Lost in USA

[ironkitten]

I have no experts or tx here in NE Iowa usa

You guys must be in England because you are way ahead of the diagnosis and treatment here. I have lost mobility in both legs. My feet are super red and painful. I am so depressed about my lack of care and doctors here. Both legs are huge and pumps and compression haven't worked. So I am desperate to find experts in this field. Why are the doctors so lacking of knowledge about the lymph system here in the states? I keep praying for some help🙏

[Lynora]

There are members of this site from your side of The a Pond who post here regularly (this site is based in London). You could use the Search option (magnifying glass icon, top right) and put Help in USA as a prompt, there are several sites linked to organisations in the US where you could seek guidance/advice.

Apart from that, if your feet are super red and painful, you might Need to see an MD urgently, to rule out infection such as cellulitis.

[ironkitten in reply to Lynora]

Thank you for your help😊

[JanCan15 in reply to ironkitten]

Hi ironkitten. I live in Lincoln NE and there are some great people at SE NE Cancer Center. They have about 3 OTs that specialize in lymphodema. Tracy Bender is awesome!!! I also have it in my legs but caught it right after chemo and surgery. Let me know if you need more info!

[Chocolate-e-clare]

Hi ironkitten, go to the lymphatic education and research network site. Perhaps someone in the Illinois chapter can help you? You probably need a Facebook account to connect with that group. lymphaticnetwork.org/

[GabbiD]

Hi there. I am also in NE Iowa. I have heard good things about Dr. Wei F. Chen, MD at UIowa Hospital. I am hoping to get to a healthy weight to be a candidate for LVA. I have lost 63 lbs so far!

In North Liberty there is a Pilates studio that has a massage therapist certified in lymphatic massage. I don't have anyone in CF that is similarly certified other than my therapist. But she doesn't do hour long massages. She just got me under control a few years ago and then is my touch stone when I have questions.

Good luck!

[Lympie5O]

Dr Chen recently left the U of Iowa for the Cleveland clinic. However, Dr. David Chang is at the U of Chicago. I have late onset primary R leg lymphedema, or it may be late onset secondary (caused by pregnancy) - its still unknown. There isn't nearly as many resources here in the states, but this blog has been incredibly helpful! I have a surgical consult in Chicago in a month, i am in WI and he is the closest option. Good luck!

[Pcure]

Great suggestions offered for US information. Thank goodness resources are becoming more available. I know, hard to believe when you cannot locate any, but once you do, you will increasingly become a strong advocate for yourself. Self advocacy is paramount in the US, as perhaps everywhere. Sometimes you feel as though you are battling every inch! I know from experience. Chocolate-e-clare mentioned LERN, lymphaticnetwork.org/living.... LERN's site is quite large but worth the effort to navigate. Also Lymphnet.org is another resource too-they also host a message board. Best of luck.

[Lm1812]

Chen (formerly Uof Iowa) @ Cleveland Clinic is amazing. It worth the trip to see him. Good luck!!