The Lymphedema Guestbook Guestbook

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This Guestbook started on January 15, 2000
Last contribution on April 22, 2012 at 11:15 GMT +1

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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..

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.

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

Greetings!
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 maelings63@msn.com and type Lymphedema in the subject line.

May you live long and be healthy!

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

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.

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 compressionstockingssite@yahoo.com or contact us through the contact form on our blog www.compressionstockingssite.com

Please accept our sincere thanks for any contributions.

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

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.

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 allenpsyd@gmail.com

Thank You
Jacque M

How devestating it is to see how many fellow lymphers are out there struggeling with this mysterious condition, and how sad it is to learn just how ignorant doctors all over the world are about this!

I am 38 years old, and I have Primary Lymphedema in my right leg, it started two years ago when hurting my back by lifting a heavy shoppingbag in an unfortunate way. I get MLD and wrapping from a lymphedematherapist and at home I do wrapping and self MLD. I find that jumping on a mini trampoline keeps the tissue soft and when I started jumping I noticed the swelling went down a tiny little bit. I think it is important to excercise the lymphfluid.

I am finding it dificult to deal with the emotions of Lymphedema and adjusting to having a cronic illness, let alone feeling like a freak with my swollen leg and horrible compression stocking. I often feel like I am the only girl in the world with this, but I am not.

On my blog I write about my life with Lymphedema and my attempts to get better.

have had lyphadema in left arm for 15 years and kept it under contrl. now have broken lower left arm and swellining is out of control. any advice is welcom.

I have Pimary Lympheodema and would like to hear comments and treatment, and views of other people who suffer with it.

572. Name and adress information are known to the moderator
March 19, 2011 at 16:07

I wanted to share with fellow patients my recent experience using activated carbon and homeopathic milk thistle and nux vomica.
I finally began to lose a stubborn and rather sudden increase in swelling...I wasn't being able to lose. My doctor agreed with my 'experiment'. Apparently my reaction was to bug spray ! Perhaps it will work for others with allergies.
I have lymphedema of both legs.
The swelling increases,as you know, due to several known factors such as heat or airplane flights etc. In this recent episode it was due to an allergic reaction to a spray, commonly sold for domestic insect control. My usual swelling increased . I went from a size 12 to 16 !
In my country the activated carbon is sold at drugstores, without a formula. Milk thistle and nux vomica are available at natural health stores. These products are taken by mouth. Milk thistle is an excellent liver cleanser.
Although I normally have mostly vegetarian diet ..low salt, low sugar ,low fat , as recommended. I consume white meats occasionally (I developed lymphedema in 1996 concurrent with a cancer ). I add this because as you know vegetarian diet is of easier digestion... and I had managed my weight.

I am a LMT certified in manual lymph drainage. I work at Realis Medical Spa in Houston Texas. We have a great new treatment for lymphedema with great results. Call for more info and a free consultation. 281-955-5282

I had surgery on Feb.23 2010 to remove 2or 3 swollen lymph nodes under my right arm. All came back safe and sound. Except now I have Lymphedema of my right arm/hand/fingers. I also gave cording in my arm. I had to have my underarm drained 3 times with ultrasound and needles, Blood clot, cellulites.All was very very painful!!! Doctor\'s know NOTHING at all about Lymphedema and make me feel like I should get over it..... It is very painful to deal with everyday and the littlest things in life are so hard to do now. I feel so alone and cry all the time. Why are the people in our medical field who we are suppose to turn to for help when there is a problem so cold and dumb about Lymphedema?????? Never heard of this before in my life until after my surgery. My heart aches for everyone out there that has this.

I have Lymphedema - never had cancer but just developed probably from several surgeries, medication I take for a kidney transplant, etc. Would like to know how others are handling this disease.

I am a registered occupational therapist and certified lymphedema therapist. I am available to treat patients in their homes and outpatient clinic setting. I have decided to devote my time and energy to individuals with lymphedema in order to rebuild their lives.

Individuals in the Birmingham or surrounding areas may contact me for a therapy appointment or further information on lymphedema.

Courtney D. Harrison, MS, OTR/L, CLT
Certified Lymphedema Therapist

Does anyone here in the NYC area/vicinity know of a good Dr.(infectious Disease Dr.) That specializes/well informed about cellulitus infections Lymphedema patients?Email me.

Myself a Lymphedema subject, exacerbated by acute Cellulitis (caused by a strep infection -- itself the direct result of a wrong-diagnosed radical cancer surgery involving excision of nodes and tissue -- (and) for which assessments had been denied), I suffer effects of secondary stage II of the left leg which extends throughout the ankle/metatarsal foot and back to below the knee. This is with neuropathy and what appears also to be an advancing fibrotic condition. Since an unneeded 2006 surgery at Virginias state university hospital at Charlottesville (UVA), I experience grotesque swelling which, even if searing and constant pain were not a perennial constant, vastly prevents placement of any conventional footwear.

Researching this condition, and also experience of its primary (inherited) form, I have learned much with respect to how patients are mishandled -- and I might say, also USED for financial gain: in the United States, regardless it stage or advancement, Social Security expressly denies benefits for treatment for most peripheral vascular disease. With certain caveats (compounded conditions which themselves must qualify), it specifically excludes treatment for Lymphedema. Widespread physician apathy -- equating to the sole pre-planned/accepted form of institutionalized malpractice I have witnessed -- because victims can, with adequate treatment specific to THIS condition, often live long enough to pull resources from precious administrative budgets. This is far less likely when they receive sufficiently consistent poor, or, even more likely, totally absent care (hence physician apathy). Any research, announced or projected, appears to have as obvious first objective, the goal-driven mission to both strengthen and continue this policy.

This you can be quite sure of: CDC does not inspire state mandates to require cause of death to list Lymphedema, regardless a role in causation. It is otherwise treated exactly as a substance -- and to that end, one that will place the onus nowhere but on the patient.

I haven\'t mentioned stigma against those with the consequence/s of gross physician misconduct and who then present to others hoping for needed treatment. This is a whole separate issue....or is it indeed when even certified therapy practitioners, on establishing history/details, say they will phone back when they can fit you in???

Lymphedema,Bandaging,Comfort,Result ,Look at www.softcompress.com If it helps, on should be thankful.

Would we have done the surgery if we would have known we were going to deal with Lymphedema the rest of our lives? Not sure of my answer to that question, but i have asked it before, can\'t live in my past and my choices. I must now live in today, what I can do... I try to have a positive attitude, exercise, drink water instead of sugary drinks, not too many sweets unless it is natural and avoid processed foods, I have done well. For those of you who had no surgery and just one day had lymphedema, wow. I do pray everyday that JESUS will heal me. It is okay if you don\'t belive the most important thing is that I know HE will heal me, I will believe for my healing until I take my last breath, HE has ordered my steps and I am sure HIS word is forever settled in heaven and HIS word does not lie. I will keep the faith, how about you. It is a personal choice and mine is I will stick to JESUS. GOD bless you and and may HE bring you the healing that each one of you need.

Hello to all,

I have had lymphedema probably since 1984 after a difficult pregnancy where I swelled so badly and was nearly toxemic. Most women\'s ankles swell during pregnancy and mine did too, except after I had my baby the swelling never left. It just got worse over the years. I have been told I have PAD, veinous insufficiency, stassis edema, and one doctor recently Looked at my legs and feet and told me I needed to have lap band surgery for them. One night I was watching TV and heard something about lymphedema. I then checked it out on the internet, saw photos of lymphedema and realized that THIS was what I had! Yes, I had to literally diagnose myself. Later I went to Houston to a lymphedema treatment and wound center and found out that I was right. Problem is, I live about 100 miles from the center which is a real problem. There are hardly any clinics or therapists around locally for the majority of lymphedema sufferers.
After I told my doctor about what the lymphedema center had said, he told me, \"Honey, edema is edema.\" He continues to give me fluid pills. If you try to enlighten anyone around here it just falls on deaf ears. Not only are most doctors unaware of the signs of lymphedema, but their attitudes toward it is terrible. This is costing sufferers dearly. Please pray that soon education concerning this very serious condition will be much more wide spread, and that there will be help for it in local places instead of just mostly major cities. Lymphedema is the stepchild of medicine it seems. They don\'t realize how serious or debilitating this condition is. People can get sores, cellulitis, lymphangiosarcoma, sometimes have to have a limb amputated and in some cases, even die. Like so many of you, I too, have gotten so frustrated with the medical community. God Bless all of you and I certainly wish you the best with this problem. I am thinking of trying our friend\'s suggestion about the Bromelain and B complex. For some of us that live too far out to be able to get any treatment, we had better be researching and doing all we can to help ourselves because it may be awhile before the medical community will finally have the ears to listen, and the knowledge to act.

Blessings to all of you,
Vickie

Lymphedema Now Has a Presence on LinkedIn

LinkedIn has become the forefront of social networking, especially for more than just keeping in touch. Upon realizing there were numerous groups on health, breast cancer survivorship, occupational and physical therapy, Solaris realized that there was no place, specifically, for Lymphedema patients or those helping patients to congregate.

For this reason, Solaris has created Lymphedema awareness groups on LinkedIn. They can be found at these links:

National Lymphedema Awareness Group

Canadian Lymphedema Awareness Group

International Lymphedema Awareness Group

We hope to open up lines of communication among patients, Lymphedema therapists, fitters, durable medical equipment suppliers and more. We encourage you all to join your corresponding group, to start discussions pertaining to Lymphedema and to post latest news on Lymphedema and related topics!

I was recently diagnosed with lipedema. I was not diagnosed by a DR. but by a lymphadema theripist. She wants to start compressions right away. Should I get a second opinion from A Dr.? Don\\\'t I need to get some blood work done first? Help?

A very different website that I came across. It is related to your questions specific in nature to surgeries. You can post your questions related to any problem that deals with any surgery problems or if you are seeking any surgery done but have questions in your mind. good information as most of the people post very good questions that are related to our every day life.
So do checkout and bookmark to see from time to time to see new answers posted
Thanks

You can see it here at Surgery & Surgeon

Just found the site May 19, 2009...have not been diagnosed yet but suspect Lipedema. I have had since puberty. When I was in school my knees were as large as the other girls waistlines. Very embarrasing. Painful fat, pain when blood pressure is taken, doctor has no answer for it. Legs are becoming more feverish as I am getting older and pressure when wearing jeans cause discomfort. I\'m glad for the support on here. Thank you one and all for the information and discussion.

I am 39 years old and have been told that I have lymphedema in my stomach due to having cellulitis numerous times. I was told at first that it was a massive tumor, but now they have changed their minds. I don\\\'t know where to find help to get this treated or if there is even a treatment for it. the mass is said to weigh at least 100 lbs. In less than 2 years , I have lost close to 230 lbs. However this mass is very hard and has not gone down any. DOes anyone have any ideas as to where I can find a place to get treatment for this , or if there is treatment besides surgery? I am a high risk for surgery, and where I live which is in the general area of Kansas City Mo. there is no place here that treats it. Any advice would be so greatly appreciated.
Tracey

I found this board by accident, because my mother who is 54yo, is going in to have her left leg amputated this week after a 2 year ordeal. They haven\\\'t really identified exactly why the lymphedema, but despite 1.5 years of dealing with pain and many many many therapy sessions, her L foot had become fibrotic. They were going to try to do an achille\\\'s tendon lengthening surgery, but her foot (which is like permanently pointed due to lymphedema and non use) is so fibrotic that the orthopedic surgeon said even if they did the surgery, she still probably would not be able to walk on it. She has been through so much...having to deal with the pain, not being able to drive or even go downstairs in her own home for 2 years. When the MD said amputation was an option and that it would be the \\\"fastest way to getting your life back\\\", she did a ton of research and many second opinions later, she decided to amputate her L leg (below the knee). It is a bit different since she is deciding to have it amputated, whereas most amputees don\\\'t get a choice. So the mental preparation is different I think, but no one knows what she\\\'s gone through but herself. I just came on this board to see if there was anyone else who had lymphedema that fibrolyzed, or anyone who had an amputation as a result of lymphedema. They do amazing things with prosthetics these days, and I\\\'m sure that it will give her a certain degree of freedom that she hasn\\\'t had in awahile. Thanks for letting me vent!

I have lymphedema in my abdomin, I have apparently had it since 1949 after
abdominal surgrey, I have had 5 occurances of what was diagnosised as cellulitis of the abdominal area, the last to occurances have been within the last year with the last one in Feb. of this year, and to date this has been the very worst occurance. I was finally recommended to a infectious disease doctor at Mayo Clinic and he was able to correctly diagnosis me as soon as he looked at my abdomin, he assured me there is no cure and there is nothing that can be done, his only recommendation was to wear an elastic binder (like you wear after stomach surgrey), this will keep the fluid from accumulating in the abdomin and keep the swelling and inflammation down. I have been wearing the binder for six days now and the difference in how my abdomin feels is amazing. Is there anyone else out there who has the lymphedema in their abdomen? Please let me know!

555. Message from Kathy Bates (Kathy@austinbeautyandhealth.com)
I\'m trying to get the word out that I\'m having some significant success with clients on an as yet unconventional approach to secondary lymphedema.
If anyone in the Austin, TX area is interested I think I can easily say that we are in pre-study phase.
I need bodies with lymph issues to prove theories!
AFTER I have interviewed to see if I think the candidate is suitable I could arrange to have them speak to current clients if necessary.
I do NOT take insurance. I\'m simply not willing to get paid half the money and wait 90 to 120 days to get it AFTER harrassing the insurance company.
I\'m a licensed massage therapist so if your insurance will pay for that then you can file your own claim.
Looking to help and excited about what I\'m seeing thus far.

I joined this network when it started in February 2000 (refer guest book signed in on 18/02/2000 and I have been a lymphedema patient since 1979-primary lymphedema .I had a lymphshunt in 1986 done in the UK by Professor John Edwards (Harley Street) with some relief but my right leg is still swollen and I use Sigvaris stocking from John Bell and Croyden in the UK since 1979.I would like to become involve in educating people about lymphedema since its a struggle everyday and i am now 49 years and dealing with it comfortably.Please feel free to contact me at rani60@msn.com

Hi Im 20 years old and i was just told that i have Lymphadema. Its my right leg. it all started after i came home from a vacation i just thought something bit me so i just waited to see a doctor. well after about 3 weeks i went to the doctor and they just brushed me off said \\\\\\\"that might be just the way your leg is\\\\\\\". I thought there no way that it could be all of the sudden like this. so i went to another doctor this one said that it is lyphadema. I want to know what is there that i can do because i was basically told this is what i have and that\\\\\\\'s it.
Please and info.

-amebr-

FYI. There is a new surgical procedure being done right here in Charleston, SC. They are taking lymph nodes from a healthy area of the body and transplanting them to the area with lymphedema. For example, I have lymphedema in my right leg. T he surgeon took lymph nodes from my left arm (axillary nodes)and transplanted them in my groin area of my right leg. There is a surgeon in Paris that has done thousands of these over the last 20 plus years. She has had great success. I just want everyone to know about this exciting new surgery. I met another doctor in Michigan that is also performing this. If anyone needs more info. please contact me. Hang in there.

Sandra

back in november of 2007 i had severe swelling in my left foot and i was never told what it was it went swollen til febuary of 2008 i developed bronchitis and they put me on predinsone the swelling went down, back in july my right leg and foot started swelling i continued to work til september 13th 2008 before going to the dr they have done blood work my sed rate is elevated,my sodium level is a 133 and my chloride level is 100 which the sodium and chloride are low.....the sed rate is 37 which is high.... the doctors are not sure what is going on i have been on antibotics, steroids, and anti-inflammatories seen a thearpists for lymphedema and they put compression wraps on it it helped with the swelling in the leg but not the foot or toes made it worse and now they have had me off work for over a month cause of the swelling and don't want me to walk on it i have to keep it elevated at all times.i have had blood work,xrays and a ct scan and ultrsound nothing shows up.......i have psorasis too, im just wondering if someone can help me and my drs out im not getting paid being off work and not eligible for a medical card cause im not pregnant or have children under 18 at home.......this is a big pile of medical bills going thru all this to find nothing out in return.........PLEASE IF ANY INFORMATION LET ME KNOW.....I THINK IM BEING USED FOR A EXPERIMENT.....

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