Living in the U.S. with Lymphedema seeking and seeking... - LSN

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

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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.

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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
Hidden
in reply to Lynora

No. I had not. Thank you.

MissMom
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?

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?

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

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

CharoFricom
CharoFricom
in reply to Snaomi

What kind of surgery is that?

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

Snaomi
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
CharoFricom
in reply to Snaomi

How much was it ?

LERUN
LERUN
in reply to Snaomi

How long was your recovery?

Snaomi
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.

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
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
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
Lynora
in reply to Jodininey11

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

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.

How much was it ?

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
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
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.

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

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.

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

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