Living in the U.S. with Lymphedema seeking and seeking connections and resources

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.

[Lynora]

Have you found the US site run by patients - lymphedemapeople.com Also, the National Lymphedema Network lymphnet.org may provide information about medics using microsurgery.

[Hidden in reply to Lynora]

No. I had not. Thank you.

[MissMom in reply to Hidden]

I am newly diagnosed and live in the US. I could really use some local support in Michigan. Where are you?

[Chocolate-e-clare]

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?

[Snaomi]

Where in the US? I live here too. California. Have a great therapists and doctor who specialises in lymphedema.

[Snaomi]

Had Sapl surgery on left leg. Within few months plant to do right leg.

[CharoFricom in reply to Snaomi]

What kind of surgery is that?

[Chocolate-e-clare in reply to CharoFricom]

SAPL - suction assisted protein lipectomy - specialised liposuction to remove fat from arm or leg with lymphoedema.

[Snaomi in reply to CharoFricom]

It is a specialised liposuction for those with solid fibrotic tissue and or fluid build up. Not a cure you have to be diligent about wearing garments. I am very happy with my left leg hip and buttock, and working on getting right done this year. Hopefully around April.

[CharoFricom in reply to Snaomi]

How much was it ?

[LERUN in reply to Snaomi]

How long was your recovery?

[Snaomi in reply to LERUN]

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.

[Jodininey11]

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

[Lynora in reply to Jodininey11]

lymphedemapeople.com/thesit...

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.

[Jodininey11 in reply to Lynora]

Thank you for your help.The closest to my home is 3 hrs away.I will try to find some help here as to how I can start a support group.Will update you if I can start something.Again thank you

[Lynora in reply to Jodininey11]

Contact them, or join the site. They may have groups not listed. This site is based in the UK.

[AnneBury in reply to Jodininey11]

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]

How much was it ?

[Snaomi]

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.

[Kallenubble in reply to Snaomi]

Where did you have this surgery done? That's so great that your insurance reimbursed you for a lot of it. Who recommended the surgery - your primary doctor?

[Snaomi in reply to Kallenubble]

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.

[Jodininey11]

I also amfrustrated Had 2 different certified therepist ,both told exact opposite to do Even Dr. Was different.

[Snaomi]

I had surgery done by Dr. GRANZOW IN Manhattan beach Ca. I met him at conference and pursued myself as my physicians just aren't aware.

[Seonaid-2]

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