 11-16 part time and would love to talk to someone with similar problems Carole CREWE, ENGLAND -Thursday, October 06, 2005 at 05:31:10 (EST) my son is 22years old he has had lymphoedema since he was 15years old it all started with a minor rugby injurey leading to severe swelling on his right leg,the swelling does go up and down but normal size for his leg when stable is double the left leg.He also has a least 3 infections on the leg aleast 3 times a year,one month ago he had yet another infection hes leg blow up and was kept in hospital for ten days,and told to rest. philip my son does work full time and is a active young man. i have seen doctors, alternative medicine and am told he must rest, its this all he can do for such a young man? yesterday he has found 2 lumps, one on his groin and one on his leg doctor has refered him to another doctor, we have seen so many doctors and none the wiser, is there anyone who could offer some help, my sons selfesteem is getting very low thankyou.paula trant paula trant southampton, england -Wednesday, September 28, 2005 at 03:08:58 (EST) Hello !! I have chronic lymphodema of the penis and scrotum and have been advised to withdraw from sexual activity and even with hold from ever engaging in it in the future with my partner as like living a celibet lifestyle. I'm in my thirties now; I would like to know is it going to get much worse as I age and is there something I may do to not loose the enjoyment of sex in my life?. If any one may have some tips or medical advice could you kindly contact me via my email thanks. Gregory Sydney, NSW Australia -Monday, September 19, 2005 at 00:25:58 (EST) im doing an assignment on cullulitus and i need some info on it can you please give me as much info in it as posible alice shepparton, vic australia -Tuesday, August 30, 2005 at 16:10:09 (EST) Does anyone know of any physio's in the Doncaster area qualified to do MLD? Has anyone been prescribed a drug called Parovan? If so has it done ay good? Shirley england -Monday, August 22, 2005 at 03:09:58 (EST) Hi everyone.I'm 48 years old and was diagnosed with lymphoedema in my left leg about three years ago.It came out of no where, and all the so called experts are sure of is that they can't do anything about it!I wear a stocking and manage to carry on working full time.Now i'm pretty sure the L is starting to affect my right arm,and to top it all the left side of my face is looking a bit 'fuller' than it used to.I feel so scared and alone with this(i have no close family).My G.P. and consultant have never recommended any type of massage (or anything except the stocking).I guess compared to those of you who can't get around my case is relatively mild at the moment but i just don't know where to turn.I get so depressed and no one has a clue how bad i feel because i have to act 'normal' at work.Is anyone else in the same boat? Where do i go for help?support? Shirley England -Friday, August 19, 2005 at 04:45:27 (EST) Hi Tanya Has your mom undergone lymphedema decongestive therapy? Has she been able to find a support group yet? Wanted to recommend this site: Lymphedema People http://www.lymphedemapeople.com Not only is there extensive info there, but she can locate treatment centers near her and there is also a discussion forum where she can find many new friends and get support. Wishing her the very best!! Pat Pat O'Connor Atlanta, GA USA -Saturday, July 30, 2005 at 20:37:13 (EST) Tanya, I’m Dan, in searching the net about Lymph systems, your message below came up: hi my mom also has just recently found out she suffers from lymphodeama she has had a hard time with finding anyone to help her with dealing with it yes not even family or friends have been able to give her the support that she needs.it has gotten to the point that shes in a constent depression and is angry alot too we all love her so much but dont know what to say or do to ease it for her can someone PLEASE help me in trying to help her and maybe give her the support she needs her email is [email protected] please again if anyone can do this for not only her but for us as well id love it thank you tanya gollipop mesa, az United States -Sunday, September 08, 2002 at 05:15:25 (EST) Here is to hoping it is not too late to help your mom with her health challenges. Not to say we do deal with the Lymph system. We have a friend that does as a profession. Her name is Samara and office phone is 480-241-0906. All the best, Dan Winscot www.BetterHealthWins.com Dan Glendale, AZ USA -Friday, July 29, 2005 at 10:14:12 (EST) Hi Everyone My name is Debbie am 42yrs i have just been diagonised with Lymphedema in my hands and right leg, I havent started the stocking bit yet, I am have physio, I do manual drainage exercises which at times hurts, I was an aged care nurse but was told i wont be going back to work, I was so looking forward to that. I was told that i will need my family support but unfortunately my family is in qld, I would like to hear from anyone who could help me understand this a bit more, share ideas etc. I would love to hear from anyone, anywhere, I can be contacted at my email address [email protected]. Thanks for taking the time to read my letter. Debbie debbie Colgate st marys, nsw australia -Wednesday, July 06, 2005 at 14:51:27 (EST) Hi, Ive been meaning to contact you for a while but kept avoiding it My name is Steve Hall im 33 years old, English live in Manly and i have Primary Lymphedema in both lower limbs. My mother also has the condition and im told its very rare for it to be passed on to the child(my mom was told it wasn't hereditary and has beaten herself up about passing it on to me all her life). I believe i have a very unique and interesting story about Lymphedema and us. I have never met another person who had it at such a young age and really felt no one understood(of course they did i as just too wrapped up in self pity) I feel that i can offer advice and support to other "Lymphedonians" (don't like to call us suffers) young and old if you know of anybody who needs to talk. I wont rabbit on but i would like to give you a quick history of myself. I started to notice my legs when kids at school kept asking why i had two pairs of socks on,i didn't obviously, it was the start of the swelling. I was about 11and by the age of 13 i could only walk;key for about 4 hours before my legs swelled up so much they could no longer hinge. At 14 i got my first leg infection and it was so severe i slipped into a coma. At first they thought i had meningitis . After a few days i came to but remained in hospital for a week unable to walk because of the pain. Apparently i caught it through cracked skin on my foot. Mom never had a leg infection i have had about 15 to date. I also made things worse by breaking both legs and both ankles as was a mad keen BMX rider.They told me i would be in a wheel chair by the age of 21 so i tried every crazy sport under the sun to the absolute detriment of my legs. By 21 i was fit healthy and getting used to my Sigvaris leg supports they totally changed my life by keeping the swelling controlled there was no stopping me of course the pain was intense and regular suffered veins bursting through my skin. To go through your teenage years with this condition is unimaginable to a normal person to this day i am conscious of my legs but then, at that age, it almost wasn't worth living, i was young fit eager to meet girls knowing full well i would have to show them sooner or later and as it was rare people called me terrible names which eventually saw me in court for assault much to my regret it was totally out of character. Writing this letter is in itself a relief for me i told my mother its a gift and a curse, without it i would be just another person it has made me work for myself and given me real strength to do anything. I worked as a chef for 8 years sometimes doing 80 hours a week without anyone knowing my little secret. I have my condition under control pretty much now but i have yet to meet a person with more severe Lymphedema ( mycalf measures 18"in diameter) i hope i never do but through years of undergoing every test under the sun ( i was under professor Browse in the uk, my place of birth.)and listening to doctors who with respect can never fully understand it unless they have it. 90% of what they tell people is wrong i was the first to test inflatable leg casts ive had numerous lymphegrams and lymphatic scans, drainage massage drugs the lot. I developed my own treatment over the last ten years and i feel great which is why my mother wanted me to write to you. I do not like the way people with our condition waitout their days on the promise of a cure, i say this.What would they do if tomorrow they were cured? Nothing i suspect and why wait do it now. Thanks for listening (if you are not asleep!) Kind regards Steve Hall Director Beach Lockers Australia 0424 604 406 if you would like to talk further? steve hall manly, nsw oz -Saturday, June 25, 2005 at 10:49:32 (EST) I am a personal trainer at a gym in Brisbane, I have a few clients with lymphedema (mostly in the upper body) and am trying to find out as much information as possible as to how exercise affects people with lymphedema. Both good and bad and any recommendations would be appreciated. Thanks janne lawson Brisbane, Qld Australia -Tuesday, June 21, 2005 at 20:14:27 (EST) Hi everyone, my name is Jenni and I have had lympoedema in my left leg ever since I was born. (Milroy's disease). I have recently visited my vascular specialist for my yearly check up. He is looking at an operation in two years to debulk the leg to help with my mobility. Has anyone ever had this operation? I will be in hospital for at least a month for recovery. I too go through stages of intense sadness and wonder why I was given this to bear. For me it feels like a lifetime sentence. You are all right people are really critical and think we are lazy and need to lose weight. Doesn't do wonders for the self esteem. My lymphoedema was diagnosed too late for compression garments to work. They have to be glued up the leg and fall down before I've walked too far. My specialist is wonderful and since my divorce has been a real support. I only discovered this web site because I was searching for information on the operation. Let me know if any of you have had this procedure done. remember if all else fails we smile. Jenni Port Kennedy, WA Australia -Sunday, May 29, 2005 at 15:02:52 (EST) i am suffering with lymphedema in my left leg. I could hardly walk my leg was very heavy bigger than my body because i am slim, and i was researching on the net and found that Circaid.com . And found out that they have garments which helps relieve i immediately ordered a Thigh High i paid $570.00 US i can boast today that it is very good now iam able to walk to church and doing all my house work just my instep that is a bit heavy. but the worst is gone so if u can afford puchase one of them and you will get the result.. I have since orderd another one. Trust me it is good. Thanks to Cicaid. heather peter Other -Sunday, May 22, 2005 at 10:21:48 (EST) Oxidative stress in chronic lymphoedema. Siems WG, Brenke R, Beier A, Grune T. Herzog-Julius Hospital for Rheumatology and Orthopaedics, Bad Harzburg, Germany. BACKGROUND: Chronic lymphoedema is one of the most frequent and debilitating complications after surgical and radiological tumour treatment. Prevention and therapy of lymphoedema is therefore an important problem of the rehabilitation of those patients. Aim: To investigate whether chronic lymphoedema results in increased oxidative stress. DESIGN: Prospective case-control study. METHODS: We obtained venous blood samples from patients (n=38) with chronic lymphoedema and determined biomarkers of prooxidative reactions and of antioxidative defense system in the erythrocytes or blood plasma: reduced and oxidized glutathione (GSH and GSSG), and lipid peroxidation products such as malondialdehyde (MDA) and 4-hydroxynonenal (HNE). Healthy volunteers (n=90) and patients who had undergone surgical and/or radiotherapeutic treatment of tumours without consequent lymphoedema (n=20) acted as controls. RESULTS: The blood of patients with chronic lymphoedema contained lower concentrations of GSH and higher levels of GSSG and of MDA and HNE, compared with the control group. MDA was increased by about three-fold in the serum of the lymphoedema patients. Accelerated free radical formation and lipid peroxidation processes were further demonstrated by the liberation of MDA and HNE into the blood serum after manual lymph drainage. DISCUSSION: Our data demonstrate enhanced formation of reactive oxygen species (ROS) and accelerated lipid peroxidation processes in chronic lymphoedematous tissue. The strengthening of antioxidative defense mechanisms could be useful in the therapy of chronic lymphoedema. PMID: 12454323 [PubMed - indexed for MEDLINE] Mar 29 2005 17:30:14 Oral glutathione in my clincal experiences can increase glutathione levels, This article suggest that increasing gsh levels might help lymphoedema, feel free to e mail me, I am a Nutritionist, and came across this study. Stephen new york, ny United States -Sunday, April 10, 2005 at 18:11:45 (EST) Hi I hav bn back from Nw York on hour but on the plane I noticed my hand had got very swollen I was wearing my compression sleeve - should I be doing anything to help it go down and will it go down? I am young - 58yrs and just been with girl friends to New York for 5 dqays. Please advise Hilary Harris London, -Thursday, March 31, 2005 at 19:57:19 (EST) i had a spinal surgey in 1992, 1997, and 2000 which left me with foot drop and weak leg, i walk with cane but i feel as am getting older ( am 37 now) i get tired of walking and no strength to walk, i want a treatment phsyical treatment that is very intensive maybe with some massage theropy and excerise. i aslo want to be put on weight gain program. i am 55kilos (120 pounds) and am 173cm (5-10) i tried everything but could not gain. it will be nice if i find a hospital (any where in the world) that put me on special prgram 2 gain weightand excerise, i can stay up to 6 months overseas. Ali Kuwait, Kuwait -Monday, March 21, 2005 at 09:20:07 (EST) i had a spinal surgey in 1992, 1997, and 200 which left me wit foot drop and weak leg, i walk with cane but i feel as am getting older ( am 37 now) i get tired of walking and no strength to walk, i want a treatment phsyical treatment that is very intensive maybe with some massage theropy and excerise. i aslo want to be put on weight gain program. i am 55kilos (120 pounds) and am 173cm (5-10) i tried everything but could not gain. it will be nice if i find a hospital (any where in the world) that put me on special prgram 2 gain weightand excerise, i can stay up to 6 months overseas. Ali Kuwait, Kuwait -Monday, March 21, 2005 at 09:18:49 (EST) Can you please tell me what sort of specialists treat this problem? Thanks. Jennifer Carter Agoura Hills, CA United States -Friday, March 11, 2005 at 04:12:19 (EST) I am 28 and have had primary lymphoedema of the legs from the knees down for 17 years.I am currently wearing Jobst pantyhose after 15 years with another brand. I am having trouble with them as they are too short in the feet and leg length. I have found a brand called Ames Walker from the USA and cannot find anywhere to get them from in Australia. Has any one got any ideas? I'd love to find them as they are hepas cheaper than others when you convert the currency rates and offer a wider range of sizes and styles. Any info would be appreciated. I would also be glad to correspond with any other primary leg sufferers as we seem to be few and far between. wendy NSW Australia -Friday, January 28, 2005 at 16:09:34 (EST) Bettie -Friday, December 31, 2004 at 21:50:31 (EST) Hi, Im 21 years old and have had swollen ankles since I was 12. I am quite slim and find it really easy to lose weight on any other part of my body except for my legs (mainly my knees down,my thighs arent really a problem.) The swelling is really bad in my ankles and on some days it seems as if i dont even have ankles. I get my partner to massage them nearly everynight and its weird but its feels good when he punches my calves and ankleago. Does anyone know of a support group where people can meet, in the south-west Sydney area? Thanks. Penelope Wilkinson Sydney, NSW Australia -Sunday, December 26, 2004 at 20:19:50 (EST) Dear friends and fellow sufferers and supporters. I am now to introduce my self. I have had to tolerate lo for the past 14 years or so. I would like to hear, in particular, from anyone in New Zealand who is connected to this group and in particular from anyone from the lower half of the North Island. Also as I like to write to people all over the world, no matter there culture, colour or creed. people, please feel free to write to me if you would like. Providing you are polite and respectful, as I am sure you are, I will always reply to you. Kind regards, Jackie. One of my main interests is in Natural Hygiene and longevity as a serious study. Also the breathing method devised by Vladimir Frolov Jackie Havelock North, HB New Zealand -Tuesday, December 14, 2004 at 06:39:03 (EST) Does anyone know where to go to do a Lymph massage course. I had a lumpectomy and lymph nodes removed and would like to learn about drainage so as too help others in my area. Thanks for your time. Samantha Atherton, Qld Australia -Wednesday, November 24, 2004 at 21:29:16 (EST) For 2 years now ive been reading ,talking to every one about arm lymphoedema and i have come to the realization that we need someone to pay attention to our problem,you never hear about it I have never heard of a rich person having it. I worked hard at trying to get talk shows to have a show on lymphoedema,it was like a no-no- subject. Iknow something can be done,but what and why hasn't someone came up with a cure by now. their is a lot of women-not just a few with this condition. Lu'mora Pendleton Mansfield , Oh United States -Monday, July 12, 2004 at 12:50:38 (EST) Hi i am looking for people who suffer with Lupus SLE i have the condition and woiuld like to talk to others that suffer with the same please thank you for taking the time to read this Hugs Kathryn kathryn burleigh waters, qld Australia -Wednesday, April 07, 2004 at 19:57:43 (EST) Addendum, or post script to my previuos posting about the Kick Start Diet as a benefit for lymphedema Today Tonite,Channel 7 was the source for the diet and on going self care, which is easy. As for me I am on it as of next week due to my healing left leg. have fun, graham graham warburton brisbane, qld Australia -Wednesday, September 10, 2003 at 01:44:38 (EST) I a saw on the TEN news last week a breakthrough in the treatment of lymphoedema. They said something about maybe being able to make the body produce lymph properly again or something. I did miss half of the story. I would like further information if anyone has any. natasha nsw Australia -Tuesday, August 26, 2003 at 21:08:36 (EST) I had a radical mastectomy 1/4/03 and am now experiencing problems with lymphoedema. I would like to speak to someone to find out whether exercise (playing tennis, netball/basketball) will further hurt me or help me. I am starting to experience slight swelling. Any information or advice would be appreciated. kim Australia -Wednesday, July 09, 2003 at 22:14:05 (EST) Hello. I am a 32 y.o. female who just underwent ovarian surgery. The main complication I am having is the Left hand, wrist and arm where the IV was placed. It has been swollen for 4 1/2 weeks , negative for blood clot, negative for infection.limited mobility due to the intense swelling ( no real pain to speak of)....and no one can see to determine a diagnosis. One physical therapist mentioned lymphoedema. The last physician was ready to do a permenant sympathetic nerve block! Has anyone had any success with compression bandages?? versus the nerve block (which is last on my list ) Please email me with any possible help. thanks in advance. Signed, Lost in Michigan Mary Stahle Email: [email protected] mj jackson, mi United States -Thursday, June 12, 2003 at 11:49:48 (EST) Hi, I am 39yrs and have lymphoedema of the left leg, right thigh and pelvis. This was brought on by cervical cancer operations 13years ago, although the left leg only flared up 2years ago. While I try not to let it affect my lifestyle (difficult at times), over the past 18mths I have had 4 cellulitis attacks which have landed me in hospital each time, very inconvenient. I would be interested to know if anyone else out there has a similar problem and how they are able to manage it. Robyn Robyn Burgin Penrith, NSW Australia -Wednesday, May 07, 2003 at 12:59:34 (EST) I would like an updated 2003 calendar of events and meetings as I have had recent breast cancer surgery and early symptoms of lymphoedema Lyn Kirby Warrawee, nse Australia -Sunday, March 30, 2003 at 11:49:06 (EST) Hi My name is Mel Parry, and I live in North Wales in the UK. I'm trying to find some information that may help ease the awful pain that my father is in due to Lymphedema. His case is quite a unique one. He had an operation last October to remove a tumour on his penis, which is not a common case in its own right. The operation was successful, but the surgeon had to remove his lymph glands around the waist and groin areas - quite normal in this type of operation apparently. My father then went on to receive radiotherapy throughout January, which again has seemed to be successful in destroying any remnants of the tumour left after the operation. Before the radiotherapy he was warned that he would probably, sometime in the very near future, suffer from some form of Lymphedema. However, the extent of the pain from which he is currently suffering down the length of his left leg and into his lower back is excruciating, and has come as a complete surprise to all the medical staff involved in his recuperation. The reason for this, they are now convinced, is due to a heart by-pass operation my father had in 1996 for which the surgeon removed a long length of vein from the leg to use around his heart, and it is the absence of that vein, combined with the removal of the lymph glands which is responsible for the pain and swelling in the leg (in contrast, he has very little pain in his right leg). These quite unique set of circumstances - a fairly uncommon form of cancer operation combined with a previous removal of a vein in the left leg for a heart by-pass operation - are proving very difficult to treat effectively, as here in the UK there doesn't seem to be any similar case from which to gain any effective treatment information/experience. Hence my search for anyone in the world who may have some idea of how to relieve the pain effectively. I'm hoping that through yourselves I may be able to contact someone who may have some experience of a similar case, or maybe you could point me in the direction of somebody who may know someone who may know someone etc. Yours in hope, Mel Parry Mel Parry United Kingdom -Wednesday, March 19, 2003 at 23:14:07 (EST) I am a long term sufferer of Lymphoedma and although, I have had therapy, I find it almost impossible to wear stockings in summer. However, that is not my question or complaint, it is this, have you heard of anyone suffering bouts of extreme weakness and pressure in the affected limbs? I have great difficulty in walking when this happens and it tires me so badly, that I simply have to rest. Thankfully, it is not an every day event, but I am keen to know if Lymphoedma would be the cause or should I look eleswhere for cause. Thank you for your wonderful support, it is a soul destroying afflicion, but there is strength in numbers and this site reminds me that I am not alone. June Hoskin JUNE HOSKIN Sydney, NSW Australia -Friday, March 14, 2003 at 17:31:28 (EST) (continued) I am losing muscle and fat tissue and suspect necrotising facsiitus.Has anyone similar symptoms?Please write back and share any information you may have and it will be apreciated.Thank you in advance. 03-12-03 M.D. Kountze, Tx United States -Thursday, March 13, 2003 at 14:11:03 (EST) Can you please send me information about treatment for melonoma please? gary white macquarie fields, nsw Australia -Monday, March 03, 2003 at 18:10:47 (EST) has anyone heard of or used benzo-pyrones for lymp yls United States -Thursday, January 23, 2003 at 05:40:08 (EST) Click to see previous messages |
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Lymphoedema Support Group of NSW Articles, news contributions - Liane O'Brien, Physiotherapy Dept. St. George Hospital, Gray St. Kogarah NSW 2217, Fax: (02) 9350 3075 Support - Barbara Smith, 9402 5625 Membership - $10 to Box 58, Wahroonga NSW 2076
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