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Friday, August 21, 2015

Lipedema, Part 5e: Treatment Options Summary

Image from lipedemaproducts.com 
We have been doing a long series about Lipedema, sometimes known as "painful fat,"  "big leg," "riding breeches," or "two body" syndrome.

In lipedema (also spelled lipoedema), the fat cells in certain parts of the body experience overgrowth and swelling. It results in an abnormal accumulation of fat, particularly in the lower half of the body; often the arms are affected too.

As we have discussed, lipedema is rarely recognized by doctors, despite being discovered 75 years ago. Often it is thought to be simple obesity, or it is confused with "lymphedema," the accumulation of lymph fluid in the interstitial areas.

In Part One of this series, we discussed the typical features of lipedema and how differentiate between lipedema and lymphedema.

In Part Two of the series, we discussed how lipedema progresses, the different stages of progression, and why it's so important to be aware of lipedema

In Part Three of the series, we discussed the different types of fat distribution patterns, looked at some pictures to illustrate type and stage of lipedema, and detailed how lipedema is diagnosed.

In Part Four of this series, we examined possible causes of lipedema, as well as medical conditions often associated with it.

Now, in Part Five, we are discussing possible treatments for lipedema in detail. Because we want to give more detail about each option, we broke the treatments into several sub-posts:
      In Part Six, we will discuss practical ways to deal with and live proactively with lipedema. Eventually, I'll tell my lipedema story too, and someday I'll discuss lipedema and pregnancy considerations.

      But today, let's summarize what we have learned of the various lipedema treatment options.

      Dealing with a New Diagnosis

      First, getting a diagnosis of lipedema and/or lipo-lymphedema can be overwhelming emotionally. It's hard to know what questions to ask, which treatments to consider, or where to go for answers.

      Sarah Bramblette, a lipedema activist and advocate who has been a great voice for education about this condition, discusses what to do when you are new to the topic or diagnosis of lipedema. Read her really helpful article here.

      Remember, even when lipedema is recognized and correctly diagnosed, patients are often not given adequate information about it or treatment for it. You will probably have to be very proactive about educating yourself about this condition and your treatment options. 

       If you need help educating your care provider about lipedema, try printing out some of these materials:
      • Lipedema Brochure from fatdisorders.org - excellent quick-glance brochure, with clear pictures illustrating the progression of lipedema through the classic four stages. Start with this
      • NHS informational page on lipedema - basic introductory informational page on lipoedema from the National Health Service in the United Kingdom
      • Lipedema Description Page from fatdisorders.org - a more in-depth look at lipedema's symptoms, treatment choices, and diagnosis differentials, with study references (download it to another file and edit it to make it easier to read)
      • Lipedema History, Stages, and Types - short informational article from liposuction specialty center on the history of lipedema's diagnosis, with a quick summary of its stages and types
      • Fife 2010 article on lipedema - educational article, written for provider, on lipedema, its stages, its progression, diagnosis differential, etc. Full text freely available, with helpful pictures showing advanced stages and differing presentations. Does have some weight bias; advocates "rigorous weight control" and seems to suggest bariatric surgery for some cases
      Because most doctors have not heard of lipedema as a condition, they can respond in varied ways to a patient who raises this concern. Although some respond very helpfully, many women experience resistance from their providers.

      Some providers use a deny-or-ignore approach. Some want to completely deny that such a condition exists, and may even accuse the patient of "making excuses for being fat." There's not much you can do with these providers except find a new one. Don't let them discourage you so much that you avoid care or don't pursue treatment.

      Some providers are sympathetic but tend to ignore the concern. They may not feel qualified to diagnose this condition themselves and aren't sure who to refer you to. Many feel stymied by the lack of ICD-9 diagnostic code (coming but not approved yet). If you have one of these providers, ask them to at least insert a note regarding lipedema under the "obesity" diagnosis in your chart. This creates a record of it and precedent for treatment if you experience complications.

      Sometimes patients are given a doom-and-gloom diagnosis that tells them that they have an incurable progressive disease, that nothing much can be done to treat it, and that they will get progressively more and more disabled with time. Don't believe these providers. There are options for treating lipedema, and there is hope that its progression can be halted or slowed. We are still in the infancy of learning about lipedema, but it is NOT hopeless.

      Some care providers diagnose lipedema readily but have an advocate-for-yourself approach. They feel too pressed for time to educate themselves about treatment options, or feel they can't refer patients for treatments because of the lack of ICD-9 code. As a result, too many people with lipedema just live with the condition instead of getting treated. That's what this series is for ─ so lipedema patients can become proactive about advocating for their treatment needs with their providers.

      If you need more information about lipedema and its various treatment choices, consider watching this video about lipedema. It's 24 minutes long and does have weight-loss rhetoric so I won't embed it here, but it also has some good basic information about lipedema. It has interviews with many of the leading doctors who treat lipedema, interviews with people who suffer with it, and information about some of the treatment options people have used for it (with an emphasis on liposuction).

      Summary of Treatment Options 

      Basically, in this series we discussed four types of treatment options for lipedema:
      • Traditional medical treatments
      • Weight and nutritional approaches
      • Liposuction
      • Alternative medicine
      What little research we have on lipedema is mostly on traditional mainstream treatments. Because lipedema was most often discovered by lymphedema doctors, many treatments come from that modality and focus primarily on dealing with edema.

      Research shows that Manual Lymph Drainage plus compression (Complex Decongestive Therapy) is very effective for lessening the worst symptoms, particularly if lipo-lymphedema has developed. This treatment is well-accepted in the medical world, and most insurance covers at least part of these treatments.

      Exercise is also very important in keeping lymph flow as normal as possible. The lymph system does not have a pump like the vascular system does, so it needs exercise to keep the lymph moving in the system. Exercise is a powerful tool, especially in the early stages to keep the lipedema minimal. Water exercise, rebounding, exercise bikes, and yoga are all good size-friendly options. Although advanced lipedema makes exercise quite difficult, it's helpful to find something that you can do to keep that lymph flowing and prevent infections.

      Weight loss is often still recommended to lipedema patients, even though lipedemic fat is quite resistant to weight loss and any loss usually returns. Anecdotally, a few women have been able to lose significant amounts of weight with lipedema long-term, but the majority end up in a long-term yo-yo pattern that tends to increase weight, not decrease it. Women with severe lipo-lymphedema are often driven to bariatric surgery because of health issues and mobility concerns, but even then, much of the weight tends to return in time and complications like nutrient deficiencies can impact quality of life.

      Although some care providers still prescribe weight loss and bariatric surgery, others simply emphasize trying to prevent further weight gain. While it is important to have healthy habits, providers need to be careful not to blame women if gain does occur. Some aspects of weight are not within our control, and lipedema flares can cause weight gain no matter how careful our habits.

      As an alternative to a weight-centric approach, some patients choose Health At Every Size® instead, emphasizing healthy habits but without engaging in restrictive eating, extreme exercise, or an emphasis on the scale. For many women who have struggled with their weight, eating behaviors, or judgmental providers, this can be a very freeing and healthy approach.

      Many lipedema websites promote special nutritional plans as a way to control lipedema symptoms. The most popular is the RAD anti-inflammatory diet, which suggests avoiding gluten, sugar, red meat, and dairy, among other things. Although promoted as the treatment of choice for lipedema, the efficacy of this diet has never actually been researched. Other nutritional plans include low-carb or paleo approaches. While some women seem to have good anecdotal results with various plans, there is a very slippery slope between these plans and eating-disordered behaviors.

      Lymph-sparing liposuction is the lipedema treatment getting the most buzz lately. Although traditional liposuction was disastrous for lipedema patients, new techniques using either tumescent liposuction or Waterjet-Assisted Liposuction (WAL) seem to show great promise. Although long-term research is limited so far, short-term research on this approach is quite promising. It shows that lymph-sparing liposuction may offer the best hope for putting lipedema into remission, lessening pain, and giving patients years of mobility back.

      Finally, some lipedema patients use alternative treatments, and many leading lipedema doctors recommend them in addition to mainstream treatments. Research is limited on alternative treatments, but some research supports the efficacy of certain herbs and supplements such as Selenium and Butcher's Broom.

      Conclusion

      Although we have no way yet to cure lipedema, the symptoms can be treated in several ways, including mainstream medical treatments, nutritional approaches, liposuction, and alternative medicine.

      And of course, you don't have to be a purist; many women mix different types of treatments. It's not unusual to hear of women using Complete Decongestive Therapy, exercise, a RAD diet, supplements, dry lymph brushing, acupuncture, and Epsom salt baths to treat their lipedema. Many hope to access lymph-sparing liposuction as it becomes more widely available.

      Whatever the approach, the point is to not take lipedema lying down. One site says:
      ...We have established an international organization to promote lipedema healing. We are in a good place. We are not waiting to die or be pushed around in wheel chairs. We are not waiting to get help from doctors who do not yet have answers. We are working with researchers internationally to begin clinical trials.
      Decide on a way to be proactive about your lipedema. Keep an open mind, educate yourself about your options, consult a knowledgeable care provider, and then be willing to experiment with the different options available.

      In time, you will find the choice that is right for you.



      References and Resources

      Resources

      *Trigger Warning: Many of these sites are not size-friendly. However, because they also contain valuable information about lipedema and its treatment, they are included here.
      Lipedema Support Groups
      Websites About Those Dealing with Specific Lipedema Treatments

      at 1 comment:

      Friday, August 14, 2015

      Lipedema, Part 5d: Alternative Medicine Treatments

      Image from Lipoedema Australia Support Society (LASS) 
      We have been doing a long series about Lipedema, sometimes known as "painful fat,"  "big leg," "riding breeches," or "two body" syndrome.

      In lipedema (also spelled lipoedema), the fat cells in certain parts of the body experience overgrowth and swelling. It results in an abnormal accumulation of fat, particularly in the lower half of the body; often the arms are affected too.

      As we have discussed, lipedema is rarely recognized by doctors, despite being discovered 75 years ago. Often it is thought to be simple obesity, or it is confused with "lymphedema," the accumulation of lymph fluid in the interstitial areas.

      In Part One of this series, we discussed the typical features of lipedema and how differentiate between lipedema and lymphedema.

      In Part Two of the series, we discussed how lipedema progresses, the different stages of progression, and why it's so important to be aware of lipedema

      In Part Three of the series, we discussed the different types of fat distribution patterns, looked at some pictures to illustrate type and stage of lipedema, and detailed how lipedema is diagnosed.

      In Part Four of this series, we examined possible causes of lipedema, as well as medical conditions often associated with it.

      Now, in Part Five, we are discussing possible treatments for lipedema in detail. Because we want to give more detail about each option, we are breaking the treatments into several sub-posts:
      In Part Six, we will discuss practical ways to deal with and live proactively with lipedema.

      But today, let's talk about possible treatments for lipedema from the "alternative medicine" world.

      Then in the last Treatments post, we will then summarize what we have learned of the various lipedema treatment options.

      Alternative Treatments

      Traditional medical treatments have not been all that successful in treating lipedema, so many lipedema sufferers turn to alternative medicine as well. Many people seem to have the best success combining traditional treatments with alternative treatments.

      These can include:
      • Supplements and herbs
      • Lymphatic Brushing
      • Acupuncture
      • Chinese Medicine
      • CVAC™
      • Vibration Plates
      • Detox Procedures
      Let's talk about each of these a little bit more in detail. 

      Supplements and Herbs

      Some doctors and advocates recommend certain supplements and herbs to help with lipedema. The three that are mentioned most often are Selenium, Butcher's Broom, and benzopyrones, but there are a host of others that are sometimes suggested as well.

      The problem is that most of these have been used to treat secondary lymphedema or chronic venous insufficiency and then this use has been extrapolated for lipedema as well. While symptoms may cross over between these conditions, lipedema is not the same as lymphedema or venous insufficiency. It does not follow automatically that treatments helpful to these other conditions will also be useful ─ or even safe ─ for lipedema. 

      Very little research specific to the use of these supplements with lipedema exists, so insert caveats. We just don't know how effective these are ─ or not ─ for lipedema. Still, some women are willing to experiment with these, so let's discuss the most common options. 

      Selenium is a trace mineral that reduces fluid retention. It is often used with people who experience lymphedema after cancer treatment. It seems to be relatively effective in helping reduce secondary lymphedema. It has distinct advantages in that it is relatively cheap and seems to have a fairly low toxicity profile unless given in high doses. 

      Limited research also suggests selenium may be helpful for PCOS and autoimmune hypothyroidism (Hashimoto's), conditions often found in conjunction with lipedema. However, a Cochrane research review found that the available favorable evidence for using selenium with autoimmune hypothyroidism was at high risk for bias, and that more neutral research was needed before forming conclusions.

      Research suggests that elderly people with the lowest selenium concentrations in their blood have a higher mortality risk. On the other hand, some research has found that people with a high selenium intake are at increased risk for developing diabetes.

      The benefits of selenium may be most marked in people with low selenium intake/blood levels, while its utility for those with normal levels is more questionable. If you are considering taking selenium, it seems logical that finding out what your selenium levels are ahead of time might be a reasonable precaution. It would also seem sensible to not take too high a dose, just in case.

      The bottom line is that we need more research on selenium and its use specifically for lipedema and lymphedema.

      Butcher's Broom is an herb (usually taken as a powdered extract in a capsule) that is thought to improve lymphatic flow. It is derived from the plant, Ruscus aculeatus. According to research, it "has been shown to bind as an agonist to alpha adrenergic receptors on lymph cells, increasing lymph fluid movement within lymph vessels."

      Butcher's Broom has been shown to be modestly effective against chronic venous insufficiency, which is why some people have theorized that it might be helpful for lipedema. Some anecdotal stories suggest Butcher's Broom may be helpful for people with lipedema or Dercum's Disease. At least one case report documents significant improvement in a lipedema patient after use of Selenium and Butcher's Broom in conjunction with compression garments and Manual Lymph Drainage therapies. However, more research is clearly needed.

      Benzopyrones (including coumarin) are a type of flavonoid that have been used with lymphedema patients. They were used outside of the U.S. in the 90s but were never approved within the U.S. They supposedly reduce vascular permeability and aid in the destruction of proteins so that protein fragments can pass more easily into blood vessels and be removed by the vascular system. In addition, benzopyrones may stimulate lymphatic activity.

      Research on the efficacy of benzopyrones was conflicting and there were significant safety concerns because of liver toxicity with long-term use. A Cochrane review felt the quality of research trials were too poor to do a meta-analysis of the research. At this time, benzopyrones are not usually used for lipedema or lymphedema treatment.

      Modifilan is a supplement that some lipedema patients report using. According to them, fat cells tend to accumulate debris and toxins, and this supplement helps detox the cells.

      Wobenzym is another supplement used by some patients with lipedema. This one is is an enzyme that is reputed to "help unclog proteins" that have accumulated in a sluggish lymphatic system. There are detox regimens available online for lipedema lymph systems.

      Curcumin, a substance in the spice turmeric (the dark yellow spice found in curries), is often used by women with lipedema because it is a potent anti-inflammatory. It has been shown to decrease blood sugar, slow or prevent the progression of prediabetes to diabetes, and decrease diabetic complications in some trials. It also may decrease arthritis symptoms and pain. However, it can decrease blood clotting so it should be used carefully if you are on blood thinners, aspirin, NSAIDs, etc.

      In addition, many lipedema patients have experimented with other supplements like horse chestnut seed extract because it has been shown to be helpful with venous insufficiency and varicose veins. Medium-chain fatty acids such as those found in coconut oil are recommend by some.

      Herbs and substances thought to have an anti-inflammatory effect often are suggested. These may include ginger root, milk thistle, brown and green seaweed, bio-rutin, cayenne pepper, and fish oil (with omega-3 fatty acids).

      Dr. Karen Herbst, an endocrinologist and one of the top lipedema specialists in the U.S., suggests that people with lipedema consider taking selenium, along with bioflavonoids like horse chestnut seed extract, pine bark extract, grape seed extract, or quercetin (found in onions). She recommends alternating types of bioflavonoids and adding a potent anti-oxidant like N-acetyl cysteine (NAC).

      Dr. Herbst also recommends strengthening the immune system; she uses cimetidine (available over the counter as Tagamet, a heartburn medicine) as an immune modulator, but notes that this can affect the liver, so liver enzymes must be monitored with its use. Cimetidine also has weak anti-androgen properties, so if you have PCOS and are on other anti-androgenic medications, beware of a possible additive effect. Because cimetidine can affect the liver, levels of other medications can also be affected, so a careful consult with a doctor is needed. As an alternative, she suggests "yeast Beta 1, 3-D glucan" to boost the immune system. Contact her directly (see link for contact info) if you'd like a personal consult to get exact recommendations for your unique needs.

      Don't forget, some of the most potent bioflavonoids are the colorful fruits and vegetables. Eating a wide variety of these every day may be a powerful help in keeping things as normal as possible. Adding a little turmeric or ginger to your foods as a spice might also help. 

      Lymphatic Brushing
      To help the lymph system work more efficiently, Manual Lymph Drainage is done by professionals. However, there is also lymph drainage which you can do at home on yourself. The home version does not replace the professional version, but the pros really encourage patients to follow up with home techniques to keep making progress between sessions.

      There are several different techniques recommended, but the most popular right now uses actual brushes. You can read more about these here and here and here.

      However, remember that dry brushing is also a trendy fad in spas to "release toxins" and "break up cellulite," and doesn't have much research proving its efficacy.

      Vibration Plates

      Anecdotally, some women are using vibration on the body to try to break up fibrotic tissue, lipomas, and "flush out toxins and extra fluid." And of course, many of these vibration plate machines are advertising how great they are for weight loss and "breaking up the fat."

      This sounds like a new variation on the old fat-vibrating machines from old TV and movie ads, so personally I am dubious about this treatment. However, the "new" versions are much less violent in their shaking and supposedly therefore safer.

      However, some research suggests that vibration can increase blood flow and lymph flow in the lower body, as well as strengthen muscles modestly.

      The Fat Disorders Research Society mentions vibration as a possible treatment for lipedema, especially for those with mobility issues who can't do normal exercises. However, they suggest that compression garments should not be worn during a vibration plate session, unlike other exercise.

      If this really does turn out to be a helpful therapy option, then it could have significant implications for those whose advanced lipedema makes regular exercise difficult. However, I'd like to see some actual research on lipedema patients before I get too excited about this one.

      CVAC™
      CVAC is listed in some lipedema materials as a possible treatment, but with few details. CVAC™ stands for Cyclic Variations in Adaptive Conditioning. It reduces the fluid in tissues by "variable patterning of different atmosphere pressures around a person sitting in an altitude simulator." Basically, people are placed in a hypobaric chamber and then rapidly cycled through different pressures designed to simulate different altitudes, using "whole body cyclic pneumatic hypobaric compression."

      This is a trendy treatment for athletes, who view it as an efficient way to increase oxygen-bearing capacity and improve performance. Many elite athletes are using it these days, and a few gyms even have these machines.

      However, it is also being used for people with chronic diseases, especially those which may not permit them to do a lot of active exercise. The cycling through of different pressures allows exercise "at the cellular level," according to the device's website. Some patients with diabetic neuropathy have reported great improvement, and it may help improve insulin resistance and sleep as well.

      There is a study on CVAC™ for people with Dercum's Disease, another Rare Adipose Disorder somewhat similar to lipedema, with suggestions that it might be helpful for people with lipedema too. Anecdotal stories suggest it does help reduce pain significantly in some people with Dercum's Disease. Only more study will tell if it is helpful for people with lipedema.

      Acupuncture
      In the lymphedema community, treatment with acupuncture would be considered an absolute no-no.

      When people have severe lymphedema after cancer treatments, for example, they have to carefully avoid anything that might injure the affected limb. Taking blood pressure or putting an IV in a lymphedema-affected arm can make the lymphedema FAR worse. And any holes, even very small ones, could be potential conduits for bacteria, and infections are a very real risk in lymphedema due to depressed immunity. So lymphedema patients are taught to NEVER let needles of any kind be put into an affected limb.

      This lymphedema rule has been extrapolated to lipedema without knowing whether that restriction is true for lipedema. For one thing, acupuncture needles are extremely fine and don't go in that far, so they probably do not represent the same degree of risk that a blood-draw or IV needles would pose. For another thing, until Stage 4, lipedema doesn't present the same way as lymphedema or have the same risks. As a result, it's hard to say how risky acupuncture might be for someone with lipedema. My best guess is that it might depend on the degree of their lipedema, frankly.

      It's only anecdotal of course (from only one case!), but I personally have acupuncture treatments all the time, even in my lipedemic legs, and it does not seem to make things worse at all. Indeed, I find it helpful for easing much of the pain, muscle tightness, and other symptoms that go hand in hand with lipedema for me.

      On the other hand, I have not found it effective for reducing a lipedemic flare or the edema I experienced after two of my children's births. Personally, I don't think it's really an effective treatment for reducing edema, but it can be useful for some of the musculo-skeletal issues that can go along with an altered gait from lipedema. My acupuncturist also works on optimizing my thyroid function and minimizing PCOS symptoms, and it does seem to help that somewhat.

      If you have Stage 4 lipo-lymphedema, then it seems sensible that acupuncture on the affected areas might be contraindicated. (I don't have lipo-lymphedema, so perhaps this is why I can have acupuncture without problems.) However, acupuncturists can do "distal" points ─ points that are far away on unaffected areas, yet which can still treat the affected area. Some people are still not willing to risk even that much potential exposure to bacteria when they have lipo-lymphedema, and it's easy to understand why they are cautious.

      Bottom line, it seems to be a personal decision whether to try acupuncture, but I wouldn't say across the board that it's contraindicated ─ as long as you don't have secondary lymphedema.

      Although acupuncture can be expensive in a private clinic, there are community acupuncture clinics where group treatments are very affordable, and many Chinese Medicine schools also offer steeply discounted appointments. Even if your insurance doesn't cover acupuncture, there may still be a way to afford treatment.

      On the other hand, if you don't feel comfortable using needles anywhere, then by all means avoid acupuncture. Just remember that if you are intrigued by the possibilities but don't want needles, you can still receive acupressure in non-painful areas, or you can consult a Chinese medicine practitioner on herbs and other options as well.

      Chinese Medicine

      Chinese Medicine views lipedema as having a "yin" constitution, or too much cold and damp, if I understand it correctly. The Spleen in particular is considered the source of the edema (not "spleen" in the traditional Western sense of a specific organ).

      The Chinese Medicine approach uses herbs to help balance the constitution, suggests avoiding certain foods (soy, dairy, and others), suggests avoiding cold foods, using lots of dried ginger and certain other herbs, and getting plenty of exercise. To read more about Chinese Medicine's approach to lipedema, read here and here.

      Personally, although I regularly receive acupuncture, I do not use much other Chinese Medicine. I have never found it particularly effective for me, and I'm too Western in my thinking to be comfortable with the concept of "qi" or "damp" or "Yin-yang." I also am hesitant about using herbs without knowing a great deal about their efficacy, toxicity, or potential interactions.

      However, many people have tried Chinese Medicine and find it helpful. Again, a Chinese Medicine college is an affordable option if finances are a concern.

      Detox Procedures

      Many people with lipedema feel that their tissues do not clear proteins and toxins well because of the impairment of the lymph system. They feel these toxins build up along with the excess fluids, and that it's important to find ways to "flush away" these things. Whether this is true or not is not really proven, but it does seem somewhat plausible. So many "alternative" treatments focus on "detoxing" from these substances.

      Some promote the idea of soaking in a bath with Epsom salts (magnesium sulfate), which are available very cheaply over the counter in drugstores. As long as the Epsom salts are only used for soaking (and not taken internally), the magnesium is absorbed through the skin and that makes it harder to overdose. Some people like to shower afterwards, just in case.

      Oral magnesium supplements do have the potential to cause low blood pressure, diarrhea, headache, hypoventilation, heart issues, lightheadedness, allergic reactions, or even death in some cases, so never take it internally (either orally or in an enema) without a doctor's guidance.

      If you can overdose with internal intake, it's theoretically possible this could occur with skin absorption too. As a precaution, don't overdo the dose you put in the bath, don't take too many Epsom salt baths close together, and don't stay in a long time. Be aware that some people do report dizziness or extreme tiredness after an Epsom salt bath; eat well and be well-hydrated before a bath as a precaution. If you are allergic to sulfas, have unstable blood pressure, brittle diabetes, or open wounds, you should probably not use Epsom salts. If in doubt, talk to your provider before trying one.

      Some people with lipedema promote Detox Smoothies, which is juicing certain vegetables and herbs together to help clear lymph toxins through specific nutrients. Whether any of this is helpful is unknown and has not been studied at all. Juice-only smoothies are pretty low-risk, but you might be better off eating the whole fruit so you get the fiber as well as the juice. If you are going to do a juice smoothie, eat a little protein with it to even out the effect of fruit juice without fiber on your blood sugar.

      Juicing just fruits and veggies is probably not harmful, but be careful adding herbs. Herbs can be very potent medicines. Know what the herb you are using does, know its proper dosage, know how it could interact with any other medication you are on, and be sure you have a safe unpolluted source for that herb. Above all, avoid using unproven radical detox regimens.

      Summary

       Because traditional treatments are not all that effective in treating lipedema, many people have turned to alternative medicine for further choices. Unfortunately, there is not a lot of research on these alternative medicine options so it's hard to know what's effective or not.

      The most commonly-used alternative treatment is supplements and herbs. Selenium is the supplement with the most research behind it. It has been shown to be helpful in reducing lymphedema symptoms. Whether it helps lipedema or not is still up in the air, but some leading experts on lipedema feel comfortable recommending it routinely, as long as doses are reasonable.

      Some lipedema experts are also suggesting Butcher's Broom now. The combination of Selenium and Butcher's Broom was shown to help one woman with lipedema in a recent case report. However encouraging this is, it is only one case report so it does need to be verified by other research.

      Benzopyrones used to be routinely recommended for lymphedema patients in non-U.S. countries but their potential for liver toxicity has put them out of favor now. Some doctors are recommending bioflavonoids instead now.

      Turmeric has been shown to be a potent anti-inflammatory, so many people with lipedema are trying it. Although we have no research specifically on turmeric for lipedema, it has the advantage of benefiting a number of other conditions.

      Other substances that are sometimes used for lipedema include horse chestnut seed, quercetin, pine bark extract, modifilan, wobenzym, grape seed extract, cimetidine, NAC, ginger root, milk thistle, brown and green seaweed, bio-rutin, cayenne pepper, and coconut or fish oil.

      Dry lymphatic brushing is all the rage these days. It is reputed to help continue the benefits of Manual Lymph Drainage massage at home, but I am unaware of any studies proving this. Still, it seems unlikely to harm so it may be worth trying.

      Vibration Plates is another trendy treatment, although this one seems to have cycled back from previous years. If effective, it could offer significant benefit for those whose mobility has been affected by severe lipedema. But first, we need some research showing its effectiveness for lipedema!

      CVAC™ is a new therapy that uses cycling atmospheric pressures in a hypobaric chamber to help reduce fluid in tissues and improve oxygenation. Although mostly used with elite athletes at this point, there does seem to be some therapeutic potential for chronic diseases. It has helped the severe pain that some people with Dercum's Disease experience, and Dercum's is very similar to lipedema in some ways. This seems like a very interesting possibility to explore, but with limited potential, since these hypobaric chambers are not widely available. Again, we need research.

      Acupuncture is probably contraindicated for those who have developed lipo-lymphedema, but may be okay for those who have not developed secondary lymphedema. There is no research on it for lipedema. My own experience (which is only from one person, of course) suggests that it doesn't really help the edema or reverse the lipedema, but that it can be very helpful for musculoskeletal pain and tightness that can be a side effect of lipedema issues. If it helps keep you from needing pain medication, then it seems worth trying.

      Some people have explored Chinese medicinal herbs and treatments for lipedema. Some really feel helped by it. Although I use acupuncture regularly, I have not been willing to experiment with unknown herbs for safety reasons. Again, it would be helpful to have some research on it.

      Finally, "detox" procedures are all the rage these days. Beware their very trendiness, and avoid any radical detox regimens. However, Epsom salt baths might be reasonable thing to consider if you use a little common sense, and juicing is unlikely to be harmful as long as it's done sensibly too.

      As with any condition, treatment doesn't have to be all-or-nothing allopathic (traditional medical) or alternative. Most people mix a little of everything together. Nearly every lipedema treatment is lacking in long-term research to back up its efficacy and safety, so it's a bit of a crap shoot figuring out what to try. Don't limit yourself to only allopathic treatments, but do use common sense in whatever you try.



      References and Resources

       Resources

      *Trigger Warning: Many of these sites are not size-friendly. However, because they also contain valuable information about lipedema and its treatment, they are included here.
      Lipedema Support Groups
      Websites About Those Dealing with Specific Lipedema Treatments
      Herbs, Drugs, and Supplements

      J Support Oncol. 2003 Jul-Aug;1(2):121-30. Current status of selenium and other treatments for secondary lymphedema. Bruns F1, Micke O, Bremer M. PMID: 15352655
      ...Drug therapy has included the use of diuretics, corticosteroids, and coumarin- or flavonoid-type compounds. Diuretics and corticosteroids may be useful in edema of mixed origin and in palliative circumstances but cannot be recommended for persistent lymphedemas. Coumarin and flavonoids reduce swelling in all types of lymphedema, but their long-term use is problematic. One promising step in drug therapy seems to be the introduction of free-radical scavengers, such as selenium. Present data demonstrate that selenium can enhance the benefits of physical therapy in radiation-induced lymphedemas. The very low toxicity profile of selenium and its cost effectiveness are further arguments for its use in lymphedema treatment.
      Acta Pharmacol Sin. 2012 Feb;33(2):155-72. doi: 10.1038/aps.2011.153. Rare adipose disorders (RADs) masquerading as obesity. Herbst KL. PMID: 22301856
      ...People with RADs [Rare Adipose Disorders] do not lose SAT [subcutaneous adipose tissue] from caloric limitation and increased energy expenditure alone...Treatment recommendations focus on evidence-based data and include lymphatic decongestive therapy, medications and supplements that support loss of RAD SAT....

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      Friday, August 7, 2015

      Lipedema Treatment, Part 5c: Tumescent Liposuction

      Image from Lipoedema Australia Support Society (LASS) 
      We are continuing our discussion of Lipedema, sometimes known as "painful fat" syndrome or "big leg" syndrome, as part of the follow-up to Lipedema Awareness Month.

      In lipedema (also spelled lipoedema), the fat cells in certain parts of the body experience overgrowth. It's a fat storage disease, resulting in an abnormal accumulation of fat in the lower half of the body; often the arms are affected too.

      As we have discussed, lipedema is rarely recognized by doctors, despite being discovered 75 years ago. Often it is thought to be simple obesity, or it is confused with "lymphedema," the accumulation of lymph fluid in the interstitial areas.

      In Part One of this series, we discussed the typical features of lipedema and how differentiate between lipedema and lymphedema.

      In Part Two of the series, we discussed how lipedema progresses, the different stages of progression, and why it's so important to be aware of lipedema

      In Part Three of the series, we discussed the different types of fat distribution patterns, looked at some pictures to illustrate type and stage of lipedema, and detailed how lipedema is diagnosed.

      In Part Four of this series, we examined possible causes of lipedema, as well as medical conditions often associated with it.

      Now, in Part Five, we are discussing possible treatments for lipedema in detail. Because we want to give more detail about each option, we are breaking the treatments into several sub-posts:
          In Part Six, we will discuss practical ways to deal with and live proactively with lipedema.

          But today, we talk about liposuction.

          Liposuction for Lipedema


          One of the more controversial treatments for lipedema involves liposuction. Some people have had disastrous experiences with it in the past, some swear by the new techniques available for it, and some want to see larger and more long-term research before they come to any conclusions.

          In the past, traditional "dry" liposuction with general anesthesia was tried on lipedema patients and often made things worse rather than better. Some developed more secondary lymphedema after these procedures than they had before them.

          However, new techniques have been developed that seem to be far more effective and less damaging than the older techniques, and preliminary research is quite promising.

          Let's look at liposuction for lipedema in more detail. 

          Traditional Liposuction and Lipectomy

          Many women who have struggled with the extra bulk of lipedema have secretly wished they could cut away or suck out the extra fat from their bodies. Sadly, many doctors have had this same impulse and tried to do it for years, harming many women in the process.

          Lipectomy (cutting away fat pads or lobes) has been tried on lipedema patients with very poor results. One classic 2012 textbook on lymphology wrote:
          Surgical removal of adipose tissue, lipectomy, can cause lymphedema as a complication, because lymph vessels are always removed along with the fat. It is particularly dangerous if fat pads medial to the knee joints are excised - as previously explained, the ventromedial lymph vascular bundle is located in this region. Lymphedema is a much more serious disease than lipedema. People do not die of lipedema, but lymphedema can lead to angiosarcoma.
          Liposuction (vacuuming out fat cells) is used for reducing fat to "improve" cosmetic appearance, so many doctors hypothesized that this fat removal would help in lipedema. However, traditional "dry" liposuction is one of the worst things you can do for lipedema. Most don't seem to benefit that much and some even seem to get worse because traditional liposuction techniques can damage the lymph system. As the translation of one German expert's paper explains:
          The results of liposuction using dry suction ranged from disappointing to disastrous. The criss-cross technique used in the dry technique of liposuction, which was reasonable in aesthetic surgery, ended up destroying numerous lymph channels in the lipedema patient, which inevitably lead to a post-surgical lymphedema. Anatomical studies came to the conclusion that lymph vessels are rather robust against sheering powers in a longitudinal direction, but can be easily damaged in a transversal axis. This led to the insight to use suction in the direction of the lymph axis.
          Lipectomy and traditional dry liposuction have pretty much been discredited as viable treatments for lipedema. But now there are new techniques in liposuction that have people taking a second look at that option. 

          Lymph-Sparing Tumescent Liposuction

          Tumescent liposuction. The fluid on the table is from
          the injection of fluids under the patient's skin
          Recently doctors have come up with a new procedure called "Lymph-Sparing Tumescent Liposuction." This is not done in the old "dry" way, but with a new "wet" technique that is thought to be less harmful.

           The Procedure

          Before the liposuction begins, surgeons usually use standard pre-op procedures like antibiotics, skin cleansing using Hibiclens, and mild anti-anxiety medications. All medications or herbs with anti-coagulant effects should have been stopped well before the surgery (NSAIDs, turmeric, aspirin, etc.).

          Once the "wet" tumescent liposuction begins, fluids containing local anesthesia (usually lidocaine for pain relief) and epinephrine (to shrink blood vessels and minimize bleeding) are injected under the skin. The tissue becomes very swollen and firm ("tumescent"), making it easier to separate the fat tissue from the other tissue so it can be removed more easily. Then the surgeons wait a while for the medications to take full effect before proceeding to the next phase. 

          At this point, a series of small incisions are made. Small vibrating microcannula (mini-tubes) are inserted under the skin in a longitudinal direction to remove fat cells, taking care to avoid blood and lymph systems as much as possible. The vibrating microcannula help separate the fat cells from the other structures in the skin, then use a vacuum in the tube to suction fat cells out. The small incision holes are left open after the surgery so the excess fluid can leak out and disperse. Absorbent bandaging is applied to help soak up the leaking fluids.

          Dr. David Greuner, a surgeon in New York City who does this new type of liposuction, describes it this way:
          We are using...a very specialized form of [liposuction] in order to preserve all healthy tissue while removing diseased tissue. The way I like to describe it is very refined meticulous liposuction...There are a lot of tissues that...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...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.
          Although most capillaries are not damaged in the procedure, there can be some blood in the fluids leaking after the procedure. Bruising may also appear as a result of minor bleeding under the skin. Some doctors also use low molecular weight heparin injections after the procedure to lower the risk for blood clots; these might increase bruising somewhat.

          One major advantage of tumescent liposuction is that it does not involve general anesthesia, only topical local anesthetic injected under the skin with fluids. This means less anesthesia for the liver to metabolize, as well as a quicker recovery. In addition, some experts feel that general anesthesia procedures should be avoided when possible in lipedemic patients because they paralyze and shut down the lymphatic system for a while, perhaps predisposing to secondary lymphedema. General anesthesia also involves a higher risk for death and serious complications, especially in "obese" people. The advent of tumescent liposuction with only local anesthesia represents a big step forward in lowering the risk of this procedure, especially in larger people.

          Types and Techniques

          There are different technique variations in lymph-sparing liposuction. The most popular currently is WAL, Water-jet Assisted Liposuction. Some surgeons seem to consider this a subset of tumescent liposuction techniques, while others seem to consider it a different procedure altogether.

          WAL uses slightly pressurized water jets on the micro-cannula to help gently separate and remove the fat tissue from the surrounding tissue, which is then suctioned out with the micro-cannula. Research confirms that this technique is lymph-sparing. 

          Many liposuction surgeons currently use WAL for their lipedema patients because they feel it is the easiest on the lymph system. They consider WAL the most state-of-the-art liposuction technique for lipedema patients available today. 

          There is also a version of liposuction that uses lasers to help destroy the fat cells before they are removed. The fat cells are ruptured using the heat from mini-lasers and then suctioned out. Any tissue left behind helps form scar tissue, which is supposed to tighten up lax skin. Some surgeons favor this for arm liposuction in particular.

          Ultrasonic liposuction has also been touted as a treatment for lipedema. It uses ultrasound to help break down the fat before it is suctioned away:
          Ultrasonic liposuction works by transmitting shock waves through a special handpiece to the end of a cannula (fine tube), which is inserted into the area to be treated. The waves break up the fat, turning it into a milky emulsion, which is then sucked up by the cannula.
          So there are a number of different technique options for lipedema liposuction. It's important to do your research on the pros and cons of each.

           At this time, it appears that most lipedema experts prefer using WAL liposuction. They see it as the most effective and least damaging technique available. A few surgeons will use WAL plus lasers in certain areas. Although the studies on WAL are small, the results are generally quite positive.

          Post-Op Care

          Image from here.
          Post-operative care after tumescent liposuction usually involves bandaging or compression garments 24 hours a day for about a week or so, sometimes lasting a few weeks. Mobility is limited at first, so it's important to have a helper who can do the post-op wound care, bandaging, and compression garments for the first few weeks.

          The extra fluids pumped under the skin will slowly leak out for several days post-op, so recovery can be messy. As mentioned, these fluids may be blood-tinged at times, and bruising may also appear. Some patients experience significant itching and tenderness in the area which has been treated, while others aren't affected as strongly.

          As soon as you are ready, walking is useful to help the lymph system clear the body of leftover fluids and debris. Walking will be slow and gentle at first but should increase as you recover. With more advanced cases of lipedema, Manual Lymph Drainage may also be used during the recovery period.

          Short showers are permitted within a day or so after the procedure, but full bathing, swimming, or other immersion is typically not allowed for several weeks. An oral antibiotic is usually continued for a few days after surgery, and some doctors will also give low molecular weight heparin for a few days or weeks, especially for those traveling long distances after the surgery.

          For more details on the pre- and post-op procedures and after-care of one surgeon, see this article. (Keep in mind that every surgeon will likely have a slightly different protocol.) For one woman's post-op recovery story, read this and this. Another woman's journey is chronicled here. Additional liposuction stories are linked to at the bottom of this post. 

          Although some people only need one procedure, most people undergo multiple procedures in order to address all the different areas affected by lipedema without endangering the circulatory system (too much removed at once could cause the circulatory system to collapse). Those with Stage 1 and 2 lipedema can have their procedures performed fairly close together, while those with Stage 3 and 4 lipedema need to space their procedures apart further to allow for sufficient recovery and to get the best results.

          Although progress is seen within 2-4 weeks after each procedure, the final results are often not seen for six months to a year, after the body remodels itself. For those with extensive lipedema, additional skin "lift" procedures may be needed to deal with sagging skin afterwards.

          Pros and Cons 

          Like any other treatment, tumescent liposuction for lipedema has pros and cons. Let's look at these more closely.

          Pros

          Liposuction is the only lipedema treatment to actually remove some dysfunctional fat cells from the body rather than trying to just minimize swelling or improve lymph flow. These fat cells never come back so the mischief they cause (leakage of fluids, impairment of lymph flow, pain, bruising) is gone from the body.

          However, liposuction is NOT a cure; it is impossible to remove all lipedemic fat, and whatever causes lipedema is still there and may still cause overgrowth of current fat cells and creation of new ones. In a best-case scenario, however, this procedure can reduce lipedema fat considerably and lessen pain, bruising, and probably slow progression of the condition.

          Remember, lymph-sparing tumescent liposuction doesn't take the lipedema away. At best, it offers a bit of remission, an ability to go back a number of years in the progression of lipedema, regaining some mobility and reducing limb size. This alone can be a tremendous blessing to people with lipedema, enough to justify its risks to many people.

          It is also hoped that liposuction will lessen the pressure on the vascular and lymph systems and so prevent or delay the development of lipo-lymphedema. Although this is speculative, it does seem logical and would be a huge advantage to doing liposuction. Only longer-term research will tell for sure.

          Cons

          On the other hand, any surgery carries risks of bleeding, infection, and trauma to the area. And if the liposuction is not done well, the lymph system might actually be damaged more. These risks must be weighed against the possible benefits.

          Don't forget to factor in the risks of any additional surgeries that might be required later on. As mentioned, some might need skin "lift" surgeries afterwards, and of course those surgeries also have risks, especially since they are more invasive and involved than liposuction itself. Abdominal lifts ("panniculectomies") particularly tend to have complicated recoveries.

          Another major con is the expense of the surgeries, the fact that insurance rarely covers them, and the reality that most people must travel in order to get lipedema-specific liposuction. That means taking time off work, a helper taking time off work to go with you, and the expense of traveling and living for a while in another city.

          Furthermore, the cosmetic results of liposuction for lipedema are not always that impressive. The amount of weight lost from the procedure is minimal, and the cellulite will not disappear. Some patients achieve significant limb volume reduction, but not everyone does. This means that some women who hope for major cosmetic improvements are disappointed in the results. Of course, the main reason to do the procedure is to lessen pain and the pressure on the lymph and vascular systems, not to achieve weight loss or improve cosmetic appearance. It's important to keep expectations realistic and focused on the real purpose of the surgery.

          Are The Results Long-Term?

          One of the most critical questions about tumescent liposuction for lipedema is whether the results are long-term or whether additional fat comes back.

          No one really knows the answer to this. We do know that the fat cells removed in liposuction are gone for good and those fat cells don't come back. However, will others grow in their place later on?

          Because lipedema probably involves both hypertrophy (over-growth of existing fat cells) and hyperplasia (over-production of new fat cells), our best guess is that it likely will cause significant overgrowth again at some point. Tumescent liposuction merely buys more time, improves quality of life, and hopefully lessens complications.

          Until doctors can pinpoint the real underlying cause of fat cell overgrowth (my bet is an endocrine abnormality acting on a genetic predisposition), tumescent liposuction is only a stopgap ─ but it's the only stopgap that offers real hope for significant improvement. 

          Because tumescent liposuction for lipedema hasn't been done that long, no one knows what the truly long-term results will be. The short- and mid-term results are promising, however.

          Results

          Some people have had some dramatic results with lymph-sparing tumescent liposuction, while others have had only so-so results. Keep in mind that most of the pictures available online are of the most-impressive results; your results might not be so dramatic. Here are some of the more impressive ones.

          Before and After Pictures

          Before and After images from Schmeller 2012
          Schmeller et al., 2012, reported on their results with WAL liposuction in Germany over several years, and included pictures of some of the more dramatic cases. In the picture above, a 42 year-old woman had 4 different WAL liposuction procedures done (hips, buttocks, thighs, and lower leg), and the differences are quite marked nearly 2 years after the first surgery.

          Image also from Schmeller 2012
          In another case from the same study, a 34 year-old woman had 1 liposuction procedure done, focusing on the lower legs. Again, even 3 years after the procedure, the difference is quite marked.


          Another impressive before-after case is Jasna Turnic, a patient who had the surgery done in L.A., and who documented it in a report here. She was probably only Stage 2, but she was already experiencing significant pain and mobility issues. Her legs look quite different after the liposuction, but most importantly, the liposuction lessened her pain and improved her mobility significantly.

          Other enticing before-after pictures I've seen have involved the bracelet of fat around the ankle, the "cankles." This is great since many plastic surgeons consider ankles difficult areas and won't do them. They feel there is a lot of critical structure (bone, ligaments, and nerves) around ankles which is prone to damage with traditional liposuction. WAL liposuction, on the other hand, seems to handle them just fine.

          Many women with lipedema find that the bracelet of fat is one of the most challenging areas of fat to have. Heavy legs can be covered up with skirts or with pants, but it is difficult to cover up cankles because they are still visible under long skirts and at the bottoms of pants legs.
          Before and After images, Schmeller 2012
          On a practical basis, having a large cuff of fat at the ankle makes it difficult to find socks or boots that fit. This often means buying short socks and wearing regular shoes instead of boots, even in cold or wet weather. This can result in women walking around with cold or wet feet during the winter, a recipe for hypothermia, frostbite, or skin infections.

          If tumescent liposuction can reduce the cankles enough, some women are able to finally wear footwear suitable for bad weather. You can read the story of one woman who was able to fit back into rain boots after having WAL liposuction here.


          Liposuction result on arms; Schmeller 2012
          Another lipedema spot that is emotionally challenging to women is the arm. Heavy arms are right by the face, and use of the arms and hands draws people's attention to them more than to legs. People stare at very heavy arms and it can be difficult to regain their focus. As a result, many lipedema women prefer to cover their arms, but it is difficult to find tops with sleeves long enough to cover lipedema fat yet short enough not to overheat in warm weather.

          As a result, some lipedema women choose to get liposuction of arm fat, particularly that which is just above the elbow or which hangs down from the upper arm. This can be pretty successful, as seen in the pictures above.

          However, it should be noted that not all cases of liposuction are as successful as the pictures shown above. I've seen before and after photos that were rather underwhelming. It's very difficult to guarantee what kind of aesthetic results might occur.

          But remember, the main point of this procedure is NOT aesthetics, it's about improving function, pain levels, mobility, and lessening the risk for further progression of the lipedema.

           Research Studies

          Pictures can be doctored or cherry-picked for the best cases. What does the data say about liposuction for lipedema?

          Research thus far shows that lymph-sparing tumescent liposuction indeed results in lower pain levels, smaller leg circumferences, less bruising, and improved mobility.

          Although there are several studies available, let's focus on discussing the Schemller study because it is the largest and longest liposuction trial. It involved 112 patients (mostly Stage 2), followed for a mean of about 3.5 years. 

          Most importantly, women reported a big decrease in pain levels and a reduction in bruising and swelling. Many were able to reduce other treatments, with 22% able to discontinue all other treatments. Several also reported improvement in mobility after the surgery. (This would probably be even higher if they had had more Stage 3 patients in the study; most were Stage 2, where mobility is not yet that impacted.)

          The study found that on average, women lost about 1.5 inches (calves) to 3 inches (thighs) from their leg circumference. The treatment resulted in only very small weight losses, but 74% of women were able to go down between 1 and 3 pants sizes after treatment. That would be very meaningful to many women, and not just for aesthetic reasons.

          Complications were minimal. About 1.4% experienced an infection afterwards (minor), similar to levels experienced in other studies of tumescent liposuction. Significant bleeding occurred in 1 patient (0.3%), although the authors note that this is the only patient of theirs who has experienced bleeding in 10 years (1826 patients), for an incidence of 0.05% overall through the years. 

          The improvements in condition in the women in the study have TREMENDOUS implications for women with lipedema. If further research continues to show improvements like these, then lymph-sparing tumescent liposuction should be covered by insurance, especially since some women have been able to lessen or even discontinue their complete decongestive therapy after this liposuction.

          Liposuction might involve a larger up-front cost, but might actually save money for insurance companies in the long run by lessening the need for complete decongestive therapy, compression garments, and hospitalizations for cellulitis and other complications as the condition progresses.

          In fact, the German Society of Phlebology now includes liposuction as part of its guidelines for the treatment of lipedema. Sadly, though, costs for this liposuction are often out of pocket (even in Germany, where the most research has been done). Insurance views liposuction as a strictly cosmetic procedure, and many U.S. insurance companies don't even recognize lipedema as a real condition.

          Although a few people have been able to get liposuction for lipedema covered as a medically-necessary procedure, most must pay for it themselves. And since there are only a few surgeons trained in this specialized technique, personal costs often include air fare and hotels in addition to the procedure. This puts it out of reach of most people with lipedema.

          Hopefully with time and more research, more insurance companies will see that their bottom lines would benefit by covering this surgery. However, regardless of the bottom line, hopefully they would realize that such a procedure is NOT cosmetic but should be covered because it improves the health and the quality of life of the patient, their customer. 

          Finding a Qualified Surgeon

          It's important to note that many plastic surgeons perform tumescent liposuction, but that doesn't mean they are performing lymph-sparing tumescent liposuction.

          Remember, in this version, great care is taken to avoid the lymph system as well as the vascular system so the liposuction does not make things worse. Ordinary tumescent liposuction may not take this kind of care and may use a criss-cross motion that is particularly damaging to the lymph system. 

          If you are going to consider tumescent liposuction, it's vitally important to get it done by a doctor who specializes in treating lipedema patients, and preferably trained by one of the experts in the field. 

          A botched operation can result in significant damage to the lymph system and a worsening of the patient's condition. In addition, there are occasional case reports of other complications as well. You really want to go with a surgeon who has the correct training, plenty of experience, and who works in center capable of handling serious complications if they should occur.

          Sadly, only a few doctors are currently trained in this procedure, but more are learning all the time. Until just recently, the main doctors doing this special lipedema liposuction were in Germany so if you wanted this treatment, you had to fly to Germany to get it. Some of the doctors doing it in Germany include:
          • Dr. Stefan Rapprich, Rosenberg Klinik in Sonthofen, Germany. He trains other surgeons in this technique
          • Dr. Josef Stutz in Bad Steben Germany, one of the leaders in training other doctors in this technique
          • Dr. Wilfred Schmeller, Hanse-Klinik in Lübeck, Germany
          • Dr. Reggy Schift in Borken Germany; reportedly specializes in people with large volume (lipo-lymphedema), doing a series of surgeries over several weeks
          Recently, some British and American doctors have received training on this procedure from the German experts and now offer it. Treatment centers/surgeons for lipedema in the U.S. include:
          [Obviously, I do NOT endorse any particular provider or give any feedback on their program, but since there are so few doctors in the world who have trained in this, I felt it was important to pass along some of the possible names. There may be others I am not aware of, and I'm sure there will be more in the next few years as the training program expands. Also, personnel at various clinics may change, so be aware this list will evolve quickly; do your research.]

          There may be other doctors who know how to do this procedure, but you need to consider carefully when choosing a surgeon. The Fat Disorders Research Society has a great list of questions to consider when choosing a surgeon for lymph-sparing tumescent liposuction.

          For example, find out whether your doctor has special training in this procedure for lipedema and who they trained with. You want someone who was trained by some of the leaders in the field, and who knows techniques specific to lipedema, not just tumescent liposuction in general. How many of these procedures has this person done, where is the surgery performed, how is care handled if there are problems?

          Ask about your surgeon's complication rate, post-op management, what services they offer post-op patients, what to do if you experienced complications after returning to your city, etc. Also consider how the doctor approaches you ─ do they ask enough about your medical history, do they care about you as a patient or are they impersonal and cold, do they explain clearly about what you can expect, are they pressuring you into the surgery, etc. Although a good bedside manner does not guarantee a good surgeon, you would hopefully find someone who has both qualities.

          Some doctors feel that it is important to do liposuction before the lipedema gets too severe. Some say the most benefit has been seen in women in Stage 2 and early Stage 3 lipedema. Some doctors refuse to do the procedure on women with Stage 4 lipo-lymphedema because they feel it is too complicated with the added lymphedema. On the other hand, there are a few doctors who will work with women who have secondary lymphedema, so never give up looking.

          Sadly, weight bias occurs in liposuction treatment too. In the medical literature, some have promoted liposuction only for lipedemic women "with an acceptable waist measurement." Other women have been told they must lose some of their "normal" fat first before being able to access liposuction.

          Again, as we discussed recently, it goes back to the biased attitudes of many lipedema providers that if a woman with lipedema is significantly obese, it must be because she has poor habits, not simply that she has a more severe presentation of the condition. This is a common assumption and shows that even lipedema care providers have not freed themselves from typical weight stereotypes and biases. 

          There should not be weight limitations for lymph-sparing tumescent liposuction. It is short-sighted and WRONG to keep the potential benefits of liposuction from the women most in need of it. 

          Conclusion

          Traditional "dry" liposuction and lipectomy are clearly very bad choices for women with lipedema. They damage the lymph system and often worsen a woman's condition instead of improving it.

          Because early attempts with dry liposuction had disastrous results, some in the lipedema community view all liposuction as a discredited treatment. However, recent development of special techniques to help preserve lymph function have re-invigorated liposuction as a potential treatment for lipedema. Although long-term research is still limited in this new field, what we have so far is quite promising.

          Although not a cure, lymph-sparing tumescent liposuction/WAL has clearly shown benefit in reducing pain, bruising, limb volume, mobility limitations, and the need for traditional medical treatments in women with Stage 2 lipedema and above.

          Basically, liposuction seems to result in a temporary remission of lipedema symptoms. This is huge in a condition that can be relentlessly progressive to the point of eventual immobility. Even if only a few extra years of mobility and pain relief are bought with liposuction, that is a tremendous improvement in a woman's quality of life because lipedema can become so debilitating.

          Although longer-term results are limited and we can't prove that lymph-sparing liposuction is able to slow or even prevent some progression of lipedema, it seems like a logical possibility. Again, this could have tremendous implications for a woman's quality of life and prevention of complications.

          At this point, insurance does not usually cover tumescent liposuction for lipedema, viewing liposuction as simply cosmetic. Hopefully once lipedema's ICD code is approved and awareness about lipedema improves, more insurance companies will see that a relatively small investment up front may well save them money later on by preventing or lessening costly complications. 

          Of course, not everyone in the lipedema community is a fan of tumescent liposuction. Some urge caution about it because it may be just another trendy treatment. Many are reserving judgment until there is more data on its long-term results.

          This is a very valid concern. Although the data we have so far is quite promising, there aren't that many studies, and those we do have are small and have a relatively short follow-up. This is a concern about many lipedema treatments, and it is no less valid here. 

          However, this treatment modality has tremendous potential because it is the only option that really addresses one of the sources of the issue, the dysfunctional fat cells themselves, even if it can't reverse the process. That is why many people in the lipedema community are really excited.

          More research is needed, but what data we have so far seems to indicate that lymph-sparing tumescent liposuction is a significant step in the right direction to improve the lives of women with lipedema. 

          My Opinion

          Personally, I was not very impressed with the idea of lymph-sparing tumescent liposuction when I first began researching it, but have become progressively more excited by the possibility as I learned more. I'm sure that viewpoint shows, so beware possible bias.

          We do still need more and longer-lasting research before this treatment is widely adopted. I'm also concerned that some plastic surgeons are opportunistic and might see this as the new "cash cow" money-making opportunity. The last thing we need is under-trained surgeons performing liposuction without deep knowledge of lipedema-specific techniques, in inadequate facilities, or with insufficient post-op care. So I do still have reservations about liposuction for lipedema, even as I find it one of the most promising treatment directions for the future.

          Another reservation is that all the focus on liposuction might keep researchers from focusing on discovering the underlying causes of lipedema. If we ever hope to truly treat lipedema more effectively, we need to know why it happens. Liposuction only addresses part of the issue, and at best only offers a partial remission.

           Lipedema researchers need to do MUCH MORE work on discovering the causes of lipedema, particularly endocrine issues that might be promoting hypertrophy and hyperplasia of the fat cells. All the attention on liposuction must not divert the attention from the basics of learning about this disorder.

          Final Thoughts

           Although there are still questions to be answered, lymph-sparing liposuction represents one of our best hopes for treating lipedema right now. Most other available treatments, although effective, simply lessen lymph symptoms. Lipedema at least addresses part of the basic problem by getting rid of some of the dysfunctional fat cells themselves.

          Liposuction is not a cure, and it doesn't guarantee that the patient won't experience lipedema flares again in the future. However, lymph-sparing liposuction is at least a step in the right direction in reducing the significant morbidity and burden from this disorder.

          Now that doctors in the U.K. and the U.S. are beginning to receive training in lymph-sparing liposuction from German doctors, more patients will be helped and more data on it will be collected. If that data is promising, hopefully this training will spread. Women of all countries deserve to have this option without having to travel long distances to get it. 
          *You can read more about one woman's recent journey through a lymph-sparing tumescent liposuction procedure here. Other women's stories are told here, here, and here. There is a good verbal description of it about 26 minutes into this video, (trigger warning: weight loss talk). There are also informative YouTube videos about liposuction for lipedema from various surgical centers around the U.S., as well as patient testimonials and news stories.  

          References and Resources

           Resources

           *Trigger Warning: Many of these sites are not size-friendly. However, because they also contain valuable information about lipedema and its treatment, they are included here.
          Lipedema Support Groups
          Websites About Those Dealing with Specific Lipedema Treatments
          Liposuction Research
          British Journal of Dermatology. 2012 Jan;166(1):161-8. doi: 10.1111/j.1365-2133.2011.10566.x. Epub 2011 Nov 17. Tumescent liposuction in lipodema yields good long-term results. Schmeller, W., Hueppe, M., & Meier-Vollrath, I. PMID: 21824127   Full text here. 
          BACKGROUND: ...surgical therapy with tumescent liposuction has only been used for about 10 years and long-term results are unknown...METHODS: A total of 164 patients who had undergone conservative therapy over a period of years, were treated by liposuction under tumescent local anaesthesia with vibrating microcannulas. In a monocentric study, 112 could be re-evaluated with a standardized questionnaire after a mean of 3 years and 8 months (range 1 year and 1 month to 7 years and 4 months) following the initial surgery and a mean of 2 years and 11 months (8 months to 6 years and 10 months) following the last surgery. RESULTS: All patients showed a distinct reduction of subcutaneous fatty tissue (average 9846 mL per person) with improvement of shape and normalization of body proportions. Additionally, they reported either a marked improvement or a complete disappearance of spontaneous pain, sensitivity to pressure, oedema, bruising, restriction of movement and cosmetic impairment, resulting in a tremendous increase in quality of life; all these complaints were reduced significantly (P<0·001). Patients with lipoedema stage II and III showed better improvement compared with patients with stage I. Physical decongestive therapy could be either omitted (22·4% of cases) or continued to a much lower degree. No serious complications (wound infection rate 1·4%, bleeding rate 0·3%) were observed following surgery. CONCLUSIONS: Tumescent liposuction is a highly effective treatment for lipoedema with good morphological and functional long-term results.
          J Dtsch Dermatol Ges. 2011 Jan;9(1):33-40. doi: 10.1111/j.1610-0387.2010.07504.x. Epub 2010 Sep 7. Liposuction is an effective treatment for lipedema-results of a study with 25 patients. [Article in English, German] Rapprich S1, Dingler A, Podda M. PMID: 21166777
          ...The removal of the increased fat tissue of lipedema has become possible by employing advanced liposuction techniques which utilize vibrating microcannulas under tumescent local anesthesia. The effectiveness of this approach to lipedema is the subject of this study. PATIENTS AND METHODS: 25 patients were examined before liposuction and six months thereafter. The survey included the measurement of the volume of the legs and several parameters of typical pain and discomfort. The parameters were measured using visual analogue scales (VAS, scale 0-10). RESULTS: The volume of the leg was reduced by 6.99 %. Pain, as the predominant symptom in lipedema, was significantly reduced from 7.2 ± 2.2 to 2.1 ± 2.1 (p < 0.001). Quality of life as a measure of the psychological strain caused by lipedema improved from 8.7 ± 1.7 to 3.6 ± 2.5 (p < 0.001). Other parameters also showed a significant improvement and the over-all severity score improved in all patients. CONCLUSION: Liposuction reduces the symptoms of lipedema significantly.
          J Cutan Med Surg. 2006 Jan-Feb;10(1):7-10. Tumescent liposuction: a new and successful therapy for lipedema. Schmeller W1, Meier-Vollrath I. PMID: 17241565
          ...Twenty-eight patients, who had undergone conservative therapy over a period of years, were treated by liposuction under tumescent local anesthesia with vibrating microcannulas. Twenty-one could be reevaluated after an average of 12.2 (1-26) months. RESULTS: All showed great improvement, with normalization of body proportions. Additionally, spontaneous pain, sensitivity to pressure, and bruising either disappeared completely or improved markedly. Other than minor swelling for a few days, no complications could be observed following surgery. All patients reported a tremendous increase in their quality of life. Physical therapy had to be continued to a much lower degree. CONCLUSION: Tumescent liposuction has proved to be a safe and effective treatment for lipedema.
          Clin Cosmet Investig Dermatol. 2014 Jan 23;7:35-42. doi: 10.2147/CCID.S56655. eCollection 2014. Treatment of elderly patients with advanced lipedema: a combination of laser-assisted liposuction, medial thigh lift, and lower partial abdominoplasty. Wollina U1, Heinig B2, Nowak A3. PMID: 24489474  Full text available here.
          ...In advanced stages, reduction of adipose tissue is the only available effective treatment [for lipedema]. In elderly patients with advanced lipedema, correction of increased skin laxity has to be considered for an optimal outcome. METHODS: We report on a tailored combined approach to improve advanced lipedema in elderly females with multiple comorbidities. Microcannular laser-assisted liposuction of the upper legs and knees is performed under tumescent anesthesia. Medial thigh lift and partial lower abdominoplasty with minimal undermining are used to correct skin laxity and prevent intertrigo. Postsurgical care with nonelastic flat knitted compression garments and manual lymph drainage are used. RESULTS: We report on three women aged 55-77 years with advanced lipedema of the legs and multiple comorbidities. Using this step-by-step approach, a short operation time and early mobilization were possible. Minor adverse effects were temporary methemoglobinemia after tumescent anesthesia and postsurgical pain. No severe adverse effects were seen. Patient satisfaction was high. CONCLUSION: A tailored approach may be useful in advanced lipedema and is applicable even in elderly patients with multiple comorbidities.
          Wien Med Wochenschr. 2015 May;165(9-10):189-194. Epub 2015 Jan 21. Acute pulmonary edema following liposuction due to heart failure and atypical pneumonia. Wollina U1, Graf A, Hanisch V. PMID: 25875251
          Microcannular liposuction in tumescent anesthesia is the most effective treatment for painful lipedema. Tumescent anesthesia is an established and safe procedure in local analgesia when performed according to guidelines. Major adverse effects are rare. In patients with advanced lipedema, however, the commonly presented comorbidities bear additional risks.We report on post-surgical acute pulmonary edema after tumescent liposuction according to guidelines in a 52-year-old female patient with lipedema of the legs. We discuss in detail possible scenarios that might be involved in such emergency. In the present case the most likely was a retarded community acquired atypical pneumonia with aggravation of pre-existent comorbidities.A combined treatment with intravenous b-lactam antibiosis, positive pressure ventilation, and continuous venovenous hemodialysis and filtration resulted in complete remission in a couple of days. In conclusion, tumescent liposuction of advanced lipedema patients should only be performed in well-trained centers with sufficient infrastructure.
          Ann Plast Surg. 2012 Mar;68(3):303-7. doi: 10.1097/SAP.0b013e318215791e. Long-term Outcome After Surgical Treatment of Lipedema. Peled AW1, Slavin SA, Brorson H. PMID: 21629090
          ...We report a case of a patient with lipedema who was treated with suction-assisted lipectomy and use of compression garments, with successful treatment of the lipodystrophy and maintenance of improved aesthetic results at 4-year postoperative follow-up.
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