Occupational therapy and lymphatic massage

NancyJac
NancyJac Member Posts: 91
Has anybody had occupational rehab during or after treatment? My RO referred me because I am a high risk for lymphedema and for some lingering side effects (fluid pockets, peripheral neuropathy). I don't have lymphedema, so this is more of a preventive thing. The plan is to see the therapist 2X/week for a month or so for lymphatic massage. I'm so sick of daily medical appointments that once I finish my rads (8 more to go), I'm wondering if continuing the massages is worth the hassle of going to 2 more appointments every week.
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Comments

  • Rague
    Rague Member Posts: 3,653 Member
    Be sure you deal with
    Be sure you deal with someone who is a Certified Lymphedema Therapist in addition to being an OT or PT.

    My LE started while still on Taxol and progressed during rads. My LE guy is Certified and has his Masters in OT. Also try to find one who has expeerience with LE caused by mast. I am the second mast. LE that my guy had worked with and it probably would have been a bit 'easier' early on if he had seen more women. I am almost the complete opposite of the other woman he had worked with in life style and compression needs. That is not to say that he is not a very experienced LE Therapist but as he works for VA - in a relatively small facility he mainly deals with men.

    The LE therapist should teach you how to do MLD (Manual Lymphatic Drainage) yourself so without dealing with LE now it should only take a few appts til you can do it yourself (or someone you are close to can learn). Being fitted for a sleeve and glove would be a good idea for use when flying or exercise to help prevent it from developing. Getting the right sleeve/glove is often not easy. The wrong compression and fit can cause problems. For me, heavy compression causes more swelling so I have to have light compression. My hand is slightly 'webbed' so standard gloves do not fit and the 'standard OTS' sleeves do not come in the right size for my arm either either so all my garments are custom made.

    Winyan - The Power Within

    Susan
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I had a bilateral Jan 2011,
    I had a bilateral Jan 2011, I have adhesions (which very slightly limit my range of motion) and LE on the left side. I still occasionally see my PT who is also certified in LE. I would suggest that you go to a few appointments and see what you think. I am a big fan of massage and find the LE massage very soothing (it's a very light touch, not deep at all), you might enjoy it enough that it doesn't feel like another doctor appointment.

    Hugs,

    Linda
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    Think of it as an ounce of prevention
    being worth a pound of cure. I did indeed get lymphedema. My Occupational Therapists were Certified for Lymphedema like Rague said. Many of my health practices prior to lymphedema were actually good ones that would have either been neutral in lymphedema's onset or good preventative measures yet I still got the condition. I jumped on the condition right away and I have a feeling that doing so had an impact on my ability to reduce the swelling of lymphedema beyond the goals set for my by the treatment plan.

    I spend about 15 minutes once, or more often than not twice a day, taking care of my lymphedema. This seems like a small sacrifice to make to insure I can remain active and healthy. Once cancer re arranged my life for me I was not going to let lymphedema take away one more iota of my life by ignoring it.
  • eihtak
    eihtak Member Posts: 1,473 Member

    Think of it as an ounce of prevention
    being worth a pound of cure. I did indeed get lymphedema. My Occupational Therapists were Certified for Lymphedema like Rague said. Many of my health practices prior to lymphedema were actually good ones that would have either been neutral in lymphedema's onset or good preventative measures yet I still got the condition. I jumped on the condition right away and I have a feeling that doing so had an impact on my ability to reduce the swelling of lymphedema beyond the goals set for my by the treatment plan.

    I spend about 15 minutes once, or more often than not twice a day, taking care of my lymphedema. This seems like a small sacrifice to make to insure I can remain active and healthy. Once cancer re arranged my life for me I was not going to let lymphedema take away one more iota of my life by ignoring it.

    Great advice...
    Just love the last statement by laughs_a_lot.
  • Rague
    Rague Member Posts: 3,653 Member

    Think of it as an ounce of prevention
    being worth a pound of cure. I did indeed get lymphedema. My Occupational Therapists were Certified for Lymphedema like Rague said. Many of my health practices prior to lymphedema were actually good ones that would have either been neutral in lymphedema's onset or good preventative measures yet I still got the condition. I jumped on the condition right away and I have a feeling that doing so had an impact on my ability to reduce the swelling of lymphedema beyond the goals set for my by the treatment plan.

    I spend about 15 minutes once, or more often than not twice a day, taking care of my lymphedema. This seems like a small sacrifice to make to insure I can remain active and healthy. Once cancer re arranged my life for me I was not going to let lymphedema take away one more iota of my life by ignoring it.

    I was being a "good girl"
    I was being a "good girl" and not doing anything to 'encourage' LE when mine started. It was about 3 mths after surgery and during the last 1/3 rd of 12 weekly Taxol then got worse during rads. I am very good about wearing my day sleeve and glove, my night sleeve and doing my hour with my Flexi-Touch MLD machine daily. That's sort of where my being 'good' ends though. My theory is - I have LE now - it will never go away BUT I am alive and will do anything and everything I want to do - even if it agrivates the LE a bit. I'll deal with it by using my Flexi-Touch an extra time for a day or 2 or if absolutely have to - I'll wrap (haven't had to yet - Knock on wood) for a while. Actually I have the least problems during summer when I am the most active. I do a lot of riding and mowing.

    To me - life is to be lived to the utmost and enjoyed. There is no guarantee of tomorrow for anyone (or even the next minute) Y so live life.

    Winyan -The Power Within

    Susan
  • NancyJac
    NancyJac Member Posts: 91
    Rague said:

    Be sure you deal with
    Be sure you deal with someone who is a Certified Lymphedema Therapist in addition to being an OT or PT.

    My LE started while still on Taxol and progressed during rads. My LE guy is Certified and has his Masters in OT. Also try to find one who has expeerience with LE caused by mast. I am the second mast. LE that my guy had worked with and it probably would have been a bit 'easier' early on if he had seen more women. I am almost the complete opposite of the other woman he had worked with in life style and compression needs. That is not to say that he is not a very experienced LE Therapist but as he works for VA - in a relatively small facility he mainly deals with men.

    The LE therapist should teach you how to do MLD (Manual Lymphatic Drainage) yourself so without dealing with LE now it should only take a few appts til you can do it yourself (or someone you are close to can learn). Being fitted for a sleeve and glove would be a good idea for use when flying or exercise to help prevent it from developing. Getting the right sleeve/glove is often not easy. The wrong compression and fit can cause problems. For me, heavy compression causes more swelling so I have to have light compression. My hand is slightly 'webbed' so standard gloves do not fit and the 'standard OTS' sleeves do not come in the right size for my arm either either so all my garments are custom made.

    Winyan - The Power Within

    Susan

    Hi Susan
    My therapist is certified specifically for lymphedema. She did say that at some point she would be teaching me how to do MLD. Having a hard time imagining how I am going to do it on myself though because some of what she is doing is on my back and I wouldn't be able to reach. Since I don't actually have lymphedema, she isn't using compression garments but did mention a couple of scenarios where they might be useful as a preventative (heavy lifting and flying on an airplane).
  • NancyJac
    NancyJac Member Posts: 91

    Think of it as an ounce of prevention
    being worth a pound of cure. I did indeed get lymphedema. My Occupational Therapists were Certified for Lymphedema like Rague said. Many of my health practices prior to lymphedema were actually good ones that would have either been neutral in lymphedema's onset or good preventative measures yet I still got the condition. I jumped on the condition right away and I have a feeling that doing so had an impact on my ability to reduce the swelling of lymphedema beyond the goals set for my by the treatment plan.

    I spend about 15 minutes once, or more often than not twice a day, taking care of my lymphedema. This seems like a small sacrifice to make to insure I can remain active and healthy. Once cancer re arranged my life for me I was not going to let lymphedema take away one more iota of my life by ignoring it.

    You are absolutely right of course
    I am just so sick of all these different medical appointment that I am constantly having to arrange my life around.....I know....whine, whine, whine :-)
  • NancyJac
    NancyJac Member Posts: 91
    Rague said:

    I was being a "good girl"
    I was being a "good girl" and not doing anything to 'encourage' LE when mine started. It was about 3 mths after surgery and during the last 1/3 rd of 12 weekly Taxol then got worse during rads. I am very good about wearing my day sleeve and glove, my night sleeve and doing my hour with my Flexi-Touch MLD machine daily. That's sort of where my being 'good' ends though. My theory is - I have LE now - it will never go away BUT I am alive and will do anything and everything I want to do - even if it agrivates the LE a bit. I'll deal with it by using my Flexi-Touch an extra time for a day or 2 or if absolutely have to - I'll wrap (haven't had to yet - Knock on wood) for a while. Actually I have the least problems during summer when I am the most active. I do a lot of riding and mowing.

    To me - life is to be lived to the utmost and enjoyed. There is no guarantee of tomorrow for anyone (or even the next minute) Y so live life.

    Winyan -The Power Within

    Susan

    There is a machine for this?
    Now that sounds good to me....turn on the machine and the TV and just let 'er rip :-)
  • missrenee
    missrenee Member Posts: 2,136 Member
    NancyJac said:

    You are absolutely right of course
    I am just so sick of all these different medical appointment that I am constantly having to arrange my life around.....I know....whine, whine, whine :-)

    I have the machine, Nancy
    It's called a Flexi-Touch. It's like a gentle massage and I actually fall asleep while I'm doing it--it's so relaxing.

    For me, though, maybe because I only have swelling in my breast, I use Kinesio Taping. My lymph specialist taught my hubby how to apply it and it works wonders for me when I have swelling issues occasionally.

    I'm sure you'll find a treatment that works for you and isn't too inconvenient.

    Best of luck,

    Renee
  • Rague
    Rague Member Posts: 3,653 Member
    NancyJac said:

    There is a machine for this?
    Now that sounds good to me....turn on the machine and the TV and just let 'er rip :-)

    YUP!
    That's pretty much how it is. Yeah - you put it on, turn it on and relax however you want (TV/music/reading/whatever that is stationary - no going out for a jog)

    I have a Flexi-Touch (www.flexitouch.com) - there are other brands similar. Flexi-Touch is the only one my LE guy will order and ironically I got the first one he ever ordered - since has ordered quite a few.

    It is very basically a little computerized air compressor that sends air to different 'pockets' in garments in patterns. I have 3 parts- upper leg and abdomin, upper body and arm. It starts in leg to drain the healthy nodes. Works that area and then gradually progresses, after isolating each area, through the different sections to fingers. Then it reverses and starts at fingers and goes like a wave from one section to the next ending on leg. Mine runs for an hour to do the entire cycle but each machine is programed for what is needed by the individual in time and pressure levels - probably other stuff too but I'm not sure about other 'stuff'.

    It is a good idea to get measurements before LE raises it's ugly head. It is also a good way to keep track as to rather something is starting to happen before it is 'seen'/felt. Also remember that while some think that LE will always first show in swollen hand/fingers - not true. Mine first showed in elbow and is still the worst area. LE can also show on chest or underarm - anywhere nodes have been removed or damaged.

    You will not be able to reach all areas that your LE T can when doing MLD yourself but you will be able to do a very good job of it.

    Winyan - The Power Within

    Susan
  • Rague
    Rague Member Posts: 3,653 Member
    missrenee said:

    I have the machine, Nancy
    It's called a Flexi-Touch. It's like a gentle massage and I actually fall asleep while I'm doing it--it's so relaxing.

    For me, though, maybe because I only have swelling in my breast, I use Kinesio Taping. My lymph specialist taught my hubby how to apply it and it works wonders for me when I have swelling issues occasionally.

    I'm sure you'll find a treatment that works for you and isn't too inconvenient.

    Best of luck,

    Renee

    There are many different MLD machines
    Flexi-Touch is only one brand of MLD machines. It's the only one my LE guy will order but there are others. As I understand it it is one of the most (if not most) expensive ones. Not sure - I don't see prices on what I need.

    Kinesio tape is apparently great for some but not for me. After being told "I don't think it'll be good for you with your pressure level issues." for some time I finally got my LE to do it. He was right - not for me.

    We are each so unique!

    Winyan - The Power Within

    Susan
  • NancyJac
    NancyJac Member Posts: 91
    Rague said:

    YUP!
    That's pretty much how it is. Yeah - you put it on, turn it on and relax however you want (TV/music/reading/whatever that is stationary - no going out for a jog)

    I have a Flexi-Touch (www.flexitouch.com) - there are other brands similar. Flexi-Touch is the only one my LE guy will order and ironically I got the first one he ever ordered - since has ordered quite a few.

    It is very basically a little computerized air compressor that sends air to different 'pockets' in garments in patterns. I have 3 parts- upper leg and abdomin, upper body and arm. It starts in leg to drain the healthy nodes. Works that area and then gradually progresses, after isolating each area, through the different sections to fingers. Then it reverses and starts at fingers and goes like a wave from one section to the next ending on leg. Mine runs for an hour to do the entire cycle but each machine is programed for what is needed by the individual in time and pressure levels - probably other stuff too but I'm not sure about other 'stuff'.

    It is a good idea to get measurements before LE raises it's ugly head. It is also a good way to keep track as to rather something is starting to happen before it is 'seen'/felt. Also remember that while some think that LE will always first show in swollen hand/fingers - not true. Mine first showed in elbow and is still the worst area. LE can also show on chest or underarm - anywhere nodes have been removed or damaged.

    You will not be able to reach all areas that your LE T can when doing MLD yourself but you will be able to do a very good job of it.

    Winyan - The Power Within

    Susan

    Wow, how cool is that!
    Is this something that insurance pays for or is it out of pocket or on loan from the rehab center? She did take measurements the first time I went....measured like every 3 inches or so all the up both arms. Went for my second actual treatment today. Was pretty cool actually. Almost fell asleep on the table. She also added some exercises with pullies and stretch bands to help keep range of motion good and stuff flowing. I have a couple of spots along my scar lines from where the transplant of abdominal tissue was reattached to cover my chest wounds that are fluid pockets and she showed me today how to massage those to hopefully reduce the fluid build up.
  • NancyJac
    NancyJac Member Posts: 91
    missrenee said:

    I have the machine, Nancy
    It's called a Flexi-Touch. It's like a gentle massage and I actually fall asleep while I'm doing it--it's so relaxing.

    For me, though, maybe because I only have swelling in my breast, I use Kinesio Taping. My lymph specialist taught my hubby how to apply it and it works wonders for me when I have swelling issues occasionally.

    I'm sure you'll find a treatment that works for you and isn't too inconvenient.

    Best of luck,

    Renee

    hmmmmm....something else to look into
    Never heard of Kinesio Taping. Does it work on any king of edema, like swelling in feet and ankles?
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    NancyJac said:

    Hi Susan
    My therapist is certified specifically for lymphedema. She did say that at some point she would be teaching me how to do MLD. Having a hard time imagining how I am going to do it on myself though because some of what she is doing is on my back and I wouldn't be able to reach. Since I don't actually have lymphedema, she isn't using compression garments but did mention a couple of scenarios where they might be useful as a preventative (heavy lifting and flying on an airplane).

    the back
    I have a husband who is gone often. I do my back masage by using a pool noodle and putting it between my back and the side of the refrigerator. I roll the pool noodle in the direction and manner that my hubby's hand was supposed to go. It actually feels much better than having my husband do the back masage because it gets the entire back not just the lymphedema affected area. When I told this to the lymphedema therapist she thought that it was a good way to get the job done.

    In the future if you ever have to put on the night compression garment alone with the rolled up bandage material, do it laying down. The roll does not go far if it falls a few inches to the matress.

    My life has led me to do a lot without the help of others so I find ways to adapt.
  • missrenee
    missrenee Member Posts: 2,136 Member
    NancyJac said:

    hmmmmm....something else to look into
    Never heard of Kinesio Taping. Does it work on any king of edema, like swelling in feet and ankles?

    Yes, it works on all parts of the body
    However, only a certified Kinesio Taping practitioner can show you exactly how to use it. If it is not done correctly, it can cause more harm than good. Funnily enough, back in the day when I was still working, I worked for a small company that provided continuing education for occupational therapists, physical therapists and chiropractors wishing to learn the techniques of Kinesio Taping! Little did I know, I'd be using it one day. This is also used quite often for sports injuries--if you watch any pro sports, you can see many athletes with this on various parts of their bodies.

    Good luck.

    Hugs, Renee
  • NancyJac
    NancyJac Member Posts: 91
    missrenee said:

    Yes, it works on all parts of the body
    However, only a certified Kinesio Taping practitioner can show you exactly how to use it. If it is not done correctly, it can cause more harm than good. Funnily enough, back in the day when I was still working, I worked for a small company that provided continuing education for occupational therapists, physical therapists and chiropractors wishing to learn the techniques of Kinesio Taping! Little did I know, I'd be using it one day. This is also used quite often for sports injuries--if you watch any pro sports, you can see many athletes with this on various parts of their bodies.

    Good luck.

    Hugs, Renee

    hmmmmmmmmmmmmm
    Will have to ask my therapist about that. Might even do some good for my arthritic knee.
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    Yes I use kenesio tape
    Mostly for my back. I make an appointment with my daughter for application of this. She will also be teaching my grand daughter to do this. The other places I use it I can apply it myself. I had lymphedema in my breast arm back elbow and fingers. The kenisio tape takes the lymph fluid in my back accross from the non lymph node side to the other side of the back so that the armpit with the lymphnodes can move the lymph fluid from my body better. I do not have the MLD machine the other ladies are speaking of. I do it all mannually. I guess because I had done such a good job when in therapy and surpassed my limb reduction goals they figured I don't need it. I did however by a massager at Walgreens for use on my hand and my breast. It was on sale and only cost $14.99. It had 6-8 massage heads. I brought it in to the therapy session and they taught me how to use it. I also have a mini paint roller that I use on my hand when it gets bad.

    The reason I use the pool noodle as mentioned above is that they suggested a big paint roller accross my back for massage on my back but I couldn't figure out how I would be able to use that with my hubby gone. I was at the dollar store and saw the pool noodle. I cut it in half and placed it behind my back with the non lymhedema arm. (I guess I could do it with either arm) and roll away. It really makes for a good back massage.

    I am glad we are talking about these things as it would allow us to pick up other ideas that work well. Of course we would want to check with the therapist on them.
  • NancyJac
    NancyJac Member Posts: 91

    Yes I use kenesio tape
    Mostly for my back. I make an appointment with my daughter for application of this. She will also be teaching my grand daughter to do this. The other places I use it I can apply it myself. I had lymphedema in my breast arm back elbow and fingers. The kenisio tape takes the lymph fluid in my back accross from the non lymph node side to the other side of the back so that the armpit with the lymphnodes can move the lymph fluid from my body better. I do not have the MLD machine the other ladies are speaking of. I do it all mannually. I guess because I had done such a good job when in therapy and surpassed my limb reduction goals they figured I don't need it. I did however by a massager at Walgreens for use on my hand and my breast. It was on sale and only cost $14.99. It had 6-8 massage heads. I brought it in to the therapy session and they taught me how to use it. I also have a mini paint roller that I use on my hand when it gets bad.

    The reason I use the pool noodle as mentioned above is that they suggested a big paint roller accross my back for massage on my back but I couldn't figure out how I would be able to use that with my hubby gone. I was at the dollar store and saw the pool noodle. I cut it in half and placed it behind my back with the non lymhedema arm. (I guess I could do it with either arm) and roll away. It really makes for a good back massage.

    I am glad we are talking about these things as it would allow us to pick up other ideas that work well. Of course we would want to check with the therapist on them.

    wow...some really great tips
    wow...some really great tips there. Thanks much.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    NancyJac said:

    You are absolutely right of course
    I am just so sick of all these different medical appointment that I am constantly having to arrange my life around.....I know....whine, whine, whine :-)

    Wishing you good luck Nancy
    Wishing you good luck Nancy with your therapy! Let us know how you do!


    Hugs, Jan
  • debsweb18
    debsweb18 Member Posts: 191 Member
    I recommend it. I went after
    I recommend it. I went after my radiation treatments were over. I was lucky and found a therapist specializing in Lymphedema a mile from my office. I went for range of motion but got quite an education about Lymphedema. The only thing I knew before was not to get blood pressure or blood taken from my right arm. I've never had it, but I learned how to prevent it.