Frustrated with surgery

Ann,

I had a LND of my groin about 4 yrs ago.  I went to MD Anderson and they have a department for lymphedema.  Also, my local hospital has a dept for lymphedema.  Both have been very helpful.  There are message techniques they can teach you as well as compression tights.  My leg has some numbness on the inner thigh.  I guess I have gotten use to it (it's been 4 yrs).  I don't know if this is helpful info….just know you are not alone:)  Let me know if I can help….

Courtney

Ann,

I had a LND of my groin about 4 yrs ago.  I went to MD Anderson and they have a department for lymphedema.  Also, my local hospital has a dept for lymphedema.  Both have been very helpful.  There are message techniques they can teach you as well as compression tights.  My leg has some numbness on the inner thigh.  I guess I have gotten use to it (it's been 4 yrs).  I don't know if this is helpful info….just know you are not alone:)  Let me know if I can help….

Courtney

Ann,

I had a LND of my groin about 4 yrs ago.  I went to MD Anderson and they have a department for lymphedema.  Also, my local hospital has a dept for lymphedema.  Both have been very helpful.  There are message techniques they can teach you as well as compression tights.  My leg has some numbness on the inner thigh.  I guess I have gotten use to it (it's been 4 yrs).  I don't know if this is helpful info….just know you are not alone:)  Let me know if I can help….

Courtney

Hi Ann,

 I have lymphedema in the right arm. It developed more than a year after my surgery. An orthopedist specializes in muscles, tendons, etc but you should have it examined by a lymphedema specialist. That's where I went. She taught me how to massage my body and arm to stimulate the flow of the lymphatic fluid. She also taught me exercises and showed me how to wrap my arm when I needed to take the swelling down. You may need to be fitted for a compression sleeve. My specialist also took measurements of different segments of the arm with the goal that the measurements would decrease.

 The question is: Were you diagnosed with lymphedema or do you think it's lymphedema? The missing lymph nodes can certainly be contributing to your condition.

 I was numb in the armpit and before I was discharged from the hospital I was given instructions on what exercises to do to get the range of motion back. The numbness went away over a period of months.

 Your doctor's attitude is unfortunate. Your primary doctor may need to refer you to a lymphedema specialist.

 Hope this helps and God Bless,

 Jim M.

Hi Ann,

 I have lymphedema in the right arm. It developed more than a year after my surgery. An orthopedist specializes in muscles, tendons, etc but you should have it examined by a lymphedema specialist. That's where I went. She taught me how to massage my body and arm to stimulate the flow of the lymphatic fluid. She also taught me exercises and showed me how to wrap my arm when I needed to take the swelling down. You may need to be fitted for a compression sleeve. My specialist also took measurements of different segments of the arm with the goal that the measurements would decrease.

 The question is: Were you diagnosed with lymphedema or do you think it's lymphedema? The missing lymph nodes can certainly be contributing to your condition.

 I was numb in the armpit and before I was discharged from the hospital I was given instructions on what exercises to do to get the range of motion back. The numbness went away over a period of months.

 Your doctor's attitude is unfortunate. Your primary doctor may need to refer you to a lymphedema specialist.

 Hope this helps and God Bless,

 Jim M.

Hi Ann,

 I have lymphedema in the right arm. It developed more than a year after my surgery. An orthopedist specializes in muscles, tendons, etc but you should have it examined by a lymphedema specialist. That's where I went. She taught me how to massage my body and arm to stimulate the flow of the lymphatic fluid. She also taught me exercises and showed me how to wrap my arm when I needed to take the swelling down. You may need to be fitted for a compression sleeve. My specialist also took measurements of different segments of the arm with the goal that the measurements would decrease.

 The question is: Were you diagnosed with lymphedema or do you think it's lymphedema? The missing lymph nodes can certainly be contributing to your condition.

 I was numb in the armpit and before I was discharged from the hospital I was given instructions on what exercises to do to get the range of motion back. The numbness went away over a period of months.

 Your doctor's attitude is unfortunate. Your primary doctor may need to refer you to a lymphedema specialist.

 Hope this helps and God Bless,

 Jim M.

Ann,

I replied to the message you posted on my "free margins" thread.  Hang in there!  I know there must be help out there for you!

Jacki

Ann,

I replied to the message you posted on my "free margins" thread.  Hang in there!  I know there must be help out there for you!

Jacki

Ann,

I replied to the message you posted on my "free margins" thread.  Hang in there!  I know there must be help out there for you!

Jacki

This is probably the only place you will find a Unwelcome Wagon…………..that is Welcome to the Community, but sorry you were forced to move here.

Right now, you need a workup with a Lymphedema doc/clinic to help you mitigate your symptoms.  If you are unable to locate one, call some Breast Cancer Group and ask.

 Yes, I know Breast Cancer and Melanoma are two different animals, but breast cancer is where the problem of lymphodema was originally addressed, so a good place to start.

Now for some backround.  In a very rudimentary sense, lymphedema is cause when lymph nodes are removed and the remaining nodes, still producing lymph fluid, have no where to go, so it spreads into surrounding tissues.  The BEST way to prevent it is for a surgeon to place drains upon lymph node removal.  The lymph flows into the drain and is tasken out only when the drainage has stopped………..meaning either the remaining lymph chain found a workaround or just quit.

That is why it is soooooooooooooo important, troublesome as they are, to leave drains in until the drainage essentially stops.

As far as your surgeon saying "that is what happens"……………well, I'd love to lay him down and cut his thigh open and see if he would accept that answer.

It is confusing that you mention you have not had a ELD, because, from what you describe, that is what you should have had rather than cherry picking nodes……………..which may be part, if not all of the problem.

One:  See a lymphedema specialist first.

Two: Disgusting as it may be, consult a surgical oncologist, because from what you describe, you may have not had the appropriate surgery and might need a cleanup.

Understand your frustration and it is certainly warranted.

Consider the cause and correction .

Cheers,

Charlie S

This is probably the only place you will find a Unwelcome Wagon…………..that is Welcome to the Community, but sorry you were forced to move here.

Right now, you need a workup with a Lymphedema doc/clinic to help you mitigate your symptoms.  If you are unable to locate one, call some Breast Cancer Group and ask.

 Yes, I know Breast Cancer and Melanoma are two different animals, but breast cancer is where the problem of lymphodema was originally addressed, so a good place to start.

Now for some backround.  In a very rudimentary sense, lymphedema is cause when lymph nodes are removed and the remaining nodes, still producing lymph fluid, have no where to go, so it spreads into surrounding tissues.  The BEST way to prevent it is for a surgeon to place drains upon lymph node removal.  The lymph flows into the drain and is tasken out only when the drainage has stopped………..meaning either the remaining lymph chain found a workaround or just quit.

That is why it is soooooooooooooo important, troublesome as they are, to leave drains in until the drainage essentially stops.

As far as your surgeon saying "that is what happens"……………well, I'd love to lay him down and cut his thigh open and see if he would accept that answer.

It is confusing that you mention you have not had a ELD, because, from what you describe, that is what you should have had rather than cherry picking nodes……………..which may be part, if not all of the problem.

One:  See a lymphedema specialist first.

Two: Disgusting as it may be, consult a surgical oncologist, because from what you describe, you may have not had the appropriate surgery and might need a cleanup.

Understand your frustration and it is certainly warranted.

Consider the cause and correction .

Cheers,

Charlie S

This is probably the only place you will find a Unwelcome Wagon…………..that is Welcome to the Community, but sorry you were forced to move here.

Right now, you need a workup with a Lymphedema doc/clinic to help you mitigate your symptoms.  If you are unable to locate one, call some Breast Cancer Group and ask.

 Yes, I know Breast Cancer and Melanoma are two different animals, but breast cancer is where the problem of lymphodema was originally addressed, so a good place to start.

Now for some backround.  In a very rudimentary sense, lymphedema is cause when lymph nodes are removed and the remaining nodes, still producing lymph fluid, have no where to go, so it spreads into surrounding tissues.  The BEST way to prevent it is for a surgeon to place drains upon lymph node removal.  The lymph flows into the drain and is tasken out only when the drainage has stopped………..meaning either the remaining lymph chain found a workaround or just quit.

That is why it is soooooooooooooo important, troublesome as they are, to leave drains in until the drainage essentially stops.

As far as your surgeon saying "that is what happens"……………well, I'd love to lay him down and cut his thigh open and see if he would accept that answer.

It is confusing that you mention you have not had a ELD, because, from what you describe, that is what you should have had rather than cherry picking nodes……………..which may be part, if not all of the problem.

One:  See a lymphedema specialist first.

Two: Disgusting as it may be, consult a surgical oncologist, because from what you describe, you may have not had the appropriate surgery and might need a cleanup.

Understand your frustration and it is certainly warranted.

Consider the cause and correction .

Cheers,

Charlie S

Hello Ann,

4 years ago I had my wide excision on my upper leg and lymph nodes removed from my groin.  I had swelling and was told to wear a compression stocking to prevent lymphedema.  I was also told to keep my leg elevated when ever possible, including while in bed.

I was given a prescription for a specific size and tightness for a full length version (heal to thigh).  I found one I liked from a company called Juzo.   It was extremely tight and I hated it, but wore it for the first year afterwards.  I currently have little to no signs of lymphedema.  I think you need to address this before it gets worse.  Find a specialist.

I also had numbness from my knee to my groin.  It got better over time.  I'm happy to say that over time, the numb area has gradually diminished, but not gone completely. 

I still find myself reaching down to scratch an itch, and finding that the itchy area is not where I'm scratching.  The nerves must not line up like they used to.

Good luck!

Mike

Hello Ann,

4 years ago I had my wide excision on my upper leg and lymph nodes removed from my groin.  I had swelling and was told to wear a compression stocking to prevent lymphedema.  I was also told to keep my leg elevated when ever possible, including while in bed.

I was given a prescription for a specific size and tightness for a full length version (heal to thigh).  I found one I liked from a company called Juzo.   It was extremely tight and I hated it, but wore it for the first year afterwards.  I currently have little to no signs of lymphedema.  I think you need to address this before it gets worse.  Find a specialist.

I also had numbness from my knee to my groin.  It got better over time.  I'm happy to say that over time, the numb area has gradually diminished, but not gone completely. 

I still find myself reaching down to scratch an itch, and finding that the itchy area is not where I'm scratching.  The nerves must not line up like they used to.

Good luck!

Mike

Hello Ann,

4 years ago I had my wide excision on my upper leg and lymph nodes removed from my groin.  I had swelling and was told to wear a compression stocking to prevent lymphedema.  I was also told to keep my leg elevated when ever possible, including while in bed.

I was given a prescription for a specific size and tightness for a full length version (heal to thigh).  I found one I liked from a company called Juzo.   It was extremely tight and I hated it, but wore it for the first year afterwards.  I currently have little to no signs of lymphedema.  I think you need to address this before it gets worse.  Find a specialist.

I also had numbness from my knee to my groin.  It got better over time.  I'm happy to say that over time, the numb area has gradually diminished, but not gone completely. 

I still find myself reaching down to scratch an itch, and finding that the itchy area is not where I'm scratching.  The nerves must not line up like they used to.

Good luck!

Mike

Ann,

I'm four months out from a left groin LND, and was told that it may or may not stay numb through my thigh for some time. When the surgen goes in, they cut through the surface nerves which sometimes find new pathways and sometimes don't. I suspect you just get used to it.

For swelling my Onc Surgen suggested generic compression socks to keep the lymphedema away from my claves and ankles. My thigh is swollen most of the time, and he simply said the best cure was to get it elevated for a period of time each day, he stressed that a pillow wasn't elevated, so I throw the leg over the couch so the knee rests on top and my thigh sits at 45 degress from my core. 20 minutes and the swelling drops off. Think gravity – sleeping is just flat, and not the downhill you want. A friend has a similar problem and she has put a riser under her bed to tilt it so she sleeps with her feet/legs elevated.

Alas, I have to agree Charlie's point on quality of surgery. My original LND was for staging only by a regular surgen and when my Onc Surgen saw it he flipped, cursed and fixed it. A 2" scar is now about 10", though part of that was he found more when he went in.

Good Luck with the adventure

Craig.

Ann,

I'm four months out from a left groin LND, and was told that it may or may not stay numb through my thigh for some time. When the surgen goes in, they cut through the surface nerves which sometimes find new pathways and sometimes don't. I suspect you just get used to it.

For swelling my Onc Surgen suggested generic compression socks to keep the lymphedema away from my claves and ankles. My thigh is swollen most of the time, and he simply said the best cure was to get it elevated for a period of time each day, he stressed that a pillow wasn't elevated, so I throw the leg over the couch so the knee rests on top and my thigh sits at 45 degress from my core. 20 minutes and the swelling drops off. Think gravity – sleeping is just flat, and not the downhill you want. A friend has a similar problem and she has put a riser under her bed to tilt it so she sleeps with her feet/legs elevated.

Alas, I have to agree Charlie's point on quality of surgery. My original LND was for staging only by a regular surgen and when my Onc Surgen saw it he flipped, cursed and fixed it. A 2" scar is now about 10", though part of that was he found more when he went in.

Good Luck with the adventure

Craig.

Ann,

I'm four months out from a left groin LND, and was told that it may or may not stay numb through my thigh for some time. When the surgen goes in, they cut through the surface nerves which sometimes find new pathways and sometimes don't. I suspect you just get used to it.

For swelling my Onc Surgen suggested generic compression socks to keep the lymphedema away from my claves and ankles. My thigh is swollen most of the time, and he simply said the best cure was to get it elevated for a period of time each day, he stressed that a pillow wasn't elevated, so I throw the leg over the couch so the knee rests on top and my thigh sits at 45 degress from my core. 20 minutes and the swelling drops off. Think gravity – sleeping is just flat, and not the downhill you want. A friend has a similar problem and she has put a riser under her bed to tilt it so she sleeps with her feet/legs elevated.

Alas, I have to agree Charlie's point on quality of surgery. My original LND was for staging only by a regular surgen and when my Onc Surgen saw it he flipped, cursed and fixed it. A 2" scar is now about 10", though part of that was he found more when he went in.

Good Luck with the adventure

Craig.

Ann,

I'm four months out from a left groin LND, and was told that it may or may not stay numb through my thigh for some time. When the surgen goes in, they cut through the surface nerves which sometimes find new pathways and sometimes don't. I suspect you just get used to it.

For swelling my Onc Surgen suggested generic compression socks to keep the lymphedema away from my claves and ankles. My thigh is swollen most of the time, and he simply said the best cure was to get it elevated for a period of time each day, he stressed that a pillow wasn't elevated, so I throw the leg over the couch so the knee rests on top and my thigh sits at 45 degress from my core. 20 minutes and the swelling drops off. Think gravity – sleeping is just flat, and not the downhill you want. A friend has a similar problem and she has put a riser under her bed to tilt it so she sleeps with her feet/legs elevated.

Alas, I have to agree Charlie's point on quality of surgery. My original LND was for staging only by a regular surgen and when my Onc Surgen saw it he flipped, cursed and fixed it. A 2" scar is now about 10", though part of that was he found more when he went in.

Good Luck with the adventure

Craig.

Ann,

I'm four months out from a left groin LND, and was told that it may or may not stay numb through my thigh for some time. When the surgen goes in, they cut through the surface nerves which sometimes find new pathways and sometimes don't. I suspect you just get used to it.

For swelling my Onc Surgen suggested generic compression socks to keep the lymphedema away from my claves and ankles. My thigh is swollen most of the time, and he simply said the best cure was to get it elevated for a period of time each day, he stressed that a pillow wasn't elevated, so I throw the leg over the couch so the knee rests on top and my thigh sits at 45 degress from my core. 20 minutes and the swelling drops off. Think gravity – sleeping is just flat, and not the downhill you want. A friend has a similar problem and she has put a riser under her bed to tilt it so she sleeps with her feet/legs elevated.

Alas, I have to agree Charlie's point on quality of surgery. My original LND was for staging only by a regular surgen and when my Onc Surgen saw it he flipped, cursed and fixed it. A 2" scar is now about 10", though part of that was he found more when he went in.

Good Luck with the adventure

Craig.

Ann,

I'm four months out from a left groin LND, and was told that it may or may not stay numb through my thigh for some time. When the surgen goes in, they cut through the surface nerves which sometimes find new pathways and sometimes don't. I suspect you just get used to it.

For swelling my Onc Surgen suggested generic compression socks to keep the lymphedema away from my claves and ankles. My thigh is swollen most of the time, and he simply said the best cure was to get it elevated for a period of time each day, he stressed that a pillow wasn't elevated, so I throw the leg over the couch so the knee rests on top and my thigh sits at 45 degress from my core. 20 minutes and the swelling drops off. Think gravity – sleeping is just flat, and not the downhill you want. A friend has a similar problem and she has put a riser under her bed to tilt it so she sleeps with her feet/legs elevated.

Alas, I have to agree Charlie's point on quality of surgery. My original LND was for staging only by a regular surgen and when my Onc Surgen saw it he flipped, cursed and fixed it. A 2" scar is now about 10", though part of that was he found more when he went in.

Good Luck with the adventure

Craig.