Looking for a lymphedema specialist in NYC

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NayaBean
NayaBean Member Posts: 50
edited May 2022 in Recommend Your Resources

I am not sure if this should be here or in the Lymphedema sub-forum. If anyone has advice on that, please let me know.

Anyway, I had a mastectomy on the left side a bit over four weeks ago. One sentinel lymph node had cancer, so my surgeon did an axillary lymph node dissection on the left side. (None of those nodes, other than the one sentinel node, had cancer.) She referred me to a physical therapist to evaluate and manage (if necessary) any lymphedema. But alas, the group she referred me to does not participate in my insurance.

So, I am hoping someone here can recommend a lymphedema specialist (physical therapist, other provider, or group) in New York City.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2021

    I am not in NYC, but a Google search yielded these locations, at major med centers. Hope this is helpful.

    https://www.mskcc.org/cancer-care/types/breast/lymphedema

    https://www.mountsinai.org/care/rehab-medicine/services/physical-occupational-therapy/programs

    https://www.nyp.org/rehabmed/musculoskeletal-and-orthopedic-rehabilitation/lymphedema-management-program

    https://nyulangone.org/conditions/lymphedema-in-adults

    https://www.montefiore.org/rehabilitation-medicine

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  • NayaBean
    NayaBean Member Posts: 50
    edited July 2021

    Thank you, SpecialK! I will call each of these programs tomorrow. (Well, except for the Mount Sinai program which was the one recommended by my Mount Sinai breast surgeon and where I struck out on the insurance front.) I will report back.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2021

    Oh good! Although does it seem odd that the Mt. Sinai breast surgeon takes your insurance but the LE specialist doesn't?

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  • NayaBean
    NayaBean Member Posts: 50
    edited July 2021

    It does seem strange, and makes me want to cry. I even asked the person on the phone what their usual out-of-network charge is, in case I can afford to pay up front and get some reimbursement from my insurance company. (According to my insurance, that would be "up to a maximum of 50% of the network allowance for covered Medically Necessary service," after a $250 annual deductible.) But the person I spoke with said they could not take me on as a patient unless they were in-network with my insurance. Which cannot possibly be true. She said a supervisor would call me about that, but I am not holding my breath.

    I am lucky to have insurance coverage, I know, but the hoops we have to go through are exhausting.

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  • NayaBean
    NayaBean Member Posts: 50
    edited July 2021

    Update:

    I spent an hour on the phone with a rep from my insurance. It turns out the Mount Sinai's outpatient physical therapy program does participate in my insurance (The Empire Plan for New York State employees), under the Hospital part of the Plan. The insurance rep even looped someone from the Mount Sinai program on the call, and that person conceded that they do participate in the Empire Plan.

    The current problem: I have to be put on a wait list just to get a phone call to set up an appointment. I was told that if I did not get a call from them by the end of the next day, to call back. I have been trying to get a phone call to set up an appointment since Tuesday (today is Friday), with no luck.

    I will probably post in the Lymphedema sub-forum about all this.

    Thanks!

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  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited July 2021

    I had an absolutely amazing lymphedema therapist at Columbia Presbyterian. Easy to set up an appointment. And they not only gave me therapy but also taught me the science behind it, and how to best take care of myself.

    Good luck to you!

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  • NayaBean
    NayaBean Member Posts: 50
    edited July 2021

    Thanks, RatherBeSailing!

    Can you tell me, did you have your surgery at Columbia Presbyterian? I have this idea that to be treated there for lymphedema, it's necessary to have had your surgery there. But I could be wrong!

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  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited August 2021

    Sorry to be slow! No, I was under the care of MSK, and they told me they couldn't treat me there, which I found odd since I had seen two lymphedema therapists there.

    So I called around, and Columbia Presbyterian took me no questions asked. A real life saver.

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  • NayaBean
    NayaBean Member Posts: 50
    edited August 2021

    Thank you, RatherBeSailing, that is great to know!

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  • NayaBean
    NayaBean Member Posts: 50
    edited August 2021

    Hi, RatherBeSailing!

    Two quick questions, if you see this: Did you go to New York Presbyterian's Lymphedema Management Program at 525 E. 68th Street, or to Physical Therapy at the Harkness Pavilion, at 180 Fort Washington Avenue? (Both locations are listed on this page: https://www.nyp.org/rehabmed/musculoskeletal-and-o....)

    Also, did your physical therapist have expertise specifically with lymphedema?

    My update: I thought the insurance issue with Mount Sinai was all settled. But when I went for my first appointment there today, I found out that the Physical Therapy department apparently did not get that memo! I decided to have the session anyway, while the insurance dispute continues. But I wasn't thrilled. The physical therapist was very nice, and showed me some range of motion exercises that I do need. But the only thing she did about lymphedema was to give me a sheet of paper with some information about lymphedema that she said would be helpful. She did not even go over the sheet with me -- she just gave it to me on the way out. And there is nothing about lymphedema on the sheet that I didn't already know, thanks to these forums and this website. So . . . my search for a physical therapist on my insurance and with expertise with lymphedema continues.

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  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited August 2021

    Hi MeredithJane -

    I went to East 68th St. And, yes, my therapist specialized in lymphedema.

    So sorry to hear about Mount Sinai!

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  • NayaBean
    NayaBean Member Posts: 50
    edited August 2021

    Thank you!

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  • Dancemom
    Dancemom Member Posts: 369
    edited May 2022

    very late seeing this, but maybe this can help someone else in future. I too was having a very hard time finding a PT who knew about Post-mastecomy care. (yes, during one phone call, after explaining what i needed multiple times, the receptionist asked "so you had knee surgery, right?" I screamed into the phone "NO I HAD MY BOOB CHOPPED OFF" and hung up.) Spear Physical therapy on E14th st has a specialist i have been seeing for post-surgery and throughout radiation to help me keep my very physical job. She is great. They take most insurance.

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  • NayaBean
    NayaBean Member Posts: 50
    edited May 2022

    Thanks, dancemom! I appreciate the info about Spear PT!

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