With regard to the denial by the insurance company for the vein surgery I suggest the following: my husband had a condition that was denied by his insurance company. I appealed the decision within the 30-day time frame as required. Not only did I do that, but I went to every doctor that he had ever gone to that could verify he had the condition and implored them to write letters to the insurance company detailing the condition and why it was necessary to cover the treatment. Then finally I spoke to his employer's HR department benefits person and told them that as a major employer the insurance company should be very interested in keeping them happy. They needed to take care of their employees, so I needed her to write a letter to the insurance company and say that if the doctors were saying that he needed this treatment as a medical necessity, that as his employer, they wanted him taken care of. It was an incredible undertaking but he in the end was given the procedure because the appeal was granted. It may not work for you, but it is worth a try.
You are so right about the power of persistence @sharrellkline5501! We have to become advocates for ourselves and our loved ones otherwise they roll all over us. I'm so glad to hear you were successful. To my great surprise, I was too! My HR department contacted me today to say they were updating the policy to cover the treatment. It will take a few months for the whole process to work itself out, but I should be able to have it done before the end of the year. Sometimes miracles do happen 😄 Thanks so much for sharing your story ❤
For those on Medicare... I was referred by my cardiologist to a Lymphedema Treatment clinic in Houston, TX. After 6 wks of compression, pumps, & massages, they referred my case to Medicare. And yes, Medicare paid all of my cost for a complete full leg pneumatic pump.
That's wonderful to hear @14wheels75! Starting next year, a lymphedema diagnosis should also help us get at least some compression garments covered by insurance. I hope the pump in helping and you are getting some relief 💕💕
Wow!! Who would’ve thought how much out of pocket expense goes into our condition. I am at the beginning of my journey and am fortunate the my medical insurance covered 100% of the cost to buy my flexitouch plus compression system. I am so thankful. I’m going to be using it for the first time tonight and will be taking pics often to hopefully see results. My insurance also covers seeing a dietitian which is challenging for them to figure out my triggers and so forth. It’s all trial and error and a huge amount of time and focus on myself but I am worth it and will try anything. Thank you for the breakdown of your costs and big hugs to you as you continue your journey!😊
Thanks, Karen! Lipedema is a lot of work but YOU ARE SO RIGHT that you are worth it 🤗Good luck with your FlexiTouch. Mine was very helpful for me, especially at the beginning of my journey. Can you imagine I started out using it 2 hours a day because with the extended size garments you can only do one leg at a time? It did a lot to move the fluid out of my legs. I hope it helps you too! Just make sure you elevate your feet while using it to take advantage of gravity. You can see my set up in this video (ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-DRqRvho0Jig.html) I'm so glad your insurance is also going to help with a dietitian. Hopefully they can help get to the root causes of your inflammation - it's different from all of us! Stick with it ❤❤
Right, Lila? It seems like it would be cheaper for them to help us before it impacts mobility and other things 🙄 All we can do it keep raising awareness so things get better for our little sisters and daughters ❤
The insurance companies would spend so much less money in the long run if they would just help us now. I'm in California have been recently diagnosed. I guess there have been lawsuits against the insurance companies so they are now paying for treatment, but will try to deny at first, of course. It's a battle. I feel like I have to keep educating doctors, they don't know about lipedema. I had one doctor (endocrinologist) keep trying to correct me and tell me there's something called lymphadema. Good grief! I sent him a bunch of studies and medical info. It's incredibly frustrating and sad that we have to go through all of this in addtion have to deal with the condition itself. The treatments aren't a cure or a fix. We still have to deal with the physical, emotional, and social effects daily. Nobody wants to have to go through all of this. It's not a choice. Thank you for all of your hard work and dedication in helping others with lipedema.❤
here in germany MLD, compression (1-2 pair every 6 months) and sometimes aqua gymnastic (depending on how cooperative the doctor is) is covered. but the rest is on yourself too. I found your channel yesterday and today I ordered a food sencitivity test, I´m looking up keto diet and I ordered a vibration plate (with 6 months payment plan)... Everything else has to wait because I have a montly budget and that is gone now for this month... on the 9....
Firstly Rebekah I am sending you big virtual hugs and cuddles xx 😘 Thank you so much for sharing this sincere and touching video regards to your personal costs and maintenance with this awful condition. In the UK we have our NHS and long may it continue. I was give prescription for two compression leggings and all appointment are free and also vein surgeries. liposuction is not covered. I completely understand regards to compression tights but I look at it now as just purchasing new underwear. I also have my list vitamins ie Omega 3,Iron, Turmic. My red light belt and massage gun are from Amazon, no need for expensive gargets as dry brush is effective!!. 😊 I have not had manual drainage done but I know that you can learn from RU-vid from professional therapist. You take care Rebekah and have a good week ahead. Thank you for everything you do for us, your simply fabulous. Xxx
Thanks, Kam! I'm so glad to hear the NHS takes care of so much for you. We certainly got some things wrong in the American system and are now kind of stuck with it 😆 Thanks for mentioning the dry brushing. I haven't talked about that much but you are right that it's a great low cost way to move lymph. Relaxing too! I agree with you on the compression too. I'd say if you can only afford one thing, buy compression ❤❤ Sending you some 🌞
New Federal Law, Lymphedema Treatment Act, was passed 12/23/22. It will go into effect 1/1/2024. It will improve insurance coverage for the medically necessary, doctor-prescribed compression supplies for diagnosed conditions.
Yes! You're ahead of me @14wheels75 - I just posted this on another one of your comments 😆 It's great news and hopefully will be able to expand to lipedema and other conditions over time ❤❤
My internal med Dr. Thought I was saying I had lymphedema but I told him lipedema, which he never heard of. I tried to show him and have him palate the nodules under my arms, but he kind of just brushed me off.
What a jerk! I'm sorry to hear that @chrispierce9699. Unfortunately that is a common confusion and response from doctors. I'd try another doc. If you can, find a vascular and lymphatic specialist. They are the most likely to know about it or at least be open minded.
I’m also about to spend $12k (AUD) on 2 x vein surgeries 😫 I will need 4-5 liposuction ops totalling about $65k. Private healthcare in Australia doesn’t cover this condition but I will get a little bit back on Medicare.
Seems like then that the surgery is worth it. It can alleviate so much of the headache. The surgery may not be covered by insurance and can be $10,000-$50,000 but it’s more permanent if you haven’t gotten too bad and your doctor specializes in this treatment
I am feeling quite discouraged in my attempts to address my triple issue of lipedema, venous insufficiency and lipedema. I can't figure out the right order to do things in: First do the pump massage, then the reduction, then the compression? Do the pump massage at night? That seems like it would be better to do massage before moving around, taking advantage of the increased lymph flow. I can't find compression hose that isn't really difficult to get on - it took me forty minutes today to get on the pantyhose, and it was uncomfortable. I'm not sure it's worth keeping trying and wonder how bad it would get if I just let it be.
Question - what kind or brand of pump do you have? Thanks for all you do to encourage all of us. You are so right. 14K is a big ole number! Just started following you about six weeks ago. Love your soothing calm voice! Thanks. Ruth
Hi Ruth! Welcome to the channel and thanks for your kind words 🥰I currently have a FlexiTouch Plus from Tactile Medical. (I do a demonstration with it here ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-DRqRvho0Jig.html). A lot of women in the community love the LymphaPress, though because it doesn't require as much adjusting day when you use it - you just slide in. I saw a demo one at the FDRS conference in April and am working with my doctor to see if I can switch now that I have to buy a new one anyway. ❤
Thank you for sharing this. I’m wondering: does your swelling get worse if you catch something like the flu? Is there anything extra you do for this? 🙏🏻
I'm just starting this journey, so I have no idea how Medicare and my Medicare Supplemental Plan G insurance handles lipodema and tge related costs. Anyway, I hope your company will change insurance plans to help you out. (Just a note, as an older woman, I think the years of wearing support hosery was actually worth the morning tug of war. Those pantyhose functioned like compression wear.)
Hi Carla! Thanks for your kind words. I totally agree about compression. If people can only afford one thing I would *hands down* tell them to invest it that. Big hugs ❤
@Anita Carmon-Crawford In the US, our basic retiree healthcare plan is Medicare. It is totally insufficient, so most people buy a supplemental plan. I bought Plan G, which is supposed to be a very good plan. We'll see.
Hello. You mentioned varicose veins procedures. May I ask you if you needed them directly in connection to lipoedema or they hurt regardless? I’m about to make a decision whether to have the op or not. Thank you
Hi @1969strangelove! I Have you found my video about my vein treatments yet? It not, there's more information in here: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-7F1O7_70bB0.html In my case it's likely that my bad veins were accelerating my lipedema and lymphedema. When the lymphatic system is struggling the circulatory system works harder to try to help it out. For me, it overwhelmed my weak veins and one problem fed into another. At the FDRS conference Dr. Herbst said several times that "fat loves a fluid rich environment." For me, treating my veins reduced my swelling which almost certainly also helped my lipedema. Does that help at all? Good luck with your decision ❤❤
@@sturdywoman of course it helps. You are always super kind. I am down for some Foam Sclerotherapy next Thursday in the hope to treat part of my incompetent large saphenous vein or what it’s left of it. This isn’t my first vein procedure but is since been diagnosed with Lipoedema. Just hope it’s not going to damage my lymphs nodes or nerves. Xx
72 year old here. “No ankles” was just considered hereditary in my mother’s and our family. Much later to find out lipedema. I started worrying in last 9 years after total knee replacement. I now have more fibrotic nodules in both legs due to lymphatic system I guess. I would love to have liposuction and manual extraction of nodules by Dr Jamie Schwartz in Beverly Hills,( not because he’s in Beverly Hills….. I live in Ohio, but because he manually extracts these larger nodules that do not fit through liposuction cannulas) BUT, as you say, Insurance does not cover because Doctors don’t even know about it. I agree with you on the keto diet or even Carnivore diet. Thank you for all you do!
Hi Peggy! I saw Dr. Schwartz present at the FDRS conference back in April. Definitely an interesting technique! Did you know that his mom has lipedema? I know women are increasingly getting their insurance companies to cover liposuction after a big appeal a year or so ago. I don't know a lot about it, but if you use Facebook a lot of people share their experiences with surgery and insurance in the groups there. Hope you keep feeling better day by day 💕
