My heart goes out to you. I only had 3 removed and am having lots of lymphedema issues. The best advise I can give you is to keep seeking out a good massage therapist that has knowledge of lymphatic massage. I go every other week and do what I can in between. I will never stop. It is the best thing for me. I have also tried and ,when it’s not too hot , use compression. It does help. I hope you have a major turn around and find the help you need.
@jkh before I log off, I meant to ask you… do they have something for lymphedema that can drain the fluid out of your body? Like a pump/or suction? (Other than a massage… something that drains the fluid out?
@jkh before I log off, I meant to ask you… do they have something for lymphedema that can drain the fluid out of your body? Like a pump/or suction? (Other than a massage… something that drains the fluid out?
@gerjuanna I am not aware of anything but don’t be shy to ask. The massage for lymphedema is very light touch as our lymph system is located so near to the surface of the skin.
Hello, I was diagnosed with breast cancer in 2020. They took 16 lymph nodes from me! My arm is swelling up and I’m feeling really bad. Starting to cry every day about my precious body… I would have NEVER recommended that amount of lymph nodes to be removed from my body… I know how hard I’ve worked to keep a healthy body, Not perfect but I try & struggle daily with being healthy.
Is there any hope for lymphedema????
I feel like fluids are invading my body.
I’m so upset as I type, tears are not stopping. I feel so violated also disgusted. This feeling is getting stronger.
Add castor oil poultice to area. I have breast cancer and a broken collar bone. When nodes were removed that arm wasn't doing as well as unbroken collar bone. So I made up castor oil on soft absorbing cloth and as I watched a movie it did it's job.
I hope it helps like it did me.
@jkh before I log off, I meant to ask you… do they have something for lymphedema that can drain the fluid out of your body? Like a pump/or suction? (Other than a massage… something that drains the fluid out?
There are surgeries that specifically address the flow of lymph fluid through the lymph nodes and also sometimes by connecting them to blood vessels to restore flow. Long before you’re even considered a candidate for this, you have to be evaluated and they will determine that you either have a blockage which might be able to be addressed Surgically by implanting a stent between the lymph node and a blood vessel, or you have lost lymph function and a transfer of lymph nodes from one part of your body into the area of your body affected by Lymphedema can be attempted. The surgery are often not covered by insurance, considered somewhat experimental still, and is always the fact, there is no guarantee that they will solve the problem. What I discovered the missing link to be in my evaluation and treatment of lymphedema in my right upper extremity. Was that a referral. Her medical evaluation of lymphatic flow was never considered until I researched it on my own, discovered that these options existed, and called a facility where they were provided on my own to find out how I would go about scheduling a consultation. I think that’s an excusable and I think it happens more often than we realize. It is my personal belief that any of us who feel we are not benefiting either at all or well enough from established procedures, massage, garments, pumping, etc., should receive a referral For evaluation of lymphatic flow Only then will you know exactly what it is that you’re dealing with. You will also know if surgery might be an option and how to proceed down that path. I felt that in my case the patient was the one asking the right questions and seeking the right information. The “professionals “were busy, suggesting, lose weight, exercise, more, are you wearing your garment all the time, are you doing MLD? It was my experience that when I answered affirmatively to all of the above, they just didn’t believe me. Because if they had believed me, they would’ve thought for a moment and said, maybe this is a surgical patient. But that didn’t happen in my case, and my searching for greater help with my Lymphedema was completely self driven. It shouldn’t be that way.
There are surgeries that specifically address the flow of lymph fluid through the lymph nodes and also sometimes by connecting them to blood vessels to restore flow. Long before you’re even considered a candidate for this, you have to be evaluated and they will determine that you either have a blockage which might be able to be addressed Surgically by implanting a stent between the lymph node and a blood vessel, or you have lost lymph function and a transfer of lymph nodes from one part of your body into the area of your body affected by Lymphedema can be attempted. The surgery are often not covered by insurance, considered somewhat experimental still, and is always the fact, there is no guarantee that they will solve the problem. What I discovered the missing link to be in my evaluation and treatment of lymphedema in my right upper extremity. Was that a referral. Her medical evaluation of lymphatic flow was never considered until I researched it on my own, discovered that these options existed, and called a facility where they were provided on my own to find out how I would go about scheduling a consultation. I think that’s an excusable and I think it happens more often than we realize. It is my personal belief that any of us who feel we are not benefiting either at all or well enough from established procedures, massage, garments, pumping, etc., should receive a referral For evaluation of lymphatic flow Only then will you know exactly what it is that you’re dealing with. You will also know if surgery might be an option and how to proceed down that path. I felt that in my case the patient was the one asking the right questions and seeking the right information. The “professionals “were busy, suggesting, lose weight, exercise, more, are you wearing your garment all the time, are you doing MLD? It was my experience that when I answered affirmatively to all of the above, they just didn’t believe me. Because if they had believed me, they would’ve thought for a moment and said, maybe this is a surgical patient. But that didn’t happen in my case, and my searching for greater help with my Lymphedema was completely self driven. It shouldn’t be that way.
There are surgeries that specifically address the flow of lymph fluid through the lymph nodes and also sometimes by connecting them to blood vessels to restore flow. Long before you’re even considered a candidate for this, you have to be evaluated and they will determine that you either have a blockage which might be able to be addressed Surgically by implanting a stent between the lymph node and a blood vessel, or you have lost lymph function and a transfer of lymph nodes from one part of your body into the area of your body affected by Lymphedema can be attempted. The surgery are often not covered by insurance, considered somewhat experimental still, and is always the fact, there is no guarantee that they will solve the problem. What I discovered the missing link to be in my evaluation and treatment of lymphedema in my right upper extremity. Was that a referral. Her medical evaluation of lymphatic flow was never considered until I researched it on my own, discovered that these options existed, and called a facility where they were provided on my own to find out how I would go about scheduling a consultation. I think that’s an excusable and I think it happens more often than we realize. It is my personal belief that any of us who feel we are not benefiting either at all or well enough from established procedures, massage, garments, pumping, etc., should receive a referral For evaluation of lymphatic flow Only then will you know exactly what it is that you’re dealing with. You will also know if surgery might be an option and how to proceed down that path. I felt that in my case the patient was the one asking the right questions and seeking the right information. The “professionals “were busy, suggesting, lose weight, exercise, more, are you wearing your garment all the time, are you doing MLD? It was my experience that when I answered affirmatively to all of the above, they just didn’t believe me. Because if they had believed me, they would’ve thought for a moment and said, maybe this is a surgical patient. But that didn’t happen in my case, and my searching for greater help with my Lymphedema was completely self driven. It shouldn’t be that way.
I have had the LNT surgery completed 3 1/2 years ago. It was successful and reestablished some degree of lymphatic function in a right arm that had none. I am on the list now for the lesser surgery, placing a stent in the area of the wrist and possibly in the upper arm area where they believe there are blockages. There are so many people in need of these surgeries and so few surgeons specifically trying to do them that my waiting list for the second surgery is 14 months long. However, if I get another episode of cellulitis, it will bump me earlier. Lymphedema is truly the gift that keeps on giving for some of us.
There is current research to create an artificial lymph node. John Hopkins is working on one, but their focus is on the immune function of a lymph node not the movement/removal of fluid. Perhaps the ability to extravasate fluid will be the next step. https://www.sciencedaily.com/releases/2024/06/240606152135.htm
There is an EU-funded artificial lymph node, LymphoDrain, that seems promising, at least in the information provided. Although it’s difficult to tell hype from actual outcomes until enough clinical trials have been completed. It appears there was a study that ran 2019-2023, so maybe we’ll be hearing more about it soon. https://cordis.europa.eu/article/id/444089-an-implantable-device-treats-lymphedema#:~:text=It%20comprises%20an%20under%2Dthe,by%20the%20strongest%20regulatory%20constraints
I believe there are two forces that push medical innovation, one is altruism the other is money (either money making, or money saving). Altruistic research still requires money, so addressing how lymphedema fits into that equation may help drive innovation. Lots of funding is driven by insurance companies trying to save money. Health insurance companies want us to remain employable and maintain independence- it’s just cheaper for them if we do.
When you discuss your symptoms and side effects with your doctor it might help push research if you’d put an emphasis on how the fluid retention is affecting your ability to function at work 100%, and how it affects your ability to care for yourself.
We need surveys and questionnaires that capture this info. Data from these formats is used in the statistical analysis by researchers, and if the right question is not asked, the problem is not revealed. Questions like: Lymphedema affects my work output by what percent, lymphedema affects my ability to cook healthy food (skill slicing/dicing fresh vegs, time needed to create healthy which means arm is not elevated, etc), Does lymphadema affect your dressing routine? Driving time? Physical work requirements? Weight lifting exercises?
Can WE make a difference in where research funding goes? Quantifying the impact of lymphedema in terms that impacts funding might help. Creating a questionnaire would be a great project for a graduate student at a university - I’m not sure how to accomplish this but maybe they need a push by us talking about it.
I developed lymphedema a year after going through breast cancer treatment I have tried compression garments, the pumping machine, PT and lymphedema massage. Another option I have is to do surgery. Has anyone gone through this? I don’t wanna go onto the knife again and wondered if I could just live with us as it doesn’t stop me from doing things that I like.
I developed lymphedema a year after going through breast cancer treatment I have tried compression garments, the pumping machine, PT and lymphedema massage. Another option I have is to do surgery. Has anyone gone through this? I don’t wanna go onto the knife again and wondered if I could just live with us as it doesn’t stop me from doing things that I like.
Hello djewison:
You may be interested in the work being done by Dr. Stanley Rockson at Stanford University. He is researching a drug that will prevent/eliminate lymphedema. You might search 'stanley rockson lymphedema' and among other results, you'll find some very informative YouTube videos that explain what he and his team are working on and some impressive early results.
Here's wishing you the best of luck!
@jkh before I log off, I meant to ask you… do they have something for lymphedema that can drain the fluid out of your body? Like a pump/or suction? (Other than a massage… something that drains the fluid out?
@gerjuanna I am not aware of anything but don’t be shy to ask. The massage for lymphedema is very light touch as our lymph system is located so near to the surface of the skin.
Add castor oil poultice to area. I have breast cancer and a broken collar bone. When nodes were removed that arm wasn't doing as well as unbroken collar bone. So I made up castor oil on soft absorbing cloth and as I watched a movie it did it's job.
I hope it helps like it did me.
There are surgeries that specifically address the flow of lymph fluid through the lymph nodes and also sometimes by connecting them to blood vessels to restore flow. Long before you’re even considered a candidate for this, you have to be evaluated and they will determine that you either have a blockage which might be able to be addressed Surgically by implanting a stent between the lymph node and a blood vessel, or you have lost lymph function and a transfer of lymph nodes from one part of your body into the area of your body affected by Lymphedema can be attempted. The surgery are often not covered by insurance, considered somewhat experimental still, and is always the fact, there is no guarantee that they will solve the problem. What I discovered the missing link to be in my evaluation and treatment of lymphedema in my right upper extremity. Was that a referral. Her medical evaluation of lymphatic flow was never considered until I researched it on my own, discovered that these options existed, and called a facility where they were provided on my own to find out how I would go about scheduling a consultation. I think that’s an excusable and I think it happens more often than we realize. It is my personal belief that any of us who feel we are not benefiting either at all or well enough from established procedures, massage, garments, pumping, etc., should receive a referral For evaluation of lymphatic flow Only then will you know exactly what it is that you’re dealing with. You will also know if surgery might be an option and how to proceed down that path. I felt that in my case the patient was the one asking the right questions and seeking the right information. The “professionals “were busy, suggesting, lose weight, exercise, more, are you wearing your garment all the time, are you doing MLD? It was my experience that when I answered affirmatively to all of the above, they just didn’t believe me. Because if they had believed me, they would’ve thought for a moment and said, maybe this is a surgical patient. But that didn’t happen in my case, and my searching for greater help with my Lymphedema was completely self driven. It shouldn’t be that way.
Exactly
Did you have the surgery? Was it helpful?
I have had the LNT surgery completed 3 1/2 years ago. It was successful and reestablished some degree of lymphatic function in a right arm that had none. I am on the list now for the lesser surgery, placing a stent in the area of the wrist and possibly in the upper arm area where they believe there are blockages. There are so many people in need of these surgeries and so few surgeons specifically trying to do them that my waiting list for the second surgery is 14 months long. However, if I get another episode of cellulitis, it will bump me earlier. Lymphedema is truly the gift that keeps on giving for some of us.
There is current research to create an artificial lymph node. John Hopkins is working on one, but their focus is on the immune function of a lymph node not the movement/removal of fluid. Perhaps the ability to extravasate fluid will be the next step.
https://www.sciencedaily.com/releases/2024/06/240606152135.htm
There is an EU-funded artificial lymph node, LymphoDrain, that seems promising, at least in the information provided. Although it’s difficult to tell hype from actual outcomes until enough clinical trials have been completed. It appears there was a study that ran 2019-2023, so maybe we’ll be hearing more about it soon.
https://cordis.europa.eu/article/id/444089-an-implantable-device-treats-lymphedema#:~:text=It%20comprises%20an%20under%2Dthe,by%20the%20strongest%20regulatory%20constraints
I believe there are two forces that push medical innovation, one is altruism the other is money (either money making, or money saving). Altruistic research still requires money, so addressing how lymphedema fits into that equation may help drive innovation. Lots of funding is driven by insurance companies trying to save money. Health insurance companies want us to remain employable and maintain independence- it’s just cheaper for them if we do.
When you discuss your symptoms and side effects with your doctor it might help push research if you’d put an emphasis on how the fluid retention is affecting your ability to function at work 100%, and how it affects your ability to care for yourself.
We need surveys and questionnaires that capture this info. Data from these formats is used in the statistical analysis by researchers, and if the right question is not asked, the problem is not revealed. Questions like: Lymphedema affects my work output by what percent, lymphedema affects my ability to cook healthy food (skill slicing/dicing fresh vegs, time needed to create healthy which means arm is not elevated, etc), Does lymphadema affect your dressing routine? Driving time? Physical work requirements? Weight lifting exercises?
Can WE make a difference in where research funding goes? Quantifying the impact of lymphedema in terms that impacts funding might help. Creating a questionnaire would be a great project for a graduate student at a university - I’m not sure how to accomplish this but maybe they need a push by us talking about it.
I developed lymphedema a year after going through breast cancer treatment I have tried compression garments, the pumping machine, PT and lymphedema massage. Another option I have is to do surgery. Has anyone gone through this? I don’t wanna go onto the knife again and wondered if I could just live with us as it doesn’t stop me from doing things that I like.
Hello djewison:
You may be interested in the work being done by Dr. Stanley Rockson at Stanford University. He is researching a drug that will prevent/eliminate lymphedema. You might search 'stanley rockson lymphedema' and among other results, you'll find some very informative YouTube videos that explain what he and his team are working on and some impressive early results.
Here's wishing you the best of luck!