I have been diagnosed with primary lymphedema about 15 years ago. My lymphedema is in all four of my extremities but is most sever in the legs. I live in the United States and have been frustrated with the lack of knowledgable medical community. I am hoping to find connections with other lymphedema patients but also to explore resources on the microsurgery techniques that are beginning to be used.
Living in the U.S. with Lymphedema seeking and seeking... - LSN
You can find support also on inspire.com and do a lymphedema search - select NLN and you will find a great group of people with lymphedema to ‘talk’ to. Have you got a CLT (certified lymphedema therapist)? Which state are you in?
LERUN for the most part you will be up and about and feeling pretty good in a month. However, having said that, it is a long healing process. I am at a year and would still say leg is healing. But it doesn't hurt. Sometimes it gets uncomfortable at night and usually after that happens I feel that my leg went through a healing process. My doctor says it can take up to 2 years to completely heal.
I also have lymphedema in both legs and from under waist down. Most Dr's. Know either nothing about lymp.or very little.now getting terrible pain in legs.Dr. Doesn't know why. I understand this happens.I have a machine with boots. I use them twice a day. Have seen hips getting bigger. Stopped using and now now letting bigger I am from US. Mountaintop,Pa.Would love to find support group. No luck
If you scroll down this page, there appears to be a few support groups in PA. If you can’t get to them, they may be able to put you in touch with patients in your area.
I have lymphoedema from below knee, both legs, primary & since childhood. Now aged 62. Have recently been told (by vascular surgeon) that as I get older the swelling will damage my nerve ends (feet, mainly, I think). This will be painful. Orthotics in my shoes will help reduce this. I am still in process of following up and finding up more.
Charofricom my surgery including 3 day hospital stay, anesthesiologist, therapist, custom garments and this surgery itself plus multiple post o.o follow up was approximately $40k US dollars. I was fortunate and surprised in that one of my insurance carriers re ok imbursed me for a large portion of it. I had a consultation with another doctor who said it would cost me a lot less which I did not believe and furthermore I felt my doctor had more of a team approach. Hope this helps you some.
My surgery was done in Southern Ca by Dr. Granzow. I saw him at a conference speaking on the subject and set up an appointment with him. Many doctors aren't aware of what to do with Lymphedema. I actually took my primary doctor some literature in so that he could educate himself. Also told him I would be happy to talk with anyone needing support or some guidance.
Hi, I live in South East Pennsylvania and would like to make contact with others with lymphedema.
Mine lymphedema is in my Left Leg and Foot...would love to do a shoe exchange with someone who has the opposite lymphedema leg.
I wear size 6.5 N in Right foot and size 7 wide in left foot. Also, anyone flying from U.S. to Europe. What garment to wear during flight? I have a Jobst nighttime stocking and wear Jobst Class 2 stocking in daytime.
Nordstrom sells Split-order shoes. Best to go to store to make your selection. They charge for one pair of shoes even if you need different size for each foot. They are a little pricey, but better than buying two pairs of shoes.
All the best, Janet