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Guestbook nr. 23
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August 31, 2014 at 18:10
My friend -Mary has been diagnosed with lymphedema and I am trying to assist her in finding people with the same problem. She is only in her early 50s and has a full life ahead of her . Her lymphedema is on both her legs , but more on the left leg . They told her she may needs surgery in her groin area to remove some lymphnodes and she is going to obtain a second opinion to see if she really needs that surgery.
Can you please help us , we are trying to find people with this illness and especially someone that has gone through this procedure. She is so full of questions and so am I .
Is there someone that you may know that we can meet or talk over the phone that can share their experience or experiences .
Please help us :))
Your immediate attention to this matter will be appreciated.
Thank you .
August 1, 2014 at 07:20
HELP!! HELP. My father has lymphedema, along time ago he was diagnosised with lymphedema. Over the years there was no sign other than swelling, in 2012 he had to have surgery due to they lymphedema. Since then his legs steady drain fluids, it looks so gross, i feel as if there is a contant infection in him. He is always in pain, he cant sit or stand for long periods of help.Due to lymphedema he hasnt worked in a long time. He has no medical coverage so it is hard to get him any care. I have applied for medicaid and SSI. SSI has been denying him for 2 years, I have written a letter of appeal as well as set pictures of his legs. I know alot about lymphedema through studing so i can care for him the best i can. This condition can cause him to lose his legs, and the infections can cause death. It is so stressful. Does anyone have advice on what to do? Thanks in advance.
Sault Ste. Marie
May 17, 2014 at 00:35
I don't feel so alone anymore after finding this website. I received a left knee transplant in December of 2013. I had lymphedema at the time. My leg is very swollen and painful. I have even gone to a specialist downstate to see what he could do. He told me that operating on my knee while the lymphedema was acting up was like throwing gasoline on a fire. He had no solutions. I can walk with a cane. The knee area is very swollen and even the exercises that I do and the compression stockings don't work. I am thinking about a pump as I can't wrap my leg due to my painful and swollen knee. I am overweight and on a very strict diet. I hope losing weight will help. Does Any one have any ideas?.
November 30, 2013 at 23:14
It will be two years in March that My Son Michael passed away from an infection that he got after finishing cancer treatments. Mike was 32 When Mike was 17 days old he was diagnosed with congenital lymphedema. Mike had a very hard time while growing up with this. It started affecting his feet and then went up through his body threw the years. The last 5 years of Mike's life he really got it under control. He went to the hospital with back pain in July of 2011. Was diagnosed with testicular cancer. I write this message that all those who suffer with lymphedema and then get cancer be careful of who treats you. My Son was the 1st person they ever treated with this and the said thing is they caused him so much pain and at times I felt he was their test dummy. This is the 1st time I have wrote anything about Mike and If I can save one person to go through what we did it helps. Just cause they say they know how to treat you, don't count on that. I wish I would of known better.
August 1, 2013 at 23:36
Hello, I have had lymphodeme fro 4 years now after surgery for uterine cancer. I have had several bouts of cellulitis and also a lymphocoele. Lymphoedema is a challenge.
August 1, 2013 at 19:31
I had surgery in March of this year to have a lymphnode removed for a biopsy. My brother, sister and Mother died from cancer. My brother had lymphoma and with my background they wanted to make sure. Thank God I did not have cancer, but now I have developed lymphedema. It has thrown me for a loop. They say I am doing good in controlling it. I am not sure what good is, but I feel awful. I wear my compression every day. I do my pump every day, as well as my MLD and exercise. I feel as though it is taking over my life. I have always been a active person and I still am, but it is affecting what I do. There has to be something that can help those who suffer with this dreadful thing. Has anyone had any surgeries that have helped them?
592. Bill Caloia
July 18, 2013 at 10:44
I went the entire route:
MLD by a licensed therapist.
using first, a Solaris sleeve on both legs, then Coban wraps.
I am overweight.. I am fat. The therapist stopped treating me because I am fat.
I have very painful blisters that appear when the outside temperature rises above 90 degrees F. I have them on both legs. Sometimes they break open and drain. They are very painful.
When it is 108 degrees for 90 days straight, as it usually is in summer in Southern California, wearing any kind of compression wrap is impossibly painful.
I have a sequential pump with custom sleeve from Wright Therapy. I don't use it because it is quite painful.
Once in a while I take Vicodin to help with the pain, but no more than one a week. I don't want to become an addict.
I am wondering if hydrotherapy.. .soaking in cool water would help I cannot get into a bathtub, and a shower does not let you soak. A walk-in pool would seem to be of some benefit, as the water pressure would help move the lymph and soaking in cool water would have a definite therapeutic value. Has anyone tried this?
591. Dana Lindloff
July 17, 2013 at 00:46
I have had this problem with my left leg since September 2011. In the beginning, it was just abrasions on my leg and then it turned into Huge Ulcers. The swelling is really bad. My leg is swelling to capacity so much that I have bled out before. And about 5 months ago, a big knot had come up on the outer part of my leg and as of 2 days ago, An even bigger knot has come up right under my knee and it's hard a painful when I walk. My pain level stays between an 8 and 10.All the Physician's Assistant's and Nurse Practitioner's that I have seen in the last 2 years have diagnosed me with alot of different things, such as; Edema, Shingles, Scoleraderma, Pyroderma Gangarosum, Faliculitis, Reflex Sympathetic Dystrophy, Cellulitis among other things. I have been trying to find medical treatment since September 2011 and because I have no Insurance, I have had no luck. I am in need of some Major Medical Treatment and can't seem to find it. There have been times, recently, that I made the statement, "I want the leg taken off" and that is how bad it is. I have not gotten the proper medical treatment because once the medical facilities find out that I do not have insurance as a result of not being able to work they turn me away. I have been trying to get Disability and still in that process. Please help me if you can. I would appreciate your time and attention regarding this matter.
590. Carlos Pereira
June 23, 2013 at 23:27
My sister needs Lymphedema Therapist treatment, she has not insurance and has not money, it is her birthday and I like to find out if I can give her a treatment for a gift for her birday if I can afford, please advice the cost and how I can get information and your contact information.
I look forward to your response.
589. Cynthia DeHart
April 9, 2013 at 02:53
I am joining for my husband who has lymphedema of the right leg.
588. Mr Leslie humphries
November 6, 2012 at 04:19
I have chonic lymphedemia can you tell me is there a cure which my legs will return too normal i have had this problem for about 10years now and i can't get around as well many more can you tell me how i can fix this problem so i can tell my doctor here in this country because i want very much too be able too get back up my my mountian bike so i can loose alot of wieght and keep myself fit.
i hope you can please help me iam on a pension done make much but i want a cure for this problem can you help me
July 22, 2012 at 00:46
My mom has lyphedema in her legs with a ulcer and severe swelling in her right leg. The wound dr sent us to a clinic for wrapping and it seemed to be effective until she developed cellutis and had a severe reaction to the antibiotic .she was admitted to the hospital. The clinic recommended we go with circaid products and sent us to the pharmacy. They however couldnt order for us until the leg was back down. The clinic told me we should just cancel our appts and have given up on us.i would appreciate any advice since none of our drs specialize in this and we cannot get an answer.
Dar es Salaam
May 15, 2012 at 15:42
Hi friends,I have been living with primary lymphedema in my right leg for the past three years,i always have to put on compressional stockings as a way of controlling the swelling.I would like to know if there are any other ways of controlling lymphedema without wearing compressional stockings or atleast reduce the tendency of wearing them everyday
April 19, 2012 at 22:17
Well I am so lost I am 49 years old and just have had issues also now had a ct scan donw just got told it is inmy liver area and they believe it is cost by my hep c i also have chorosis and just lost here have no clue whsat this all means man.. what is this thing? i seen pictures of th e legs and all an d omg i am small lady now i weight 125 pounds and dont understand.. my kidneys and all th e areas good my lymnodes are all swollen 2;3 cm but thisis been going on for a while i have had alot of health issues and now this they are tellin g me umm can anyone explain what this is is it cancer what th e hell looks like NO cure either ... please email me i need some answers if not i get it.. ty so much for listening Tina Headley.. freaked out right now to no end.. i hate th e medical friend do they really know what they are talkingabout man wow..
584. jean dennison
April 3, 2012 at 17:40
mine started as cellulitis in legs then they became ulcerated,and i was diagnosed with lymphodema. 2 years ago right leg healed and has been in compression garment since . my right leg is still ulcerated and leaking after 4 years.it is in compression bandages which community nurses change . over last few days my left foot has become very painful,the pain being severe.the foot and toes also look bit more swollen than usual,can anyone tell me why this is.
583. Andrew Matta
April 3, 2012 at 05:15
Hello everyone, I have had lymphedema for 5 years now in my lower left leg...all doctors in this country said just wear compression socks and I'll be fine...
To get to the point...there is a cure surgery...called lymphovenicular anastomosis....if you have insurance, the surgery is covered....if you love in the US, California and Texas have these surgeries...
Professor Doctor Corradino Campisi in Genoa, Italy is the most qualified to do this surgery....he has done this surgery pver 2400 times...please guys, dont let doctors lie to you and fool you, there is help!!! I am personally going for this surgery in Italy...If anyone has needs any information, please guys, dont hesitate to comtact me...I want everyone in the world that has lymphedema to know that there is a cure out there....
And with all due respect, all those massages, and decomgestive therapy, and all that bogus, doesnt work...everyone, there is a cure surgey! Please comtact me if you want more information om where to get this surgery
582. Maeling Schenck
North Charleston SC
February 9, 2012 at 02:03
Chain Connection ~The foundation for Lymphedema Lives with ME!~ (facebook- colored Lotus flower) is my business of crochet apparel which I advocate on this condition and cancer awareness in North Charleston, SC through the use of Chinese Herbal Medicines and teas.
* Ginger Root- Used as an antibiotic, pain reliever, heart burn, nausea, sinus / chest congestion and infection and stir fry for cooking.
* Turmeric- Used as an antiflammatory to reduce swelling and fat cells.
* Astragalus- (Chinese Herb) Helps rebuild white blood cells after chemotherapy and interferon treatments. Relieves pain in fibromyalgia, asthma, arthritis, decreases high blood pressure, cleans the toxins from the lymphatic system and kills cancer cells. www.cancer.org - American Cancer Society
* Horsechestnut- Reduces the swelling in vericose veins. Excellent for lymphedema!
If you have any concerns about these herbs, my encouragement to you is to research www.cancer.org and www.herbwisdom.
Ginger Root and Turmeric can be purchased at Walmart.
Astragalus and Horsechestnut can be purchased at The Vitamin Shoppe.
All 4 of these herbs can be purchased through www.puritansale.com at a very affordable price!
If you have any questions or concerns, please feel free to contact me at firstname.lastname@example.org and type Lymphedema in the subject line.
May you live long and be healthy!
January 17, 2012 at 04:12
swollen legs for 16 years; caused by poor circulation on my legs, I would like to know how to treat it and get my legs back. I have a hard time walking and can seem to find any answers for my condition
November 22, 2011 at 23:02
I have had lymphedema in both legs for 13 years after having 3 c-sections and an abdominal hysterectomy my lymph nodes were damaged when they had to laser all the scar tissue out. My right leg swells worse than the left. Sometimes the pain is so bad I just want someone to cut it off. All my doc can say is well just have to wear the compression stockings the rest of your life and just get use to it. I have no health insurance after getting laid off after having a heart attack and had to have a stent put in and heart is only functioning at 40%. I can't find any help.
579. G. Wolf
July 25, 2011 at 22:44
We are building an extensive website about compression stockings, which centers around conditions and symptoms that they can improve and be helpful for.
We are authoring an article about lymphedema and compression stockings and would be interested to hear about your experiences and how compression stockings have been helpful in controlling or improving the swelling caused by lymphedema.
Please feel free to email us at email@example.com or contact us through the contact form on our blog www.compressionstockingssite.com
Please accept our sincere thanks for any contributions.
July 2, 2011 at 21:53
I became certified in Complete Decongestive Therapy when I could not find help for a dear friend. I am a Physical Therapist and I started a specialized practice with an Occupational Therapist who is also certified. We would gladly help with your questions or treatment needs. Call 516-660-3911
June 8, 2011 at 02:55
I've had L.E. of my right leg (melanoma) for over 10yrs now and still can not believe that it is so unheard of.
I suffer every every second of every day with this.
It's destroyed what I loved to do athletcal
Could some one please help me.
576. Jacquelynn Mwalujuwa
May 28, 2011 at 07:44
I have had Lymphedema all my life. I have difficulty buying pants to fit my legs. I think I will have to have them made. I'm tying to find help to deal with swelling. I wish I could find a therapist to come to my house and treat me and wrap my legs. I was even trying to invent a type of wrap that I could wrap my self. I have a few protoe types. If I cant find what I need then I think I have to create it myself.
Any body with any information please contact me at firstname.lastname@example.org
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