The Truth About Lipedema

Announcer (00:00):
You're listening to The La Jolla Cosmetic Podcast with Monique Ramsey.

Dr. Salazar (00:05):
Welcome everybody to La Jolla Cosmetic Surgery Podcast. I'm Dr. Hector Salazar. I'm a board certified plastic surgeon here in La Jolla Cosmetic, and today I'll be standing for Monique, Monique Ramsey. So she is out, but today we have a very, very special guest. So I'm going to start giving our audience a clue of what we are going to be talking about. And sometimes there are patients or potential patients that feel that they are in their ideal weight or they feel that they eat healthy and they feel that they exercise appropriately and sometimes even more than what's needed. But still they have certain areas of stubborn fat and it's beyond stubborn. And actually it has been with them either throughout their life or it has been or started accumulating during an important hormonal stage or an important hormonal change. So particularly the areas that I'm talking about, and it's not limited there, but it's their arms, their thighs, their lower legs, and sometimes even their ankles. There is a condition that it's pretty much underdiagnosed or self-diagnosed, and that is called lipedema and lipedema. Millions of women have lipedema and they don't even know it. On today's podcast, we have a very special guest, as I mentioned. Her name is Linda Anne Khan, and she is a lymphatic drainage massage therapist, but she is a world authority in Lipedema. Linda, welcome.

Linda Anne Kahn (02:03):
It's an absolute pleasure. I'm very excited to be on this podcast with you talking about this subject that's so dear to my heart.

Dr. Salazar (02:11):
Thank you so much for being here. And Linda, tell us about your background and tell us how is that you became a specialist in Lipedema treatment?

Linda Anne Kahn (02:20):
Well, Dr. Salazar, I've been in the field of integrative health for over 40 years, and I graduated as a lymphedema therapist in 1992 in Austria. And while I was there, professor Hildegard Weinger, who was my instructor, she's now 95, she diagnosed me with stage one lipedema. Nobody knew much about this at that time, and she had shown us so many pictures of really large people, and I wasn't that way woman. Well, I had stage one and so I started working a lot with patients after cancer and lymphedema, but then I realized there were more and more people coming into my office who had the similar condition to what I had. And then because I had struggled so much with this, I started specializing in this. It was so passionate about it that more and more people were coming. And so the field is growing and more and more recognition, thank goodness is being laid on this condition called Lipedema.

Dr. Salazar (03:32):
And Linda, you know that my practice has also been touched by you as we started working and we were sharing this with the audience for so many years with patients for different reasons, for different techniques in terms of liposuction, high definition liposuction, regular liposuction. And as our audience is going to see, we play different roles in the treatment and management of lipedema and the role of plastic surgery in a very wide holistic approach. You'll see that it's a small role, but in reality it generates a lot of impact. But the more I learn about lipedema and the more I interact with patients treating this condition in a holistic way, it's very, very important. So I feel Linda, let's start from the beginning. Please tell us what is lipedema?

Linda Anne Kahn (04:31):
Well, lipedema is a chronic condition that affects mainly woman and you recognize it as an uneven deposition of fatty tissue. Very often, but not always. The top part of the body will be smaller than the lower part of the body, so the hips will be big. There could be cuffs on the arms, cuffs on the legs, as you were talking about before. And unlike regular fat, lipedema, fat does not respond in a regular way to regular exercise and diet, and it's very painful. We know that there is a genetic component. We also know that estrogen plays a role, which as you were saying, it manifests usually at times of hormonal changes, can be puberty, can be pregnancy, can be hormonal, changes in problems, and then menopause. So the exact pathophysiology of lipedema is not known yet, but we are learning more and more. We do know that there is a lot of inflammation. Many of the patients are overweight and there also can be lipedema with obesity. And women are very frustrated and it can really affect the emotions.

Dr. Salazar (05:55):
To answer the what causes lipedema. We do not know. We do not understand that etiology, that pathophysiology. But what we are actively learning are the different contributors, the different triggers, the different areas and the manifestations of this condition. But still, we do not know the true etiology of this.

Linda Anne Kahn (06:19):
That is correct. We know that there's an inflammatory response, so there's inflammation. We even know that there are macrophages that are there and a lot of inflammatory cytokines. We know we learning more and more through research, but the exact pathophysiology, it's unfolding. I get research almost every week, some new research that's coming,

Dr. Salazar (06:41):
Lots of information. And how does someone know if they have lipedema?

Linda Anne Kahn (06:48):
If a woman, and it's largely a woman's disease, and if a woman is dieting and exercising as I did when I was younger, and they're areas that are just not going away. The legs look heavy, they feel heavy, there's pain that's just not going away and they're doing everything. And if they have that cuff, which could be in the arm or the legs, there could be a sign that there is something more. I didn't know what was wrong with me. I was exercising and dieting and these legs were still heavy.

Dr. Salazar (07:24):
Why would you say that is so often mistaken or so often misdiagnose either for simple weight gain or even sometimes obesity, and what impact that generates on the patient?

Linda Anne Kahn (07:38):
That's a really good question because many patients are overweight or obese in different stages and the doctors do not know. Most of the doctors, we are trying to educate everybody, but most of the doctors don't know that they are such a thing as lipedema. So they look at the patient and say, oh my goodness, you overweight. And they may be obesity in addition to the lipedema. And then the doctor just says to them, you need to lose weight, you need to exercise more. Well, the patient's been doing that for so long, so it's very frustrating. They can get depressed. They feel that they are not heard, and we hear that every single day. So we need to create more of an awareness. So the patients then feel it's their fault and they feel very ashamed. So we need to understand the difference between obesity and lipedema. And actually what's been researched, the fat looks completely different to obesity, fat,

Dr. Salazar (08:40):
And that we see that during even our liposuction sessions with those patients, we see that the fat looks completely different than the regular liposuction fat coming from, as you were saying, from obesity. Some patients might say, well, maybe I don't have what I have is cellulite or is cellulite included in lipedema or cellulite is something completely different?

Linda Anne Kahn (09:06):
Well, they can be cellulite within the lipedema in the stage one patients. And I saw somebody the other day and she had dimples. So that's really what the signature is of cellulite. There are dimples under the skin and it comes because the connective tissue is pulling on the fat beneath the skin, and there's an accumulation of toxic waste in the connective tissue, and we say it's like an orange peel, but lipedema is different. It's a disease process and the tissue often becomes fibrotic. It's painful and it's progressive. So it is a progressive disease. So while cellulite may bother people, cosmetically lipedema can really affect the function and the comfort and long-term health and the way you walk and pain. So it's really, really different. And we feel lipomas and fibrotic tissue and sometimes little grains of rice under the skin with lipedema.

Dr. Salazar (10:08):
That's very, very easy to identify and differentiate for a clinician that has that knowledge. And I feel that as you're pointing out, if a patient is misdiagnosed or has been misdiagnosed, not only once, maybe twice or three times, even going to different clinicians, not only the patient feels ashamed, but also the patient takes the blame.

Linda Anne Kahn (10:32):
They do. Because when they find out that they have this condition, this disease, I have heard women over and over again, it's not my fault, and they cry. They're crying actually out of joy because they know now what they have and that it's not their fault and that there are things that can be done.

Dr. Salazar (10:53):
Absolutely. And now let's talk about or differentiate lipedema from something else. What about lymphedema? So lymphedema is a completely different entity, and why don't you tell us, Linda, what are the difference in terms of signs and can it be concomitant meaning happening at the same time or are two completely different things?

Linda Anne Kahn (11:15):
So lymphedema is an abnormal, sorry, the lymph system is not functioning as it should due to surgery. Can be from breast cancer, can be from ovarian cancer, melanomas when lymph nodes have been removed and there's been radiation. So it's an abnormal swelling of a limb. Usually one can be an arm or a leg, but it can be in other areas as well. It's different from lipedema because it's usually one limb or one side, whereas lipedema is both. It's bilateral, however, we are finding through ultrasound what the doctors are doing, lymphatic dysfunction in lipedema patients. And then if lipedema is left untreated and you get more and more of an accumulation of fluids and fatty tissue, it can become lymphedema. And we call that lipo lymphedema. We used to call it stage four. They're different stages in lipedema. So it's important to distinguish the two. And it's also important to treat the lipedema in earlier stages if possible. Hopefully there's early diagnosis so we can reduce the risk of getting lymphedema.

Dr. Salazar (12:38):
And now that you are touching base on the stages, because I think this is really important as we were talking about that this condition tends to be progressive. Why don't you touch a little bit or briefly on the different stages for our audience, this is something that you might start to think or infer that maybe I'm a stage one, maybe I'm a stage two, or maybe I'm a stage three or four. Why don't you share with us a little bit the classification?

Linda Anne Kahn (13:06):
So stage one, I have stage one lipedema and I was able to successfully arrest it. It did not progress, but I am extremely disciplined in the nutrition and in my exercise more than anybody that I know, but I can be a cheerleader for people. But stage one, I had a lady the other day with stage one. If you had to just look at her, you wouldn't know there's anything you wouldn't know, but you talk to her. I've had so much pain. I've had pain in my legs ever since I can remember. It feels hard around my hip area. And indeed she had some fibrotic area. She had very, very early stage lipedema. Stage two, there are already some changes. You can really feel fibrosis and maybe more lipomas. Stage three, there are lobules already starting to form. And what we didn't talk about is often there is a lump, a lobule on the inner knee, we didn't talk about that.

(14:07):
Or on the lower leg, on the calf, there is a lobule over there. So those are starting to appear already in stage three. Maybe the patient can't walk very well, her knees may be sore. Many of them have come were really having knee surgery at that point. They've had a lot of adipose tissue, they're not walking properly. There's usually hypermobility with that. And then stage four, which we don't call it stage four anymore, but it is, that is the progression that lipedema now has become lymphedema and your lymphatic system is just not functioning as it should. And then there'll be skin changes and more lobules. We don't ever want to get anybody to that stage.

Dr. Salazar (14:53):
Right as soon as it can get detected on time, diagnosed on time, treated in all different areas. And as I was saying, this is a true holistic approach for treatment of lipedema. On our side, the way we treat lipedema is through surgery. But as we were talking about, that's only one little, one small part about the entire management. And the way we treat it with liposuction is remember liposuction, what it's going to do, it's going to remove the fat, it's going to scoop the fat out, the fat that has been affected with this condition. Once you remove that fat, that fat, most likely it's not going to come back. You remove the fat that it's really hard to eliminate because it's already fibrotic, because it doesn't matter if you are at your optimal weight, it's still there. And that fat, the presence of that inflammatory fat is preventing the patient from having or functioning at a normal level.

(15:55):
So we remove the fat with special techniques of liposuction oriented towards preservation of the lymphatic system, keeping our liposuction cannulas at a deeper level, not to affect the lymphatics, doing not minimal torquing when you're doing your liposuction using special cannulas that are more benign with the tissues. And also, as we know when we do liposuction, you want the tissue to snap back or shrink. These patients have had their skin stretch for a longer time and for their tissue to go back, there's nothing better than adding high radiofrequency energy that we deliver through a gas. And that's called renu vion. And the past used to be called J plasma, but that is the surgical part. And I know that we've had discussed this before, but since we have Linda here, so let me ask you this. I get so excited about this part. Linda, how do you treat Lipedema patients as a massage therapist? But at the same time as an expert in this topic.

Linda Anne Kahn (17:02):
I am a board certified massage therapist, but I am an internationally certified lymphedema therapist.

Dr. Salazar (17:09):
Correct.

Linda Anne Kahn (17:09):
So as a lymphedema therapist, I concentrate on supporting the lymphatic system. And I want to help the lymphatic system reduce inflammation and improve mobility. So I do that with manual lymph drainage, which is actually a gentle, specialized massage that helps to reduce fluid and helps with heaviness. But it's not just a feather like. There is still, there's a pumping action that takes place.

Dr. Salazar (17:40):
And Linda, sorry to interrupt you here, but let me share this with you. During medical school or my general surgery training, which encompass five years of my life and then plastic surgery, another three years, you don't learn about lymphatic massage. And it is not until you really interact with someone who's not only certified but extremely knowledgeable like you, that you realize the importance and how it is done appropriately. And if we don't know about this civilians, patients out there, they don't know about this. And as a matter of fact, when we mention lymphatic massage, either after surgery for lipedema or for other surgeries such as abdominoplasty, tummy tuck, or regular liposuction or high definition liposuction, patients are very afraid because they say, oh my god, I don't know if they imagine that lymphatic massage probably is massage therapies like stumping the patient with their feet. They really think that it's going to be very deep tissue and that it's going to be, and it's not like that, right Linda?

Linda Anne Kahn (18:44):
It's not because the lymphatics are just below the surface of the skin. So our goal is to move and manipulate and help the lymphatics to pump beneath the skin. So right after surgery, we go really gently. If there is any fibrotic tissue either after surgery or before we go a little bit deeper. But it's never for pain, absolutely not. That is not what manual lymph drainage is. And so it's a specialized, we also calm the nervous system. When manual lymph drainage is done correctly, it lowers the stress hormone, the sympathetic nervous system and brings up parasympathetic, which induces deep, deep relaxation, which is really good to calm as we know. We just spoke about how upsetting and anxiety provoking this condition can be. So I do that and then I often combine with myofascial release laser therapy, lymphatic cupping, and then we work with compression therapy. I help the patient to see what compression garments they need, skincare if they have lymphedema as well. And then I instruct and educate patients in depth about self-care and lifestyle prior to and after surgery. We want the patients to be in as little an inflammatory condition as possible prior to having the surgery if possible because I believe that the outcome can be even better of the surgery.

(20:17):
And when a patient comes to me, I will tell them, this is what I can do for you. This is what you can do. But if you want to get rid of these lobules, it can be reduced through what we are doing, but you are going to need surgery in those areas. And so I help to support them, aromatherapy, breathing techniques, foam rolling and personalized exercises to improve the circulation and reduce the pain. When you do the surgery, you're getting rid of, I call it this active estrogenic fat that's coming out. And you'll be able to walk better. You'll feel so much better. The pain will be reduced. Everyone has reduced pain, but you still have lipedema, so you want to play a role. So get used to this from the beginning, take part in this and own it, and then you can get fantastic results.

Dr. Salazar (21:13):
Exactly. Linda, because that's exactly where I was going. You were talking about lifestyle modification, you were talking about continuous massage, continuous compression, exercise it complete. So would you say that it's an ongoing treatment?

Linda Anne Kahn (21:29):
It doesn't have to be ongoing forever after surgery? We usually will see patients twice a week and in some cases three times a week it, depending on how they're doing in what stage they are. It might be for three weeks, it might be for four weeks after that. Many of our patients do come in for maintenance. But I help patients with self-care to keep to maintain this fabulous surgery.

Dr. Salazar (21:56):
Perfect. And I know that it's not only about everything around activity, surgery, massage, lifestyle, but there's one key component, and you are extremely knowledgeable about it so much that you co-authored a book called Lymphedema and Lipedema Nutrition Guide. Can you explain to us what is that about? And please don't forget to mention, where can we get the book? I mean, I do have my copy, but.

Linda Anne Kahn (22:33):
You can get the book on Amazon. I have it in my clinic of course, but you can get it on Amazon. And I'm very honored to have co-authored this lymphedema and lipedema book with Dr. Karen Herbst and with Dr. Emily Iker and Chuck Ehrlich, who's a researcher, and we were the main four authors. We concentrate a lot on an anti-inflammatory lifestyle. There are many, many eating plans that are for lymph lipedema, but we concentrate on anti-inflammatory. A lot of patients are doing keto, but the anti-inflammatory, you can do it any time, anywhere you can go to restaurants. It's very easy to manage. And in the book, we also have practical strategies and we talk about what to eat most of the time, what to eat some of the time, what to try not to eat ever. And I recommend this book for practitioners and for patients. And a lot of times patients come in and say, oh, I have your book. Sometimes they found me through the book or they see the book in my clinic. Oh, I have that book. So we're very, very happy that we could reach out to people because nutrition is a very important component of this disease.

Dr. Salazar (23:47):
It's absolutely key nutrition in managing lipedema. Let me share with you a recent story of a patient that I evaluated her last week for liposuction for Lipedema, and she was stage two. What she did is she grabbed her phone and then she shows me a picture and she says, this is me a year ago. And I was stage three and I went from stage three to stage two with taking this holistic approach and making lifestyle modifications and wearing her compression and exercising and having an anti-inflammatory diet. She was so proud about it, and I was so fascinated because I told her, you have given the first step and then you just made my part of the treatment much easier and it's going to be much easier for you, and then your recovery is going to be so much better. And then the next stage in life for her was going to look so much brighter. Linda, I don't know if you can share a patient's story that you have fresh in your mind or that you think is very, very impactful with our podcast audience.

Linda Anne Kahn (25:04):
Well, I have lots of them, but that is a wonderful story because conservative treatment can make huge changes. I see it all the time with my patients. So I had a patient come to me a couple of months ago, several months ago. She was postmenopausal 65 years old, crying on my table. She came in to confirm is this lipedema? She'd been reading about it, and she had suffered her whole life. Her legs were large, her lower legs were so big calfs when she was younger, she couldn't participate in activities, she couldn't run, and then she didn't want to show her legs. She was ashamed.

(25:44):
She didn't want to put a swimsuit on, this is the story and really just hating everything. And then she started hearing about lipedema, which I'm so happy that there's so much more awareness. So she came in and I educated her. We did manual lymph drainage. I worked with her actually for about five months, helped her. She reduced the inflammation, she did reduce weight. The bulges were still there, but they were smaller. She then did have surgery and I prepared her for the surgery. I worked with her after the surgery and now she's having maintenance and her life has just changed. And of course the patients will always say, why did I not know about this earlier? Why did I not know about this sooner? So that's why I'm so excited that you are making this public, that you are creating more of an awareness of this so that people don't have to suffer and wait until they're 65 to be on my table and then on your table and we can do something about it much, much earlier.

Dr. Salazar (26:51):
Awareness, I think it's key. The other day I have a social group. I mean, what gets us together is medicine, but we never talk about medicine when we get together because it is a pure social group. And in that group, the only condition is that we don't have any specialty repeated. So there is a gastroenterologist, there is a primary care doctor, there's a radiologist, there is an ER physician, an oncologist, cancer doctor, plastic surgeon, that's me. And we never ever talk about work, but one of them, a general surgeon, asked me about lipedema and he said, Hector, I received his referral by a primary care doctor. I thought as a general surgeon, this is not for me. I sent the patient to a vascular surgeon. The vascular surgeon returned the patient to me. I returned the patient to the primary care doctor. And then turns out that the other day I saw one of your posts and I became more and more interested and I knew that I was going to see you. So I wanted to ask you about it. And as you're saying, creating that consciousness, I think it's important. But on your side, what would you like? On one hand, more doctors and on the other hand, more patients to know about lipedema?

Linda Anne Kahn (28:19):
It's actually both, and it's very important for patients to get an accurate diagnosis and go to a practitioner, either a medical doctor or you plastic surgeon or vascular who does understand this condition. Many people do not. That's the challenge. And then I encourage women to join support groups. There are lots of Facebook groups. You can learn a lot from that because knowledge is power and joining a team that listens and supports makes all the difference. So I would love that more physicians are aware of this condition.

(28:57):
For many years, I spoke at the American Venous and Lymphatic conferences where we had a team presenting on Lipedema, or they called it Lipedema in Australia, in England, by the way, presenting on lipedema so that the vascular surgeons could understand, and vascular surgeons see phlebo, lipo, lipedema. They see a combination because many of the lipedema patients do have vein issues and vascular issues. So we really need to create this awareness, and that's my passion to help women like that. You mentioned how educated this patient, our patients are so self-empowered. They're looking, they're reading, they learning. I love it. It's fantastic.

Dr. Salazar (29:40):
Linda, else that you would like to add or you would like our audience to focus on more? Any resources, anything else that you would like to share?

Linda Anne Kahn (29:52):
Well, I just would like the doctors to understand that this is not rare. It's not a rare disease. It's a misunderstood disease. And that 11% of women do suffer from this, and it's barely recognized. And I wish the patients would know it's not their fault. It's not about willpower and diet and that they are effective treatments and surgeries and both, and a growing community of experts that are ready to advocate and to help.

Dr. Salazar (30:25):
That's an excellent message, Linda, because that's what I'm about to say and tell our audiences if they still have, I mean, if they're listening this podcast and they either have more questions or they feel identified with some of the signs and symptoms they might be considered, patients with lipid might not. But I think that that's the reason why it's important to contact a provider that understands and that has experienced treating this. Please, anybody out there in our audience that is listening to this podcast, feel free. We are going to put down here the contact information for Linda. Again, she has a lot of experience, great holistic approach. If someone feels has been diagnosed and feels that they are ready to give that step, have surgical treatment, or if they're doubting about it, but they want to talk more about it, you know how to get ahold of us at La Jolla Cosmetic links to this podcast, other podcast and our social media.

(31:32):
You're going to be able to find them here. Also, just to remind, to remind our patients what you find online in terms of our picture gallery. Some patients are very self-conscious about it and are very protective with their body image, and they don't agree for their pictures to go online. But sometimes, and most of the time they say yes to be able to look at those pictures when you are in our office. So we have a gallery of pictures that's much bigger right here that we can intimately share with patients that are seeing for a consultation. So we would encourage patients that have this condition and are considering surgery as well to give us a call, send us an email. Well, Linda, thank you so much. This was very enriching. We keep learning more and more about this condition. You are an invaluable asset and a true jewel to have you here in San Diego, and for patients that have lipedema, Linda Anne's clinic Beauty Clinic is here in San Diego, has been Linda before more than 30 years. Am I correct?

Linda Anne Kahn (32:43):
It's over 40 years.

Dr. Salazar (32:45):
There you go. Exactly.

Linda Anne Kahn (32:46):
And I've been treating patients with Lipedema for over 30 years.

Dr. Salazar (32:51):
You heard it here. Please don't hesitate and picking up either the phone, email, go online, give us a call, establish a contact. Thank you so much for listening to La Jolla Cosmetic Surgery Podcast, and we will meet on our next podcast. Thank you, Linda.

Linda Anne Kahn (33:09):
Thank you.

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