Newbie to site with questions

[Brad S.]

Hi,
I'm new to the site and have a few questions I could really use some help with. First, I guess I'll need to give you my history. I'm 33 and was born with Milroys Disease. Besides some pain in my legs when I was young and difficulty finding shoes, the milroys has never given me any trouble. A few years ago I had to have some warts removed from my toes, and during the treatment, I developed cellulitis. The podiatrist I was going to was surprized that this was the first time I had cellulitis. He prescribed a pump and a diuretic for the swelling, but these didn't do any good. About a year later, I got cellulitis again. As a result of the two outbreaks, my lower leg nearly doubled in size. I kept putting off going to a doctor, because quite frankly I hate and am scared of going to see the doctor. I know that's pretty silly. Due to the poor economy, I am now close to being layed off from my job and losing my insurance, so I need to go to a doctor as soon as possible. After doing some research, I beleive mld therapy is probably my best bet.
Can anyone tell me about their experience with mld, such as length of treatment, price, was it covered by insurance, was it painful, was it succesful, etc.... I know these answers will be different depending on the area and doctor.
What questions should I be asking the doctor? What questions should I expect the doctor to ask me? I recently contacted a doctor about mld, but they weren't too helpful, and in fact asked me questions I didn't know the answer to like who diagnosed my Milroys.
Thanks in advance for your help,
Brad

[tkincheloe]

Hi Brad,

Welcome to the site! I'm so sorry you had to wait so long for an answer. Pat, our esteemed leader, has been moving and going through some tough times with his lymphedema and lymphoma and has not been feeling well lately. And Bonnie has been busy with her breast cancer group. And I have been busy as well. We'll have to keep closer tabs on you folks and not let you fall through the cracks!

Brad, you are a new member to the LE world and with many questions to find answers to. I hope during the delay between your post and this one that you have gotten some answers from other sites or people. If not, I will be happy to help out.

Milroys is a PRIMARY form of lymphedema and not a SECONDARY form. If you go to our WIKI section (on the main page of the lymphedemapeople site), you can find detailed info on Milroys. You can also find detailed info on cellulitis and LE.

As for treatment, the gold standard of treatment for most types of lymphedema is COMPLEX DECONGESTIVE THERAPY, or "CDT" for short. This involves a 5-step process: compression wrapping, manual lymph drainage (MLD), skin and nail care, exercise, and follow-up OR garment fitting/training. Of course, the first step to treatment is getting a referral to a CERTIFIED LYMPHEDEMA THERAPIST (CLT). For more information on CLTs, visit the National Lymphedema Network at www.lymphnet.org. You can also get good info at the Lymphatics Association of North America (LANA). I'm not sure of the web address but I believe it is www.lana.org. In liu of typing out a lot of info on therapists, I encourage you to visit these other sites and then if you have more specific questions you can come back here.

The economy is really in bad shape but I sure hope you don't lose your job! LE treatment is covered by most insurance companies but there may be specific requirements for lymphedema treatment, such as being pre-certified for treatments in advance or you may be limited to a certain number of visits. Lymphedema is usually treated as outpatient. I strongly suggest you contact your insurance company (your insurance card should have a toll free number on the back) to find out what specifically your employer's policy will cover. You need to do your homework on this before you start treatment to avoid any unpleasant surprises down the road. And if you feel your job is at risk, I would recommend acting quickly. Treatments are not cheap and neither is private pay insurance.

You MUST have a doctor's orders (prescription) for lymphedema treatment. This is imperative as your therapist will not be able to treat you without it. You will need this order BEFORE your first visit. Ask your doctor to refer you to a qualified therapist or treatment center. The doctor can either fax the order in for you or you can carry it in when you go for your first visit. Any doctor can write an order for LE treatment, but it is best if you can get your primary MD to do this for you.

Prevention is extremely crucial to preventing complications from lymphedema later on. Get treatment for it now and follow through with your therapist's instructions. Non-compliance with treatment once it has started or after treatment has ended is one of the major causes of more severe problems with LE down the road. Lymphedema management, unfortunately, is often a life long committment. Proper care is essential. Your therapist, when you link up with one, can help you with a plan that will work best for you.

By the way, both the NLN and the LANA sites have links to schools as well as their own listings of certified lymphedema therapists, hopefully in your area. Keep in mind that schools only list those therapists who graduated from their particular school so be sure to check all the schools' listings (there are about 11 lymphedema training schools in the U.S.). Also you can check local hospitals, outpatient rehab clinics, cancer treatment centers, and other facilities local to you for therapists if the schools aren't helpful. But make sure that the therapist has completed 135 hours of specialized training. For insurance purposes, the CLT must be either a physical therapist (PT) or occupational therapist (OT, OTR) who has completed the required training and is licensed to practice in their respective state. Nurses, medical massage therapists, doctors, chiropractors and other medical disciplines can also be CLTs but most insurance companies, and especially Medicare, will not pay for their services; they must be either a licensed PT, PTA (Physical Therapy Assistant), OT, or COTA (Certified Occupational Therapy Assistant) in order to get reimbursed by insurance companies. It is also recommended that the CLT be LANA-Certified. This means that, in addition to 135 hours of training, they also must have at least 1 year of hands-on experience (supervised or non-supervised) and have passed a comprehensive 2 hour academic exam. So when you see a "John Doe, PT, CLT-LANA" listed then you know that John Doe has both the required training, and minimal experience and the certification that classifies him as a qualified therapist.

Beware of "weekend" therapists who claim to be "CLT's" because they took a weekend course or inservice and then given a "certificate" that classifies them as certified. Unfortunately there is no law to prevent this although LANA, the NLN, and many other related organizations and lobbyists are pushing for new legislation to ensure that therapists are properly trained to treat LE. But it will be a long and slow process before new legislation makes the cut on Capital Hill and in individual state legislation. Even if they are not LANA-certified, ensure they at least have the 135-hour certification training. There are many outstanding CLTs who are not LANA-certified but are well trained and have the experience.

By the way, I am an Occupational Therapist and a Norton-trained CLT. I expect to be LANA-certified in the next month or so, as soon as I can get the time to study for the exam. I thought I left all those exams behind when I graduated from college!!! LOL!

If I can be of any further help, please don't hesitate to ask. And if anyone else wants to pop in and help Brad out, please don't hesitate to do so.

Tom Kincheloe, OTR/L, CLT
Certified Lymphedema Therapist
Myrtle Beach, South Carolina USA

[Brad S.]

Hi Tom,
Thanks for your reply. We're in the same area-I live in Conway-so I'll keep you in mind when I go to the doctor for the prescription. Do you mind telling me where your office is located? The list I recieved from the Norton school only gave your phone number.
Thanks,
Brad

[tkincheloe]

Actually, Brad, we're in Conway in the Kingston Nursing Center building located right behind and on the campus of Conway Medical Center. Please call ahead first if you would like to stop by. If you need a list of local doctors who will make referrals to our lymphedema clinic, give me a call.

Tom