New Member with Primary Lymphedema

leg pain, leg bleeding, Farrow Wraps, Compression Stockings, cold feet, Reid Sleeve, Restless Leg Syndrome, Leg Cramps, Compression Pumps, Shoes, lower limb lymphedema, secondary leg lymphedema, leg wrapping, Cold Feet, Compression socks, nerve pain, self leg massage, right leg lymphedema

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New Member with Primary Lymphedema

Postby blubrdfrend » Fri Jul 02, 2010 9:16 pm

I wish that I had discovered this site years ago. Because of recent problems, I started searching for information on lymphedema treatment. My heart is broken to find so many people suffering from it. I have never met another person with LE so I was stunned to find so many. I always thought that there was very little research because the disease was so rare. Although I am saddened to see so many of you, I am so grateful for this site. It is good to hear information and advice about problems that I have faced and will face in the future.
I have had primary lymphedema of one leg for 47 years with very little treatment. I appreciate the information and stories that you have shared. Please know that it is making a difference in the lives of others. May God bless the creators, administrators and members of this site.
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Re: New Member with Primary Lymphedema

Postby ma1290 » Sat Jul 10, 2010 11:26 pm

Welcome! Glad that you found the site. There's a very friendly community here.
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Re: New Member with Primary Lymphedema

Postby dukefan78 » Sun Jul 11, 2010 1:29 pm

Welcome to the forum!! I am a new member as well there is a lot of wonderful information here and I have learned a lot by reading other people's experiences.
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Re: New Member with Primary Lymphedema

Postby blubrdfrend » Mon Jul 12, 2010 4:30 am

Thank you for the welcome. I appreciate your response. I am currently having problems with cellulitis. Some days are very long. It has gotten so bad that I have started a farm on Face Book.
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Re: New Member with Primary Lymphedema

Postby dukefan78 » Mon Jul 12, 2010 6:04 am

I sure hope you get to feeling better soon.. I don't have cellulits right now, but my legs are so swollen it's very painful. I to use facebook a lot, farmville is a nice way to pass some time.
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Re: New Member with Primary Lymphedema

Postby patoco » Tue Jul 13, 2010 8:01 am

Hi blubrdfrend

Super welcoem to our family here :!: :!:

I wanted to ask what condition your legs are in after 47 years. That's a heck of a long time.

What kinds of treatment have you had?

Hope that cellulitis gets better. Been there, done that way to many times. I started getting it so often that my infections doc placed me on a daily preventative dose of antibiotics. Sure has helped an incredible amount. I've only had one minor episode in years now versus just about every year (or more).

Dukefan78 - hi to you as well :) ...what kind of treatment are/have you gone through?

My best to you both :!:

Pat
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Re: New Member with Primary Lymphedema

Postby blubrdfrend » Thu Jul 15, 2010 12:46 pm

Hello Pat, Thank you for the welcome. My left leg began to swell in 1963 at age 17 (64 now). The swelling started in my ankle. I had a series of test in my small north Texas town, that found no cause for the swelling. The leg continued to swell through the years. By 1974 I was living in Dallas TX where I found a family physician who was interested in my condition. My physician decided that I had Milroy's disease and began to research the disease. He suggested that I see a surgeon at UCLA. In 1974, Dr. Eric Fonkalsrud did a debulking process on the inside of the leg. Dr. Fonkalsrud explained that I would need further surgery to reduce the other side of the leg. He did not attempt surgery on my ankle or foot, explaining that the skin on the foot could die and that attempts had not been successful. I had the outside of the leg done by him in 1982. The good thing about the debulking process is that the leg can not swell as much as before. The bad thing is that if there are some tiny drainage points left in the leg, they could be removed or damaged. I moved back to rural north Texas and found Dr. James Nicholson in Greenville TX. He has been very supporting and informative about this disease. I was fortunate to be able to continue working in an office setting. I had been off work three months with an attack of cellulitis when I took an early retirement. While working on genealogy recently, I discovered two old photos that show individuals with swelling in the legs. One was my great grandmother, the other was her brother. They probably had lymphedema. Unfortunately everyone that could have told me is dead.
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Re: New Member with Primary Lymphedema

Postby dukefan78 » Thu Jul 15, 2010 2:21 pm

About three weeks ago I called and set up my frist visit with a therapist, I then had to re-schedule due to my husbands job change. In the meantime I was mailed out papers to fill out. Some of the info already typed in the space (such as what I was being seen for) lymphedema. So finally I had it all set up for today (Thursday) I had decided I would call the office yesterday, I had just a few last minute ?'s I wanted to ask. I brought up lymphedema, the woman I was talking to said you aren't being seen for that are you?.. I said yes, she said I didn't think you were down for lymphedema treatment.. Well, she then looked me up on the computer and sure enough I was down for lymphedema treatment. She then starts saying I am so sorry then she says they no longer had a lymphedema thearapist!! So, I am on the look for a new place of treatment and hopefully I shall find one soon!...
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Re: New Member with Primary Lymphedema

Postby patoco » Sun Jul 18, 2010 11:18 am

Hey blubrdfrend

Ugh, actually I'm sorry to hear that you have those debulking surgeries. I had a series of three done i 1971, 72 and 73. It was on the left leg (including foot btw). The first one was on the outside and then there were two on the inside. I also had to have a couple skin grafts just above the knee.

You're right about the leg not being able to swell much more. My left leg is actually smaller now then my right leg. But, I have to tell you that it didn't help at all with preventing infections and after this long has caused the leg tissue to be as hard as a rock.

Other problems I've had (not even mentioning the nerve damage) is massive papilomatosis, draining areas, a number of dermatofibromas and finally, lymphoma. It is interesting to me that the lymphoma first showed up in the leg that had the debulking surgery. So while I can't prove the surgery helped cause it, I just have my suspicions.

I honestly don't see any excuse at all for any competent doctor to do the surgery today and am very vocal in getting people not to have them.

Here's a page we have on them:

Complications of Lymphedema Debulking Surgery

viewtopic.php?t=200

Sounds like our families are similar too. We can firmly trace the Milroy's in our family back to my maternal grandmother. But, I do remember when I was very young hearing about other family members having "milk leg" (as they called it then. I suspect there were others - even before my grandmother. It's a shame that families don't pass on that type of information so that the coming generations know what to expect.

Pat
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Re: New Member with Primary Lymphedema

Postby patoco » Sun Jul 18, 2010 11:22 am

Hi duke :!:

OMG...that's a total downer. Seems like they weren't paying too good of attention and should have let you know that right off the bat. If you need help in finding another one in your area, just let me know where you are and I'll be glad to help :!: :!:

Pat
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