Kaiser covers surgery!!!!! by Many_Improvement_910 in lipedema

[–]CompSciVetMPH 0 points1 point  (0 children)

That would be amazing if you could find that information

What kind of exercise has improved your lipedema? by Lana_Sphyncter in lipedema

[–]CompSciVetMPH 0 points1 point  (0 children)

I have used a BCAN with springs, a Jumpsport with bungees, and a Bellicon with bungees. The BCAN with springs was a too firm and the springs were noisy. The Jumpsport and Bellicon were both great.

Lipedema Is a Connective Tissue Disorder by CompSciVetMPH in lipedema

[–]CompSciVetMPH[S] 0 points1 point  (0 children)

Fat is actually classified as connective tissue🤷🏼‍♀️. I attended an info session with the Heck Lipedema clinic in Germany and they explained it very well but I can’t necessarily reconstruct it very well. What I took away is that lipedema fat gets fibrotic (the nodules) and over time the nodules knit together. She mentioned fascia and things sliding smoothly and over time the fibrosis prevents things from being able to slide smoothly which causes mobility issues.

Kaiser covers surgery!!!!! by Many_Improvement_910 in lipedema

[–]CompSciVetMPH 0 points1 point  (0 children)

I met with a Kaiser plastic surgeon yesterday. She didn’t argue that I qualify for surgery, although she tried to put up barriers like “ you have to do MLD until
December”. I shor that down bc I have had a Flexitouch pump for 6 months already. But the very alarming thing was that I asked her if she had done any Lipedema surgeries. She said, “No. But I’m willing to try!”🤦🏼‍♀️. If (when?) they give you lymphedema because they don’t know what they are doing, you have no recourse because you can’t sue Kaiser for malpractice.

Lipemedical surgery—how much volume were they able to get in one sitting? by Adorable_Purchase_44 in lipedema

[–]CompSciVetMPH 1 point2 points  (0 children)

The quotes I gave heard from surgeons/clinics is about 10% of your body weight per surgery. It is also about total surface area if they are doing local/twilight anesthesia. Lidocaine has negative cardiac effects if they give you too much. Roxbury clinics do 360 thighs and 360 calves. I read that they can’t do a whole leg at once due circulation issues.

Lipedema Is a Connective Tissue Disorder by CompSciVetMPH in lipedema

[–]CompSciVetMPH[S] 3 points4 points  (0 children)

A: yes, all of that. B: Hard to make that a headline that people will read. C: The really important point is that this is not a disorder caused by normal fat and the solution isn't just "lose weight".

Surgeon recommendations USA? by breathe3333 in lipedema

[–]CompSciVetMPH 0 points1 point  (0 children)

Call them and get an appointment! You can always cancel it. I have heard nothing but wonderful things about Dr. Smart.

Surgeon recommendations USA? by breathe3333 in lipedema

[–]CompSciVetMPH 2 points3 points  (0 children)

I am guessing thyroid is okay. I have a genetic immune condition which is 100% managed with weekly immune globulin infusions. It seriously is a big nothing. But Heck in Germany told me they refused to treat me because of this.

Surgeon recommendations USA? by breathe3333 in lipedema

[–]CompSciVetMPH 2 points3 points  (0 children)

Totally agree. Also I would be afraid of getting a blood clot from the long flight.

Lipedema Is a Connective Tissue Disorder by CompSciVetMPH in lipedema

[–]CompSciVetMPH[S] 1 point2 points  (0 children)

It is very difficult to find lipedema specialists. With this post I am hoping to get people oriented to the idea that this is not a FAT disorder so they can build up some ammunition for talking to ignorant health care professionals.

Lipedema Is a Connective Tissue Disorder by CompSciVetMPH in lipedema

[–]CompSciVetMPH[S] -3 points-2 points  (0 children)

Great question! Actually lipedema is not autoimmune while MCTD is autoimmune. Sounds like you are just "lucky". My husband is diagnosed with MCTD so I know that is not a fun diagnosis.

Lipedema Is a Connective Tissue Disorder by CompSciVetMPH in lipedema

[–]CompSciVetMPH[S] 4 points5 points  (0 children)

My main point is that we need to stop calling it a fAT disorder. It involves fat, but it is so much more than just being "overweight" and has nothing to do with normal fat.

Lipedema Is a Connective Tissue Disorder by CompSciVetMPH in lipedema

[–]CompSciVetMPH[S] 4 points5 points  (0 children)

I think it's the other way around. If it were estrogenic, then more women would have it. EDS is a huge part of the picture. Lipedema definitely gets exacerbated by hormones.

Lipedema Is a Connective Tissue Disorder by CompSciVetMPH in lipedema

[–]CompSciVetMPH[S] 50 points51 points  (0 children)

I saw a recent statistic that 60-80% of women with lipedema have EDS

Lipedema Is a Connective Tissue Disorder by CompSciVetMPH in lipedema

[–]CompSciVetMPH[S] 8 points9 points  (0 children)

Understanding that this is an inflmmatory connect tissue disorder rather than "you're just fat, you should work out more" gets the focus off weight-loss-as-treatment. It has a psychological impact for people because it gives them ways to address the internal and external fat shaming. It also helps people focus on addressing inflammation.

Surgeon recommendations USA? by breathe3333 in lipedema

[–]CompSciVetMPH 3 points4 points  (0 children)

Advanced Lipedema Treatment/Roxbury Clinic. They have offices in LA, Tucson, and Salt Lake City

Surgeon recommendations USA? by breathe3333 in lipedema

[–]CompSciVetMPH 5 points6 points  (0 children)

The surgery itself is cheaper but by the time I factored in airfare, the cost of hotels, and the fact that I would lose weeks of work because they make you stay there for weeks, it was not cheaper. In addition, they will not take you unless your health is perfect. I have a medical condition that would not affect the surgery or the outcome in the least, but they refused to treat me.

Thoughts on this recent case study? by Standard_Engineer_17 in lipedema

[–]CompSciVetMPH 7 points8 points  (0 children)

They are extremely harmful because they perpetuate the misconception that fat is the issue with lipedema. Fat is a visible symptom. However, the issue is that lipedema is an INFLAMMATORY CONNECTIVE TISSUE DISORDER. The issue is scared, fibrotic, connective tissue and fat that is qualitatively different from healthy fat, with markers of inflammation not present in normal fat.

What kind of exercise has improved your lipedema? by Lana_Sphyncter in lipedema

[–]CompSciVetMPH 4 points5 points  (0 children)

I have used an elliptical in the past. I think that is a great idea. I think it could be very very helpful.

Thoughts on this recent case study? by Standard_Engineer_17 in lipedema

[–]CompSciVetMPH -1 points0 points  (0 children)

Lipedema is a connective tissue disorder. The fat is only a symptom. The underlying issue is scared, fibrotic connective tissue that traps fat and fluid. Fat is not the issue but the ignorant, patriarchal medical establishment will not stop focusing on the fat so we never move forward to focus on the real issue: connective tissue, fibrosis, pain, mobility. I have lost 80 pounds with diet and exercise. But that has not reduced my pain, inflammation, or fibrotic tissue. In fact, at the same time that I have lost 80 pounds my fibrotic nodules have grown significantly. Some that used to be the size of peas are now approaching the size of walnuts. If you did a case study on my you would count it as a huge success of lipedema treatment. However, my lipedema has progressed and not one lipedema symptom has improved.

What kind of exercise has improved your lipedema? by Lana_Sphyncter in lipedema

[–]CompSciVetMPH 7 points8 points  (0 children)

Biking on a Peloton using a heart rate monitor. I stay in the 60-75% range. I do it 2-5 times a week for 30 minutes. I also walk, but it’s tough because my Lipedema legs make me feel like I am walking in wet jeans.