Gastric bypass, please be gone…

By Tatjana van der Krabben

I’ve been holding off on writing this blog for a few years. I’m biased. I’m biased because I’ve watched a close friend – as well as others – being reduced to shadows of their former selves after gastric bypass surgery. So, at this point, having watched them going through hell, knowing there is NO way back, because it’s irreversible, there frankly are not enough successful cases in the world to make me change my mind.

Lately I’ve noticed quite a few lipedema patients are being referred for gastric surgery. Also having serious, objective points of consideration on the subject, I feel I need to come forward. So please excuse my lack of nuance this time around.

1.       Referral is usually because of suspected obesity

Lipedema is not obesity. It’s not caused by overeating. The whole motivation behind the referral stems from a false mindset. When bringing up their concerns and questions regarding weight loss specific to lipedema limbs doctors a. turn out to be oblivious about lipedema, b. don’t respond to patients who indicate they eat little as it is. Eerily, when presented with this additional information, the recommendation usually still stands. I’ve never heard of a doctor taking it back.
As for results: reduced leg size is reported, but it doesn’t take the lipedema away. That’s because calorie restriction doesn’t fix lipedema.

2.       Gastric bypass surgery equals malnutrition

With the stomach reduced to an unnaturally small size and the small intestine being shortened, you will be unable to digest enough food to sustain yourself. I’m talking nutrients here, not fuel to prevent you from burning fat. You will need to supplement. That’s a given. Especially B12, calcium and iron are a problem.

3.       But you already needed to supplement?

You have lipedema. B12 quite possibly already was a problem. And some. Even when supplementing it can be challenging to keep symptoms of vitamin and mineral deficiency at bay. Gastric bypass surgery will add to that challenge.

4.       Do you need it?

Lipedema can coincide with eating disorders and/or obesity. Fair enough. But the whole procedure is created around the assumption you are overeating and unable to restrict yourself to the point you can bring your weight down. But many of us actually eat very little if not too little as it is. Suffer from undiagnosed thyroid problems. As already indicated, lipedema is not caused by overeating. If you don’t overeat, what is the point?

5.       Surgery damages the lymphatic system

Every surgery impacts the lymphatic system. Gastric bypass surgery is rather invasive. In lipedema management damage to the lymphatic system is not exactly welcomed. There’s no research on this issue. Most likely the surgeon involved doesn’t know about lipedema. Then who will advise you properly on this particular aspect?

6.       Gastric surgery doesn’t fix everything

Gastric surgery ensures reduced portions food-wise. It doesn’t cure inflammation. Only the type of food you eat can help in that department. It doesn’t prevent you from making poor diet choices; you could still eat pudding all day long.  It doesn’t fix an urge to soothe yourself with food; whatever underlying issue has triggered that need, won’t go away.

7.       Is it ethical?

Is gastric bypass surgery ethical? I wonder. Presumed healthy tissue from the small intestine is removed. Now I’m this nature freak, true, but isn’t it odd to remove parts of a healthy organ? Also, the stomach is being reduced to such a ridiculous small size, you can’t digest enough food to provide yourself with enough nutrients. Especially with the reduced intestine, which you need to absorb vitamins and minerals. You essentially get rewired for malnutrition. And it’s irreversible. Frankly, I can’t wrap my head around this package deal.

I’m not getting into risk of complications and the mortality rate. Like I said: I’m biased. Every surgery has its risks and statistics vary per conducted study and clinic.

There are other options. If you are willing to consider bariatric surgery, it doesn’t have to be a gastric bypass. Gastric banding is far less invasive, less connected to vitamin and mineral deficiency and reversible if need be.

Liposuction – short term or long term fix?

By Tatjana van der Krabben

Liposuction is not a cure for lipedema. Been there, done that. Buuuuut….how long will you be able to enjoy the benefits? Snaky question, which I don’t have an answer to. All I know is, that it could be much shorter than anticipated.

I’ve blogged about the fat sometimes returning fairly soon in individuals. This week an article from The New York Times from May 8, 2011 was brought under my attention again. It’s disturbing: in a year fat was regained. Be it elsewhere, but fat was regained. Oops. I also stubbornly insist you CAN regain at the locations where the fat was sucked away. You can. Many have.

Where does that sit with the (few) long term studies on liposuction in case of lipedema? Quite well, actually. It’s a story of give and take. A case of “yes, but”. The body appears to be fond of storing. In lipedema we took this to the next level. And some, if you look at patients in stage 3. With liposuction we “steal” fat from our body and the little hoarder that she is will work overtime to “fix” that. Bring on the inflammation. We’ll get you gaining at under 1000 cal. a day. Ha!  

Yes, but. Thankfully there’s a “but” in this. You can counteract inflammation. You can attempt to crack the code to your body and figure out an eating and exercise plan that works well for you. Balance the stress, tweak some here, tweak some there. More and more of us manage to trick our bodies out of hoarding. At least between hormonal highs and lows. When the hormones shuffle, we are, alas, riding shotgun. Screaming “stop!”, praying the hormones will listen and hit the brakes.

The cases in my mind, where fat came back at a cruel pace involved women who were close to hormonal changes or didn’t change their lifestyle. And perhaps it also is of importance how much is removed. It has been implied – not researched – that, in order to tip the scales and change the balance properly for the patient, a significant amount of fat needs to be extracted. I wouldn’t be surprised, although clueless how to define “enough” and “too little”. (Can I make another request for research? Put it on the list, please.)

So, when considering liposuction, it doesn’t hurt to ask yourself if it would still be worth it for you personally if you could only enjoy the new optimum for, say, 5 years. It can be. Like with me. My kids are small NOW. I wanted the extra energy to start a new career NOW. I have this new window of opportunity that I obviously want to last and last. Every year in my present state counts. I make it count. It will be disappointing when I get pushed over to the passenger seat and watch the hormones take hold for a while again, but that’s the risk. I was willing to take it.

I bring this up, because for you it could also be worth it, but you need to know to take a proper decision. Maybe you’ll decide to wait, until after you have a family. Or not. Maybe you secretly hoped lifestyle would be less of an issue after liposuction. Sorry, no. Essentially you’re buying time. Make it count.

Ditching the stress

By Tatjana van der Krabben

I used to focus on every little change the lipedema made on my body. I mourned what was lost. I mourned once more when I realized some things were lost forever. Through liposuction AND lifestyle changes I reached significant improvement, but I still have lipedema. Very much so. The children kept me extremely aware of my being different: Mommy can’t do this, mommy can’t do that, if I do that I hurt mommy. I considered a change of career, but couldn’t see how I could face the challenging course work  and then the work itself. Simple things like travel, long hours, much walking. Despite my significant progress I still felt limited and a little frustrated. And I still retained water regularly.

Little by little things changed. No matter how sweet the kids were in their efforts to help me, their response was prompted by the signals I gave them. I didn’t want them to treat me like an invalid. Because I’m not. Or worse: a victim. Yikes. It was up to me to make the change. For them I made the effort to point out what I could do and drop the fat vs skinny issue. I never, ever mentioned anything about being fat again. Mommy doesn’t eat certain things, or rarely does, because it’s bad for my legs. Period. Mommy gained a cool factor taking them in fast moving and spinning rides and became the dare devil who swims with sharks. The kids need a role model, not someone to pity.

Little by little this became the standard. My life became less and less about lipedema. I stopped measuring my waist daily. I went from stepping on the scales three, four times a day to once a week or so. When I heard about Ketogenic eating, I got tempted, but left it, because that required counting carbs. I don’t count ANYTHING anymore when it comes to food. No calories, no carbs, no scoops, grams, spoons, nor will I follow a fixed food plan. I learned that food restrictions act like a stressor for me and I’m staying away from that, because stress gives me cravings. I focus on healthy choices, although not exclusively, enjoy what I eat and only eat when hungry.

My last hurdle was my career. I loved to write, yet I felt that it was a choice I made for lack of options. It took me a while to realize, but all the other ideas for career choices I have dropped not just because it would be too challenging. Truthfully, I didn’t want it bad enough. Because if I did, I would go the extra mile and it wouldn’t feel like going the extra mile. I love to write. Long hours rarely bother me. Exactly because it doesn’t feel like pushing myself. It took me a while to see that. It dawned on me when working on a novel at night on top of everything else. I didn’t waste any more time and started my own business as a professional writer and translator.

Sometimes there’s a new challenge. Peri-menopause came knocking on my door frightfully early. I got hideous carb cravings and gained a little over the last few months. A first since liposuction. That stings, I can tell you that. After going through 4 surgeries and the cost involved, gaining is frightfully frustrating. I had hoped to have a few more years without this fuss. For a while I got fussy with the scales and tape measure again, but I’m regrouping. The stress is fading again and so is the pain in my legs. Even when I don't eat perfectly. To me that’s no coincidence. It’s sometimes difficult to step away from stress, but it’s definitely worth the extra trouble to try and break free of it.

Immobility in Lipedema

by Maggie McCarey

    When lipedema support first began via forums, one common topic was the immobility that often accompanies lipedema in later years. The forum thread invariably evolved from a conversation that began: I am going to do everything I can to keep myself out of a wheel chair. Over the years, immobility has become less and less  common to forum discussions, even though reduced mobility and even immobility are possible outcomes of lipedema. Do we talk less about the wheel chair because we fear it, or because, as younger women join our ranks, the emphasis is more often about cosmetic solutions?

 

Frankly,  that an undiagnosed disease causing women to become wheelchair bound exists, is still flabbergasting to me. Yet, it is true and fearsome and raw. In the years I have been in the lipese community forums, immobility has been pushed further and further away from our awareness. Perhaps, it is time to ring the alarm again.  Lipedema sometimes causes immobility!

   I have sought at various times to compose a chronicle of events leading to my immobility. Because this inordinately slow progress is unnamed and unknown, our personal aha moments are seemingly random rather than progressive, making the timeline difficult to recreate so please bear with me.  

    

My Immobility Timeline

 

1951: I am born in a hospital bed with no one in attendance to steady my head and hold my neck against injury.  Why is this important?  Many spinal birth defects are caused by an unattended birth.

1953: I whiz down a slide so fast I go airborne and hit the slide’s edge at the bottom.  I am diagnosed with a compressed lumbar region which takes weeks to heal. 

1956:  Though I am hyperactive physically, I can do no gymnastic moves without injury and throughout all of my schooling K-12 l am exempt from gymnastic moves in P. E. 

 

1956-60. I unconsciously learn to adjust my upper body to compensate for the lack of flexibility in my lower body.  I fall often.  My legs ache at night.  I am never without pain.

 

1961: I am diagnosed with Perth’s disease. (Its symptoms:  The child may show signs of limping and may complain of mild pain. The child may have had these symptoms intermittently over a period of weeks or even months. Pain sometimes is caused by muscle spasms that may result from irritation around the hip. Pain may be felt in other parts of the leg, such as the groin, thigh, or knee. When the hip is moved, the pain worsens. Rest often relieves the pain. http://orthoinfo.aaos.org/topic.cfm?topic=a00070).  I can bear no weight for 6 weeks.  

 

1966:  I discover tennis.  I play daily and win all intramural tournaments but fall easily against my ankles because my body cannot twist.  My first conscious adaptation occurs when I jump high to meet the ball and then depend on my feet to land my jump after I twist my body midair   back to center.

 

1970’s:  I cannot easily carry my children up and down stairs or for more than a block. I am never again able to carry weight on my back, i.e. backpacks, children in baby carriers, etc.

 

1980’s and 90’s: I work out incessantly, leaving a fitness center to come home and do my nightly exercise protocol, including resting my body on one knee and bringing the other leg straight out to the side, then swinging it as far forward and back as my hip allows, 50 times each leg. I do this for the next 30 years.

 

1981: I can no longer wear heels of any kind by age 30 without causing weakness in my back..

 

1985:  Even though I am thin, wearing a waist band in pants and skirts causes my lumbar region pain.  I first become aware of the weight of clothes when I put them on.

1987: My hips become inflamed and stay that way for 6 weeks without explanation.

 

1990-2: In Nome, Alaska, I experience almost zero humidity.  I have little to no pain but when I leave Alaska for the last time, my daughter asks me to jump rope with her in Anchorage,  and my body refuses. I realize then my “structural distress” has progressed and that I may have a disease.

 

1994:  Homesteading, carrying bags of grain, planting trees and in good health, I begin to notice that I cannot get out of my favorite old rocker easily, and I often used upper body weight to push myself up out of every chair. 

1996:  I buy a treadmill but when I use it my knees give out. So, I create a walking trail in my sanctuary but after awhile, my right foot doesn’t lift as high as my left, and it catches on carpet while I walk.  I discover uneven terrain, and I miraculously begin to hike many miles a day.  I stay in great shape, walking and climbing mountains daily.  However, I can only walk  this distance with loud music playing in my ears.

 

2000:  I walk at least 3 miles everyday.  I am in great physical shape.  I cannot get up from a sitting position on the floor.  I cannot walk up a stairs without holding onto a railing.  I cannot run downstairs sideways.  I  can swing into the cab of my husband’s truck, but every move is played out  in my head before I execute it.

 

2001:  I walk up and down stairs and along trails by dragging my right foot and swinging it outward almost without detection.  One day my husband says, “Do you know when you walk up a stairs you bring your right foot from behind and then swing it forward?” I didn’t know until then.  

 

2002:  I cannot get in and out of church pews or movie seats.  I avoid couches and soft chairs.  I begin to spec out steps and their height when going to an unfamiliar place.  I avoid going to the hospital to visit my congregants unless I have to because the walk on concrete creates lipedema pain, which has become more identifiable and less manageable every passing day.  I find ways to fall back onto small toilets and to pull myself up from nearby sinks. I still walk many miles a week but I can no longer lift myself out of a bathtub from a sitting position.

 

2003:  I have a huge stress-related event which precipitates a total structural collapse.  I don’t walk for months.  I shuffle.  I don’t remember now how I manage to keep working. I walk with the sensation of wearing sweat pants filled with sand and walking in water, no pain. Gradually, I walk again.  I don’t know how or when I started walking again as I just push my body along anyway I can until it remembers. I am in peri-menopause.  Every month or so, my lower back goes out for two days before my period and I can barely use my right leg until the moment my period begins.

 

2004-2008:  Remission but no longer walking more than a few blocks at a time.  I work two jobs, both requiring major mobility and I manage, now in constant burning leg pain, which goes away when I sleep. I awake pain free until I walk.  I can no longer get in and out of compact cars.  I move to a new church with an elevator.  They put in a new handicap accessible bathroom downstairs in the parsonage because I cannot go upstairs, even one leg up sideways, my last stair adaptation.  I go to Guatemala with feet and legs hugely swollen—a trust journey.  I am so swollen, I need an extension to buckle my seat belt on the plane.  I return a week later, twenty-five pounds lighter, and I am able to stand for an hour without pain.  I feel restored as if I had never had a problem walking.  I determine to walk up and down a steep hill outside my house.  Within 3 days, I am back to my pre-Guatemalan state.  I cannot walk and my body swells.  The pain in my legs at night is again unbearable.

2009: This is the first year in a long while that I am very overweight.  I get less and less medical care because my immobility can be blamed on my weight.  I complain about my back and I ask my doctor for an MRI.  She calls me with the news that for my age my back is remarkably preserved. Amazing in fact. Two more specialists see me and say I am food non-compliant.  I get so bad, I walk with a walker.  I do weddings and funerals sitting on the seat of a walker.  No doctor monitors my increasing immobility. I have to lose weight if I want their help.  I recognize women who walk exactly as I do.

 

2011:  I am on permanent disability.  My knees are bone on bone, and if I have knee surgery, my specialist says the risk is so high for amputation, he will not touch them.  My weight is once again under control, manageable, stable.  I lose 4o pounds with no change in my walking.  I trade the walker in for two Canadian canes and I am somewhat mobile again.

 

2014.  Not much change except that my remarkably preserved back continues to seize on me when I stand for any length of time. My habitat becomes smaller and smaller. I seldom go to a show now.  I shop once in awhile, and I still keep my house presentable between my housekeepers’ weekly visits.  Because I am no longer flexible, falling comes easier. I am no closer to a wheel chair then I was in 2009, except those random times when a knee gives out or I injury my leg in some way.  On these occasions, I remember things I have lost, never to be found. I remember the chancy evil eye who teaches me about the fragility of life. I remember to fear the worst.

Then I dream I will walk again.  And so it goes.

Lipedema and eating disorders

By Tatjana van der Krabben

We sometimes read or hear about lipedema and eating disorders. Over time I encountered several ladies who had an eating disorder in the past. We know it’s there, but for me personally it was more like background information. A little surreal.

Today, on Twitter and on a forum I heard about a woman with lipedema who had developed anorexia. She lost the battle. Today it became more real than ever. Too real…

We all know what lipedema does. It takes nothing (much) to gain, but it takes blood, sweat and tears to lose weight. And you don’t get to lose it where you want it gone or to the point you want to lose it. At the same time many of us get encouraged to exercise more and eat less. Even by medical professionals and even if that is not realistic or what is truly needed. This is a red flag, people. A big one.

I got tempted to speak of support groups in this blog, but the truth is that eating disorders are a league of their own and very complex. Which leaves raising awareness, so people at least have a chance to learn about this piece of their health puzzle early. It’s good to see more and more lipedema patients are stepping forward and sharing their experiences.

Here’s to hope.

Is lipedema hereditary?

By Tatjana van der Krabben

Is lipedema hereditary? Interesting question. For starters, that is not proven. Yet? Another interesting question. If you ask me to speculate I wouldn’t go with hereditary full stop. And here is why.

Despite it often being quoted, lipedema is not a proven hereditary or genetic condition. Read the fine print; papers mostly say something like ‘possibly hereditary’ or ‘in part’. With family members displaying symptoms, one generation after another, going against the hypothesis of it being hereditary seems rather futile. Also, I can hear you gritting your teeth from here: “Is she implying I brought this on myself?!” Rest assured, I’m doing no such thing. But here’s some food for thought.

Regarding lipedema there are many assumptions going around. About percentages and numbers of women having it. Mostly 1 in 10 or 1 in 11 is mentioned to state the urgency of the matter. Sometimes in relation to a country or continent or even the world. Again, not proven. Worse, that’s just one estimate. Child et al (2009) came up with a minimum estimate of prevalence of 1 in 72.000. Those estimates are worlds apart. In a recent lecture dr. Damstra, a Dutch specialist, mentioned its occurrence in Asia is genuinely rare. So 1 in 10 in the world can’t be right. 1 in 72.000 sounds way to conservative to me; on an average summer day on a beach or in a theme park I encounter several ladies with lipedema. My point? Keep an open mind!

Am I playing it down? No. I believe the matter is actually getting more urgent. This is why. I’m coming from observation and am just hypothesizing, but the generation before me usually didn’t experience serious issues until menopause or a hysterectomy, often despite multiple pregnancies. As in, of course in retrospect there were some signs before, but their functioning was hindered only so much until then. My generation mblmmmb (read: forty-ish) experienced undeniable symptoms when pregnant. I now see girls still in their teens with stage 3. I also hear of more and more men getting diagnosed.

My generation did without junk food to mention of until our twenties. Soda bottles were made of glass until I was fifteen-ish and snacks and treats were limited to weekends and parties. I feel like we are the transitional generation in this picture. Of course in part this is the same debate as with autism and ADD etc.; is it getting more common or are more people seeking and getting help/diagnosis? No doubt more people seeking medical help has something to do with it. Something, but not all. I honestly see lipedema getting worse faster and faster.

Fact: the population as a whole is getting bigger. Fact: we get less exercise then we did in my grandmother’s day. Fact: our diet has changed tremendously from seasonally limited options and whole foods to mostly processed supermarket ‘food’. And here’s the thing we all know: let the average girl switch to granny’s whole foods and some exercise and her fat will melt away and with us not so much. Well, definitely not all of it. Also, we tend to gain faster eating the same type of food in the same portions. So, I’m leaning towards part circumstance and part predisposition. That would also explain how some manage to get virtually symptom-free by changing their lifestyle. If it’s genetics only, that would be rather strange, to say the least.

I’m not pulling a rabbit out of a hat here. Several researchers are hypothesizing along the same lines. This theory is telling me two things:

1. We run the risk of having an explosion of lipedema with young teens taking birth control already, supermarkets being the main food source for most which offers little whole foods and the increased digestion of xeno and phyto estrogens.
2. There’s a point to looking at circumstance and lifestyle. Change for the better what you can. Reduce inflammation, keep moving. Many are already travelling down that road with (some) success.

So, no, you are not to blame for developing lipedema. We all get caught by surprise, but please stay pro-active. It’s about quality of life. We all want it to be the best it can be. Right?

What to consider when searching for a surgeon to perform liposuction

This blog could never cover everything relevant, but it's a start, coming from personal experience and what else I learned along the way. I do not recommend liposuction. This blog does not provide tools to assess whether you should have liposuction. However, I receive many questions on where to start when considering liposuction and in that context I offer this information as food for thought. Preferrably, in an ideal world, you would be going over these issues with your informed doctor, or better yet with a specialist in a multidisciplinary institute, where they could answer all your questions and offer the treatment when considered a good candidate.

Learn what exactly you are looking for.
Liposuction, liposculpture, WAL, PAL, tumescent: are you still with me? It's ALL liposuction. All of it. And it's all tumescent. I love this quote of dr. P. Aldea:

"Tumescent liposuction is nothing but the universally performed pre-liposuction infiltration of the fat to be suctioned with a dilute solution of a local anesthetic (lidocain, marcain etc.) and adrenaline (epinephrine) which increases the accuracy of fat removal, largely reduced blood losses AND increases patient comfort."

Source: http://www.realself.com/question/tumesecent-liposuction-general-local-anesthesia

As dr. Aldea puts it: the anesthesia is supplemented. Meaning: tumescent infiltration of the area to be suctioned is a given, but the type of anesthesia is a matter of choice. But mostly not the patient's choice. I'll get back on that.

PAL, WAL, UAL, LA etc.
Along with tumescent, there often are additional specifications regarding the technique a surgeon applies. They can use a specific suction device like Power Assisted (PAL) or apply a thin water beam to help losen the fat from the tissue: Water Assisted Liposuction (WAL). There are more flavors out there. I highlighted PAL and WAL, because lately these are frequently mentioned on patient forums. However, as you can read through the link, these are not the only options.

As you can read they all are presumed to have their merits and do something specific to spare the lymph, do minimal damage, minimize risk etc. Ask a surgeon which is best and you'll get an answer. Ask another surgeon and you'll get another answer.

As a layman I noticed the difference of opinion between professionals and let it be. A certain surgeon prefers a certain technique. Well, apparently that technique suits him/her best. My personal choice was to get over the various terms which I could only ever understand superficially and looked at the surgeon's track record instead: knowledge of lipedema and years of experience. After all: the tool doesn't define the result; it's the surgeon's skill in using the tool.

Note: there's more research out there now compared to the time I had my procedures. If you want to know more about a particular technique and how it works compared to an other or the "plain" technique, there's far more information to be found. Go straight for the "boring" stuff: formal publications, in order to avoid information designed as a scientific-looking piece of marketing. The quickest way to cut to the chase is to search through Google Scholar. It only contains scientific publications.

Plastic surgeon or cosmetic surgeon
A plastic surgeon is trained in hospitals by professionals and has completed related residencies. Cosmetic surgery is not taught through residency programs. Doctors seeking to learn cosmetic surgery typically get their training after their residencies. This pretty much means a doctor would need to organize his/her own training and has a certain freedom the raise the bar to his/her liking. Cosmetic surgery is practised by doctors from a variety of medical fields. Read more about the differences here.

However, deciding between a plastic surgeon or a cosmetic surgeon based on the title only is a trick question. Plastic surgery does NOT equal (knowledge of) liposuction. There are numerous specialties within plastic surgery. Plastic surgery is first and foremost focused on reconstruction of defects due to disorders you are born with, trauma, burns and disease. Lipedema qualifies as a 'disease'. Care to guess how many hospitals acknowledge the condition and offer liposuction as a treatment option? Few. Very few. As a consequence there are few well-trained and informed plastic surgeons out there. For reference: tumescent, which is raved about as a major improvement to liposuction surgery, is invented by an American dermatologist, dr. Klein.

When considering a surgeon you best look at expertise and experience. While you're at it, also look at client/patient reviews. In that context, beware of posers, pretending to be content patients. In the past some clinics have used this despicable method to lure clients. It may still occur...

To improve cosmetically or to improve mobility and reduce pain
This is not about starting a debate. Your body, your choice. It's just very important to find out where your priority is and whether that priority matches with the surgeon you're considering for the job. It's not either/or per se. It can be a little of both. But trust me: there are surgeons out there with a 100% focus on mobility and they will NOT be open to a post-op debate over looks. Even when the result is very uneven and/or irregular. There's also the patient who, in her heart, wants killer legs (back). Again, not judging. Just make sure you set out for a realistic goal with a surgeon who is able and willing to help you strive for that goal. Strive, yes. We're quite the canvas to work with. It's no exact science.

You want a good or even super cosmetic result?
Ask. Ask for pre-op and post-op pictures of women much like you: size, build, with lipedema. Don't let the surgeon just show you his/her best work ever on young ladies with little excess fat and lovely elastic skin. There's skin elasticity and the condition of your connective tissue to consider. Ask about your personal possibilities and impossibilities and, if needed, try to adjust your expectations. It's better to know before than after when there's no going back.

Look for a surgeon with knowledge of lipedema
Typically, those seeking liposuction for purely cosmetic reasons need to have little fat removed. It's not designed as weight loss surgery. Many surgeons even refuse to operate when the BMI is on the high end. Many of these surgeons commonly remove 1 liter, maybe 2 per surgery. A drop in the bucket for most of us. We need someone who can and will remove more.

He/she would have to be aware of the fact that we need to be especially careful with our sluggish and sometimes already compromised lymphatic system. As well as: possible poor skin elasticity, weak connective tissue and possibly slower healing.

General anesthesia or local
General anesthesia in itself poses a (small) risk, on top of the risks inherent to liposuction. You can draw the line there or you can reason that didn't stop you in the past to, say, have your appendix removed.

General anesthesia burdens your body. When I insisted on general anesthesia myself in an entirely different procedure, my surgeon warned me it would take me more time to recuperate afterwards compared to undergoing the same procedure with an epidural. It simply adds to what your body needs to process when healing. Local anesthesia is also favored by some to have the patient able to move and, if need be, stand to assess the evenness of the result. On the other hand, the prospect of enduring the procedure wide awake can be stressfull. Maybe too stressfull for some.

If you are to opt for general anesthesia, you may need to look a little harder for a suitable surgeon. Many clinics can't or won't offer general anesthesia. It requires additional facilities, knowledge and assistance during the procedure. If not that, some surgeons truly want you awake to monitor your wellbeing themselves and have you participating by moving during the procedure.

Pre-op and post-op care
What is being checked and looked into to dertermine you are a suitable candidate? Is it thorough? Do you have a good feeling about this? Do you know the basics and were provided with information on how to prepare for the procedure, what to expect and how to arrange care post-op? How can you reach the clinic when you (feel) you need to? What if post-op complications arise? Who covers these expenses? Where can you turn to? This is particularly relevant if your surgeon is far from your home and you travel back soon after the procedure. At the same time: don't wait to be asked about specifics. Share your medical history and use of medication in detail.

Do inform your primary, even if he/she doesn't support the idea. Make sure they understand what you embark on so they can help in case of problems.
Obvious stuff? Sadly no. I still read about questions like: "Is it normal to still have swelling after a week" and "Is it normal the cuts ooze". That's basic stuff. You should be told about this sort of thing in advance.

Insurance
In rare cases the procedure is covered. Ask around on forum if someone from your country managed to get it covered and what they did. Even if the odds are slim, consider trying. Health Insurance companies need to become aware of lipedema and liposuction as a serious treatment option.

Also, think how far you want to take this. Going ahead with the surgery while still butting heads with your health insurance may ruin your chances of coverage. It may also lead to a road where you can't have the procedure done by your surgeon of your choice. Ask around. Patient forums on for instance Facebook are a wonderful source of practical information.

Living With Lipedema - Visiting Downtown San Antonio

A few weeks ago we took my mom's advice and decided to visit downtown San Antonio on a Sunday. We actually took Sunday and Monday in order to take advantage of the hop on / hop off tour from downtown. I was hoping we could catch the trolley at one of the missions near us, but after calling the company to confirm this idea it was out - we had to brave our way downtown.

I do recommend going on a Sunday. The traffic wasn't too bad and we were able to find parking.

We bought hop on / hop off tickets for the Alamo trolley on Sunday and got our second day passes for Monday. It was late afternoon so for this first trip around we just road the trolley for the one-hour tour and decided where we wanted to go the next day. 

The trolleys were all handicapped accessible, and that's important for those of us with more advanced lipedema. If you're traveling in a wheelchair or scooter, all the trolleys had wheelchair lifts. Some people got on the trolley then sat in a regular seat after boarding. Others sat in the back of the trolley in their chair. 

 We toured the Alamo that evening then came back for the downtown trek on Monday.

Our first stop was the King William neighborhood. We had an hour in this historic neighborhood. We walked past several historic homes and passed a few that were open to the public and made some plans to return on another day to tour the homes and grounds. We also walked along a portion of the RiverWalk, an 18 mile stretch of bike and walking paths that lead from downtown San Antonio along the river towards the missions outside of town.

The Riverwalk is very wide, accepting wheelchairs and powerchairs easily. However, not all access points to the walkway offers ramps for easy ingress / egress. There are maps of the Riverwalk so you can see what areas have handicapped ramp access available. 

We also visited Mercado, an indoor mall with several interesting Mexican imports. We're planning to go back for Christmas gifts. Then we hit the Main Plaza where we walked along the riverwalk some more.

One of the highlights was our boat tour along the river. As Bexar County residents, we even got a discount on our ticket. The sun was setting and the day was cooling off - the perfect time to be on the water. We saw several places we're looking forward to visiting on another trip and we learned a lot about the downtown area and the river. And I'm thankful that the tour guide mentioned getting to Hemisphere Park via the Riverwalk - a quick 5 minute walk and we were there instead of a 20 minute walk on the busy streets above.

The website for San Antonio Cruises says all boats are ADA accessible. Be aware that the boats can be pretty crowded. As you can imagine, they want to fill every seat. There are handrails for stepping in and out of the boats and the steps weren't too steep. 

We ended our day of sightseeing walking through Hemisphere Park, the site of the 1968 World's Fair. We walked over to the Tower of the Americas but didn't go up. It's on our list for next time. I did make reservations for a birthday lunch at the Chart House restaurant, a revolving restaurant at the top of the Tower.

Some tips for traveling downtown:

Parking - know where you want to park. All lots have a fee, but the ones run by the city are less than a private lot. If there is an event going on the parking may be more than listed. I started with the BestParking.com website and found a lot near the downtown area where we needed to be. It was a city lot and cost $2.50. We'd originally paid $10 to park on Sunday, so knowing about these other lots was definitely worth it. The website gives the address of the lot and I found it easily using Google Navigator on my phone. If you're staying in a hotel, walk downtown if you can or see if your hotel offers a shuttle into the area. If you need handicapped accessibility, be aware that some of the cheaper lots may be several blocks from downtown. 

Wear good shoes.

Restrooms can be difficult to find. On Sunday there were portable toilets set up but they were gone on Monday. If you're a paying customer, you're welcome to use the restrooms in the businesses downtown, but many have signs stating that there are no public restrooms. 

Check out the rest of the pictures from our Alamo / San Antonio trip in the album on DropBox.

Lipedema is NOT obesity

By Tatjana van der Krabben

Lipedema is not obesity. It's like comparing apples and oranges. We say apple - or rather pear - to our doctor, he/she replies orange. We've been going around in circles for some time. Some anomalies in our fat cells have already been reported, like hyperplasia of individual fat cells. The fat distribution in lipedema is also very distinct. Yet, we lose our primary at the word 'fat'. There wasn't much else to prove it's apples and oranges, not just oranges. The fact that our blood sugar, blood pressure and cholesterol is mostly normal? Dumb luck and ticking time bomb. Those who did have elevated values? Aha, they proved our doctors' point.

Times are changing. Research is changing. Recently I attended two lectures on studies that specifically compared lipedema and obesity and they found clear differences.

Smeenge, Damstra and Hendrickx found that patients with lipedema have muscle weakness. We have 30% less muscle strength compared to what is considered 'normal'. The obese control group didn't share this muscle weakness. This is unpublished at this point, but you can find a summary in English here.

Hoelen, Van Zanten and Bosman looked at the value of ultrasound as a diagnostic tool in lipedema. Again, in the control group obese women were included. I've seen the slides at the lecture in May. It doesn't take a medical background to spot the differences between the scans that were showed of a person with lipedema and of a person who is obese. Also, it was found that the BMI of lipedema patients doesn't match the circumference of their waist; it was smaller than you would expect based on the BMI number. Meaning: BMI doesn't add up for lipedema.* Again unpublished at this point, but you can find some information on this research in English here.

Lipedema is NOT obesity and some proof of that is finally coming our way. Why is that such a big deal? If you are on team obesity, you are, but if you're not, they should be looking at the issues you DO have, not what they assume they would be. They can't help us or think with us, if they don't see us for who we are.

In all fairness, I've seen studies in the past pointing at lipedema-specific pathology, but these studies are all but forgotten. Fingers crossed these studies get the attention they deserve and stick.

*Get in line, because BMI doesn't add up for a lot of different groups of the population. Also see my blog on BMI.

Lipedema captured on film

By Tatjana van der Krabben

On June 14, 2014 a Dutch Facebook group launched a short info film on lipedema at the NLNet conference. It’s in Dutch*, which may very well be gibberish to you, but I want to share with you the story of the making of and the message this group and myself as a member of this group would like to share.

In Augustus 2013 a member of the Lipedema Friends and Info Page started dreaming out loud: what if we could do an information film on lipedema in Dutch, something catchy, to raise awareness. A quick search taught us nothing like that had been made. Yet. And that’s when we got ambitious. It had to be catchy, not too long, provide useful information, have a feel good factor, a message, be suitable to incorporate into a lecture for a varied audience and professionally made, please and thank you. Why this long wish list? We could only – hope to – raise enough budget to do one film and the need for material to educate the public, (new) patients and medical professionals was there. It simply had to be versatile and of sufficient quality to take it places.

After that, like pieces of a jigsaw puzzle, everything started falling into place. Someone knew a professional filmmaker who was willing to help and shared our vision. Someone arranged at work we could use a space and facilities there to shoot the film. One of the members of the Facebook page who offered to help is also a board member with the foundation NLNet for lipedema and lymphedema. One thing led to another and NLNet offered us time at their conference to do the launch there. We formed a work group of four and raised the needed funds through crowd funding among the members of the Facebook page. All members were welcome to pitch in ideas for the film, after which I wrote the script. Then we asked members to participate. We got all stages and different ages represented: sixteen gorgeous ladies. We also made a conscious decision to show our legs anonymously and in motion. You know that distinct look of the back of your knee in advanced cases with that extra padding? You don’t see that from the front and moving images are also more attractive to watch. The film therefore shows the legs from all sides.

Every meeting we came to the same conclusion: we wanted motion, movement, energy! Movement became the theme. We need to move forward and we literally want to keep moving. In its wake came the second point we wanted to make: the value of early diagnosis. Catch it early and you preserve (most of) your mobility, energy and your true figure. Although the “spoon scene” explains how daily activities can drain you, we hoped to convey joy as well. Lipedema may interfere at times, but we certainly have a zest for life.

So far so good, but the only pro in da house on D-Day was the filmmaker. Sixteen women, knowing very well they would also be showing their legs later on and not so anonymously in front of this man. Not to mention eventually seeing it back on a BIG screen. But he worked miracles and approached the topic with great integrity and a little humor. Sixteen women, some already knew each other, others we only knew from Facebook until then, but at the end of the day we had bonded. I think it shows in the footage. A little secret from behind the scenes: at some point our chatting was so loud, we disrupted the filming of a scene in the other room. In the end we all sat in the same room to watch the scene being filmed to make sure we kept quiet for a bit!

Last Saturday with the launch it all came together. The group was almost complete, the filmmaker was present and we all got to watch it together. Afterwards we were asked to come on the stage and Henry Scheer, the filmmaker, gave a heartwarming speech and offered on the spot to also help us with an English version. So Henry, we got witnesses! Just kidding, he’s been a great support throughout. This, and the fact several therapists approached me immediately after to ask if they could use the film in future lectures, showed it was a launch in the true sense. And yes, they can use it. This is what the film is meant to do.
We started with a small snowball and now it’s picking up speed. Carry on little snowball. May you travel far and kick butt.

*English version of the film to follow.

Lipedema and me

By Sylvie Giroux

Have you ever wondered how it would feel to have healthy and beautiful legs? I sure did! More than once! Legs like dancers…slim yet muscular. Being short, I knew I would never have those long legs but I thought I could at least have slim ones. No matter how much calve or thigh exercises I did my legs would remain the same. I just thought I had huge legs muscles!  But as I grew older, I looked more and more like a pear. Had no idea why I was slim on top and this round on the bottom part of me!

To be honest, as long as I can remember, I always had a disproportion between my upper body and my legs. I would bruise easily too and for most of my life, I would try to hide my big thighs and was quite ashamed of them. At times, boys would make hurtful comments, which made me feel even more uncomfortable about they way I looked. I became to feel really uncomfortable about wearing a bathing suit in the summer and started wearing skirts only during the hot season! I was envious of all the others teen girls and what seemed to me their “perfect legs”! Funny I was attracting guys…could not understand why though and credited my killer smile for it!

I did get married in my early twenties, had three pregnancies and the last one was the most difficult for me, health wise since my legs swelled a lot. Since I was pain free back then, I just thought it was something having to do with hormones and that the swelling would go away after the birth. And it did. Many years later, in 2009, after some serious family problems, I ended up in depression and took a medication called Remeron. While taking it, I put on some weight. Even after stopping it...the weight gain continued and my thighs got bigger, my tiny waist was gone and my upper arms got bigger too. I had no idea why this was happening because I was not eating like a pig so I blamed it on the medication! My GP would only tell me that I was getting fat and that I needed to do something to loose weight since I had gained over 35 pounds in less than 2 years....I tried dieting, and nothing worked. To top it off, I felt tired all the time...I can't even remember when I did feel full of energy. I also had lots of headaches.

In October 2011, while at a friend's birthday party, something changed for me! A friend of my dear friend was there as well and he heard me say to a lady friend that I had gained a lot of weight since 2009. He came to me, told me he was a massage therapist who specialized in treating people with lipedema and lymphoedema and he asked me many questions about my legs. Then he explained what is lipedema and suggested I went to his clinic. He said that he was quite sure I had lipedema and I started the Manual Lymphatic Drainage at his private clinic after that. I was not diagnosed by a doctor because here, we don't seem to have any specialist for that in Montreal, Canada. At first, I felt both discouraged and relieved. At least, someone seemed to believe me and did not think I was "Fat" and all the symptoms I had over the years (constant fatigue, bruising, inability to loose the fat on my thighs) were all related to lipedema! Summer of 2011 was tough, had a lot of pain in my legs but this summer, not much at all...

I went to my GP again with all the information I could find on lipedema. She had no idea what I was talking about. Lately, I spoke with a PT who treats women with lymphoedema and she suggested I call a vascular surgeon in Montreal that may be able to "confirm" the diagnosis but she is not sure about that though. My MLD therapist was trained in Germany, he is treating lymphoedema and lipedema patients, he uses the Vodder technique and he told me that if I ever want to have a liposuction, I would have to go to Germany to have it. Because here, the surgeons could do more damage than good to my legs. 

From different support groups on Facebook I have met ladies suffering from lipedema, from USA, Europe, Australia and Africa and I have gained more knowledge about lipedema, what I should avoid eating and so much more. I no longer feel alone and this makes a huge difference for me. I'm exercising and I'm off wheat and follow a low-carb diet. I have my mind set on doing everything I can to not only manage this condition and to do my part in helping others suffering from it and I'm sure that with effort, more knowledge and time, we will be able to find a cure! I will post more about diet and exercises in another blog!

If any of you have a similar story to mine, KNOW that you are not alone!

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Read more by following the links in our Lipedema Awareness Blog Hop

Visiting San Jose Mission in San Antonio, TX

By Christina Routon

Since moving to San Antonio a month ago my life has been a whirlwind! But we've finally gotten the house (mostly) unpacked and settled into our new jobs. It's now time to do some sightseeing.

Mission San Jose is part of the National Park System. It's one of five missions set near San Antonio with the most famous mission being what's known today as the Alamo. We started our mission journey here because the visitor's center for the National Park Service is here and they have a 20 minute video about the indigenous people here and how they came to live at the missions.

Mission San Jose is known as the "Queen of the Missions" and is still an active parish today. In fact, all of the missions except the Alamo are active churches. The local diocese handles maintenance and repair on the church building while the National Park Service cares for the rest of the property.

For many of us with Lipedema, we have mobility issues or problems being on our feet for a long time. This mission is very easy to visit with a flat layout and paved trail around the courtyard in case you use a scooter or wheelchair. There are benches all around the courtyard and plenty of shade under the mesquite trees. There are about three steps going into the church if you want to go inside.

The weather was awesome the day we visited, with a nice breeze blowing through the trees. But sunscreen is definitely recommended in the Texas sun. The wind makes it feel cooler than it really is and I did come home with a bit of sunburn.

We'll be visiting the rest of the missions, including the famous Alamo, within the next month. If you want to see the rest of my photos from Mission San Jose, check out the shared album in DropBox.
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Every now and again we want to focus on the good things in the world. Just because we have Lipedema doesn't mean we need to give up all of our hopes and our dreams. We are a diverse group of women with awesome hobbies, jobs, families, knowledge and skills. I invite anyone who wants to participate to send in a post about how you're Living with Lipedema.

Other Lipedema lifestyle posts: Tatjana - Lipedema in the World

Lipedema conference - Part 2

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

The third lecture was by Wouter Hoelen, MSc, a therapist and one of the researchers involved in a study using ultrasonography for diagnostic purposes. With lipedema often being confused with obesity, this study focused on the question whether you can use ultrasonography to differentiate between obesity and lipedema. A nice touch: almost two years ago, at a Dutch lipedema meet, these researchers were given the opportunity to see test subjects on site. Those attending the meet had the opportunity to participate in the research if they wanted to.

Mr. Hoelen walked us through various slides, showing that you do obtain a remarkably different picture in lipedema compared to obesity. The fascia or connective tissue should reveal a layered image. The fat, as seen on an ultrasonographic scan, normally shows horizontally stacked little layers, marked by white lines. When showing a slide of a scan of lipedema tissue, the layers where fewer and not so neat. The fascia in lipedema shows less structure. The question was being raised whether that's (trapped) fluid. Another question that was raised was if this could explain lipedema pain and tenderness. The other matter being that this layered section of your fat is supposed to be flexible and mobile. This is now being hindered. For this, stretching was recommended.
In his lecture he brought up two more interesting points:

1. Despite lipedema being linked to puberty and beyond, he has observed suspicious characteristics in younger children.
2. They also found that BMI was not in sync with waist circumference in lipedema. Based on the calculated BMI you would expect a bigger waistline. (personal note: HA!)

Joyce Bosman, edema and physical therapist, explained about a new device called the indurometer. It's not on the market yet and she was among the happy few who got to test it for diagnostic purposes.

Lipedema and lymphedema cause changes in the tissue. The lymphedema skin tends to become tougher, the lipedema skin spongier. The indurometer measures to what extend the skin can be compressed to see if the skin has become either tougher or spongier.

Hopes are that the more accurately progression can be measured, the better treatment plans can be drawn up.

She truly stepped on it in this lecture, to allow for a little bit of time for a fellow board member of the foundation NLNet, Barbara Boots, to talk about the Dutch lipedema information film and show its trailer. A nice intermezzo - yes, I'm biased. This is the Trailer of the Dutch Lipedema Film with English subtitles. Note: it will only play on laptop or pc due to music rights that apply.

The fifth lecture was from three physical therapy students. The Dutch Lipedema Day Foundation had provided them with a research project as a graduation project. They set out to research appropriate exercise for lipedema and work towards a directive. It's all theory at this point, but they incorporated working on loss of strength and Graded Activity, to name but a few things.

The best part of it would be that the Dutch Lipedema Day Foundation has turned the tables. They don't only approach researchers to present their research, they also encourage research and point out where research is much needed. That brings me to their latest endeavour. Research is not only time consuming, it's costly. Everybody needs funds, few get it. The Foundation has introduced awareness bracelets and key chains at the conference to help raise funds for lipedema research. There are more lipedema events coming up in the Netherlands next month. So for starters they will be offered there.

The bracelets and key chains are grey and yellow. Grey for the large grey area regarding knowledge about lipedema. Yellow for the light, hope and progress that is being made. Not coincidentally the colors of the foundation. The text reads: Lipedema awareness and support. If you want to know more about the bracelets, please let me know in the comment section and I'll get back on that.

Lipedema conference - part 1

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

Lipedema Directive 2014

The day opened with dr. R.J. Damstra, dermatologist  and president of the Lipedema Directive 2014. The lipedema directive is the first Dutch set of guidelines for lipedema treatment, to be applied nationally. It was approved recently and is yet to be published.

It's multi disciplinary: doctors and therapists are supposed to contribute to treatment. It zooms in on functioning and limitations and encourages to look beyond the accumulated fat and also addresses, for instance, loss of strength, knee problems and foot problems. Liposuction gets a mention in this context, but strictly to enhance mobility when absolutely necessary. As dr. Damstra puts it: it's surgery and damage of the lymphatic system is realistic in surgery. Although he does acknowledge that today’s tumescent method is far, far safer than the old dry method.

It also encourages testing hormones for additional health issues: thyroid, adrenal glands, pancreas and pituitary gland. The patient’s weight is also addressed. Yes, 'weight'. After all, your weight may hinder you. This is not intended as a claim to say you can lose it all, if you only wanted to. This is about getting to be the best you can with this condition. He added the example that the population as a whole is getting bigger, which makes it an issue to each and all, including those with lipedema, to take responsability for their food intake, compared to their level of activity.

Dr. Damstra refers to lipedema as a chronic condition, much like diabetes. Something to learn to live with and monitor. He encourages a pro-active attitude and doesn't support endless sessions with therapists. He differentiates between treatment and maintenance phase, where the patient takes over and applies the tools as taught.

Dr. Damstra brought forward a couple of interesting statements throughout his lecture.

• To him lipedema is not lipedema until physical complaints beyond (some) fat accumulation occurs. So according to him, just having the pear shape doesn’t equal lipedema.
• Lipedema does not stem from a lymph vessel deviation, therefore it's not a lymphatic condition.
• Lipedema rarely occurs in Asia.
• Lipedema has not made ICD-10 recognition yet, because it's difficult to fit their criteria. For starters, naming the cause is required, which is unknown at this point.
• How come the feet are never affected? Feet barely have fat cells.
• Fat acts like a sponge and attracts water. The more fat, the more fluid you carry, but that does not make it (lipo)lymphedema per se.
  
  He also touched upon a few liposuction myths:
• There is no such thing as sucking away ‘all fat’. There will always be (some) fat staying behind, which is as it should be.
• Sucking out only bad or the wrong fat cells is not feasable. That would require screening one fat cell at a time to determine which could stay and which could be sucked.

Now, if I can nag about something: it doesn't say which diet is recommended. This is something they want to leave with the 'experts', dieticians. And we all know what most dieticians come up with: high carb, low fat. Plus, most are oblivious to lipedema. Hence the quotation marks.

I picked up something interesting regarding exercise. Dr. Damstra recommended Graded Activity (GA). GA suggests an exercise program that gradually becomes more demanding. You do the load as agreed with your therapist/coach. So you push yourself on a bad day and don't overdo it on a good day. Personally I haven’t been making progress in ages. I don’t go to the gym on a bad day and hit it hard on a good day, but this leaves me ‘only’ stable. So this is definately something I intend to apply.

Applying LPG

The second lecture was about LPG skin care using the LPG Cellu M6 KM machine. I’m naming the machine, because it was said this one was more powerful/effective than earlier models. It was tested on only 10 ladies, but it was interesting to learn a therapist thought it safe and possibly beneficial to try. 9 out of 10 reported positive effects like less pain and a less heavy sensation in the leg. The tenth lady was the only one at stage 3 and had to give up because treatments were too painful.

It was a small group and only 10 treatments, but I did want to give this a mention, because the question whether you can do this safely comes up a lot on forums. It’s a bit early, perhaps, to take a stand on that question, but it’s good to know it’s on the radar somewhere. She did warn about areas with varicose veins. She said it was best to work around it. Hopefully more tests can be done.