Updates

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  Susie Keczan: Hi I have recently been diagnosed with Lymphedema and I am looking for some guidance. I live in small town not any Drs that deal with this. Did get into PT .

  • August 27, 2019
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  Sandy Brownd: Had 2 total knee replacements have had trouble with my legs swelling and hurting. Prior to the knee replacements I was given shots in my left knee to cushion ther joint some so I wouldn't have to have surgery yet. However I was allergic to the shots...  moreHad 2 total knee replacements have had trouble with my legs swelling and hurting. Prior to the knee replacements I was given shots in my left knee to cushion ther joint some so I wouldn't have to have surgery yet. However I was allergic to the shots and came down with cellulitis. Needless to say was in hospital for 4 days. It has been under control now for 3 yrs. When I went to there Lymphedema clinic we have noticed a slight improvementinmy legs. She's hoping we get my legs under control and I never get cellulitis again.
  Never have I heard of so many people having cellulitis. I wish you all the best of luck on your journey. No one likes being down with that stuff, getting the massages has really helped my legs.  less

  • July 8, 2019
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  Michelle G: Hi everyone. I have primary lymphedema in both legs for many years, the left leg is worse than my right leg. I had treatment many years ago and it was under control until 6 months ago in which I noticed a change for the worse in my left leg. I developed...  moreHi everyone. I have primary lymphedema in both legs for many years, the left leg is worse than my right leg. I had treatment many years ago and it was under control until 6 months ago in which I noticed a change for the worse in my left leg. I developed cellulitis and am now back in treatment for lymphedema as well as going to P.T. to help regain my strength and movement.  

  • June 12, 2019
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  Judy Babcock: Hello from Arizona, USA. Left leg lymphedema from a case of cellulitis. Conventional methods of treatment don't seem to be working to keep the leg from getting worse.

  • May 24, 2019
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  Barbara Baumgartner: Looking for information on compression machines. I have left leg lymphedema due to removal of lymph nodes in groin due to melanoma. Any information would be appreciated.

  • April 14, 2019
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  Pamela Smith: Does anyone out there have Primary Lymphedema (Milroy's Disease)?

  • April 12, 2019
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  Pamela Smith: Hello from Australia and thank you for welcoming me aboard :-)
  
  I and other members of my family have Primary Lymphedema (Milroys Disease). Some have passed away and those of us still living are in our latter years. I also have Atrial Fibrillation...  moreHello from Australia and thank you for welcoming me aboard :-)
  
  I and other members of my family have Primary Lymphedema (Milroys Disease). Some have passed away and those of us still living are in our latter years. I also have Atrial Fibrillation and Sleep Apnoea and have been incontinent since I was pregnant with my first child, at 20 years of age. I'll be 70 next birthday.
  
  I must admit that something which I still find unsettling, is the ignorance shown by the medical profession here in Australia, concerning Lymphedema. The latest incidence was a couple of days ago when I went to a Respiratory Specialist and he told me to halve everything I ate. Of course I'll have a go and see if it makes a difference, but it did upset me, because I could tell he knew nothing much about Lymphedema and after all, it wasn't even his field of expertise. I've been trying all sorts of eating regimes and on the whole, try to eat healthy - sugar free, gluten free..... Being older, I'm not as active as I used to be and I don't eat as much as I used to when I was younger. I am also human and like anyone else, when I go into the city, I like to have a treat, same as a lot of people. We live in the country (kangaroos and wallabies all around).
  
  I have had Primary Lymphedema from head to toe all my life. My arms bulge out from my sides, so they don't hang down flat and I can't buy clothes with sleeves, because even the large sizes don't fit, etc. etc. My legs and arms all tend to get very tight and ache at times. My arms get in the way and they constantly bump into things or knock things over - very embarrassing. I dislike photos of myself showing anything more than head and shoulders.
  
  Someone was asking if anyone else with Lymphedema has had kidney problems. I had a bad case of Nephritis when I was 16 years old and nearly died. I blew up all over, almost overnight, with excruciating kidney pain, fluid surrounding my heart and bubbling in my throat. As you can see, I survived and am still here 53 years later to tell the story. Whether that was a trigger for the Lymphedema to manifest more dramatically, I do not know for sure, but have often wondered.
  
  I can say my weight struggle began when I was very young and my parents made a 'thing' of shaming me and singled me out even at five or six years of age - despite the fact that I ate the same as the other children in the family. Into the teenage years, one of my sisters also manifested Lymphedema and is now worse than I am.
  
  Well, that's me. My apologies for the lengthy introduction, but I just wanted to give you a run-down on where I'm at. I have a wonderful husband and a loving Heavenly Father to watch over me, so I consider myself blessed.
  Thanks for this opportunity. If you want to tell me your story, or ask me anything, I'd love to hear from you.
  
  Pam
  (Lympho Chick)  less

  • April 4, 2019
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    Susan Pratt The ignorance is not just in Australia but appears to be everywhere. It certainly is here in the U.S.

    • April 18, 2019
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  Jane Young: Have right arm lymphedema (Moderate) due to surgery/radiation been managing ok past few years with compression garments. Recent bout of acute cellulitis requiring 4 days in hospital with IV antibiotics and another 7 days of oral antibiotics which just...  moreHave right arm lymphedema (Moderate) due to surgery/radiation been managing ok past few years with compression garments. Recent bout of acute cellulitis requiring 4 days in hospital with IV antibiotics and another 7 days of oral antibiotics which just finished. This situation lasted 2 weeks and now infection is cleared up I tried doing manual drainage and compression but not showing results. Any suggestions?  

  • March 4, 2019
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    Wedad Abdou Hello Jane. My lymphedema symptoms started few weeks after my mastectomy surgery last August. So, I am relatively new but I have been educating myself about lymphedema and how to manage it. It is very important to have a very good certified therapist...  moreHello Jane. My lymphedema symptoms started few weeks after my mastectomy surgery last August. So, I am relatively new but I have been educating myself about lymphedema and how to manage it. It is very important to have a very good certified therapist and to have intensive therapy program where compression, drainage, skin care, exercises and massages are utilized daily. Finding a therapist near...    

    • September 21, 2019
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  Stacey Scott: Thank you for the welcome

  • January 18, 2019

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    Pamela Smith Hi Stacey. I have Primary Lymphedema and am in Australia.

    • April 21, 2019
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  Maureen Bass: I have received a referral for someone ~700# that is presenting some challenges. I was hoping to be able to confer with a therapist / provider

  • October 24, 2018

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    margaret webb Welcome to the community

    • October 24, 2018
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  Larry Walker: Thank you for the welcome

  • October 24, 2018

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    margaret webb Welcome to the community

    • October 24, 2018
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  Tammye Boyd: Hello! I’m 2 years out since radical double mastectomy! Lymphedema showed up within the first year. I had chemo and radiation… I just started seeing a therapist last week! I sure hope she can help me! I have a lot of pain in both arms! If I...  moreHello! I’m 2 years out since radical double mastectomy! Lymphedema showed up within the first year. I had chemo and radiation… I just started seeing a therapist last week! I sure hope she can help me! I have a lot of pain in both arms! If I wear my sleeves every day it helps with the swelling! Has anyone tried rebounding for lymphatic cleaning? I read that it helps with lymphedema, radically getting rid of stagnant fluid.
  Thanks for having me, God bless all!  

  • October 16, 2018

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    margaret webb Hi Tammye, I have not had lymphatic cleaning. I hope the therapist and the sleeves help with some of the pain. Let us know how things are going.

    • October 17, 2018
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  Loraine Jarman: Hello all, sorry I had password problems.

  • September 25, 2018
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  Nancy Crater: Does anyone know about lymphedema surgery. Two options; liposuction or reconnecting the largest function vessels. This takes place at Kecia medical at USC

  • September 18, 2018
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  margaret webb: I have been so much with my legs. I spent 6 months getting shots in both my legs and spending over $5,000. Then the next doctor told me about lymphedema. That has been two years ago. And just a few days ago I found out about this community.

  • September 10, 2018

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  Jo Scarborough: Hello and thank you for welcoming me to the Lymphedema Community here online. Here is my story: In 2015 I starting noticing my ankles and feet swelling and eventually couldn't fit into any of my shoes anymore, at which point I went to my primary Dr. who...  moreHello and thank you for welcoming me to the Lymphedema Community here online. Here is my story: In 2015 I starting noticing my ankles and feet swelling and eventually couldn't fit into any of my shoes anymore, at which point I went to my primary Dr. who was not familiar with what exactly was causing this swelling but who thought it could be caused by damaged veins, so I was sent to a skin and vein Dr. who treated me for vein damage of my legs with laser treatments but after treating the damaged veins, my ankles and feet remained swollen, so he then diagnosed me with Lymphadema and suggested several things to do, losing weight, wearing compression stockings and getting lymphedema massages and therapy. I need to find a certified therapist and feel I really need to start getting the correct Lymphatic drainage massage for me and any other treatment that can help me, also I heard water exercise is a good way to keep it under control, is that right? Thanks
  Jo  less

  • September 6, 2018
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  kathy hachey: Does anyone know of any lymphodema support groups in the Dover, New Hampshire area? Thanks.

  • August 14, 2018

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    virginia k there is a community forum on the web site breast cancer .org that is annonymous but has lots of info and support.

    • August 20, 2018
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  kathy hachey: I was recently diagnosed with Lymphodema of my right leg and foot after melanoma surgery in May...It is an adjustment for sure..Have the thigh high compression stocking and starting physical therapy..Any suggestions on learning to live with this...  moreI was recently diagnosed with Lymphodema of my right leg and foot after melanoma surgery in May...It is an adjustment for sure..Have the thigh high compression stocking and starting physical therapy..Any suggestions on learning to live with this condition. I will have it for life! Thanks!  less

  • August 14, 2018

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    virginia k make sure your therapist is certified in lymphedema therapy Norton school , LANA certified. There is a web site called Speak out, Step up ( or vice versa) that I found very helpful. I have breast Le and along with decompression therapy, my PT uses...  moremake sure your therapist is certified in lymphedema therapy Norton school , LANA certified. There is a web site called Speak out, Step up ( or vice versa) that I found very helpful. I have breast Le and along with decompression therapy, my PT uses kinesio tape but I don't know if that applies to leg Le. Good luck.  

    • August 20, 2018
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  Maikki Khattab : Has anyone tried to treat gout with MLD?

  • July 17, 2018
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  Louise Tanswell: Aloha from Hawaii, I recently graduated form Norton School as an RN / MT .
  Reaching out to any Massage Therapists who are currently self employed. I have questions about billing as an MT ,and being an independent contractor for hospices / home care ,...  moreAloha from Hawaii, I recently graduated form Norton School as an RN / MT .
  Reaching out to any Massage Therapists who are currently self employed. I have questions about billing as an MT ,and being an independent contractor for hospices / home care , also anyone specializing in head and neck cancer?
  Mahalo!  

  • May 10, 2018