Acupuncture and LE

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my2boys
my2boys Member Posts: 339
edited June 2014 in Lymphedema

My friend keeps telling me to do acupuncture for LE.  I asked my LE Therapist about this and she said that some of her patients have tried this, but they didn't have good results.  She said that some patients had mild relief, but that is about it.  Has anybody tried Acupuncture??  Any advice would be appreciated. 

Thank you. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2012

    My2, this is still a bit of a controversy in the LE world, because of course needles pierce the skin, and that's a LE no-no. That said, there is a study currently underway, attempting to determine if acupuncture can help reduce swelling and whether or not it is safe for those with LE. No results yet, so no way it can be recommended specifically for LE.

    At any rate, if you decide to try it there is no reason that any needles need to be inserted anywhere in the affected quadrant (arm, hand, shoulder, back, chest or side on the side that was treated). Acupuncturists can use other sites. 

    If you have had cellulitis it's not recommended at all, anywhere on your body -- too many unknowns.

    Hope some of that helps! Be well,
    Binney

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  • my2boys
    my2boys Member Posts: 339
    edited May 2012

    Thanks Binney....that does help.  I am going to ask the acupuncturist exactly where these needles will be inserted and I will also make sure he uses disposable, sterile ones.

    I did talk with my oncologist today and she said she knew of a clinical trial at the cancer center I use...Memorial Sloan Kettering.  She said that they had good results with acupuncture.  I think she mentioned that some of the participants had as much as a 30% reduction in swelling??  I must admit that I am a bit scared of the needles though.  She asked me what my LE therapist thought and I told her that she didn't give it a glowing recommendation...pretty funny since she too is affiliated with MSK Cancer Center....hmmmmm.

    I had cellulitis in my affected arm last year.  What is the reason that it is not recommended for persons who have had cellulitis?

    Thanks again for your help Binney.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2012

    My2, sometimes cellulitis starts acting like it owns the place, and can show up over and over,Tongue out so extra precautions are wise. For people dealing with repeat cellulitis some think that any "insult" to the body anywhere can trigger it in the affected limb. That seems like a remote possibility to me, but anybody who's had it knows they don't want it again. That's the thinking anyway. Your call! Do keep us posted.

    The reduction the onc is seeing is not all there is to the study. Other questions it needs to answer are, how long does the reduction last? How often does acupuncture need to be done to be effective? How safe is it--what was the rate of infection, since these are at-risk limbs? Too often with research, the people who propose a study do so because they believe strongly in a certain treatment and want to prove it. That's not an objective starting point, and sometimes the results can shift toward their bias. I'm not saying this is the case with this study, just that it's not unheard of. Once the results are published it can be easier to tell if the study was well-designed and executed. Just something to think about. This study has been in progress for some time, so hopefully we won't have to wait too long to see results.

    Be well!
    Binney

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  • Nitocris
    Nitocris Member Posts: 187
    edited May 2012

    Hi,  last Friday, Joe Zuther posted the following link on his Facebook page "Lymphdema Guru".

    http://aim.bmj.com/content/early/2011/06/17/aim.2011.004069.full.pdf  -   A safety and efficacy pilot study of acupuncture for the treatment of chronic lymphoedema.

    If I understood well, several professionals from Sloan Kettering conducted this study last year. 

    Binney, is the study you are mentioning a follow-up to this one?

     Be well 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2012

    Nitocris, yes, that was the pilot. Nine women, limited time frame. They're undertaking a larger study (hopefully longer too), but I don't know where they are with it. Maybe some of the women here who are at SK know? Anyone?

    Be well,
    Binney

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  • my2boys
    my2boys Member Posts: 339
    edited May 2012

    Oh brother....only nine women???  I think that this is the study my oncologist was referring to.  She seemed quite familiar with it.  It looks like I will have a boatload of questions for the acupuncturist.  I'll let you know how this turns out.

    Thank you ladies.... Laughing

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  • my2boys
    my2boys Member Posts: 339
    edited May 2012

    So it turns out that the acupuncturist doesn't have any experience with LE.....grrrrrr.  I guess that I will try and locate one who does, but my guess is that there aren't many out there.

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  • Nitocris
    Nitocris Member Posts: 187
    edited May 2012

    M2boys,

    There was an article published last spring in LymphLine, the journal of the Lymphoedema Support Network (U.K).

    35 participants took part in the study.  However, the focus of the study was more on improving well-being, reducing pain and improving quality of life of the patients.  Acunpuncture/moxibustion was not used to treat lymphoedema itself.  The whole affected upper quadrant was avoided.

     I don't remember where I read that moxibustion was not recommended at all for LE people because of the extra heat generated by the warm needles.  But on the other hand, heat helps with pain.  They don't discuss that point in the article.  I guess that's another one of those controversial issues in the treatment of LE.

    http://www.lymphoedema.org/Menu3/6Research and clinical trials.asp -  Using acupuncture in the management of lymphoedema

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    Hi...It was actually my accupuncturist doing the study but I did not participate.

    (Because when they were enrolling I did not have LE...I think that's kind of funny.)

    I guess I would have made 10.  

    He is a smart guy and has a good relationship with the oncs, but the LE department still has some reasonable doubts.

    My2boys I bet we are traveling in the same MSK/LE circle.

    That being said, now that I have had a gazillion injections in my LE arm, I kind of wonder if there might be something to the accupuncture study. 

    Mind you I am not saying run out and do it with anyone, but if you are in NYC and can go to the MSK complimentary center, it MIGHT be something to consider. 

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  • my2boys
    my2boys Member Posts: 339
    edited May 2012

    Thank you ladies.  As it turns out, I ended up chatting with an acupuncturist yesterday.  This fellow has a very good reputation in our area, but he is kind of expensive, so I don't know.  He told me to ask my oncologist if I can start taking selenium.  I have never heard of this mineral before and when I googled it I was a little concerned about the possible side effects.  Anybody know anything about selenium and lymphedema....Binney???  At the doses he was talking about, it could do more harm than good.  I asked him about the acupuncture and if he would stick me in the affected arm.  He said that he was going to stay away from that whole area.

    My oncologist isn't around this week, so I contacted my lymphedema therapist who told me that she never heard of taking selenium for this condition, but she would research it and get back to me.  She reminded me that since I am still technically in treatment, there is a whole different set of rules for me than someone who is not a cancer patient.  No rush on this as I am not going to begin acupuncture until late summer.  I need to get this surgery out of the way first.

    Nitocris....I clicked on the link you provided, but it didn't work.  Thanks anyway.

    Hi cookie....I am out here on LI, but I think at MSKCC, everyone is connected, right??  Good luck to you.

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  • Marple
    Marple Member Posts: 19,143
    edited May 2012

    my2boys~regarding selenium.  Using the 'Search' option, under 'keywords' enter selenium, and go to the 'Lymphedema' Forum.  All kinds of posts and discussion.   

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  • Nordy
    Nordy Member Posts: 2,106
    edited May 2012

    I did acupuncture and actually let them stick needles in my arm. MY choice - I am certainly not encouraging anyone. I found that the treatment helped other things like my jaw and ankle pain, but did not really help my lymphedema. However, it did not hurt it either and I do think by breaking up some muscle spasms in my upper traps, there was some decreased discomfort. SO, I am not here to promote or deter someone from the treatment - simply to state what my outcome was. And yes, I would do acupuncture again... probably not to treat the lymphedema, but to treat other ailments!



    As far as selenium, do you like brazil nuts? Just one or two nuts per day provide the recommended daily amount of selenium (so don't go crazy on your intake!). Other good sources are seafood and whole grains. I used to take a supplement every now and then, but like you I really worried about possible toxicity. I think the best source of this mineral is from food, so this is my choice now! If you can get raw nuts, even better. Trader Joe's sells them as well as the bulk section of many stores. Bon apetite'!

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  • my2boys
    my2boys Member Posts: 339
    edited May 2012

    Thanks again ladies!  I pulled up the information that was posted regarding selenium and you were right, Marple, there was plenty of information there.

    Funny you should mention brazil nuts, Nordy, I actually went out and bought some last night.  I will go to Trader Joes this weekend and see what they have.  The only ones I could find were in a mix with others.  I agree that a few brazil nuts each day is a better option than taking a supplement.

    Smile

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  • my2boys
    my2boys Member Posts: 339
    edited September 2012

    Hi Ladies,



    I just wanted to update you. I found a good acupuncturist in my area and he obtained a copy of the clinical trial at MSK Cancer Center for lymphedema that showed about a 30% reduction in swelling. I have been going to him for about 5 weeks and he sticks the needles in all the same places as the clinical trial except for one in my affected arm. He puts two needles in the shoulder on that side, but we agreed to avoid the affected arm. The arm doesn't look much different, but it is still too early to tell. It is definitely not worse, so we shall see!



    I go to my LE therapist on Monday and I am hoping for some good measurements.



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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited September 2012

    Hi Ladies,

    I had acupuncture for my truncal LE with very good results. My LE specialist said she would recommend only two acupuncturist because they understood LE. My pain after the first session improved tremedously. I went twice a week for two months. My LE got under control with a combo of MLD and acupuncture. So for me it was successful. I was fortunate, I went to a Chinese MD and he stressed this did not take the place of Western medicine.

    My second experience was not so good with my leg LE (complications from node removal from my hysto). I went to the second of the two acupuncturist, mostly do to convenience. Long story short, it was a disaster. The ND caused my good arm to weaken and be in pain for several weeks after one session. I couldn't afford to lose capacity of that arm so I quit. I will only go back to the Chinese MD. I would not consider anyone else.

    My recommendation be very, very careful. I would only go to practitioners that understand LE.

    Compression garments (Jovi leg pak) helped my leg LE more than the MLD & acupuncture.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012
    Bumping for rrs. Hi, rrs! How's it going? Long time, no see!Smile
    Binney
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  • rrs
    rrs Member Posts: 614
    edited October 2012

    Hi and thanks!!!!  Still researching and trying to figure out what's the best way to manage my LE.  I need to check back in on this board more often.

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012
    Betsy said :
    "My LE got under control with a combo of MLD and acupuncture."

    I am happy you had good results, but I personally would sill be cautious since I dont know how you can seperate the MLD from the acupuncture .  Who knows which one was helping really ?

    Best Wishes !
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