Newbie in Texas

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Newbie in Texas

Postby moonfae » Mon May 12, 2008 1:15 am

Hey all. My name is Tyna, I'm gonna be 22 on Saturday, and I live near Dallas, Texas. I just recently found out that I have lymphedema, which was brought on by a disorder called Neurofibromatosis. NF causes tumors to grow in and along the nerve endings, and the massive plexiform tumor on the back of my right leg and across my back apparently also causes the lymphedema. I also have something called a meningocele, which is similar to spina bifida, in a way. Basically my spine grows a bit funny, as do my hips.

I am now on disability, though I was working up until January when I had a car accident that fractured my pelvis. Now I am more or less healed from that, though I am still walking with a cane, I've kinda worked it into my style lol.

I'm looking forward to talking to people who understand the big frustrations and the small ones (finding jeans that fit over the mass for instance, which often fits into BOTH categories lol). Take care, and I hope everyone's Monday is at least tolerable. :D
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Postby patoco » Thu May 15, 2008 4:30 pm

Hi Tyna

Happy birthday :!: :!: :!: :!: Are you gonna have a party :?: :D

Welcome to our family too.

They have actually found lymph system dysplasia (malformed lymph system) with neurofibromatosis and I am not suprised that you have the lymphedema in conjunction with it.

Have you had treatment for the lymphedema? How long did you have it before they were able to diagnose you? There are some good LE centers in the Dallas area if you need one.

If you have any questions, don't hesitate to ask. I'm usually more prompt in answering, but this week have been buried in work updating our 340 articles on the left.

Look forward to getting to know you.

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Postby moonfae » Fri May 16, 2008 12:07 am

I've had the NF all my life. We didn't find out about the lymphedema until just recently, seeing a new doctor that specializes in Orthopedic Tumors. I've had one massage treatment done, but even just that seemed to work miracles. The swelling in back was reduced greatly, and I was able to raise my leg basically straight up in the air, and I haven't been able to do that for nearly 10 years.

I have just gotten my disability, so once I can start seeing my primary doctor, I will find out more about who I can go and see for the lymph stuff (the massage treatment was done by my Mom's boss, a Medical Massage Therapist.) Gonna have to jump through the hoops of Medicaid and all that, but I'm willing to do that if they are willing to pay for a vast majority of the bill LOL.

And thank you for the birthday wishes. My party is going to be dressing up and going out to the Renaissance Festival. I am normally part of the cast, but my pelvic fracture in January ruled that out for this year. I miss being out there with people I consider family, and next year, especially now that I'm not dealing with a retail schedule, I plan to be back and better then ever. This year, I will make do with going out and having fun.

Take care, have a good weekend all!
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Postby Brad » Wed May 21, 2008 10:06 am


We're glad you found us! :)

I am confident that you will find the support and community here invaluable.

Welcome to Lymphedema People!
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