BACKGROUND: Lipedema is a rare disease that causes severe swelling, usually occurring in both legs and the abdomen area. No one yet knows what causes this disorder. There are two main stages of lipedema that track how intense and large the swelling and pain progress. In the first stage, the skin remains its normal color and softness but the subcutaneous tissues will begin to have a spongy, rubber-like feel. In the second stage, the subcutaneous tissues toughen up, skin color will change in the lower legs, and discomfort will set in. It is usually only found in women but can still possibly occur in a man. Lipedema is caused by fatty tissue abnormally forming in the affected areas. While at first it only creates cosmetic concerns, many times the disease will intensify and cause pain. The excess fat created by lipedema usually spreads to the ankles, but doesn't progress from there to the feet. There have also been a few reported cases of lipedema occurring in the arms. (Source: www. lymphedema-therapy.com)
TREATMENT: Though diet and exercise can make you thinner on top, the lipedema-affected lower half will unfortunately stay the same. Not only is diet and exercise ineffective on lipedema but many surgeries are as well. Currently, the most common treatment to ease the pain caused by lipodema is called complete decongestive therapy, which includes manual lymphatic drainage and compression on the legs. This treatment greatly helps relieve some painful symptoms. (Source: www.webmd.com/women/guide/lipedema-symptoms-treatment-causes)
NEW TECHNOLOGY: There may now be a way to decrease the effects of lipedema. A new surgery has been developed by NYC cardiovascular surgeon Dr. David Greuner, which involves injecting a liquid solution into the legs that numbs the area and reduces blood loss before unwanted fat is removed. This new surgery is known as tumescent lymph sparing liposuction and is believed to be the only truly successful long term treatment for lipedema. This procedure has produced promising results in the reduction of pain caused by lipodema and lowers the need to seek other therapies like compression. Dr. Greuner says that lipedema is a genetic issue that has multiple factors including hormones and external stress. Lipedema often starts in the late 20's and 30's and is often initially mistaken for obesity, but is instead a disorder of fat tissue. Although a generous amount of slimming is apparent soon after the procedure, swelling often masks the full effects initially. (Source: Dr. David Greuner)
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David Greuner, M.D., Cardiovascular and General Surgery at NYC Surgical Associates.
What are the concerns of doctors who are not using this procedure and why aren't they using this procedure?
Dr. Greuner: There is a lot of interest in this procedure now among the American Society of Plastic Surgeons as well as the Society for Vascular Surgery this year and I think the main issue causing the lack of lipedema treatment is the lack of knowledge of the diagnosis. Doctors are not treating it because of a lack of education about the condition. While it has been treated for years in Europe, here in America it is a relatively new condition in the medical community.
Over the last few years, due to many factors, including the availability of patients to seek out and choose their medical providers, there's been a huge change in medicine from treating only "objective" diseases which are things that you can only see like tremors, hernias, etc, to also focusing on conditions that the affect quality of life, like lipedema, chronic pain, venous disease, etc.
I feel that there has been a huge change, a large part of which is based on patient empowerment and the paradigm shift from only disease treatment to treatment of the total patient. Treatment of the "whole patient" also encompasses quality of life issues and patient satisfaction, both with their medical treatment and the how they receive it.
I think that's part of the reason that over the last 10 years, a lot of diseases like lipedema and venous disease, that do not cause death or dismemberment, but significantly affect quality of life, will be recognized with more and more significance.
Who funded the study? Is there a study associated with it?
Dr. Greuner: There are a few studies associated with lipedema, mostly abroad. I am not aware as to the definite details regarding funding. The most common of these reports are case reports because you need to have a large amount of volume to produce a randomized clinical trial.
Patients with this diagnosis are not really great for randomized control studies because everybody wants to get treatment, and the difference between treatment and no treatment is very drastic. In addition, the actual volume of patients being treated is not really that significant yet surgically, especially in the United States, so most of the studies have been independent case reports.
Are you directly or indirectly compensated by the manufacturer for your involvement?
Dr. Greuner: I'm not compensated by anyone except for patients who are third-party payers, and for performing surgery only.
Will your hospital or organization benefit financially by this?
Dr. Greuner: No.
Would you use this procedure, product or drug if you were not compensated?
Dr. Greuner: Absolutely.
This condition is unbelievable because a lot of women who are dealing with this thought they were just heavy and could not understand what was going on with their bodies.
Dr. Greuner: Yes there is a big movement politically going on with this. These women – which comprise approximately 11% of the female population that thought they were just basically genetically condemned are really not, they have an actual disease that is treatable. They want to get the word out. I am speaking at a large meeting in September about it this year.
Talk about this condition, why is it that we really don't know about lipedema?
Dr. Greuner: Lipedema is one of those diseases that affects lifestyle quality of life dramatically but rarely will someone die from it. Because of the way patients look as a result, many physicians were shrugging it off as standard obesity in the past, which it is not.
Just because a disease has untoward cosmetic side effects, does not mean that it should be relegated to a list of "non-important" diagnoses. Take for instance, cleft palates. This is a significant cosmetic problem, but has a definite and important functional disturbance as well. The situation is the same.
How bad can lipedema get for a patient?
Dr. Greuner: Lipedema can get so bad that the patient is basically bed bound. It gets from the point of minor life disturbances to severe limitations in mobility were they're unable to really walk without pain.
Is it life ending?
Dr. Greuner: It's not life ending so lipedema is not a disease that's going to kill you. Really it's a disease that's going to make your life extremely difficult, unpleasant and that has a large impact on people. Immobility as a result of lipedema can kill you, over time.
You can't diet it away? You can't stop eating salt for example?
Dr. Greuner: No, the fat cells in lipedema are dysfunctional; they tend to be localized in certain areas of the body so it's not uncommon to see a woman that has a very thin torso and a very large lower body. That's very typical of lipedema. There's women bordering on anorexia and they still had this massive weight gain in the lower part of the body because these fat cells are not responsive to normal stimuli. I also see the opposite in my practice, women that are so significantly impaired due to pain, that they become obese as a result of their lipedema.
And this is something that can develop in a woman at what age? I understand that 11 percent of the female population is dealing with this.
Dr. Greuner: Yes.
When do various levels of this begin? When is the onset?
Dr. Greuner: It can onset anywhere from before puberty to later in life but the vast majority of women have the age of onset around their late 20's into their early 30's. That's when they start noticing some sort of different morphologic change in their body that separates them from what they looked like before and becomes very noticeable from a cosmetic standpoint. Typically over the next five to 10 years it gets to the point where it affects their limitations in mobility and brings with it a significant amount of pain.
The procedure that you do is pretty much liposuction. How effective is it and what kind of outcome can people expect?
Dr. Greuner: They can expect a very good outcome actually. We are using liposuction, but it is a very specialized form of it in order to preserve all healthy tissue while removing diseased tissue. The way I like to describe it is very refined meticulous liposuction. With plain liposuction you don't have to be that careful of tissue underneath. There are a lot of tissues that people don't realize are very important and are particularly important in patients with lipedema or lymphedema. They are the bridging blood vessels, veins, arteries as well as lymphatic channels that drain the skin and fatty tissue on the way to going back into your circulation. In normal patients these things aren't that important but with patients with an inordinate amount of soft tissue like lipedema patients, it's very important. In fact if you disrupt this network of very fine, almost invisible blood vessels and lymph vessels you can actually cause a tremendous amount of pain, swelling and delayed feeling for these patients.
Does it work for lymphedema? Does this procedure work for that as well?
Dr. Greuner: That all depends. There are a few studies that have to be done first. One's called the lymphoscintigraphy which works for lymphedema and it's an alternative to traditional debulking surgery which is a radical resection of the lymphedema tissue. I have done that procedure on a significant amount of these patients with good results but you have to really select them properly.
Once you remove the fat through this process, does it come back?
Dr. Greuner: Lipedema fat eventually will come back with time so with a large proportion of disease we can't remove all the lipedematous fat. That's not possible, but we can significantly decrease the burden or put these patients back to the disease state they were at maybe 10, 15 years prior. For most patients it's a progressive disease so if you put them back to where they were 15 years prior, they can really get a significant amount of benefit from that. That coupled with the fact that you're removing the effect of them developing lymphovascular disorders later down the road is a significant benefit. Lipedema is a soft tissue disease and being such, it eventually will compress the lymph structures and the vascular structures later down the road when it becomes significant enough. By removing the lipedema earlier on, you're also resetting the clock on their ability to compress those structures which will reset its ability to cause lymphedema and also venous insufficiency later down the road.
So do you think they may have to have another operation?
Dr. Greuner: It's a possibility, but usually when you resect a significant amount of the fat most patients do very well for a long period of time. We don't really have enough studies to see what our 20 year results are. This is still a fairly new procedure. What we do know is the patients that have had the procedure are doing very well acutely and even several years out.
What about removing toxins and stuff from your body. Does that prevent it from happening?
Dr. Greuner: There aren't really toxins with lipedema; it's just dysfunctional fat. What you're really trying to do is remove the fat that causes its problem by compression of tissue, compression of nerves, compression of veins and compression of lymphatic channels. You want to remove the compression effect. By removing the fat, you remove the compression and the patient gets better and everybody is happy.
And the body flows normally.
Dr. Greuner: Exactly.
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