And not just oncologists-I have primary lymphedema and for a great deal of my life I have had to deal with fat shaming and very cruel remarks from people who should know better!! And don't get me started on shoe shopping!!
Every surgeon needs to see this, not only oncological. I am convinced mine developed following my c-section, and later two laparoscopic abdominal surgeries … with each successive surgery my lymphedema worsened. After the third one, significantly! I finally wondered silently if my lymph system had been damaged during these surgeries (not simply nodes removed as in oncological surgery.)
Your life will NEVER EVER be the same again! Believe it or not, I got Lymphodema from my mother's asswhole husband, who ran me over in the driveway twice with her car. There's so much more to this my horrible story, but the bottom line is both my legs have this. My left leg is lovingly called the 'problem child'. 😊 I've been in hospital more times, and I care to remember for leg infections. Thank you for bringing this nightmare into the light.
I cried 😢 I am a massage therapist who later in my career learned about this and I am ashamed that I didn't get involved sooner. I am now and have been a Manual Lymphatic Drainage therapist and I know that there is still more to learn about how to be better at my job helping people who need my help.
Don’t be ashamed at what you didn’t know then. Sounds like you are learning now and helping people. I think the medical field is just starting to find out more about this.
When people get Lymphedema life changes. A person can spend all day just by caring for his/her lymphedema. It’s very sad because medical doctors don’t know much about this.
A year and a half ago, I almost died....again. I had my third septic infection in four years. This was the least powerful one, but I was still hospitalized for two weeks with another 21 days in an aftercare facility. I had 150 lbs of fluid drained with the assistance of lasik IV. Then I had to go learn to walk again. I haven't done well in the last year and a half going up and down in my diet, mostly because of my crushing depression..."HOW THE HELL DID I GET HERE? I USED TO BE AN ATHELETE FOR CHRIST'S SAKE!!" That makes it hard to keep up with getting better. I have kept the weight and water off but have a LONG way to go. Thank you for this video, glad I am not the only one anymore.
Slažem se. Milijuni ljudi boluju od limfedema od čega je 90 posto nastalo u bolnicama. Treba pod hitno puno više specijalista limfologa kojih nema pogotovo u Europi.
I’ve had primary lymphedema since I was a teenager in the 70’s. Not one doctor could figure out why my foot was swelling. Over the years it has gotten progressively worse. I have elephant skin on my toes. I had a ward frozen off in 2014. When the skin started peeling off, I picked up an infection. Woke up feeling like crap, decided to take a nap as I could barely hold my head up. When I woke and went to put on my flip flops, I noticed a bunch of red splotches on my foot. I went to see an urgent care MD who had seen me for several things in the decade I lived near the clinic. I went to give a urine sample and noticed a big red splotch on my thigh. The infection spread so fast and was so bad I almost died. During the pandemic I did a deep dive into the condition and found out the stagnant lymph fluid puts me at high risk. When I had my hip replaced, the lymph leg swelled up three times the size of the right one. Every time I took a step, it felt like Freddy Kruger set his nails on fire, ripped my skin open from the inside with every step. I’m addition to the ripping fire pain, add a thousand jelly fish stinging me at the same time. I’ve been doing a lot of the things suggested like dry brushing, foot and ankle exercises, elevate when I sleep or sit, use a compression stocking, ginger oil self massage - it would be nice to see a lymphedema specialist. There is a great one in Los Angeles. My insurance is Medi-Cade - they don’t have any lymphedema specialists contracted. I have no clue how much a consult would be. Trying to do this basic care, is a full time job. The reason I am late almost all of the time is the inability to get my left foot in my shoe. By the time I get my shoes on, I’ve had three anxiety attacks and end up driving like a bat out of hell to get where I need to be on time. It’s been a frustrating 45 plus years for sure!!!
@@melaniesharp397 I'm so sorry. I'm just learning at 80 years old, why I have the legs, feet and arms that I do. I have both lipedema and Lymphedema, stage 4. I understand the pain issues, feeling cruddy all the time, and immunity problems. Who is the Lymphedema specialist in Los Angeles? Do you have a name for him or her?
Once a month I sit in on a zoom round table with others who have this, and the questions everyone has, you can see how much education is needed. It is through the lymph press, you can find them online
It really is in the early stages of research. But we are the living dinosaurs who survived. My mother is 94 and has been treated horribly most of her life. We have to support each other.
This was a great video. I have lipo-lymphedema. I wear compression every day from ankles to high waist. I also use a vibration plate multiple times a day to help move the lymphatic fluid. I have a multi-chamber compression suit. I've been through three surgeries to remove the fat lipomas to help free the lymphatic flow (two leg surgeries and both arms done at once). I thank God that I'm mobile and can get out of bed every day. I need to watch what I eat and will need to do these things the rest of my life. I talked to my GP several times about the pain I had in my legs, to no avail. She didn't listen to my concerns. I went to several doctors until someone listened. I found others like me online and talked to so many folks and read so many of their stories. That led me to my lipedema doctor and my lipo-lymphedema diagnosis. I wish more doctors were educated on the lymphatic system. Thank you for doing this video!
Thank you for this informative video. I had breast cancer in 2007 and the doctor told me he had to remove my lymph nodes. I didn’t think about lymphedema at all until I just had a shoulder replacement and 6 weeks later my arm and hand are swollen. My PT told me it was lymphedema and I started looking at UA-cam videos. We have no lymphedema specialist in our area but we are still looking. Again thank you!
Go to a occupational therapist for your lymphedema. Physical therapist are not for lymphedema ( shall I say from experience since I go to both physical therapy and occupational therapy). Their has to be an occupational therapist somewhere in your area. They are a big big help although this stinks having this the rest of our life 😢 Good luck
This was very helpful, especially to see other people with lymphedema, and especially to see that there are 4 stages! I had no idea, many thanks for your stories and showing us what you do to minimize the damage.
This is an excellent video. I have primary and recently got discharged after about 15 years from the care of the Lymphoedema team that have supported me. I am gutted but also now realising that I have come a long way. I can request my hosiery every 6 months via the GP but I don’t know if the measurements would be correct. I have been losing weight steadily for 12 years and I exercise. I am in the UK and can see how globally treatments and access vary. My treatment has been hosiery and bandaging. I have to look into private MLD and I am looking at creating something subliminal for myself to listen to. I want to send a huge hug to everyone. This video showed courageous women that did not let the condition define them. They have given me strength. I don’t let it define me just wish I was less self conscious of it. 😊❤
Excellent video! Thank you for CAIRing about our lymphedema community. I’ve suffered for over 20 years after having my 3rd c-section. I later learned that I have lymphedema tarda.
This has helped me look at my condition in a positive way, I have it and doctors could not diagnosed it early ,from zambia wish could get this treatment
I was never told any of this information, just exercise, change diet, and wear compression socks. Never any details or suggestions, I’m livid none of my doctors explained in depth what is going on. Since the lymphedema is getting progressively worse (now 10 years after surgery), I’m doing reach myself.
I need a Dr in Ohio that deals with this issue. My husband has this issue in his legs and feet. This has been a issue for 3 yrs now with no help. Thanks
That's the problem, no doctors in the US deal with, let alone understand lymphedema. You need to see a Physical Therapist who's a Certified Lymphedema Therapist.
if you go to this video’s website, you’ll find a page that shows where the “centers of excellence” are for lymphedema. you have two in ohio - cleveland clinic and ohio state university cancer ctr. good luck to you.
I have spent the last 34 years going to Drs of every kind and never an answer to what was wrong. I suffered tremendously every day . I had all the signs of lymphedema and not one single Dr picked up on it . I’m astonished ! I’ve never heard of lymphedema and it got to the point where I considered myself a medical mystery. Armed with my new found knowledge I have been doing massages, exercises, I drink goldenrod tea, diatomaceous earth (food grade) I add it to my coffee and I drink lots of herbal teas. I seen a tremendous improvement in two weeks. Also epson salt baths soak for at least 30 minutes
I have the same issue with primary lymphedema. I first started Seeing swelling in the metatarsal area of my foot in 1978ish. I saw a vascular MD and several others and it was just a mystery. I never even heard of the term lymphedema until the mid 2000’s - she heard me talking about my swollen foot and by then my lower leg. She was a cancer survivor. My podiatrist in 2020 was the first to recognize it. After than a fellow yogi. I did a lot of research on my own during the pandemic. No specialists in my Medicaid system. One great one in Los Angeles, but I probably can’t afford her 😢. I saw that you are using food grade DE. I would love to know more. Hopefully you will see my comment and pass On the 411!!! Thanks
I've asked 4 different docs, including an oncologist/ hematologist, for a specialist... They've never heard of such a professional. 😭 I'm now in tears for real! I feel these stories deep in my soul and live with this every single day! I live alone and can't bend to reach my feet, so wrapping myself hasn't been possible. I'm sharing this with my best friends, who are supportive, but don't get it. I've never had cancer, thank God, but I had weight loss surgery 20 years ago. I developed malnutrition in 2021/2022 due to gastrointestinal problems. All the docs blame protein malnutrition for the swelling. At this point, IDGAF what the cause! I need help to leave my bed/house!
The only medical professionals in the US who treat lymphedema are Physical Therapists who have undergone special training to become Certified Lymphedema Therapists. Ask your doctor for a referral to one now.
@@terised Limfedem bi trebali liječiti limfolozi.Znam da ih u Europi nema. Fizikalni terapeuti služe više za vježbe nakon.operacije dojke. U institutu za tumore su kao stručnjaci koji bez ručne drenaže zamotaju nogu i ustajalu limfu bandažiranjem tako da je do ispod prepona bila spužva i zavoji i da je iznad toga sada kvrga gdje je limfa zastala. Svi rade sa bolesnicima kao da su papiri, ako pogriješim.bacim u koš za smeće. Pomaže korijen od čička to jest čaj, pomaže ulje čajevac razrijeđeno sa kremom ili gelom za osjetljivu kožu.
27 years ago breast cancer . This has run my life , cellulitis is the worse can kill you. Just got done with wrapping therapy . Machine, sleeping wrap, compression sleeves .
I can relate to all of that because I also suffering lymphendemas on both of my legs. And, I don't know how it gotten that because I ain't never been big before.
I feel sad that you didn't spend more time on the advantage of Manual Lymphatic Drainage done by massage therapist. It is better for them than nothing at all! I wish more doctors would acknowledge that this is a REAL thing! In my area they don't! There was a Breast cancer doctor who did but she died and now her replacements don't, sad.
I have Primary Lymphedema and I stay in Nigeria, but have not gotten a good treatment about it, have not seen a good doctor for it . I have live with this case for 29 years. I need help on Treatment and management
My Lymphedema according to my Dr. was caused by an allergic reaction from the COVID 19 Vaccination. 3 days after receiving my first injection both of my feet started to feel like they were on fire. They both started to swell and the swelling continued to the knee. Now it is also in the back of both thighs and one butt cheek. I have been having trouble wearing the compression stockings because both legs keep breaking out with ulcers. These ulcers just drain down the back of my legs. The antibiotics that have been prescribed have not worked and quite frankly the meds that my Dr. has prescribed for me is not working. It's really hard for me to exercise as well because I have developed COPD. I would be open to any recommendations you may have.
I find it sad that you use the Covid vaccine as a scare tactic or a cause of your lymphedema, lymphedema is caused from injury or surgery. How can a little needle do that so I guess then your claim would be oh it’s the medicine itself, well there are millions, millions and millions and millions of people that have took the Covid shot that had had no lymphedema symptoms. Now here’s something that will really twist your brain into a pretzel, I’ve had lymphedema for 34 years and I’ve had several shots. I’m not any worse. I’m not any better but I’m not any worse.
I have had this for over 20 years. I was just diagnosed 2 months ago. What makes it really bad is I have conjestive heart failure, so when the fluid is in my stomach, my breathing is compromised and I cough all day. I have only been prescribed the compression stockings and prior to this diagnosis, they thought the swelling was from the CHF so the insurance company denied request after request for the compression stockings. I will not let them treat me anyway. I will not. Thank you.
Thx much for this! Interesting to me was our military vet re: vien/lymph surgery...I think that's a possibilty for me. Again, ty and glad that finally patients have gotten loud about this and some docs are interested. All best to you!
Neki " stručnjaci " ipak ne preporučuju operaciju. Nažalost 90 posto limfedema nastaje u bolnicama kada ozlijede limfne žile.Moj sin je zbog visokog tlaka završio u bolnici i dok su otkrivali što mu bi moglo biti pet puta su punktirali leđnu moždinu kojom prilikom im je pukla igla i dobro oštetili limfu. Problemi nastaju nakon par mjeseci oticanjem stopala. Nakon pregleda i pregleda u 4 godine došao je do limfedema trećeg stupnja sa obujmom noge ispod koljena od 100 cm.Gležanj visi do poda , s lijeva noga sustiže desnu. Nitko od silnih pretraga koje smo obavljali više od tri godine nije mogao ništa poduzeti. Kod podignute noge javljaju se jaki bolovi u kralježnici. Ne može ni spavati, više je spavao sjedeći nego ležeći. Udebljao se 70 kg i ne da ima slonovske noge nego još puno gore. Nikada ni jedan specijalista nije imao potrebu da ga se liječi hospital izacijom..Ni jedna bolnica nema limfologa. Fizikalni terapeuti se baš i ne trude i kao da nisu educirani odakle početi masažu pa počinju i završavaju na nozi do koljena i to smo teško izborili da rade. Imao je 35 g. kada su ga udesili za cijeli život. Sada doslovce vuče nogu za sobom.
I'm 24 years and I have swelling on my both feets and I feel pain.almost 11 year know and I don't know the case how it start. the swelling also increase day to day and I can't wear my favourite shoes and I loss my confidence because of this ..the doctors told me u don't have any disease and it will go by it self but still I'm struggle with that.almost 11 years ..some doctors told me u don't have enough protein in your body .I have no idea what I'm gona do
Sorry for this, personally I had to figure it out for my early teen daughter. It's been years of looking out for proper information. Doctors did a series of tests on her heart, kidney, uterus etc and finally they didn't prescribe anything. I did put her on compression stockings and her legs are now almost back to normal size. Please try compression stockings and leg elevation even as you continue searching for more information.
Im so tired of having lipedema not being able to find a dr to treet me in my state...im fed up with drs and surgeon s saying cash only so only the rich get help..im poor i live on disability my rent takes 90 percent of my income.. have some compassion please help us...i can't continue to fight this illness alone with no help from drs ect...😢😢😢😢
Hi everyone.I have lymph-edema for years after i had a small surgery when i was 16 years old.....i am in stage 2/3.Nurse who was giving me a lymphatic drainage in my country advice me it would be the best option for me to think about surgery,because i have an allergy on elastic socks and some other problems too.Anyone who have some good experience,recommendation for some doctor,clinic?Please?Thanks.....P.S.Great video🥰
Dear Doctor, In India, chennai From Pharm products company Having the medicine for actue and chronic inflammation edema and also for lympedema, Tablet LYMPEDIM 200mg 💼, also , this tablet recognized by most of the Doctors, And this will help ful to deserve patients... ,
Ima li povratnih informacija da je ta tableta nekome izliječila limfedem?Ako ima to bi bilo super, jer svi tvrde da je limfedem neizlječiv. Ne želi se nitko baviti limfedemom.a na milijune ljudi boluje od njega. Moj sin ima treći stupanj zahvaljujući upravo doktorima.
I have started my journey to get surgery for my lymphedema! It is progressing more in my right leg. It isn't easy to get into my car, bed, bathtub, and knee at work! I live in Windsor, Ontario Canada and there aren't many surgery options here! Garments are getting too difficult to put on! My hands hurt, back problems and so much swelling can't get my socks on! I am looking to get surgery! Where is the big question!
I have Lymphedema, I’m a Type 2 Diabetic, I was prescribed compression socks. But sometimes, my Leg’s leak fluid and I bandage the areas to slow the leakage. Is there anything else I can be doing to help this ongoing problem?
Moj sin ima 3 stupanj limfedema i kaže da mu je bilo lakše kada mu je prije god.i pol znala puknuti koža i iscurila tekućina. Problem je što se koža ne smije pritiskati niti kod masaže jer se tada limfa razlijeva.Glavno je ne dopustiti da se inficira, dobivao je i neke spec.flastere za to. Sami smo kupili antibiotički sprej Vioplex-T, Cutaneous SprayPowder koji brzo zacjeljuje ranice.
Not enough is known about Lymphedema. Not enough Drs and therapists in this field who know about it and can treat it. No cure. It’s a full time job for a person with Lymphedema to live and function.
I’ve had lymphedema for 20 years now. I’m not strong enough to put on my garment - an Elvarex full open toe stocking with toe-caps. I’ve been “living” in bed with pillows under the foot of my king size mattress. Lately my feet have been so numb I’m afraid I’m gonna lose my feet. They’re not so swollen anymore but I can hardly walk because from staying in bed all the time I’m very weak. It’s not just my feet are numb it goes all the way up to my ankles And sometimes I feel tingling in my whole leg. I really don’t know what to do. I’m overweight. The year that I took to my bed I gained 100 pounds. I’m a big woman to begin with. At 170 pounds in a size 12. I Now a 270 pounds. I have to be put into a wheelchair when I go to the doctor because I can’t walk from the car to the doctors office anymore. I can’t cook anymore, grocery shop, clean my house, do laundry, garden, Or swim in swimming is my sport. I started seeing an infectious disease doctor because I was going into the hospital almost every month with severe cellulitis. It became so serious I was hospitalized with an infection that I needed IV antibiotics for for three months. I carry anabiotic‘s around with me everywhere and as soon as I get a temperature that’s even the least bit off of my regular temperature I check my legs and usually I have some redness in them. So I’m cellulitis shy so I do everything I can to keep my legs from swelling short of wearing my stockings because it’s too hard for me to get them on. I’m ashamed of myself. I’ve let myself get into a situation where I can’t even function. I miss being a housewife and baking cookies and taking them to church for the Cindy school kids. I haven’t been to church now in over seven years. All I do is stay at home. I can’t get in the shower because we don’t have a accessible shower for me. So I use a warm washrag to bathe. My hair only gets washed about once every two months and for that I go to the hairdresser. To get there as hell I need the wheelchair. I’ve fallen several times now with my legs just buckling underneath me. So I do have a walker for in the house. There’s so many things I want to do. In November I’ll be 66. I’m wondering how many years I have left, and how I want to spend them. I don’t want to spend them in bed. I need help. Can anyone tell me what I need to do? I I don’t walk very well anyway because I have a fused ankle in a foot that’s very arthritic. I can use a cane. I’ll never be able to hike along mountain trail. But I’d like to be able to go to the beach again and walk on the sand and swim with the fish in body surf at my favorite beaches in Hawaii, kayak in Kealakekua bay with the dolphins. Right now, my feet are on fire and feel like I’m wearing a pair of ankle-high heavy, stiff hiking boots that are way too small. My heal is on fire, the balls of my feet are being electrocuted with that “buzzing” wrapping around the edges of my feet into my big toe & little toe. There’s a knife periodically stabbing between my toes - wherever there’s an in between. Then, the buzzing Carie’s around the top of my foot and up past the top of both my ankles. What should I do?
Sue, I read the description of your living with Lymphedema that you made 6 months ago. I understand all that you described. Am there also. After viewing the video ‘Not So Swell, Living with Lymphedema - a film from Mary Katzke’, it made me more discusted than I already am. In this year 2023, you’d think that more could be done to treat Lymphedema. There aren’t enough Doctors and definitely not enough certified Therapists to help people. For people who have this, it takes a full time caring for one’s self
What a rip off. The cost of those garments are more expensive than a wheelchair, custom shoe inserts or electrical lymph massage pump sleeves. I’d like to know who is making a profit from this gouging. Insurance usually does NOT cover compression garments. Especially if one is on Medicare.
Medicare paid for everything for me. I have a machine and velcro wraps and they paid for stockings. It was easier to get the more expensive things than the stockings! My specialist is a physical therapist who is certified in Lymphedema. This is scary for me. I am only a year into this and having my second episode which is worse than the first and the comments from people who have had it longer than me are scaring me... I haven't even watched the video yet. I watched a lot of LERN video's last year and now there is SO much more, much that I'm afraid I don't want to know... I will post again if I can find this spot, later when I learn more
Ja kupujem tri iste trenirke da bi mi krojačica mogla prepraviti u dvije trenirke, cijena prepravka je kao cijena još jedne trenirke. Tako da za cijenu 4 trenirke dobijem dvije.
What do you do when you don't have a thyroid I don't have breast cancer I don't have a thyroid I've tried cutting out every food known to man and I still feel like crap
I arrive on your channel by chance (or God??) because 7 years ago, I had a TTP? Profound vein blocked in my calf. Heparin, Coumadin X 6 months. But if I don't take a pill that my GP talk about an herb for this, it's painful. But, 3-4 months ago, I realize that my ankle in the beginning and now it's all the foot on the same leg was with oedema, sometimes with print of my finger (in French: œdème à godet) . My GP said that it's veinons insufficient. He told me to put compression socks but no prescription about the amount of pression!!! But, looking your channel, I ask myself is that beginning of lymphedema? What kind of specialty of doctor must I see ??
U mojoj zemlji stupanj kompresije određuje vaskularni kirurg, jer nemamo ni jednog limfologa specijalistu za limfedem. Za neka pomagala cipele je dovoljan fizijatar.
The thing is even minor surgery can cause lymphedema, the medical field doesn’t disclose this due to the chance of people changing their mind on unnecessary surgery
Wondering why it seems to be about females. I've ended up homebound. Drs no nothing and try to give me diet pills. I'm a mess, got to a point I just had 1 meal a day w out results. Mine finally was shown to have been caused by an occluded IVC filter. Kedneys shut down, in the hospital for 3 months and did nothing but swell. Anyone in Southern Ca around Ventura Co that can help me?
RPS Entertainment, so sry to hear about your health. I am ill wih this type of thing too. I've been down 5 and 1/2 yrs now, ignored and railroaded this year by docs and got worse. As a patient all my life, and an old CCRN (67) I want my life back and will look for answers til I exhaust what's out there. I live in NorCal last 7 yrs and fly to Chicago every 2 months to see G.P. who doles out comfort, but no more. 3 days ago I found a doctor and research at Stanford in Palo Alto. I was impressed at what I found altho it may or may not be too late for me...but I'm gonna try to get an appt. If your're interested, get back to me here and I'll give you the name. Peace and love
@@roxannetoth5026 Hi, sorry I just noticed your reply. I thought id try to connect and see how that Dr worked out for you? Sure hope your doing ok, Gary
@@Rust-Trap-Ranch Hi Gary, Roxanne here. How sweet of you to ask about this; Few care anymore. So, yes, was a good visit with a strait up, very classy doctor at Cedar's in LA. I Finally got a clear answer regarding this rather large problem. Nothing more can be done. This is a complucation from years of surgery. It's not lymphedema, thk god. My GP put an extra med on board which helps quite a bit. You are an angel to ask! Hope you're doing great and have Happy Holidays. Peace and love
I'm the scary stage 3 on line photo in my legs. I've had the cellulitis w. sepsis many times, chf due to the swelling, my Vericosed veins and vein valves not closing which are hereditary. I've had the pumped for legs feels like my legs got ran over n hurt with the squeezing. I also have lipoedema in my legs as well. I'm on 40mg lasix 2x a day with metolazone the booster for lasix. You tell me how can I wear full leg pantyhose style compression when I'm in the bathroom almost every hour and I swear it has an effect on the bladder. I'm done n tired of the therapies I'm legs haven't improved so I'm now looking into the liposuction options and vein valve replacements. I've had to quit my work because of this, I can't do over 2/3 of what I used to love to do, its destroying certain aspects of my life, mobility and relations. If I don't take the lasix for a week I risk chf. The only way I get reduction is selling is if I literally stay off my legs bed ridden for atleast 4 days then I see some deflation as soon as I go back to living life the next day they swell up again after walking what I can do which is very little regardless how my legs are. So I can't walk for exercise anymore. I'm over this crap! Good luck to all you who have stage 1 and 2 and can manage it where you're not as compromised as me. I still drink my coffee water tea eat my wide variety of foods etc. While wishing I could manage to get back in the sand n sun again enjoy the beach, and boards visualize it just by sitting at my window. Wishing I never had to deal with this. My life would've been so different if I never inherited this. I can't accept it, or give it to God, or live my best life bc I'm always worried about where's the bathroom at when we go out, how long is the next rest stop. Not eating or drinking while on road unless I'm absolutely thirsty. It's not a positive thing. The stigma in public about bearing your legs you get looked at, talked about, frowned at, moved away from like you're contagious. I'm willing to pay out off pocket for the lymphedema reduction surgery with manual squeezing. I can't have anyone touch my legs or pass on them they bruise n are extremely sensitive to touch, hot n cold weather. The veins give a numbing feeling by being in then for just only 30 minutes, and when laying down in certain areas. My feet swell too. I can only wear Crocs. Good luck guys and keep looking for solutions. I found rorher university in hamburg, Germany is doing trials for the inner lumens of vericose veins by placing inner lining sheaths to help straighten out the vein structure and how.
My goal was to go to lpn class in FL. N ultimately become a legal nurse consultant. Until this happened we were working towards that move. It's down the drain.
Took to long for me to get a diagnosis. The other than katy bates make the subject so boring. Say we are trying to understand this this disease. Get some these doctors here from other countries to the u.s. to get some help. And insurance coverage!!!!!! What's the matter with people that can help.
This film needs to be shown to every oncological surgeon, OGYN, and General practitioner.
And not just oncologists-I have primary lymphedema and for a great deal of my life I have had to deal with fat shaming and very cruel remarks from people who should know better!! And don't get me started on shoe shopping!!
Every surgeon needs to see this, not only oncological. I am convinced mine developed following my c-section, and later two laparoscopic abdominal surgeries … with each successive surgery my lymphedema worsened. After the third one, significantly! I finally wondered silently if my lymph system had been damaged during these surgeries (not simply nodes removed as in oncological surgery.)
@@ysvjlv similar experience⚘
Everything is control by diet
And Cardiologist
Your life will NEVER EVER be the same again! Believe it or not, I got Lymphodema from my mother's asswhole husband, who ran me over in the driveway twice with her car.
There's so much more to this my horrible story, but the bottom line is
both my legs have this. My left leg is lovingly called the 'problem child'. 😊 I've been in hospital more times, and I care to remember for leg infections.
Thank you for bringing this nightmare into the light.
I cried 😢 I am a massage therapist who later in my career learned about this and I am ashamed that I didn't get involved sooner. I am now and have been a Manual Lymphatic Drainage therapist and I know that there is still more to learn about how to be better at my job helping people who need my help.
Bless you! 🥰
Don’t be ashamed at what you didn’t know then. Sounds like you are learning now and helping people. I think the medical field is just starting to find out more about this.
You must be a very kind, wonderful person! Good for you!
@@shellyrock9562 Thank you!
@@jude1515 Thank you!
When people get Lymphedema life changes. A person can spend all day just by caring for his/her lymphedema. It’s very sad because medical doctors don’t know much about this.
A year and a half ago, I almost died....again. I had my third septic infection in four years. This was the least powerful one, but I was still hospitalized for two weeks with another 21 days in an aftercare facility. I had 150 lbs of fluid drained with the assistance of lasik IV. Then I had to go learn to walk again. I haven't done well in the last year and a half going up and down in my diet, mostly because of my crushing depression..."HOW THE HELL DID I GET HERE? I USED TO BE AN ATHELETE FOR CHRIST'S SAKE!!" That makes it hard to keep up with getting better. I have kept the weight and water off but have a LONG way to go. Thank you for this video, glad I am not the only one anymore.
Surgeon's who do radiation and chemo on patients should be required to complete a course on Lymph nodes removal and Lymphedema.
Slažem se. Milijuni ljudi boluju od limfedema od čega je 90 posto nastalo u bolnicama. Treba pod hitno puno više specijalista limfologa kojih nema pogotovo u Europi.
I loved this video. People like me have primary lymphedema. Please consider doing a video for persons like me.
Oh I support this. I always have wondered why primary is rarely covered 😕
Yess! I have primary too and have a hard time relating to anyone 😢
I’ve had primary lymphedema since I was a teenager in the 70’s. Not one doctor could figure out why my foot was swelling. Over the years it has gotten progressively worse. I have elephant skin on my toes. I had a ward frozen off in 2014. When the skin started peeling off, I picked up an infection. Woke up feeling like crap, decided to take a nap as I could barely hold my head up. When I woke and went to put on my flip flops, I noticed a bunch of red splotches on my foot. I went to see an urgent care MD who had seen me for several things in the decade I lived near the clinic. I went to give a urine sample and noticed a big red splotch on my thigh. The infection spread so fast and was so bad I almost died. During the pandemic I did a deep dive into the condition and found out the stagnant lymph fluid puts me at high risk. When I had my hip replaced, the lymph leg swelled up three times the size of the right one. Every time I took a step, it felt like Freddy Kruger set his nails on fire, ripped my skin open from the inside with every step. I’m addition to the ripping fire pain, add a thousand jelly fish stinging me at the same time. I’ve been doing a lot of the things suggested like dry brushing, foot and ankle exercises, elevate when I sleep or sit, use a compression stocking, ginger oil self massage - it would be nice to see a lymphedema specialist. There is a great one in Los
Angeles. My insurance is Medi-Cade - they don’t have any lymphedema specialists contracted. I have no clue how much a consult would be. Trying to do this basic care, is a full time job. The reason I am late almost all of the time is the inability to get my left foot in my shoe. By the time I get my shoes on, I’ve had three anxiety attacks and end up driving like a bat out of hell to get where I need to be on time.
It’s been a frustrating 45 plus years for sure!!!
@@melaniesharp397 I'm so sorry. I'm just learning at 80 years old, why I have the legs, feet and arms that I do. I have both lipedema and Lymphedema, stage 4. I understand the pain issues, feeling cruddy all the time, and immunity problems. Who is the Lymphedema specialist in Los Angeles? Do you have a name for him or her?
Thank you for this. I didn't realize how much I needed to see others also living with this until I saw this video.
Once a month I sit in on a zoom round table with others who have this, and the questions everyone has, you can see how much education is needed. It is through the lymph press, you can find them online
I’ve had lymphoedema since I was 12, not recognised when I was growing up, I was so ashamed, I went on lots of diets, had batraic surgery, I’m now 81
It really is in the early stages of research. But we are the living dinosaurs who survived. My mother is 94 and has been treated horribly most of her life. We have to support each other.
I am touched and inspired by this film. Thanks for sharing.
This was a great video. I have lipo-lymphedema. I wear compression every day from ankles to high waist. I also use a vibration plate multiple times a day to help move the lymphatic fluid. I have a multi-chamber compression suit. I've been through three surgeries to remove the fat lipomas to help free the lymphatic flow (two leg surgeries and both arms done at once). I thank God that I'm mobile and can get out of bed every day. I need to watch what I eat and will need to do these things the rest of my life. I talked to my GP several times about the pain I had in my legs, to no avail. She didn't listen to my concerns. I went to several doctors until someone listened. I found others like me online and talked to so many folks and read so many of their stories. That led me to my lipedema doctor and my lipo-lymphedema diagnosis. I wish more doctors were educated on the lymphatic system. Thank you for doing this video!
Education is key.
Thank you for this informative video. I had breast cancer in 2007 and the doctor told me he had to remove my lymph nodes. I didn’t think about lymphedema at all until I just had a shoulder replacement and 6 weeks later my arm and hand are swollen. My PT told me it was lymphedema and I started looking at UA-cam videos. We have no lymphedema specialist in our area but we are still looking. Again thank you!
Go to a occupational therapist for your lymphedema. Physical therapist are not for lymphedema ( shall I say from experience since I go to both physical therapy and occupational therapy). Their has to be an occupational therapist somewhere in your area. They are a big big help although this stinks having this the rest of our life 😢 Good luck
This was very helpful, especially to see other people with lymphedema, and especially to see that there are 4 stages! I had no idea, many thanks for your stories and showing us what you do to minimize the damage.
Thank you for this information. I have lymphedema..
This is an excellent video. I have primary and recently got discharged after about 15 years from the care of the Lymphoedema team that have supported me.
I am gutted but also now realising that I have come a long way. I can request my hosiery every 6 months via the GP but I don’t know if the measurements would be correct. I have been losing weight steadily for 12 years and I exercise. I am in the UK and can see how globally treatments and access vary. My treatment has been hosiery and bandaging.
I have to look into private MLD and I am looking at creating something subliminal for myself to listen to.
I want to send a huge hug to everyone.
This video showed courageous women that did not let the condition define them. They have given me strength. I don’t let it define me just wish I was less self conscious of it. 😊❤
Excellent video! Thank you for CAIRing about our lymphedema community. I’ve suffered for over 20 years after having my 3rd c-section. I later learned that I have lymphedema tarda.
What is tarada? I have it in both legs. Is there names for different kinds of lymphedema? Not much medical knowledge in my area thanks
This has helped me look at my condition in a positive way, I have it and doctors could not diagnosed it early ,from zambia wish could get this treatment
I was never told any of this information, just exercise, change diet, and wear compression socks. Never any details or suggestions, I’m livid none of my doctors explained in depth what is going on. Since the lymphedema is getting progressively worse (now 10 years after surgery), I’m doing reach myself.
Because they don't know. It's way past time for this to become a more understood condition.
True! Trying to get treatment for this! It's as expensive as having plastic surgery, they treated like a beauty treatment and not a health condition.
I never had cancer but I developed Lymphdema two years ago in my legs & feet don’t understand how it happened will it ever get better?
Keep searching fir more videos.
I need a Dr in Ohio that deals with this issue.
My husband has this issue in his legs and feet.
This has been a issue for 3 yrs now with no help. Thanks
That's the problem, no doctors in the US deal with, let alone understand lymphedema. You need to see a Physical Therapist who's a Certified Lymphedema Therapist.
Start with a endocrinologist. Call Cleveland Clinic
if you go to this video’s website, you’ll find a page that shows where the “centers of excellence” are for lymphedema. you have two in ohio - cleveland clinic and ohio state university cancer ctr. good luck to you.
Excellent video. The people on here are strong and amazing!
I have spent the last 34 years going to Drs of every kind and never an answer to what was wrong. I suffered tremendously every day . I had all the signs of lymphedema and not one single Dr picked up on it . I’m astonished ! I’ve never heard of lymphedema and it got to the point where I considered myself a medical mystery. Armed with my new found knowledge I have been doing massages, exercises, I drink goldenrod tea, diatomaceous earth (food grade) I add it to my coffee and I drink lots of herbal teas. I seen a tremendous improvement in two weeks. Also epson salt baths soak for at least 30 minutes
I have the same issue with primary lymphedema. I first started
Seeing swelling in the metatarsal area of my foot in 1978ish. I saw a vascular MD and several others and it was just a mystery. I never even heard of the term lymphedema until the mid 2000’s - she heard me talking about my swollen foot and by then my lower leg. She was a cancer survivor. My podiatrist in 2020 was the first to recognize it. After than a fellow yogi. I did a lot of research on my own during the pandemic. No specialists in my Medicaid system. One great one in Los Angeles, but I probably can’t afford her 😢.
I saw that you are using food grade DE. I would love to know more. Hopefully you will see my comment and pass
On the 411!!!
Thanks
I've asked 4 different docs, including an oncologist/ hematologist, for a specialist... They've never heard of such a professional. 😭 I'm now in tears for real! I feel these stories deep in my soul and live with this every single day! I live alone and can't bend to reach my feet, so wrapping myself hasn't been possible. I'm sharing this with my best friends, who are supportive, but don't get it. I've never had cancer, thank God, but I had weight loss surgery 20 years ago. I developed malnutrition in 2021/2022 due to gastrointestinal problems. All the docs blame protein malnutrition for the swelling. At this point, IDGAF what the cause! I need help to leave my bed/house!
The only medical professionals in the US who treat lymphedema are Physical Therapists who have undergone special training to become Certified Lymphedema Therapists. Ask your doctor for a referral to one now.
@@terised Limfedem bi trebali liječiti limfolozi.Znam da ih u Europi nema. Fizikalni terapeuti služe više za vježbe nakon.operacije dojke. U institutu za tumore su kao stručnjaci koji bez ručne drenaže zamotaju nogu i ustajalu limfu bandažiranjem tako da je do ispod prepona bila spužva i zavoji i da je iznad toga sada kvrga gdje je limfa zastala. Svi rade sa bolesnicima kao da su papiri, ako pogriješim.bacim u koš za smeće. Pomaže korijen od čička to jest čaj, pomaže ulje čajevac razrijeđeno sa kremom ili gelom za osjetljivu kožu.
27 years ago breast cancer . This has run my life , cellulitis is the worse
can kill you. Just got done with wrapping therapy . Machine, sleeping wrap, compression sleeves .
So important information Thanks
I fell very tired and very heavy I don't know what to do.
I can relate to all of that because I also suffering lymphendemas on both of my legs. And, I don't know how it gotten that because I ain't never been big before.
I feel sad that you didn't spend more time on the advantage of Manual Lymphatic Drainage done by massage therapist. It is better for them than nothing at all! I wish more doctors would acknowledge that this is a REAL thing! In my area they don't! There was a Breast cancer doctor who did but she died and now her replacements don't, sad.
I have Primary Lymphedema and I stay in Nigeria, but have not gotten a good treatment about it, have not seen a good doctor for it . I have live with this case for 29 years. I need help on Treatment and management
Tyvm for video. My legs are having a hard time draining and the pressure is pushing on my shin bones. Hoping to afford a ipc unit
My Lymphedema according to my Dr. was caused by an allergic reaction from the COVID 19 Vaccination. 3 days after receiving my first injection both of my feet started to feel like they were on fire. They both started to swell and the swelling continued to the knee. Now it is also in the back of both thighs and one butt cheek. I have been having trouble wearing the compression stockings because both legs keep breaking out with ulcers. These ulcers just drain down the back of my legs. The antibiotics that have been prescribed have not worked and quite frankly the meds that my Dr. has prescribed for me is not working. It's really hard for me to exercise as well because I have developed COPD. I would be open to any recommendations you may have.
I find it sad that you use the Covid vaccine as a scare tactic or a cause of your lymphedema, lymphedema is caused from injury or surgery. How can a little needle do that so I guess then your claim would be oh it’s the medicine itself, well there are millions, millions and millions and millions of people that have took the Covid shot that had had no lymphedema symptoms. Now here’s something that will really twist your brain into a pretzel, I’ve had lymphedema for 34 years and I’ve had several shots. I’m not any worse. I’m not any better but I’m not any worse.
That's exactly why I got it! I'm not doing anything because I don't have any one who believes me 😢.
Have you looked into vibrational plate therapy? You can get your lymph moving without jumping and getting out of breath.
@@simmiedavissimmiesings8185 I will discuss it with my doctor this month, thank you.
I have had this for over 20 years. I was just diagnosed 2 months ago. What makes it really bad is I have conjestive heart failure, so when the fluid is in my stomach, my breathing is compromised and I cough all day. I have only been prescribed the compression stockings and prior to this diagnosis, they thought the swelling was from the CHF so the insurance company denied request after request for the compression stockings. I will not let them treat me anyway. I will not. Thank you.
Your insurance wouldn’t cover compression stockings for CHF? That’s shameful. I’m so sorry.
Thx much for this! Interesting to me was our military vet re: vien/lymph surgery...I think that's a possibilty for me. Again, ty and glad that finally patients have gotten loud about this and some docs are interested. All best to you!
Neki " stručnjaci " ipak ne preporučuju operaciju. Nažalost 90 posto limfedema nastaje u bolnicama kada ozlijede limfne žile.Moj sin je zbog visokog tlaka završio u bolnici i dok su otkrivali što mu bi moglo biti pet puta su punktirali leđnu moždinu kojom prilikom im je pukla igla i dobro oštetili limfu. Problemi nastaju nakon par mjeseci oticanjem stopala. Nakon pregleda i pregleda u 4 godine došao je do limfedema trećeg stupnja sa obujmom noge ispod koljena od 100 cm.Gležanj visi do poda , s lijeva noga sustiže desnu. Nitko od silnih pretraga koje smo obavljali više od tri godine nije mogao ništa poduzeti. Kod podignute noge javljaju se jaki bolovi u kralježnici. Ne može ni spavati, više je spavao sjedeći nego ležeći. Udebljao se 70 kg i ne da ima slonovske noge nego još puno gore. Nikada ni jedan specijalista nije imao potrebu da ga se liječi hospital izacijom..Ni jedna bolnica nema limfologa. Fizikalni terapeuti se baš i ne trude i kao da nisu educirani odakle početi masažu pa počinju i završavaju na nozi do koljena i to smo teško izborili da rade. Imao je 35 g. kada su ga udesili za cijeli život. Sada doslovce vuče nogu za sobom.
I'm 24 years and I have swelling on my both feets and I feel pain.almost 11 year know and I don't know the case how it start. the swelling also increase day to day and I can't wear my favourite shoes and I loss my confidence because of this ..the doctors told me u don't have any disease and it will go by it self but still I'm struggle with that.almost 11 years ..some doctors told me u don't have enough protein in your body .I have no idea what I'm gona do
Sorry for this, personally I had to figure it out for my early teen daughter. It's been years of looking out for proper information. Doctors did a series of tests on her heart, kidney, uterus etc and finally they didn't prescribe anything. I did put her on compression stockings and her legs are now almost back to normal size. Please try compression stockings and leg elevation even as you continue searching for more information.
Thanks
Im so tired of having lipedema not being able to find a dr to treet me in my state...im fed up with drs and surgeon s saying cash only so only the rich get help..im poor i live on disability my rent takes 90 percent of my income.. have some compassion please help us...i can't continue to fight this illness alone with no help from drs ect...😢😢😢😢
Hi everyone.I have lymph-edema for years after i had a small surgery when i was 16 years old.....i am in stage 2/3.Nurse who was giving me a lymphatic drainage in my country advice me it would be the best option for me to think about surgery,because i have an allergy on elastic socks and some other problems too.Anyone who have some good experience,recommendation for some doctor,clinic?Please?Thanks.....P.S.Great video🥰
ķ
Does a lymphatic doctor diagnose Lipedema too?
Dear Doctor, In India, chennai From Pharm products company Having the medicine for actue and chronic inflammation edema and also for lympedema, Tablet LYMPEDIM 200mg 💼, also , this tablet recognized by most of the Doctors,
And this will help ful to deserve patients... ,
Ima li povratnih informacija da je ta tableta nekome izliječila limfedem?Ako ima to bi bilo super, jer svi tvrde da je limfedem neizlječiv. Ne želi se nitko baviti limfedemom.a na milijune ljudi boluje od njega. Moj sin ima treći stupanj zahvaljujući upravo doktorima.
@@samarijana can you send in English
I have started my journey to get surgery for my lymphedema! It is progressing more in my right leg. It isn't easy to get into my car, bed, bathtub, and knee at work! I live in Windsor, Ontario Canada and there aren't many surgery options here! Garments are getting too difficult to put on! My hands hurt, back problems and so much swelling can't get my socks on! I am looking to get surgery! Where is the big question!
What kind of surgery will you be having ?
Čitala sam da operacije i nisu neko rješenje, jer da se može javiti na nekom drugom mjestu.
I have Lymphedema, I’m a Type 2 Diabetic, I was prescribed compression socks. But sometimes, my Leg’s leak fluid and I bandage the areas to slow the leakage. Is there anything else I can be doing to help this ongoing problem?
Moj sin ima 3 stupanj limfedema i kaže da mu je bilo lakše kada mu je prije god.i pol znala puknuti koža i iscurila tekućina. Problem je što se koža ne smije pritiskati niti kod masaže jer se tada limfa razlijeva.Glavno je ne dopustiti da se inficira, dobivao je i neke spec.flastere za to. Sami smo kupili antibiotički sprej Vioplex-T, Cutaneous SprayPowder koji brzo zacjeljuje ranice.
Not enough is known about Lymphedema. Not enough Drs and therapists in this field who know about it and can treat it. No cure. It’s a full time job for a person with Lymphedema to live and function.
I’ve had lymphedema for 20 years now. I’m not strong enough to put on my garment - an Elvarex full open toe stocking with toe-caps. I’ve been “living” in bed with pillows under the foot of my king size mattress. Lately my feet have been so numb I’m afraid I’m gonna lose my feet. They’re not so swollen anymore but I can hardly walk because from staying in bed all the time I’m very weak. It’s not just my feet are numb it goes all the way up to my ankles And sometimes I feel tingling in my whole leg. I really don’t know what to do. I’m overweight. The year that I took to my bed I gained 100 pounds. I’m a big woman to begin with. At 170 pounds in a size 12. I Now a 270 pounds. I have to be put into a wheelchair when I go to the doctor because I can’t walk from the car to the doctors office anymore. I can’t cook anymore, grocery shop, clean my house, do laundry, garden, Or swim in swimming is my sport. I started seeing an infectious disease doctor because I was going into the hospital almost every month with severe cellulitis. It became so serious I was hospitalized with an infection that I needed IV antibiotics for for three months. I carry anabiotic‘s around with me everywhere and as soon as I get a temperature that’s even the least bit off of my regular temperature I check my legs and usually I have some redness in them. So I’m cellulitis shy so I do everything I can to keep my legs from swelling short of wearing my stockings because it’s too hard for me to get them on. I’m ashamed of myself. I’ve let myself get into a situation where I can’t even function. I miss being a housewife and baking cookies and taking them to church for the Cindy school kids. I haven’t been to church now in over seven years. All I do is stay at home. I can’t get in the shower because we don’t have a accessible shower for me. So I use a warm washrag to bathe. My hair only gets washed about once every two months and for that I go to the hairdresser. To get there as hell I need the wheelchair. I’ve fallen several times now with my legs just buckling underneath me. So I do have a walker for in the house. There’s so many things I want to do. In November I’ll be 66. I’m wondering how many years I have left, and how I want to spend them. I don’t want to spend them in bed. I need help. Can anyone tell me what I need to do? I I don’t walk very well anyway because I have a fused ankle in a foot that’s very arthritic. I can use a cane. I’ll never be able to hike along mountain trail. But I’d like to be able to go to the beach again and walk on the sand and swim with the fish in body surf at my favorite beaches in Hawaii, kayak in Kealakekua bay with the dolphins. Right now, my feet are on fire and feel like I’m wearing a pair of ankle-high heavy, stiff hiking boots that are way too small. My heal is on fire, the balls of my feet are being electrocuted with that “buzzing” wrapping around the edges of my feet into my big toe & little toe. There’s a knife periodically stabbing between my toes - wherever there’s an in between. Then, the buzzing Carie’s around the top of my foot and up past the top of both my ankles. What should I do?
Sue, I read the description of your living with Lymphedema that you made 6 months ago. I understand all that you described. Am there also. After viewing the video ‘Not So Swell, Living with Lymphedema - a film from Mary Katzke’, it made me more discusted than I already am. In this year 2023, you’d think that more could be done to treat Lymphedema. There aren’t enough Doctors and definitely not enough certified Therapists to help people. For people who have this, it takes a full time caring for one’s self
I have lipedema in my arm I would like to know if one lost weight after treatment am losing lot of wIgh an vert concern
What a rip off. The cost of those garments are more expensive than a wheelchair, custom shoe inserts or electrical lymph massage pump sleeves. I’d like to know who is making a profit from this gouging. Insurance usually does NOT cover compression garments. Especially if one is on Medicare.
Medicare paid for everything for me. I have a machine and velcro wraps and they paid for stockings. It was easier to get the more expensive things than the stockings! My specialist is a physical therapist who is certified in Lymphedema. This is scary for me. I am only a year into this and having my second episode which is worse than the first and the comments from people who have had it longer than me are scaring me... I haven't even watched the video yet. I watched a lot of LERN video's last year and now there is SO much more, much that I'm afraid I don't want to know... I will post again if I can find this spot, later when I learn more
I have lymphedema and nobody is helping me I have a big rush in my stomach my cloths don't fit me no more I am very worried 😢😢
Ja kupujem tri iste trenirke da bi mi krojačica mogla prepraviti u dvije trenirke, cijena prepravka je kao cijena još jedne trenirke. Tako da za cijenu 4 trenirke dobijem dvije.
What do you do when you don't have a thyroid I don't have breast cancer I don't have a thyroid I've tried cutting out every food known to man and I still feel like crap
Thank for into
Just realized how awful having eczema or psoriasis must be for these people.
I arrive on your channel by chance (or God??) because 7 years ago, I had a TTP? Profound vein blocked in my calf. Heparin, Coumadin X 6 months. But if I don't take a pill that my GP talk about an herb for this, it's painful.
But, 3-4 months ago, I realize that my ankle in the beginning and now it's all the foot on the same leg was with oedema, sometimes with print of my finger (in French: œdème à godet) . My GP said that it's veinons insufficient. He told me to put compression socks but no prescription about the amount of pression!!! But, looking your channel, I ask myself is that beginning of lymphedema? What kind of specialty of doctor must I see ??
U mojoj zemlji stupanj kompresije određuje vaskularni kirurg, jer nemamo ni jednog limfologa specijalistu za limfedem. Za neka pomagala cipele je dovoljan fizijatar.
I had my thyroid radiated. I now have full body lymphedema
Oh, no!😮😢 Thankyou for sharing on here, so we can be on guard... May God bless you and console you on your journey.
The thing is even minor surgery can cause lymphedema, the medical field doesn’t disclose this due to the chance of people changing their mind on unnecessary surgery
Slažem se
Wondering why it seems to be about females. I've ended up homebound.
Drs no nothing and try to give me diet pills.
I'm a mess, got to a point I just had 1 meal a day w out results.
Mine finally was shown to have been caused by an occluded IVC filter. Kedneys shut down, in the hospital for 3 months and did nothing but swell.
Anyone in Southern Ca around Ventura Co that can help me?
RPS Entertainment, so sry to hear about your health. I am ill wih this type of thing too. I've been down 5 and 1/2 yrs now, ignored and railroaded this year by docs and got worse. As a patient all my life, and an old CCRN (67) I want my life back and will look for answers til I exhaust what's out there. I live in NorCal last 7 yrs and fly to Chicago every 2 months to see G.P. who doles out comfort, but no more.
3 days ago I found a doctor and research at Stanford in Palo Alto.
I was impressed at what I found altho it may or may not be too late for me...but I'm gonna try to get an appt. If your're interested, get back to me here and I'll give you the name.
Peace and love
@@roxannetoth5026 Hi, sorry I just noticed your reply. I thought id try to connect and see how that Dr worked out for you? Sure hope your doing ok, Gary
@@Rust-Trap-Ranch Hi Gary, Roxanne here. How sweet of you to ask about this; Few care anymore. So, yes, was a good visit with a strait up, very classy doctor at Cedar's in LA. I Finally got a clear answer regarding this rather large problem. Nothing more can be done.
This is a complucation from years of surgery. It's not lymphedema, thk god. My GP put an extra med on board which helps quite a bit. You are an angel to ask! Hope you're doing great and have Happy Holidays. Peace and love
I can't take antibiotics I'm allergic to them I only weigh 82 lb
I'm the scary stage 3 on line photo in my legs. I've had the cellulitis w. sepsis many times, chf due to the swelling, my Vericosed veins and vein valves not closing which are hereditary. I've had the pumped for legs feels like my legs got ran over n hurt with the squeezing. I also have lipoedema in my legs as well. I'm on 40mg lasix 2x a day with metolazone the booster for lasix. You tell me how can I wear full leg pantyhose style compression when I'm in the bathroom almost every hour and I swear it has an effect on the bladder. I'm done n tired of the therapies I'm legs haven't improved so I'm now looking into the liposuction options and vein valve replacements. I've had to quit my work because of this, I can't do over 2/3 of what I used to love to do, its destroying certain aspects of my life, mobility and relations. If I don't take the lasix for a week I risk chf. The only way I get reduction is selling is if I literally stay off my legs bed ridden for atleast 4 days then I see some deflation as soon as I go back to living life the next day they swell up again after walking what I can do which is very little regardless how my legs are. So I can't walk for exercise anymore. I'm over this crap! Good luck to all you who have stage 1 and 2 and can manage it where you're not as compromised as me. I still drink my coffee water tea eat my wide variety of foods etc. While wishing I could manage to get back in the sand n sun again enjoy the beach, and boards visualize it just by sitting at my window. Wishing I never had to deal with this. My life would've been so different if I never inherited this. I can't accept it, or give it to God, or live my best life bc I'm always worried about where's the bathroom at when we go out, how long is the next rest stop. Not eating or drinking while on road unless I'm absolutely thirsty. It's not a positive thing. The stigma in public about bearing your legs you get looked at, talked about, frowned at, moved away from like you're contagious. I'm willing to pay out off pocket for the lymphedema reduction surgery with manual squeezing. I can't have anyone touch my legs or pass on them they bruise n are extremely sensitive to touch, hot n cold weather. The veins give a numbing feeling by being in then for just only 30 minutes, and when laying down in certain areas. My feet swell too. I can only wear Crocs. Good luck guys and keep looking for solutions. I found rorher university in hamburg, Germany is doing trials for the inner lumens of vericose veins by placing inner lining sheaths to help straighten out the vein structure and how.
My goal was to go to lpn class in FL. N ultimately become a legal nurse consultant. Until this happened we were working towards that move. It's down the drain.
Took to long for me to get a diagnosis. The other than katy bates make the subject so boring. Say we are trying to understand this this disease. Get some these doctors here from other countries to the u.s. to get some help.
And insurance coverage!!!!!!
What's the matter with people that can help.
Stay out of the sun for the most part!