Forgive me, I am still learning this forum

[outofcontrol]

:( Hello. I would like to know if there is anyone here in Medford Oregon that is on here that I could talk to about Lymphedema treatments. What to expect and so forth. I am just starting therapy and am scared to death.

I'd like to hear from you and hope you will e-mail me.
Thanks

[debcox]

Hi. I'm a lymphedema therapist in the Portland area and I can tell you what I do when I treat people for lymphedema. First of all it feels great to get the treatments. The therapist clears the lymphatic pathways that are used to accept the lymphatic content from the areas that are blocked. The manual lymph drainage technique is very gentle and soothing. After the treatment, you are bandaged so that the volume reduction is maintained and enhanced till the next treatment. This process is repeated until the affected limb is reduced in volume as much as it can for now. Then you get a prescription to buy special compression garments (like thick hose) that keep the lymphatic fluid flowing out during the day. The best way to keep the limb as small and healthy as possible is to wrap it yourself at night with the bandage. If you aren't strapped financially, there are products that are easy and comfortable to wear at night like JoviPaks if you don't feel like bandaging. The therapist should also teach you simple movement/exercises you can do to expedite the drainage of the lymphatic system. You can buy online one such series from the Lebed website. Please feel free to look over my website which includes more than just services related to lymphedema. www.northwestmld.com
Let me know if you have any other questions. All the best wishes for excellent health to you.

[outofcontrol]

Thanks for replying. I will be looking over your website and keep it bookmarked for future reference. I appeciate you taking the time to talk to me. It is comforting to know that there is help out there and that I am not alone in this problem. Thanks again.

[WingingIt]

I'm not from your area, but also am newly diagnosed, and can't seem to find a physician who knows anything about the condition. "Go to your surgeon - it's a side-effect of surgery" ... "Go to the oncologist - it's a side-effect of the radiation" ... "Go to an Internal Med doc or your GP" ... it's frustrating and scary.

[Emily P. Bees]

Winging It:

I think your experience is not uncommon. They sent me everywhere else – to a neurologist who ran all kinds of tests, to radiology for MRI, back to my Internist, off the radiology again for CT scan, to a different surgeon, back to radiology for ultrasound, on and on. I finally got them to refer me for lymphedema treatment even though none of them was willing to say to my face “I think you have lymphedema.” The treatment was very successful for me. As a result, now the docs are all quite happy to acknowledge that the problem is lymphedema.

I think the trick is to get to someone who knows how to help you – and that usually means a lymphedema therapist. Try asking your doctors, all of them until one agrees, to refer you to a lymphedema therapist and don’t expect the docs to be able to treat you themselves. You could try locating a therapist on your own, but your insurance may well require a referral in order to pay for the visits. You could even try locating a therapist you want to use and then bringing that info to your docs and asking for a referral.

Don't give up. It can be a struggle - but it's worth it in the long run.

[outofcontrol]

:p H! Thanks for writing here. Today I am starting my Lymphedema therapy after I get off work. It will be interesting that is for sure. I am sure that this will go fine and finially other than water pills, there will be help for my condition.
I will be on here later and tell everyone how it went. If it was not for everyone on here, I would go crazy. It is comforting to know that there are others who are struggling with Lymphedema like I am.

[WingingIt]

Thanks for encouragement! I did the self-diagnosis thing when my right arm swelled, fingers went numb, and a rash developed over "the treated breast" - I had to insist on a referral to a therapist in November. The first therapist only did compressions, and I found one through the healthcare system who does MLD and was reffered there. I've been going to this 2nd one for MLD and compression but the MLD is good, compression technique is not. I can't get the hang of wrapping my right hand and arm (right handed), and the lymphedema has quit responding to the therapy. I cannot find a doctor who is concerned about the rash - they think I need a dermatologist now. I guess I'm just pretty discouraged right now - and glad to know there's a place to find others who have been-there, done-that ... and that it does get better! Thanks!

[debcox]

Emily has a point.

Not all physicians are familiar with Lymphedema. You might want to find a certified therapist first. Some are listed on this site, and the National Lymphedema Network at www.lymphnet.org is a great source too. They have a phone service as well.

Many independent therapists are willing to talk with you on the phone for free, but if not you'll probably have to pay out-of-pocket because insurance won't pay without a referral. In some states, LMTs can't get paid even with a referral - even though they're trained and certified.

Once you find the right therapist, ask him or her to give you the names of experienced physicians in your area.

Deb

[outofcontrol]

;) First day of therapy went pretty well. My therapist showed me some massage techniques and then wrapped my lower legs after washing and lotioning them. Tomorrow we are going to be wrapping one leg up to my thigh, then I guess it will be the other leg up to the thigh and learning more massage. I am really glad I did not wait any longer or my legs would be so big I would not be able to walk at all. This is one of the better things I have done for myself. Very much a learning experience, but, the outcome will be worth it. For those who are just starting this...I am there foryou also. Please keep writing, it gives me the courage to keep going.