› Forums › General Melanoma Community › lymphodema????
- This topic has 18 replies, 4 voices, and was last updated 12 years, 5 months ago by
lizzykittycat.
- Post
-
- November 16, 2011 at 6:07 pm
i fear that i'm experiencing lymphodema, but am not sure. at this point, i've only had 2 sentinel nodes removed about a month ago. i didn't experience the pain and swelling for about 2 weeks after the surgery. it seemed to begin around when my (horrible) wound was debrided. it became very "angry" and infected. soon thereafter, i had pain starting up by my groin (dissection spot) down to my feet.
i fear that i'm experiencing lymphodema, but am not sure. at this point, i've only had 2 sentinel nodes removed about a month ago. i didn't experience the pain and swelling for about 2 weeks after the surgery. it seemed to begin around when my (horrible) wound was debrided. it became very "angry" and infected. soon thereafter, i had pain starting up by my groin (dissection spot) down to my feet.
for about the past 2 and 1/2 weeks, this pain and swelling has persisted. i'm not sure if it can be attributed to true lymphodema because i lost those 2 nodes, or if it is a reaction to the infected excision wound. it is tolerable, but consistent and painful. the whole inside of my leg feels tight and hurts if i flex in different directions. in addition, my ankle and foot is swollent non-stop.
i'm facing the lymphadenectomy in about 2 months as soon as my wound is healed to prevent infection. i'm agonizing over the decision whether to have the surgery or not (which i've posted about previously). the issue now is that i'm TRULY fearful of lymphodema. if i'm experiencing it already from just the removal of 2, what do i have to anticipate after the procedure??? i feel like i'd rather not have a leg than to have to deal with this, or probably worse, for the rest of my life.
has anyone had a temporary flare up in reaction to the excision? it was on my calf, by the way. i have an appt with my surgical onc on mon. i'm hoping he can provide SOME insight. so far, he's really only said we can't tell what is going on. 🙁
- Replies
-
-
- November 16, 2011 at 7:10 pm
I also had significant Lymphedema after removal of 1 SN. When I had my complete groin dissection11 months later I was worried about more Lymphedema. I had Lymphedema tratment( wrapping and massage) late because I had complications (large open wound which required reconstruction). My Lymphedema is considered moderate and I use a compression sleeve(pump) for treatment. All in all my lymphedema is not a whole lot worse than after the SLN. My Lymphedema Dr also warned that it can become worse at any time even years after the initial surgery. Just wanted you to know it may not turn out as bad as you think.
Mary Sue
-
- November 16, 2011 at 7:10 pm
I also had significant Lymphedema after removal of 1 SN. When I had my complete groin dissection11 months later I was worried about more Lymphedema. I had Lymphedema tratment( wrapping and massage) late because I had complications (large open wound which required reconstruction). My Lymphedema is considered moderate and I use a compression sleeve(pump) for treatment. All in all my lymphedema is not a whole lot worse than after the SLN. My Lymphedema Dr also warned that it can become worse at any time even years after the initial surgery. Just wanted you to know it may not turn out as bad as you think.
Mary Sue
-
- November 16, 2011 at 7:18 pm
thx for the insight. did your dr. think that the lympedema was a reaction to the fact that your wound was "angry" as mine is? mine is large and open as well. would you say that it didn't improve once your wound was finally healed? i was hoping that maybe this is just a temporary reaction to the gaping hole in my leg and not truly lymphedema.
-
- November 17, 2011 at 12:25 am
Hi lizzykittycat
Long story short, I had 3 surgeries in my thigh to remove tumors. I have lymphedema & pain daily from my knee to my thigh. Also, my knee to my thigh is numb. If I had to do it over again, I would NOT have had surgery.
I am always in pain & my leg is always swollen. My doctor did not warn me about the lympheda side effects. Your doctor will NOT give you any guarantees what is going to happen with your surgery so expect the worst & hope for the best.
If I were you, I would try to get a systemic treatment instead of surgery
Good Luck
Carol
-
- November 17, 2011 at 12:25 am
Hi lizzykittycat
Long story short, I had 3 surgeries in my thigh to remove tumors. I have lymphedema & pain daily from my knee to my thigh. Also, my knee to my thigh is numb. If I had to do it over again, I would NOT have had surgery.
I am always in pain & my leg is always swollen. My doctor did not warn me about the lympheda side effects. Your doctor will NOT give you any guarantees what is going to happen with your surgery so expect the worst & hope for the best.
If I were you, I would try to get a systemic treatment instead of surgery
Good Luck
Carol
-
- November 17, 2011 at 12:25 am
Hi lizzykittycat
Long story short, I had 3 surgeries in my thigh to remove tumors. I have lymphedema & pain daily from my knee to my thigh. Also, my knee to my thigh is numb. If I had to do it over again, I would NOT have had surgery.
I am always in pain & my leg is always swollen. My doctor did not warn me about the lympheda side effects. Your doctor will NOT give you any guarantees what is going to happen with your surgery so expect the worst & hope for the best.
If I were you, I would try to get a systemic treatment instead of surgery
Good Luck
Carol
-
- November 17, 2011 at 12:53 am
It's hard to tell but I think the swelling and tightness is here to stay. My thigh has been swollen since my original WLE but is definetely worse since my reconstruction surgery. I had a transfer flap surgery where they took skin, muscle and tissue from my right abd and transferred it underneath to the gaping hole in my groin. There was an incision on my thigh from that surgery that opened up also. Now I am having problems from the mesh that was placed in my abd during the transfer flap surgery and will have another surgery to take the mesh out of my abd. I am going to P.T. now to strengthen my left leg which is really helping with the range of motion that was affected by the surgeries. If you plan on Lymph dissection be sure to see a Lymphedema Therapist asap after the surgery. It is very important.
Mary Sue
-
- November 17, 2011 at 12:53 am
It's hard to tell but I think the swelling and tightness is here to stay. My thigh has been swollen since my original WLE but is definetely worse since my reconstruction surgery. I had a transfer flap surgery where they took skin, muscle and tissue from my right abd and transferred it underneath to the gaping hole in my groin. There was an incision on my thigh from that surgery that opened up also. Now I am having problems from the mesh that was placed in my abd during the transfer flap surgery and will have another surgery to take the mesh out of my abd. I am going to P.T. now to strengthen my left leg which is really helping with the range of motion that was affected by the surgeries. If you plan on Lymph dissection be sure to see a Lymphedema Therapist asap after the surgery. It is very important.
Mary Sue
-
- November 17, 2011 at 12:53 am
It's hard to tell but I think the swelling and tightness is here to stay. My thigh has been swollen since my original WLE but is definetely worse since my reconstruction surgery. I had a transfer flap surgery where they took skin, muscle and tissue from my right abd and transferred it underneath to the gaping hole in my groin. There was an incision on my thigh from that surgery that opened up also. Now I am having problems from the mesh that was placed in my abd during the transfer flap surgery and will have another surgery to take the mesh out of my abd. I am going to P.T. now to strengthen my left leg which is really helping with the range of motion that was affected by the surgeries. If you plan on Lymph dissection be sure to see a Lymphedema Therapist asap after the surgery. It is very important.
Mary Sue
-
- November 16, 2011 at 7:18 pm
thx for the insight. did your dr. think that the lympedema was a reaction to the fact that your wound was "angry" as mine is? mine is large and open as well. would you say that it didn't improve once your wound was finally healed? i was hoping that maybe this is just a temporary reaction to the gaping hole in my leg and not truly lymphedema.
-
- November 16, 2011 at 7:18 pm
thx for the insight. did your dr. think that the lympedema was a reaction to the fact that your wound was "angry" as mine is? mine is large and open as well. would you say that it didn't improve once your wound was finally healed? i was hoping that maybe this is just a temporary reaction to the gaping hole in my leg and not truly lymphedema.
-
- November 16, 2011 at 7:10 pm
I also had significant Lymphedema after removal of 1 SN. When I had my complete groin dissection11 months later I was worried about more Lymphedema. I had Lymphedema tratment( wrapping and massage) late because I had complications (large open wound which required reconstruction). My Lymphedema is considered moderate and I use a compression sleeve(pump) for treatment. All in all my lymphedema is not a whole lot worse than after the SLN. My Lymphedema Dr also warned that it can become worse at any time even years after the initial surgery. Just wanted you to know it may not turn out as bad as you think.
Mary Sue
-
- November 17, 2011 at 3:59 am
Chill out. You have been reading too much and not asking your surgeon questions.
What is lymphedema? Pools of lymph that swell and become inflamed is a basic explanation.
Why do people experience lymphadema following surgery?
Two reasons. One is that following surgery to remove lymph nodes a JP drain is not allowed enough time to reaming so the lymphatic system can find a new path of drainage……………so take that JP drain out too soon and disallow the lymphatic system time to find a workaround. to drain, and there you have it.
The other reason, sometimes the lymphatic system is just unable to find a workaround, so what happens is that the area of surgery just fills with lymph fluid and over time becomes inflamed, swollen and infected
In your case of plucking nodes and a pending node dissection in two months, allow me to offer a suggestion.
At first blush, melanoma is all about fear. Moving beyond that is working the problem.
Whoever removed your nodes is who you need to ask this question……..and do not be shy. Before talking with them, write down your concerns and be specific and want an answer.
Do not allow your imagination to run away with your sense of logic. I get it how much a melanoma diagnosis can blow you away, really, I do. But, difficult as it is, slap yourself in the head and use your brain.
From what you say, my sense is that post-op, you are lacking feedback and are sensing the worst.
I'm thinking this is due more to a lack of information afforded you post-op than actual conditions.
Would urge you to open a clear line of communication between you and whoever slashed you and ask and be answered.
Cheers,
Charlie S
-
- November 17, 2011 at 3:59 am
Chill out. You have been reading too much and not asking your surgeon questions.
What is lymphedema? Pools of lymph that swell and become inflamed is a basic explanation.
Why do people experience lymphadema following surgery?
Two reasons. One is that following surgery to remove lymph nodes a JP drain is not allowed enough time to reaming so the lymphatic system can find a new path of drainage……………so take that JP drain out too soon and disallow the lymphatic system time to find a workaround. to drain, and there you have it.
The other reason, sometimes the lymphatic system is just unable to find a workaround, so what happens is that the area of surgery just fills with lymph fluid and over time becomes inflamed, swollen and infected
In your case of plucking nodes and a pending node dissection in two months, allow me to offer a suggestion.
At first blush, melanoma is all about fear. Moving beyond that is working the problem.
Whoever removed your nodes is who you need to ask this question……..and do not be shy. Before talking with them, write down your concerns and be specific and want an answer.
Do not allow your imagination to run away with your sense of logic. I get it how much a melanoma diagnosis can blow you away, really, I do. But, difficult as it is, slap yourself in the head and use your brain.
From what you say, my sense is that post-op, you are lacking feedback and are sensing the worst.
I'm thinking this is due more to a lack of information afforded you post-op than actual conditions.
Would urge you to open a clear line of communication between you and whoever slashed you and ask and be answered.
Cheers,
Charlie S
-
- November 23, 2011 at 1:04 am
I am actually quite the “questioner ” of my surgeon.There is nothing held back here. I may be in for a brief follow-up appt, and still in the office discussing over an hr ltr. The problem here is that he cannot tell me for sure whether my swelling is temp due to my open wound, or more permanent due to the sentinel node dissection.
He feels that until after I’m healed and after the total dissection, he will be able to give me more answers and options as far as managing these potential side effects.
In the meantime, he wrapped my foot up to calf with an ace bandage to try and reduce swelling. Through the night and day today, had more pain than ever making it difficult to walk. :(. I’ve basically given up on that. The option seemed to be way more painful and didn’t make sense.
Id still love any more advice. I’m so scared that this will plague me and reduce my day to day quality of life.
Pls forgive typos. I’m just no good on the iPad.
-
- November 23, 2011 at 1:04 am
I am actually quite the “questioner ” of my surgeon.There is nothing held back here. I may be in for a brief follow-up appt, and still in the office discussing over an hr ltr. The problem here is that he cannot tell me for sure whether my swelling is temp due to my open wound, or more permanent due to the sentinel node dissection.
He feels that until after I’m healed and after the total dissection, he will be able to give me more answers and options as far as managing these potential side effects.
In the meantime, he wrapped my foot up to calf with an ace bandage to try and reduce swelling. Through the night and day today, had more pain than ever making it difficult to walk. :(. I’ve basically given up on that. The option seemed to be way more painful and didn’t make sense.
Id still love any more advice. I’m so scared that this will plague me and reduce my day to day quality of life.
Pls forgive typos. I’m just no good on the iPad.
-
- November 23, 2011 at 1:04 am
I am actually quite the “questioner ” of my surgeon.There is nothing held back here. I may be in for a brief follow-up appt, and still in the office discussing over an hr ltr. The problem here is that he cannot tell me for sure whether my swelling is temp due to my open wound, or more permanent due to the sentinel node dissection.
He feels that until after I’m healed and after the total dissection, he will be able to give me more answers and options as far as managing these potential side effects.
In the meantime, he wrapped my foot up to calf with an ace bandage to try and reduce swelling. Through the night and day today, had more pain than ever making it difficult to walk. :(. I’ve basically given up on that. The option seemed to be way more painful and didn’t make sense.
Id still love any more advice. I’m so scared that this will plague me and reduce my day to day quality of life.
Pls forgive typos. I’m just no good on the iPad.
-
- November 17, 2011 at 3:59 am
Chill out. You have been reading too much and not asking your surgeon questions.
What is lymphedema? Pools of lymph that swell and become inflamed is a basic explanation.
Why do people experience lymphadema following surgery?
Two reasons. One is that following surgery to remove lymph nodes a JP drain is not allowed enough time to reaming so the lymphatic system can find a new path of drainage……………so take that JP drain out too soon and disallow the lymphatic system time to find a workaround. to drain, and there you have it.
The other reason, sometimes the lymphatic system is just unable to find a workaround, so what happens is that the area of surgery just fills with lymph fluid and over time becomes inflamed, swollen and infected
In your case of plucking nodes and a pending node dissection in two months, allow me to offer a suggestion.
At first blush, melanoma is all about fear. Moving beyond that is working the problem.
Whoever removed your nodes is who you need to ask this question……..and do not be shy. Before talking with them, write down your concerns and be specific and want an answer.
Do not allow your imagination to run away with your sense of logic. I get it how much a melanoma diagnosis can blow you away, really, I do. But, difficult as it is, slap yourself in the head and use your brain.
From what you say, my sense is that post-op, you are lacking feedback and are sensing the worst.
I'm thinking this is due more to a lack of information afforded you post-op than actual conditions.
Would urge you to open a clear line of communication between you and whoever slashed you and ask and be answered.
Cheers,
Charlie S
-
- You must be logged in to reply to this topic.