New member in Virginia who is really confused.

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New member in Virginia who is really confused.

Postby KittyKat » Thu Jun 19, 2008 12:20 pm

Hi my name is Sarah and I'm 27 years old. I have lymphedema in both legs. I developed it while I was in the military (Air Force) stationed in Germany. I was kicked out of the military because I couldn't deploy because I have lymphedema and I've been back in the US for almost 2 years now. I have to deal with the Veterans Administration now and it's a nightmare dealing with them. A lymphscintography was done to try to rule in or rule out lymphedema. The doctor says that I have primary or congenital lymphedema, but I'm confused because I wasn't born with lymphedema. The lymphscintography revealed that I may not have been "born" with enough lymph nodes and that a fall or trauma may have caused me to develop lymphedema. I took 2 falls in basic training and I think that was the trauma/fall that brought on the lymphedema. I don't know where she comes from with it being "congenital."

I finally got a correct diagnosis and it took 10 months for me to get a referral and appointment to get therapy. I had therapy once before, right before I was separated from active duty, in my home town of Lynchburg, Va. I went back to the same place for therapy yesterday and today, but I have a different therapist this time. I'm even more confused because this therapist is telling me a lot of different stuff than the first one did. She says that I do not need the MLD, just compression stockings and the pumps. The pump I have is a 3 chambered pump and it really hurts my legs when I use it. They are incredibly tight around my ankles and knees. My ankles often feel as though they are being twisted like a wet rag. I met a man who has also has lymphedema through the DAV (Disabled American Veterans) who has been helping me with the VA claims and hearings. He didn't find out he had lymphedema until an injury caused an infection. He has a 12 chamber pump that he uses and he says it helps him a lot and recommended that I try to get a 12 chambered pump. The pump that the therapists have in their office is a 4 chambered pump. I remember it was very comfortable when I used it and not at all painful and uncomfortable, compared to the one the VA got for me. The therapist thinks that the 3 chambered pump works fine and also because my leg looked really good after we used it. About 15 minutes after I got home from using the pump, my leg was just as swollen as it was before I used it. I'm really overwhelmed with having lymphedema in both legs and I hate what it's done to my legs. I don't think the therapist understands me, because she keeps saying "Your lymphedema isn't that bad, it's really soft and moves easily." I've had some nightmare experiences with compression stockings the Veterans hospitals have ordered and I'm really nervous about compression stockings. Most of the time they've not been ordered right and too high of a compression scale and the prostetics or place where I get them can get the stockings on me, but I can't get them on after I leave! The lymphedema affects my lower legs, not above the knee yet. but my therapists wants me to get "thigh high" stockings and I don't really know why.

It's pretty hot now in Virginia and we're not into the hottest temperatures of summer yet. I don't think I will be able to stand the compression stockings in the heat. I told her this when I saw her today and she says that they will be very light-weight and very sheer and thinks I'll manage. She also doesn't listen when I try to explain to her that I have a lot of problems with my feet, including bone spurs, heel spurs, plantar fascitis, and bunyons on both. I asked if I could get stockings that end at the ankles, but she said it would give a tourniquet effect. She's pretty much insisting that I get open-toe compression stockings.

I'm so confused and frustrated with all of this. I wish I hadn't gone in the military now. I wouldn't have had any of the problems that I have now if I hadn't joined the military. I still don't think I've been diagnosed right. I'm frustrated because I've been so stressed out and I've put on a lot of weight, which I know doesn't help. My parents are convinced that the weight I put on, caused the lymphedema. I used to be a runner, but can't now because of my feet, the doctors fear if I was to try, my feet would break because of the stress fractures.

I wish I could go to a private doctor with no affiliation to the Veterans Admin that could look at my legs and see if I really do have lymphedema. I have looked and looked to see if a there are doctors that specify in Lymphedema, but I don't know if they exist. I'm always recommended by the Veterans Admin to see a vascular surgeon. If anyone knows of a lymphedema specialist in Virginia, North Carolina, Maryland, or anywhere on the East Coast, please let me know. I'm ready to travel if I have to, to try to get the help I need.

Thank-you for your help.

Sarah
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Re: New member in Virginia who is really confused.

Postby patoco » Thu Jun 19, 2008 2:13 pm

Hey Sarah :)

There actually are a number of people who were born without a complete lymph system and who don't show lymphedema until either puberty, or middle age. Also, many who don't show it until there is a triggering event. An injury, infection, inflammation, over stressed, there are numerous events that could overwhelm the lymph system's ability to move the fluid.

Then, the lymphedema will start.

If that pump hurts, then I'm afraid you absolutely must stop using it. Who set the pressure? The three chambered pump really has been out of use for some time. Also, though, I am not very favorable towards pumps because of the complications they could cause.

You might want to read over theses pages:

Why Compression Pumps cause Complications with Lymphedema

viewtopic.php?t=327

Having said that about pumps in general there are two that have been proven to be both safe and effective:

The Flexitouch Device - Initial Observations

viewtopic.php?t=155

Also, Bio Compression Systems sells a pump that uses an insert called the Optiflow System (inset). This will help prevent the lymphatic damage caused by other pumps. their website is: http://www.biocompression.com/index.htm

Here are some treatment pages too that might be beneficial.

Compression Pumps for Lymphedema Treatment

http://www.lymphedemapeople.com/wiki/do ... _treatment

Treatment Position Statement of the National Lymphedema Network

http://www.lymphnet.org/pdfDocs/nlntreatment.pdf

MANUAL LYMPHATIC DRAINAGE (MLD) and COMPLEX DECONGESTIVE THERAPY

http://www.lymphedemapeople.com/wiki/do ... herapy_cdt

Sorry, but I just don't have much faith in the VA docs and their understanding of lymphedema....especially hearing from a number of service people. Has the VA therapist any certification in lymphedema treatment?

What we need to do is get you to an independent therapist for a thorough evaluation.

You can use this page to link to schools that train and certify therapists:

LYMPHEDEMA THERAPISTS - SCHOOLS OF THERAPY

http://www.lymphedemapeople.com/thesite ... herapy.htm

Whew :wink:

Finally, check this page out to see if there might be a doctor in the list that you could contact:

Registry of Lymphedema Doctors

viewforum.php?f=25

At least this gives you something to do in your spare time, right? :wink:

Welcome to our family here. If you have any questions on all these pages, just let me know.

Remember, we are all here for you :!: :!: :!:

Pat
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Re: New member in Virginia who is really confused.

Postby Cassie » Thu Jun 19, 2008 4:19 pm

Hi, Sarah,
I can't add anything to Pat's thorough and knowledgeable advice, but I did want to add my welcome too. Glad you found us!

Unfortunately, even those of us not using the VA facilities have to struggle to find good care, and then struggle some more to find what works best for us -- we're all a bit different in our needs and our body's response. So I wanted to encourage you that with your determination and concern you really will find the help you need, and slowly you'll begin to feel like your life is back in your own control. Hang in there!

And please do keep us posted on what you discover.
Hugs,
Cassie
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Re: New member in Virginia who is really confused.

Postby robert » Thu Jun 19, 2008 9:24 pm

welcome sarah you are not alone we all been through this i am new to this site is great hang in there robert
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Re: New member in Virginia who is really confused.

Postby KittyKat » Fri Jun 20, 2008 11:43 am

Hi Everyone,

Thanks for the welcome. Thanks Pat for all those sites you gave me. I will get onto them really soon. I have to go to an interview in a little while. None of the Veterans Hospitals in the state of Virginia have any lymphedema trained therapists, so I was referred out to a clinic in my home town. (I don't even live near a Veterans Hospital or clinic, the closest are 2-3 hours drive, that only adds to my frustration!!!) There are 2 therapists that are certified at Virginia Baptist Hospital in Lynchburg. I saw one in Nov 2006 when I was still on active duty and she very "by the book." The other one is really confusing me because NOTHING she does is by the book. The first time I ever used a pump was in Nov 2006 and that was a 4 chambered pump and it great, very comfortable and made a difference. I'm so frustrated right and I'm so stressed that I can't sleep either, which is not what I need to. I may have found another MLD therapist who is a friend of mine. He also does something called a foot detox. What do you think about those? Thanks again to everyone, I'll let you know what happens. Sarah
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Re: New member in Virginia who is really confused.

Postby swelly17 » Mon Jun 30, 2008 6:44 pm

Sarah,

Let me echo that I can not give much more advice than that which has already been posted. However, I am 26, and have LE in both legs too, so I can relate to you on a peer level. I was diagnosed when I was 14 with no previous family history and no falls, surgeries, or anything that should have "caused" it. After 12 years I still have never gotten a completely clear diagnosis of what casued my LE to begin. Various doctors have given me various reasons for the onset; all fairly different. I was told that it was primary lymphedema, which like you thought, I felt was ridiculous. I finally had one doctor say that the cause was idiopathic, which means there is no clear cause. What a great word. I didn't say to the doctor, "Maybe you're a idiopath," but I wanted to. But somehow having a doctor admit that they don't have an answer is comforting and terrifying at the same time.

First, be very careful in using pumps. I have one, but it works very well and I use it very carefully. If the one you have hurts, see about getting a new one. If the therapist you have been going to isn't listening to you, find someone who will. My LE isn't "That Bad" either according to the various "experts." However, to me it is awful. I know that others come in with much larger limbs, but I need someone compassionate enough to realize that to me this is a big deal. Most athletic clinics or physical therapy clinics have a massage therapist that is trained in MLD therapy; keep trying until you find somebody that you like. I recommend trying various types of compression stockings until you find something that works for you. It is hot as the dickens here in Tennessee too, but during the heat of the day, I either try to stay inside or in a pool. When my LE began, it was only in my ankles, but it spread, even with treatment, down to my feet and up to my thighs. So having the thigh highs may be a preventative measure. Also, when I used the knee highs, they were binding at the top and could be very uncomfortable. I now prefer the open toes because my feet also swell and I can wrap my toes to keep the swelling down. My favorite are the Juzo Soft; I use the 30/40 compression. The best "color" I have found is in the Sigvaris line, but even they aren't that great, but I almost never wear skirts anymore.

If I have learned anything in my years with this condition, it is that you must be your own advocate. Unfortunately, you usually know more about the condition than most of the health care providers. However, it is imperative that you find a good therapist. They will be your advocate. They know how to tell doctors the things they need to know to help you. Also, my therapist is the only one that really knows a lot about LE.

I hope some of this info helps. If you want any more specifics, feel free to ask!

Ann
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