My first surgery was lower legs and arms. The surgeries are under local anesthesia so I was awake. Dr. Emer made me comfortable with valium and pain meds but it was still intense at times. Mostly nerve pain.. There were some ouches, oh mys, OMGs, fist clinching, pounding, squirming…. But I didn’t cry or scream…. Despite the uncomfortableness…. Here is me with Dr. Emer immediately following surgery. I am happy I did it!!!!
April 28 – All the walking in the heat yesterday made my lipedema pain flare (thank God I’m having surgery!) Since my surgery wasn’t until late afternoon, I opted for a pedicure (sans lotion, no lotion day of surgery) with a neck massage. Then stopped later for a foot massage. Good choices. Back to the hotel to bathe in Hibeclens, an antibacterial cleanse before surgery. The surgery center was stacked up, so I didn’t get back until later which meant I didn’t leave until 11:30 pm. I was starving after surgery, so we ordered delivery.
After my diagnosis of lipedema, I started wearing compression and taking some supplements. I did find compression moderately help with the pain, I was able to ascend stairs a tiny bit better than I had in the past.. but wearing compression is hot and bulky under clothes. The vasculera that Dr. Herbst prescribed for me made me pee alot and was making my stomach more squishy. I went in for MLD (manual lymphatic drainage) whenever my schedule allowed..it felt good but I wasn’t shrinking. I didn’t retain fluid like many others. I routinely don’t swell (I count myself fortunate). Although I had been working out and eating a paleo diet, I wasn’t seeing much improvement in my appearance. Eating Paleo certainly made me feel better and significantly reduced the inflammation my body retained.. Honestly eating Paleo provided more relief than any of the other conservative treatments combined.
April 27 – we arrive in Beverly Hills. If you have never been to LAX, please keep in mind it’s a pretty awful airport. It’s old and dirty and gross. I felt like I needed a shower after being there! I am lucky to have a colleague out here who volunteered to pick us up from the airport. Richard, my amazing boyfriend, accompanied me for over half of my 11 day journey. We settled into the hotel, went for a late lunch and then to my pre-op appointment. This is where the doctor physically examined me since I was out of town and had only seen pictures of me. I signed my consent forms, and got my prescriptions for pain meds. (they can’t be called in). Well there must be a narcotics crisis in Beverly Hills because we had to go to three pharmacies to get them filled! I felt like such the drug seeker! In our quest for drugs, we wandered down Rodeo Drive and the surrounding areas. I’m only a few blocks from there.
I was diagnosed with chondromalcia in my knees a few years back. I asked my Ortho doc at the time what could cause it and he said overuse…. It’s a condition typically found in athletes and here I had it in my 30s. My knees make clicking noises when I climb stairs. I lost 20 pounds but still no relief. I went to PT and still nothing. I avoid stairs and when I do have to take them, I look like an 80 year old lady rather than an otherwise healthy 40 year old. I went to a conference back in September and Dr. Stutz in Germany talked about the gait issues that lipedema patients face and how liposuction for lipedema can help to avoid future joint replacements. My decision for liposuction was sealed!
Here is an article from the esteemed Dr. Stutz: Stutz JJ Liposuction for Lipedema to Prevent Later Joint Complications English
After much research and consideration, I chose Dr. Jason Joel Emer atJason Emer, MD in Beverly Hills, CA for my surgeries. I had met Dr. Emer at the Fat Disorders Research Society, Inc. conference back in September and we really clicked. Having a good relationship with your doctor is important and I felt Dr. Emer could give my high maintenance self (yep, I just said it!) the type of support and extra attention that I need. Although my # 1 priority was ridding myself of the pesky lipedema fat that causes me pain and limits my mobility, I figured if I was spending this kind of money and going through this type of surgery, I also wanted it look good! A friend I met at the FDRS conference had surgery with Dr. Emer and had wonderful things to say and Dr. Emer’s reviews on RealSelf were spectacular. I was also impressed with Dr. Emer’s training and education. He trained at great institutions under leaders in his field. I will say, due to my career, I am very particular about who I seek medical treatment from. I was initially hesitant about choosing a dermatologic surgeon. But I was enlightened that it was a dermatologist who invented tumescent liposuction and liposuction is part of their training program. My choice was set. And I’m so happy that I did. You may be wondering, why would I chose a surgeon in Beverly Hills to do my surgery? There are a limited number of surgeons in the U.S. who even know what lipedema is, much less treats it. I had to go to Tucson, AZ to get my diagnosis! I am beyond grateful that I have the opportunity and means to do make this all happen. I borrowed money from my 401(k) and have 5 years to pay it back. It was a great interest rate and a good way for me to finance the surgeries and the expense of travel, hotel, etc.
On December 29, 2014 I went to see (as a patient, not for work) Dr. Karen Herbst at the University of Arizona in Tucson – she’s an endocrinologist that has made her life’s work adipose tissue disorders. On top of being a great doctor, she’s a great human being.
She officially diagnosed me with a fat disorder called Lipedema. You’ve probably never heard of it as it’s a highly underdiagnosed condition in the U.S. (despite it’s discovery in the 40’s at Mayo…) It explains my body shape (small on top and large on the bottom) and why I carry fat in my legs, hips, and butt. It has spread now into my arms and abdomen. Lipedema fat is different than regular fat – it feels different to the touch (think tiny pebbles under the skin) and it cannot be lost by diet and exercise.
My story, like so many others, is getting discouraged about not losing weight despite caloric restriction and exercise. Women with lipedema often gain weight even while dieting and exercising. We generally have lots of inflammation so what we eat is critically important, rather than the calories themselves… There are cases of anorexic women with lipedema, too.
Lipedema’s etiology remains unknown and it remains underdiagnosed. What is known is that our lymphatic system is “shot”. Patients with Lipedema have lymphatic dysfunction that makes fluid sit in the tissue with all its nutrients and protein and fat grows. In addition, there is widespread pain – for me, it’s mostly to the touch. Touching certain parts of my body cause extreme pain, even with a light touch. I ache frequently and have suffered for years with fatigue (but have kept that to myself mostly.)
Liposuction is the only known cure. It has to be either the WAL (Water Assisted Liposuction) or tumescent methods, no general anesthesia and performed by a doctor who understands lipedema and therefore understands how to preserve/spare the lymphs. Women with lipedema who have had “regular” liposuction most often develop lymphedema (think breast cancer patients) and their legs get bigger. I’ve seen a few photos. Terrifying.
I’ll now start researching my options for surgery. This type of surgery has been pioneered by the Germans. The few surgeons (and I mean there literally are 5 surgeons) in the U.S. mostly were trained by one German surgeon in particular – and this occurred back in August. Being a guinea pig as the U.S. surgeons perfect their technique isn’t quite as appealing to me. I’m seriously considering going to Germany.
What I can do before I have surgery:
• Continue with Manual Lymphatic Drainage (MLD) – I go to a therapist for this to get this done to get the lymphs moving. I can feel the fluid moving through my body. It feels like someone opened up a valve. It makes me pee afterward.
• Get a lymph pump – the doctor thought this would be good for me since I travel and can’t get the MLD routinely.
• Take Butcher’s broom supplement (improves lymphatic pumping) and Vasculara (prescription medical food) to help with the edema (maybe Selenium as well to decrease edema)
• Wear a low compression garment (Oh, boy, I can’t wait)
• If I had a room in my apartment, I would get a whole body vibration machine (the doctor suggested I find someone who has one and pay per use, she thinks this is very effective at improving lymph flow.)
• CVAC – it’s a high performance altitude simulator for improving blood flow and oxygenation in tissues. Very effective at reducing pain.
• Continue with a Paleo diet – she recommends a RAD (an anti-inflammatory diet) but was pleased I found Paleo and supports it. She was also very happy I gave up Diet Coke (I admit, I have an occasional one…) The Paleo diet has been great for me for reducing pain. I can feel it. Feel it when I stray (which has been the past 2 weeks, especially…)
Mobility (and pain) is a huge concern with lipedema and a major reason (other than cosmetic) that I want/need the surgery. I have chondromalcia in my knee (that’s why I struggle with stairs and any weight bearing on a bent knee (no lunges, squats, etc.) I did ask the German surgeon (Dr. Stutz) at the conference I attended in September if surgery would correct the chondromalcia and he said absolutely. In his photos you can see a huge change in the gait of his post-operative patients.
I also have a hypermobility syndrome known as Ehlers danlos hypermobile type. She called my knees “wobbly.” Interestingly, during the history, I was inquired about sprained ankles (I’ve sprained them at least 4 times).
Ready to start these new supplements and see what effect they have. I will never be thin or have nice legs and I’m OK with that. I can stop this from getting worse and keep my mobility and put my pain at bay. Although I wish I would have been diagnosed at Stage 1, I’m only a Stage 2. Advanced stages struggle significantly with mobility.
I want to share my story so that others can get the help they need, too. I’m fortunate that I know now what it is and have a plan.
Cheyenne's Lipedema Journey 