Lymphedema - Which Doctor??
Curious for those with lymphedema, which doctor helps manage it for you, or helps navigate your care for it? Your surgeon? Oncologist? Primary care doctor?
All my cancer care is with KU. I am in lymphedema OT now and am requiring more intervention (pump, night time sleeve etc). The surgeons team has lymphedema RNs, but I was recently told they are more for prevention and not treatment. They are referring me to a plastic surgeon? I’m annoyed and have pushed back because I feel it’s a delay in care and no one has explained WHY a plastic surgeon would be involved.
Anyone have a similar experience? Help me make sense of adding yet another provider to this mess? Appreciate anyone’s insight! Thank you!
For me it was my breast surgeon who tracks my lymphedema and body swelling. She referred me to an occupational therapist who showed me how to wake up my lymphatic system and how to daily exercise to get it to function normally. It has taken a year and a half and I’m still working on it however on the SOZO scale I went from a 15 which the normal high is 6 to a -1.1 which is great. It takes daily exercise sometimes I did up to 3 times a day because I was so scared . But it came down. For me the swelling was all on my left side including my arm. I never wore a sleeve. But you need to do what is right for you. The occupational therapist was the game changer for me and the doctor was the referral.
Hope this helps… don’t be discouraged it takes time.
@mwilson502 Wow, congratulations on your progress! I just wanted to add to this--I do not have lymphedema but we are pretty mindful because I have some risk factors for it. I also get checked on the SOZO scale every six months when I visit my breast surgeon. I see Dr. Beahm at Sarah Cannon at Menorah.
Thank you for the responses. I saw the NP in plastic surgery today and she’s fantastic. She explained how she works with the lymphedema OTs to tailor treatment as needed. She’s also scheduled me for ICG injection with lymphatic imaging so we can truly see where my problem areas are. So, feeling much better about the process! Thank you!
Good to see you are not as troubled. Shout out to @janedoe7 , Dr Beahm is the best…. she’s my surgeon as well. Us warriors need to stick together 🙏💕🙏
@nope, so glad you are on the right track. I hope relief is on the way! Please keep us posted. @mwilson502 I agree, Dr. Beahm is great!!! Did you also see Jenny Carter at Menorah Outpatient for OT? She helped me with cording and radiation fibrosis.