Questioning my PT

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alrz1980
alrz1980 Member Posts: 47
edited June 2014 in Lymphedema

a quick recap on me...high risk, several breast biopsies (all benign), 1 enlarged lymph node removed (axillary,benign). You all have helped me so much through biopsies and now preventative lifestyle for lymphedema. Saw a PT yesterday, my second one . She said if may have a pocket of fluid on my shoulder blade. She did MLD and I go back 3 more times to learn it. I can't see or feel the pocket. I am very thin and have tried so very hard to see or feel it. Then yesterday she said "you might " have a small pocket from not using your arm enough since lymph node was removed 6 months ago, I can't get a straight answer if it really exists. Arm measurements are good. Right arm dominant ( biopsy side ) is. -4 compared to non dominant side. I don't know what that means. She showed me light (1 pound ) exercises also for possible elbow/shoulder tendinitis. BUT...she gave me a resistance band , lowest kind, with exercises. Why ? I thought this was bad? She also told me once I'm done next week I can't come back without another referral. What if I swell substantially? I'm so scared of this happening. I have a 2 year old to take care of. How do some of you keep open relationships with a therapist so u can just call and go in without another referral? I feel lost. I'm scared that more breast biopsies in the future could make me more susceptible to swelling. I have some lumps being monitored every 6 months. I apologize if I'm being intrusive since I don't have cancer. I'm just a high risk patient who got stuck in this mess . I normally can deal with this but when she told me I can't come back I panicked . I hope you all accept me here because I have learned more here than anywhere else, about my breast issues and lymphedema . I thank each of u so very much !

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited February 2014

    For sure, you are welcome here! look for binney especially, she is very knowledgeable about LE, and so is kira, and alaskaangel, so many others. www.stepupspeakout.org is a good place to start to educate yourself. so much info on lymphedema, and also preventing it. I think therapists are all different, ive had 3 love 2, but even so, they are very different. i pay out of pocket for 2, because insurance only will allow so many. try to find one that is certified. and that site will help you to find one. Good luck, and good for you, for being proactive about it!

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  • Hwally
    Hwally Member Posts: 14
    edited February 2014

    hi,

    I'm sorry I missed your PM, I feel bad, my settings were set off for some reason. 

    Is your therapist a lymph certified therapist? I think we all agree that is vital. Also, I'm gathering tha you have not actually been diagnosed with lymphedema yet? If not please correct me.

    If you are at risk but have not been diagnosed yet then some mild exercises are good for you, but i would probably recommend using some form of mild compression while doing them. Others here can tell you if resistance bands are a good idea or not, I used them when I first had Axillary cording to stretch my cord and it actually helped, but later switched to walking as a form of exercise that works for me. Everyone is different. but it sounds like your PT is suggesting them for a non-lymphedema related purpose, is that correct? 

    I see an occupational therapist and a certified fitter, I do not need to see the therapist regularly, since my lymphedema is fairly the same with only small flare ups that I have learned to handle. Some states have different laws on access to therapy and do require referrals.

    As far as measurements go, if your therapist measured your arm and it had a smaller measurement than your other arm, I would take that as a good sign that you might not need to visit a therapist for extreme MLD therapy. Even when I was in therapy, I saw my therapist for a week or so, then every two weeks for a month, then every six months. You may not need that if you are not swelling. Which is not to say that you shouldn't keep up a good preventative routine (self-massage, compression garments with new exercise routines and especially for flying or travel, good skin care).

    Lastly, I would state that your therapist should be open, communicative and willing to answer any questions. If not, it is not worth seeing them. 

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