The first time I ever heard of this disease was just about a year ago. When I saw photos online and read more my mind was blown, because my legs look just like most cases in the stage 2 range. I inherited my legs from my mom who is part German and read that if you have German ancestry that there’s a big link between that and lipedema.. I have not had an official diagnosis yet, (I’m 54yo) because I can’t seem to find a doctor who can, however there is a plastic surgeon in my area about an hour’s drive from me who charges a substantial fee to do it, but I’m not entirely sure I want to have surgery by him necessarily.
I did however find a Physical Therapist who specializes in lymphedema as well as lipedema, and is very knowledgeable on the subject, she has been my saving grace so far. I see her every 2-3 weeks for MLD, she says my legs look consistent with having lipedema. She also measures my legs each time, and suggested I get a vibration plate to use everyday, as well as Bioflect leggings, and do dry brushing .. it all has been helping but only when I’m really consistent with it. She’s not an in-network provider so I pay out of pocket until I reach my deductible... Anyway I live in NJ, I have Empire BCBS insurance through my husband’s job. Any suggestions or doctor recommendations would be so appreciated.
I am also a 500hr CYT (certified yoga teacher) and am learning more about MLD, would love to incorporate both into a class just for lipedema patients. Something my PT and I have been talking about. I also never realized until recently that in many cases lipedema patients are also hypermobile (which I am and not because of yoga).
Look forward to chatting with you all more and thank you 🙏 for sharing and helping all your experiences and knowledge on the subject we are so in need of!
Hi Jackie, thank you so much for telling your story. I can tell you’ve done a lot of footwork to get care for yourself. Getting a diagnosis is difficult, but necessary if you want surgery. You’re already getting conservative care through your PT which is fantastic. Conservative care doesn't necessarily need a Lipedema diagnosis, but it is important in the long run for more extensive care if you need it later.
Is the surgeon you mentioned Dr. Boris Volshteyn? He is excellent. However, yes, most of the surgeons charge a substantial fee for a consult and it’s usually private pay (insurance won’t cover). if you arent ready for surgery, then don’t sweat the diagnosis part too much.
I am working on a workshop on how to get diagnosed. I’ll put more information out when I get closer to completing it.
Thank you for being here! Let me know if there’s anything I can help with.
Hi Michelle, sorry I must have missed the notification of your reply! Yes it is Dr. Volshteyn, and I’m so surprised you knew that! I found another surgeon in Tampa, Dr. Su his practice is called ArtLipo his specialty is women with lipedema his work is amazing he’s like a sculptor. But I definitely need help with figuring out the insurance end of it. I would love to participate in your workshop. Are you in the Portland, OR area? I lived there for almost 15 years, my daughter was born at St. Vincent’s.
yes, I’m in the Portland area! St. V is a fantastic hospital ☺️
If you are going to have a consult with Dr. Su, first ask him (before your appointment) if he will work with insurance, and if he has a BMI limit. Surgeon’s parameters for these two things are changing all the time, and I’d hate to see you wasting your time and money if you want insurance coverage for liposuction or if your BMI is over the surgeon’s limit. And of course, if you need someone to help you get preauthorized through your insurance, I’m here to help and I’m reasonably priced😉
Yay Portland I miss it so much, St V’s was fantastic. I will definitely ask those questions, thanks for the heads up. And when I’m ready to go all in with it I most definitely will ask for your help because I’m lost when it comes to insurance stuff lol. I am actually flying into Tampa in 2 weeks to have Parathyroid surgery, so need to square away other health issues first..
Hello! I found this group on TikTok while researching Lipedema. I’m 32 from Dallas, Texas. I’ve been struggling with lipedema for years and it’s been really hard for me. I feel so embarrassed about my legs I don’t wear shorts or dresses. In the Texas hear, it’s brutal. I’ve gone to several plastic surgeons in Dallas all all have given me the same quote around $20,000! How can I get this approved by my insurance? I currently have BCBS OF Texas, PPO. Help!
Hi ladies,
The first time I ever heard of this disease was just about a year ago. When I saw photos online and read more my mind was blown, because my legs look just like most cases in the stage 2 range. I inherited my legs from my mom who is part German and read that if you have German ancestry that there’s a big link between that and lipedema.. I have not had an official diagnosis yet, (I’m 54yo) because I can’t seem to find a doctor who can, however there is a plastic surgeon in my area about an hour’s drive from me who charges a substantial fee to do it, but I’m not entirely sure I want to have surgery by him necessarily.
I did however find a Physical Therapist who specializes in lymphedema as well as lipedema, and is very knowledgeable on the subject, she has been my saving grace so far. I see her every 2-3 weeks for MLD, she says my legs look consistent with having lipedema. She also measures my legs each time, and suggested I get a vibration plate to use everyday, as well as Bioflect leggings, and do dry brushing .. it all has been helping but only when I’m really consistent with it. She’s not an in-network provider so I pay out of pocket until I reach my deductible... Anyway I live in NJ, I have Empire BCBS insurance through my husband’s job. Any suggestions or doctor recommendations would be so appreciated.
I am also a 500hr CYT (certified yoga teacher) and am learning more about MLD, would love to incorporate both into a class just for lipedema patients. Something my PT and I have been talking about. I also never realized until recently that in many cases lipedema patients are also hypermobile (which I am and not because of yoga).
Look forward to chatting with you all more and thank you 🙏 for sharing and helping all your experiences and knowledge on the subject we are so in need of!
Hi Jackie, thank you so much for telling your story. I can tell you’ve done a lot of footwork to get care for yourself. Getting a diagnosis is difficult, but necessary if you want surgery. You’re already getting conservative care through your PT which is fantastic. Conservative care doesn't necessarily need a Lipedema diagnosis, but it is important in the long run for more extensive care if you need it later.
Is the surgeon you mentioned Dr. Boris Volshteyn? He is excellent. However, yes, most of the surgeons charge a substantial fee for a consult and it’s usually private pay (insurance won’t cover). if you arent ready for surgery, then don’t sweat the diagnosis part too much.
I am working on a workshop on how to get diagnosed. I’ll put more information out when I get closer to completing it.
Thank you for being here! Let me know if there’s anything I can help with.
Michelle
Hi Michelle, sorry I must have missed the notification of your reply! Yes it is Dr. Volshteyn, and I’m so surprised you knew that! I found another surgeon in Tampa, Dr. Su his practice is called ArtLipo his specialty is women with lipedema his work is amazing he’s like a sculptor. But I definitely need help with figuring out the insurance end of it. I would love to participate in your workshop. Are you in the Portland, OR area? I lived there for almost 15 years, my daughter was born at St. Vincent’s.
yes, I’m in the Portland area! St. V is a fantastic hospital ☺️
If you are going to have a consult with Dr. Su, first ask him (before your appointment) if he will work with insurance, and if he has a BMI limit. Surgeon’s parameters for these two things are changing all the time, and I’d hate to see you wasting your time and money if you want insurance coverage for liposuction or if your BMI is over the surgeon’s limit. And of course, if you need someone to help you get preauthorized through your insurance, I’m here to help and I’m reasonably priced😉
Yay Portland I miss it so much, St V’s was fantastic. I will definitely ask those questions, thanks for the heads up. And when I’m ready to go all in with it I most definitely will ask for your help because I’m lost when it comes to insurance stuff lol. I am actually flying into Tampa in 2 weeks to have Parathyroid surgery, so need to square away other health issues first..
Thank you, Jackie! I'm here whenever you need me.
Hello! I found this group on TikTok while researching Lipedema. I’m 32 from Dallas, Texas. I’ve been struggling with lipedema for years and it’s been really hard for me. I feel so embarrassed about my legs I don’t wear shorts or dresses. In the Texas hear, it’s brutal. I’ve gone to several plastic surgeons in Dallas all all have given me the same quote around $20,000! How can I get this approved by my insurance? I currently have BCBS OF Texas, PPO. Help!
Erica, I would like to help you, send me a message if you're interested.
I’d love to help you with that. your insurance may have benefits for lipedema surgery. if you’d like to talk more with me about it, then go to my calendar and make an appointment with me. Here’s my link: https://calendly.com/lipedemaandme/25-minute-consult-with-michelle-jaqua