Introducing myself...

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Introducing myself...

Postby Bowbette » Fri Jul 23, 2010 9:14 am

Good morning,

This is my first post on this site. I am newly diagnosed with lipolymphedema and chronic venous insufficiency, all of this coming just this week. My head is reeling.

I'm an old hand at anti-inflammatory food plans, so I have returned to that today. I am wearing support hose and circulatory-compression knee highs that I bought at the drug store, putting my feet up whenever I have a chance, and waiting on my next MLD appointment next Thursday. My PT has lipedema herself, and is Vodder School trained in lymphedema management, so I hope she'll be a good choice to help me with this. She is recommending treatments twice a week, and says we will talk about custom compression garments next time I see her. From what I've read elsewhere, my insurance won't cover those garments, and I don't think I'll be able to afford them, so I may be looking for OTC pantyhose instead. One person said her custom garments cost $2,200. There's no way I can do that. I'll be lucky to find $87.00 to buy three pairs of panyhose from Ames-Walker.

The vein doctor that diagnosed the lymphedema and CVI wants me to have endovenous laser catheter treatments on both upper legs, and sclerotherapy in both lower legs. I don't want to do that; it sounds barbaric to me. My insurance requires 3 months of "conservative treatment," so I have until October to decide.

But anyway, this is quite a change all of a sudden, and I really feel pretty lost. So I'm happy to find this forum, and hope to learn and contribute here.

I'm open to suggestions and advice. Please. :?

Thanks,

Bette
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Re: Introducing myself...

Postby blubrdfrend » Sat Jul 24, 2010 3:06 am

Bette, Welcome to the site. I am so sorry to hear about your problems. This is a great site for information. I don't have the same problems as you but there will be others here that can offer advice. I hope that you will get a response from someone before you get the laser and sclerotherapy treatment. Then you will know what you are facing and if the treatment has improved the life of others. Let us know how you are, we care.
Betty
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Re: Introducing myself...

Postby patoco » Thu Jul 29, 2010 8:45 am

Hi Bette

Super welcome to the family here and am very glad you found us.

I can imagine how full your plate is to get hit with this, especially with the venous problems and lipolymphedema.

I wanted to mention too that we also have a great group for lipedema, for those with lipolymphedema. It's a great group with even doctors participating in the posts/messages.

Bette, the best thing you could do for yourself is to get a referrel to a certified lymphedema therapist. With the other conditions contributing to the swelling, it is incredibly important for you to have a full evaluation and a really specific targeted treatment program. You really need to be seen by someone with certification - no room here for any errors in getting the help you need.

If you have any questions or concerns, please don't hesitate for a second to post.

My best to you!

Pat
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Re: Introducing myself...

Postby Bowbette » Thu Jul 29, 2010 8:25 pm

Hi Pat and Betty,

Thanks for the welcome and for your responses. I haven't been very active here so far, but have been reading as time allows.

Pat, I found my therapist on the Vodder School website, and I assumed that meant that she received her lymphedema education from them. Does that constitute "certification?" She is part of a practice in Raleigh, NC named "Wellness One," and they have a National Lymphedema Network sign in their waiting room. I get the impression that a significant percentage of their patients are there because of lymphedema.

Wellness One's website, now that I think of it, states that they have six "Vodder credentialed" lymphedema therapists who must be recertified every two years. Hopefully I got lucky and made a good choice. They do seem to know about lipedema and CVI, although perhaps they are less familiar with CVI than the other conditions.

In case you're interested in taking a look at their site, it is at www.wellnessone.com.

Also, Pat, I already belong to the Yahoo lipedema group, and you're right - it's very helpful. My real name is Jane, and that's what I go by there, and will go by here in future to minimize confusion.

Best regards,

Jane
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Re: Introducing myself...

Postby patoco » Fri Jul 30, 2010 9:21 am

Hey Jane

Thanks for that link. I did go through their site and it says specifically that they are certified. If they weren't and Vodder found out about it, there would be serious legal ramifications for them.

Also, I went to this page at the Vodder School

http://www.vodderschool.com/find_a_therapist

and when I went down the list, Wellness is listed. So, I am fairly confident that they are telling the truth.

The real problem is that MLD/Compression garments/Wraps has been esetablished through clinical studies as the protocol treatment. Other then that, there are no "established" treatment guidelines. As a result, therapists do many many things that to me are "fluff" and haven't really been shown to be effective. That is sad because the patient pays for all those extra things. In my (ever so humble opinion) :wink: I just don't think it is right or fair to expect that out of a patient.

Also, because of my positions in the lymphedema world/foundations I can tell you many therapists are doing their own things if they so feel they want to. They often impose their concept of diet, food, drinks (like forbidding coffee), and even life style.

We really need an independent agency that can hold these therapists accountable for what they do and we need published specific total treatment guidelines.

Glad to hear your a member of the lip. LOL..I do know who you are now :)

I must tell you though too, the thought of sclerotherapy on your legs does make me quite nervous. Be sure to question that doctor and see if he understands the potential for complications and infections as respects doing anything intrusive.

When you have that done, it might be a good idea to be on a short preventative course of antibiotics. With lymphoma, I have had so many things done on my legs and just Monday got home from the hospital from having several procedures done at one time. So far, I have not had any complications or infections and I always, always am on the antiobitics when they do anything.

BTW, didn't get a chance to tell the groups that I was in the hospital for a week. They also went ahead and just placed me in the intermediate care unit just in case any problems arose. LOL...the only "problem" was the food. Yuk, yuk and more yuk. I guess they figure if they torture the patient with road kill, the patient won't want to stay in for long.

For those in the Atlanta metro area, the hospital was the Joan Glancy hospital, operated by Gwinnett Medical. They were absolutely super and I don't think I have ever had a better experience with a hospital.

Pat
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Re: Introducing myself...

Postby Bowbette » Fri Jul 30, 2010 10:15 am

Hi again Pat,

I really don't think I can bring myself to have the vein treatments done. I am just too suspicious of the whole setup at the Vein Clinic - I may be totally off-base here, and perhaps slighting a perfectly fine doctor, but I had the "used-car salesman" reaction to the whole experience. My gut reaction is that they are set up for only one purpose there, and everyone who comes through the door gets either sclerotherapy, endovenous laser treatments, or endovenous catheter treatments. Period.

The statement, "those veins aren't varicose yet, but they will be" scares me to death. If they aren't, yet, then why don't I have advice from that doctor on how to prevent them from becoming varicose? Why don't I even have a suggestion from her that I should go out and find treatment for the lymphedema that she diagnosed? Why would I let someone fry veins that "aren't varicose yet?"

I found out while trying to address my own hypothyroid condition, that sometimes (many times? most times?) it pays to be skeptical, direct with questions, and not easily satisfied with patronizing answers. Perhaps I am becoming a doc's worst nightmare, I don't know. But I've let things slide too often in the past, to my own detriment, and have learned the hard way that that benefits no one except a doctor who tries to fit too many patients into a day. If they aren't willing to at least try to supply real answers, I'm not willing to give them my health or my money.

Thanks for all you do, Pat.

Jane
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