... have this disease? Does anyone know what causes it, or what he can do to relieve the symptoms... MAJOR swelling until his lower leg looks almost blue? He keeps it up on a pillow at nite... is there anything else he can do until the doctor calls us back for an appt?? We have been waiting over a week and a half, and heard nothing. I am scared to death for him. HELP!
My husband has just been diagnosed with lymphedema in his lower leg, ankle and foot. Does anyone?
Added 1 Sep 2011:
Wow, thanks DzooBaby!! We appreciate you taking the time to do this for us!!! We were supposed to hear from a vein doctor for an appointment since early last week. I called his pcp and told them on Monday, and STILL no word. I have really been worried because it looks horrible. We went to the store and bought some "diabetes" socks, because he can no longer wear his other ones, and I have to keep a watch to make sure his leg stays elevated while he sleeps.
We had no idea what it was...his doctor told him he had some edema and gave him something that made him pee alot...that was all. Then last week he was talking to his brother up North and it turns out that HE has the VERY same problem, but he HAD actually been diagnosed. So we are fairly certain that we are correct and he has this horrible problem. It sucks that there is no cure for this!! I don't even want to tell him that part. He has had alot of health problems...they thought he had esophagus cancer because of acid reflux he has had many years has damaged his esophagus. For the past year, he has had to have surgery every THREE MONTHS to do a biopsy...after putting him on many meds for it and all the checking, he is a little better and he gets to wait a year now. The other option was MAJOR surgery that would have been life changing and would probably killed him. He also has a hiatal hernia right there below is esophagus that is inoperable. He has had some radiation testing done, and that may be where it all started. In the past year he had to have two veins in his heart bypassed or whatever you call it...then put on all these drugs...plavix, carafate, double strength prilosec, benecar, spireva...I can't remember all of it. Anyway, all this has happened to him in the past YEAR. So fast that ii is hard to believe it all even happened. The heart surgery happened on a Friday and he was back to work by that next Monday, so it felt like nothing even happened, it was so fast!
I have been having a VERY hard time trying to get him to change his eating habits and lose weight...he needs to lose about 50 pounds or even 75, not sure. I figure if he could lose the weight, A LOT of his health problems could be resolved. He sets at a table and puts intricate oil field piping together...computers in it and all that. He does do heavy lifting as well. The steel toed boots they require are NOT helping either. I don't know what to do. Seems he has the OPPOSITE problems that I do. lol
Thanks for all the info...now I can make a list of questions for his doctor...IF they ever call us! You are GREAT!!! Appreciate you very much!!
I'm quite familiar with Lymphedema. I do not have it myself but have taken care of many who have. Lymphedema is a condition characterized by swelling in one or more extremities that results from impaired flow of the lymphatic system.The lymphatic system is a network of specialized vessels (lymph vessels) throughout the body whose purpose is to collect excess lymph fluid with proteins, lipids, and waste products from the tissues. This fluid is then carried to the lymph nodes, which filter waste products and contain infection-fighting cells called lymphocytes. The excess fluid in the lymph vessels is eventually returned to the bloodstream. When the lymph vessels are blocked or unable to carry lymph fluid away from the tissues, localized swelling (lymphedema) is the result.Lymphedema most often affects a single arm or leg, but in uncommon situations both limbs are affected. Primary lymphedema is the result of a design flaw of the lymph vessels and is a rare, inherited condition. Secondary lymphedema results from an identifiable damage to or obstruction of normally-functioning lymph vessels and nodes. Worldwide, lymphedema is most commonly caused by filariasis (a parasitic infection), but in the U.S., lymphedema most commonly occurs in women who have had breast cancer surgery, particularly when followed by radiation treatment. A thorough medical history and physical examination are preformed to rule out other causes of limb swelling, such as edema due to congestive heart failure, kidney failure, blood clots, or other conditions. Often, the medical history of surgery or other conditions involving the lymph nodes will point to the cause and establish the diagnosis of lymphedema.If the cause of swelling is not clear, other tests may be carried out to help determine the cause of limb swelling. There is no cure for lymphedema. Treatments are designed to reduce the swelling and control discomfort and other symptoms. Compression treatments can help reduce swelling and prevent scarring and other complications. Examples of compression treatments are:Elastic sleeves or stockings: These must fit properly and provide gradual compression from the end of the extremity toward the trunk.Bandages: Bandages that are wrapped more tightly around the end of the extremity and wrapped more loosely toward the trunk, to encourage lymph flow out of the extremity toward the center of the body
Pneumatic compression devices: These are sleeves or stockings connected to a pump that provides sequential compression from the end of the extremity toward the body. These may be used in the clinic or in the home and are useful in preventing long-term scarring, but they cannot be used in all individuals, such as those with congestive heart failure, deep venous thrombosis, or certain infections.Manual compression: Massage techniques, known as manual lymph drainage, can be useful for some people with lymphedema.Exercises: Exercises that lightly contract and stimulate arm or leg muscles may be prescribed by your doctor or physical therapist to help stimulate lymph flow. Surgical treatments for lymphedema are used to remove excess fluid and tissue in severe cases, but no surgical treatment is able to cure lymphedema. Infections of skin and tissues associated with lymphedema must be promptly and effectively treated with appropriate antibiotics to avoid spread to the bloodstream (sepsis). Patients affected by lymphedema must constantly monitor for infection of the affected area. In affected areas of the world, the drug diethylcarbamazine is used to treat filariasis.Primary lymphedema cannot be prevented, but measures can be taken to reduce your risk of developing lymphedema if you are at risk for secondary lymphedema, such as after cancer surgery or radiation treatment.
The following steps may help reduce the risk of developing lymphedema in those at risk for secondary lymphedema:Keep the affected arm or leg elevated above the level of the heart, when possible. Avoid tight or constricting garments or jewelry (also avoid the use of blood pressure cuffs on an affected arm).
Do not apply a heating pad to the affected area or use hot tubs, steam baths, etc..Keep the body adequately hydrated. Avoid heavy lifting and forceful activity with the affected limb; but normal, light activity is encouraged. Practice thorough and careful skin hygiene. Avoid insect bites and sunburns. Lymphedema cannot be cured, but compression treatments and preventive measures for those at risk for secondary lymphedema can help minimize swelling and associated symptoms. As mentioned above, chronic, long-term edema that persists for many years is associated with an increased risk of developing a rare cancer, lymphangiosarcoma. Many hospitals and treatment centers have support groups for people dealing with specific chronic conditions. Your health care practitioner may be able to direct you to a local support group for those with lymphedema.The National Lymphedema Network (NLN) (http://www.lymphnet.org/) is a non-profit organization founded in 1988 to provide education and guidance to lymphedema patients, health care professionals, and the general public by disseminating information on the prevention and management of primary and secondary lymphedema.
I cannot diagnose since I am not a physician, and I have not seen your husband, but please let me suggest that what you have described sounds like he has phlebolymphedema, an overload of his lymphatic system because his venous system is compromised. He should be seeing a phlebologist (vein doctor) for a workup on his venous system, particularly since he has had a major vein harvested for his bypass. Once he has been cleared by his phlebologist, he should be seen by a physiatrist and/or a qualified and certified lymphedema therapist for treatment and fitting of an appropriate compression garment. And yes--he must lose weight.
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