Newly diagnosed -- looking for treatment options in Phoenix

[urbangirl]

Hi. I was diagnosed with lymphedema in my right leg. In 2000 I had a hysterectomy with lymph node dissection. I wasn't informed about any side effects, like lymphedema.

I am working through Mayo Clinic and am disappointed by their lack of knowledge and treatment options.

My lymphedema started in mid February and is getting progressively worse. I wear a compression stocking every day, even in the Phoenix summer heat. If I swell significantly I wrap and take a diuretic but it doesn't bring down the swelling.

Does anybody know of therapists or doctors in Phoenix or have any treatment suggestions.

Thank you.

[Julie Ferguson]

Hello Urban Girl,
I don't know any therapists in your city...but I do know of an excellent lymphedema therapist in Tuscon. Her name is Pere Summers at Healthsouth. Not sure how far away you are from her, but maybe you could make the trip or call her. Good luck.
Julie

[adamstarr]

Hey urbangirl, I'm sorry to hear that you're having problems.

Who prescribed you a diuretic? Diuretics are bad for lymphedema because they remove fluids from the affected limb and leave a higher concentration of the proteins that lead to fibrotic tissue.

In the long run, taking diuretics will make it harder to control the swelling.


I found this doctor on a registry of lymphedema doctors on another site.
http://www.surgery.arizona.edu/faculty/Witte-M.htm

[Gazania]

Urban Girl, I was just diagnosed with LE in my left leg and was referred to 360 Phisical Therapy & Aquatic Centers in Chandler. Although I don't know all the things I should be asking or what info they should be telling me, my OT seemed to convey a great deal of info and reduced the swelling by over 50%. We will see what happens now that my therapy sessions are over and I am on my own.

[PhoenixKate]

urbangirl --

I only recently registered as a member here; I wish I had been around back when you first posted your question.

Still, perhaps this info will be of some use to you now if you are still reading here, or of use to some other Maricopa County resident.

There is a place called the Lymphedema Treatment Center, which is affiliated with the Virginia G. Piper Cancer Center at Scottsdale Healthcare.

Here is the link to their website:

http://www.shc.org/content.asp?lnavid=88


And here is an excerpt from that site:


"The Lymphedema Treatment Center at Scottsdale Healthcare offers the only Phase I and Phase II treatment center in the state and is the only Arizona-sponsored National Lymphedema Network (www.lymphnet.org) facility.

(snip)

Treatments range from manual lymph drainage and compression to therapeutic exercise and Kinesio Taping®. Our therapists may also provide at-home exercise programs and assist with choosing supplies and medical compression garments.

Therapists are certified by the Lymphology Association of North America (LANA) in the assessment and treatment of lymphedema.

For your convenience, treatment and services are available at:

Virginia G. Piper Cancer Center
10460 N 92nd St, Suite 203
Scottsdale, AZ 85258
480-323-1233

Anyone may contact the Lymphedema Treatment Center for information and assistance. However, because lymphedema therapy is a medical treatment, a referral from your physician is required to initiate treatment. If you believe the center can help you, please contact your physician for a referral.

Once a referral is obtained, call 480-882-4703 to schedule an appointment."

My sense is that many of their patients have been treated for breast cancer there -- but I also have leg lymphedema, and have been to the Center to see their therapists; they welcome patients with all types of lymphedema, as long as your doctor will write a note of referral (although perhaps a phone call will do as well, I don't know). If you phone the Center, you may get the answering machine, but they are pretty prompt in calling back to answer your questions.

I'm pretty early in the "progression" of this awful disorder, so far they have recommended only compression stockings and have showed my husband how to apply KinesioTape on my back, which helps with drainage. (Although we discovered a different, much less expensive brand of tape online, called KindMax, which is working just as well as the KinesioTape.)

If I get worse, I'll be going back to them for more treatment options; and I may go back in any event, because I'd like them to teach me to do self-massage.

Good luck to you, and to anyone else living in the Phoenix Metro area (and to all the rest of my fellow LE sufferers living elsewhere, of course!) The level of ignorance among healthcare professionals is appalling; may they begin to wise up about the lymphatic system, a woefully neglected area of medical study, IMO!

I'm glad I joined here.

Kate

[Ann]

Thank you for sharing information about a treatment center that is working well for you.

Lymph Notes receives many questions asking for the names of facilities -- and this information is difficult to find. You are helping others by sharing this information!

Ann

[imran]

My daughter 21 years of age has lymph edema of left leg.I am from Pakistan and i could not find a trained therapist in lymph edema in pakistan.please help me in finding therapist near pakistan

[Ann]

I wish I could find a therapist for your daughter; however I could not.

My suggestion is that you go to this website http://www.vodderschool.com and try to make a connection with some one there. The Vodder School has an excellent reputation and an extensive list.

Your goa should be to contact a person who may have more effective suggestions for you.

Best wishes to you.

Ann, from Lymph Notes

[Dr. Brennan]

There is a new lymphedema treatment center in Scottsdale, Arizona staff by an occupational therapist with her LANA certification and clinical doctorate. Dr. Andrea Brennan, OTR/CLT-LANA, DAPWCA has over 35 years experience with 20 years of lymphedema practice. She can be reached at andrea.brennan@healthsouth.com for prompt and comprehensive lymphedema care