Lymphedema Specialist
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Lymphedema Specialist

› Forums › General Melanoma Community › Lymphedema Specialist

  • Post
    • January 2, 2017 at 5:43 am
    Aloha14
    Participant

    Has anyone been to one, and did it help?

Viewing 14 reply threads
  • Replies
      • January 2, 2017 at 11:43 am
      momof4boys
      Participant
      Yes, I saw one for quite awhile and it is a must if you have excess fluid and think you have lymphadema. You need to be educated on it and they will help you with that
      • January 2, 2017 at 11:43 am
      momof4boys
      Participant
      Yes, I saw one for quite awhile and it is a must if you have excess fluid and think you have lymphadema. You need to be educated on it and they will help you with that
      • January 2, 2017 at 11:43 am
      momof4boys
      Participant
      Yes, I saw one for quite awhile and it is a must if you have excess fluid and think you have lymphadema. You need to be educated on it and they will help you with that
      • January 2, 2017 at 10:52 pm
      Mark_DC
      Participant

      I think its a good idea. Did not completely work for me as the stocking over my scar caused rash and irritation during the summer. Am now wearing light stocking below my scar. I am no medical expert but i think they can helo improve lymph circulation, without this infections may take more time to heal.once my scar heals more plus my other problems go away, then i will do more on this. You can get overloaded with appointments, but i think its good to do this

      • January 2, 2017 at 10:52 pm
      Mark_DC
      Participant

      I think its a good idea. Did not completely work for me as the stocking over my scar caused rash and irritation during the summer. Am now wearing light stocking below my scar. I am no medical expert but i think they can helo improve lymph circulation, without this infections may take more time to heal.once my scar heals more plus my other problems go away, then i will do more on this. You can get overloaded with appointments, but i think its good to do this

      • January 2, 2017 at 10:52 pm
      Mark_DC
      Participant

      I think its a good idea. Did not completely work for me as the stocking over my scar caused rash and irritation during the summer. Am now wearing light stocking below my scar. I am no medical expert but i think they can helo improve lymph circulation, without this infections may take more time to heal.once my scar heals more plus my other problems go away, then i will do more on this. You can get overloaded with appointments, but i think its good to do this

      • January 2, 2017 at 11:51 pm
      Aloha14
      Participant

      Thanks for the replies. I am going to try PT first as there's no specialists in my area. The biggest seroma is really causing me a lot of pain and isn't getting smaller 3 1/2 weeks post surgery. So I'm wearing bicycling shorts under my clothes even though it's probably not the correct compression but it seems to help with the pain. Better than walking around holding the inside of my leg. 

      • January 2, 2017 at 11:51 pm
      Aloha14
      Participant

      Thanks for the replies. I am going to try PT first as there's no specialists in my area. The biggest seroma is really causing me a lot of pain and isn't getting smaller 3 1/2 weeks post surgery. So I'm wearing bicycling shorts under my clothes even though it's probably not the correct compression but it seems to help with the pain. Better than walking around holding the inside of my leg. 

      • January 2, 2017 at 11:51 pm
      Aloha14
      Participant

      Thanks for the replies. I am going to try PT first as there's no specialists in my area. The biggest seroma is really causing me a lot of pain and isn't getting smaller 3 1/2 weeks post surgery. So I'm wearing bicycling shorts under my clothes even though it's probably not the correct compression but it seems to help with the pain. Better than walking around holding the inside of my leg. 

      • January 3, 2017 at 11:04 am
      debwray
      Participant

      Hi,

      Hard to tell how much the lymph specialist  helped as you don't know how bad things would be without their help. Was given made to measure compression garments ( -one legged tight thing ) but found it constantly slipped down and didn't help with the exzema rash and hard to get compression on groin seroma area

      .Later given cotton compression thigh highs- to help with rash as easier to wear.  Things that helped me most were losing weight ( largely due to nausea …rather than will power ) and getting a chronic infection in the bad leg diagnosed and treated after 5 very long months, two hospital admissions and lots of doctor visits GP and melanoma specialists sessions whilst on keytruda v placebo stage 3 trial… negative aspiration from knee wrong footed medics – and think they thought problem was keytruda /knee replacement related.  So my experience is far from typical and was after a complete lymph node dissection.

      You are probably still producing extra lymph in response to the trauma of the lymph node biopsy and so things may still settle down with the firm tissue-over the next few weeks. However, awareness might mean you can take preventative measures to head off possible future problems- like using compression socks on flights or long car journeys- making sure you act quickly and get antibiotics if you get cellulitis etc etc

      My specialist is very good at monitoring changes in limb size but did not offer intensive massage due to fear of making the knee pain problems worse . Am due six monthly review shortly. Have found my specialist professional and sympathethic .She has adapted  prescription compression garments to the difficulties I have encountered wearing them. Not sure how easy it would be for you to access a specialist or how costly. The made to measure stuff is pretty expensive but was provided via the NHS for me in the UK. In theory your other nodes should be able to take up the slack . Even though mine is much improved 12 months after surgery  I still have a firmer area below the dissection scar..but overall things are much better.  Scars seem to form a barrier that the lymph can not get through so the massage strokes on your thighs  need to sweep it out towards your side and hips so it can work its way back towards your collar bones and back into the circulation.

      Hope your problems settle soon

      Deb

       

       

       

       

       

       

       

       

        • January 3, 2017 at 6:46 pm
        Aloha14
        Participant

        Thanks Deb for the information and experience. I'm just getting frustrated as the surgeon told me the more active I am, then the fluid will drain. I'm back to my workouts at the gym so working out enough to sweat.

        I'll ask my surgeon about a referral to a lymphedema specialist somewhere in my area, and about wearing a compression garmet. I'll spedifically ask about wearing one when I fly, and on the drive to/from the doctor as it's a long drive. The surgeon just doesn't seem to be worried about my concerns so maybe it's time for an email cc to the medical director (the boss). I just don't want to have this big lump and all the scar tissue be permanent. I'm at the correct weight. I'll look up cellulitis and see what it is. 

        • January 3, 2017 at 9:34 pm
        debwray
        Participant

        The surgeon is basically right- your blood circulation is pumped by the heart- but the lymph flow   is regulated by muscle contractions, so the more you walk and move.. the more the lymph flows but it does all have to "go uphill" from your ankle on. You are still early days really and it does take time for your body to reabsorb the seromas and in the bigger scheme of things the surgeons are not worried by these bothersome features as they know it will take time.If you are active and at the correct weight it is likely this will resolve sooner than otherwise…

        Compression garments might basically help the lymph circulation when it is compromised or stressed due to pressurisation and lack of movement on flights etc when you might otherwise suffer from swollen ankles given that you have had nodes removed.

        Cellulitis is when you get an infection in the skin- it is more common if you have lymphoedema as the protein rich fluid is a breeding ground for bacteria- the skin can go red and hot and the infection requires antibiotic treatment but cellulitis attacks can then further damage the lymph system. 

        I am not intending to scare you as the most probable outcome is that this will resolve on its own with time as the body does find new routes and the capacity for lymph flow on the new routes increases over time.

        Best wishes

        Deb

         

        • January 3, 2017 at 9:34 pm
        debwray
        Participant

        The surgeon is basically right- your blood circulation is pumped by the heart- but the lymph flow   is regulated by muscle contractions, so the more you walk and move.. the more the lymph flows but it does all have to "go uphill" from your ankle on. You are still early days really and it does take time for your body to reabsorb the seromas and in the bigger scheme of things the surgeons are not worried by these bothersome features as they know it will take time.If you are active and at the correct weight it is likely this will resolve sooner than otherwise…

        Compression garments might basically help the lymph circulation when it is compromised or stressed due to pressurisation and lack of movement on flights etc when you might otherwise suffer from swollen ankles given that you have had nodes removed.

        Cellulitis is when you get an infection in the skin- it is more common if you have lymphoedema as the protein rich fluid is a breeding ground for bacteria- the skin can go red and hot and the infection requires antibiotic treatment but cellulitis attacks can then further damage the lymph system. 

        I am not intending to scare you as the most probable outcome is that this will resolve on its own with time as the body does find new routes and the capacity for lymph flow on the new routes increases over time.

        Best wishes

        Deb

         

        • January 3, 2017 at 9:34 pm
        debwray
        Participant

        The surgeon is basically right- your blood circulation is pumped by the heart- but the lymph flow   is regulated by muscle contractions, so the more you walk and move.. the more the lymph flows but it does all have to "go uphill" from your ankle on. You are still early days really and it does take time for your body to reabsorb the seromas and in the bigger scheme of things the surgeons are not worried by these bothersome features as they know it will take time.If you are active and at the correct weight it is likely this will resolve sooner than otherwise…

        Compression garments might basically help the lymph circulation when it is compromised or stressed due to pressurisation and lack of movement on flights etc when you might otherwise suffer from swollen ankles given that you have had nodes removed.

        Cellulitis is when you get an infection in the skin- it is more common if you have lymphoedema as the protein rich fluid is a breeding ground for bacteria- the skin can go red and hot and the infection requires antibiotic treatment but cellulitis attacks can then further damage the lymph system. 

        I am not intending to scare you as the most probable outcome is that this will resolve on its own with time as the body does find new routes and the capacity for lymph flow on the new routes increases over time.

        Best wishes

        Deb

         

        • January 3, 2017 at 6:46 pm
        Aloha14
        Participant

        Thanks Deb for the information and experience. I'm just getting frustrated as the surgeon told me the more active I am, then the fluid will drain. I'm back to my workouts at the gym so working out enough to sweat.

        I'll ask my surgeon about a referral to a lymphedema specialist somewhere in my area, and about wearing a compression garmet. I'll spedifically ask about wearing one when I fly, and on the drive to/from the doctor as it's a long drive. The surgeon just doesn't seem to be worried about my concerns so maybe it's time for an email cc to the medical director (the boss). I just don't want to have this big lump and all the scar tissue be permanent. I'm at the correct weight. I'll look up cellulitis and see what it is. 

        • January 3, 2017 at 6:46 pm
        Aloha14
        Participant

        Thanks Deb for the information and experience. I'm just getting frustrated as the surgeon told me the more active I am, then the fluid will drain. I'm back to my workouts at the gym so working out enough to sweat.

        I'll ask my surgeon about a referral to a lymphedema specialist somewhere in my area, and about wearing a compression garmet. I'll spedifically ask about wearing one when I fly, and on the drive to/from the doctor as it's a long drive. The surgeon just doesn't seem to be worried about my concerns so maybe it's time for an email cc to the medical director (the boss). I just don't want to have this big lump and all the scar tissue be permanent. I'm at the correct weight. I'll look up cellulitis and see what it is. 

      • January 3, 2017 at 11:04 am
      debwray
      Participant

      Hi,

      Hard to tell how much the lymph specialist  helped as you don't know how bad things would be without their help. Was given made to measure compression garments ( -one legged tight thing ) but found it constantly slipped down and didn't help with the exzema rash and hard to get compression on groin seroma area

      .Later given cotton compression thigh highs- to help with rash as easier to wear.  Things that helped me most were losing weight ( largely due to nausea …rather than will power ) and getting a chronic infection in the bad leg diagnosed and treated after 5 very long months, two hospital admissions and lots of doctor visits GP and melanoma specialists sessions whilst on keytruda v placebo stage 3 trial… negative aspiration from knee wrong footed medics – and think they thought problem was keytruda /knee replacement related.  So my experience is far from typical and was after a complete lymph node dissection.

      You are probably still producing extra lymph in response to the trauma of the lymph node biopsy and so things may still settle down with the firm tissue-over the next few weeks. However, awareness might mean you can take preventative measures to head off possible future problems- like using compression socks on flights or long car journeys- making sure you act quickly and get antibiotics if you get cellulitis etc etc

      My specialist is very good at monitoring changes in limb size but did not offer intensive massage due to fear of making the knee pain problems worse . Am due six monthly review shortly. Have found my specialist professional and sympathethic .She has adapted  prescription compression garments to the difficulties I have encountered wearing them. Not sure how easy it would be for you to access a specialist or how costly. The made to measure stuff is pretty expensive but was provided via the NHS for me in the UK. In theory your other nodes should be able to take up the slack . Even though mine is much improved 12 months after surgery  I still have a firmer area below the dissection scar..but overall things are much better.  Scars seem to form a barrier that the lymph can not get through so the massage strokes on your thighs  need to sweep it out towards your side and hips so it can work its way back towards your collar bones and back into the circulation.

      Hope your problems settle soon

      Deb

       

       

       

       

       

       

       

       

      • January 3, 2017 at 11:04 am
      debwray
      Participant

      Hi,

      Hard to tell how much the lymph specialist  helped as you don't know how bad things would be without their help. Was given made to measure compression garments ( -one legged tight thing ) but found it constantly slipped down and didn't help with the exzema rash and hard to get compression on groin seroma area

      .Later given cotton compression thigh highs- to help with rash as easier to wear.  Things that helped me most were losing weight ( largely due to nausea …rather than will power ) and getting a chronic infection in the bad leg diagnosed and treated after 5 very long months, two hospital admissions and lots of doctor visits GP and melanoma specialists sessions whilst on keytruda v placebo stage 3 trial… negative aspiration from knee wrong footed medics – and think they thought problem was keytruda /knee replacement related.  So my experience is far from typical and was after a complete lymph node dissection.

      You are probably still producing extra lymph in response to the trauma of the lymph node biopsy and so things may still settle down with the firm tissue-over the next few weeks. However, awareness might mean you can take preventative measures to head off possible future problems- like using compression socks on flights or long car journeys- making sure you act quickly and get antibiotics if you get cellulitis etc etc

      My specialist is very good at monitoring changes in limb size but did not offer intensive massage due to fear of making the knee pain problems worse . Am due six monthly review shortly. Have found my specialist professional and sympathethic .She has adapted  prescription compression garments to the difficulties I have encountered wearing them. Not sure how easy it would be for you to access a specialist or how costly. The made to measure stuff is pretty expensive but was provided via the NHS for me in the UK. In theory your other nodes should be able to take up the slack . Even though mine is much improved 12 months after surgery  I still have a firmer area below the dissection scar..but overall things are much better.  Scars seem to form a barrier that the lymph can not get through so the massage strokes on your thighs  need to sweep it out towards your side and hips so it can work its way back towards your collar bones and back into the circulation.

      Hope your problems settle soon

      Deb

       

       

       

       

       

       

       

       

      • January 3, 2017 at 9:08 pm
      Bradley75
      Participant

      I have been seeing one off and on since my CLND back in 2015.  She has been very helpful with the swelling and how to deal with it.  I had some trouble spots in the right axilla that never seemed to drain.  I developed cellulitus back in October and spent 5 days in the hospital dealing with that.  Through talking to people and my own research, I decided to get a lymphedema pump.  Insurance covered it so the price was right.  The pump was the answer for me.  All the swelling is way down to the point that it is no longer noticeable.,  The pump really helped the scar as well.  I pump once a day, at home and wear my compression sleeve for all waking hours.  It has become extremely manageable since I got the pump.

      Brad

      • January 3, 2017 at 9:08 pm
      Bradley75
      Participant

      I have been seeing one off and on since my CLND back in 2015.  She has been very helpful with the swelling and how to deal with it.  I had some trouble spots in the right axilla that never seemed to drain.  I developed cellulitus back in October and spent 5 days in the hospital dealing with that.  Through talking to people and my own research, I decided to get a lymphedema pump.  Insurance covered it so the price was right.  The pump was the answer for me.  All the swelling is way down to the point that it is no longer noticeable.,  The pump really helped the scar as well.  I pump once a day, at home and wear my compression sleeve for all waking hours.  It has become extremely manageable since I got the pump.

      Brad

      • January 3, 2017 at 9:08 pm
      Bradley75
      Participant

      I have been seeing one off and on since my CLND back in 2015.  She has been very helpful with the swelling and how to deal with it.  I had some trouble spots in the right axilla that never seemed to drain.  I developed cellulitus back in October and spent 5 days in the hospital dealing with that.  Through talking to people and my own research, I decided to get a lymphedema pump.  Insurance covered it so the price was right.  The pump was the answer for me.  All the swelling is way down to the point that it is no longer noticeable.,  The pump really helped the scar as well.  I pump once a day, at home and wear my compression sleeve for all waking hours.  It has become extremely manageable since I got the pump.

      Brad

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