› Forums › General Melanoma Community › thigh swelling after lymph node dissection
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gabsound.
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- June 29, 2011 at 8:07 pm
I had a melanoma on the bottom of my toe in August 2010. In September, after two positive lymph nodes, I had a complete inguinal lymph node dissection – superficial and deep. I recovered well and went on with life and interferon (another story). Though I had some swelling and numbness in the thigh, I was doing well. Then, about 4.5 months after surgery, my leg really started swelling. Sensations at first, and then size increases. I finally got in to see a lymphedema specialist, who recommended we start with compression.
I had a melanoma on the bottom of my toe in August 2010. In September, after two positive lymph nodes, I had a complete inguinal lymph node dissection – superficial and deep. I recovered well and went on with life and interferon (another story). Though I had some swelling and numbness in the thigh, I was doing well. Then, about 4.5 months after surgery, my leg really started swelling. Sensations at first, and then size increases. I finally got in to see a lymphedema specialist, who recommended we start with compression. I wore a 30-40 mmHG, thigh high garment for about 8 weeks and went back to the doctor complaining that it only worked on my lower leg. From the knee up, the swelling got worse.
So, now I'm scheduled to see an occupational therapist to do the complete decongestive therapy. I'm looking forward to the end of that, and hope it helps. But, in some ways, the therapists seems stumped by the swelling in the thigh. Graduated compression garments don't apply as much pressure above the knee where I need it, so I'm worried that all this time and money might be for naught in the end.
Does anyone have experience with such thigh swelling? Is there a better garment than just the thigh high compression hose?
Thanks so much for any information.
laneyb
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- June 29, 2011 at 11:07 pm
It makes sense that you will have swelling closer to where your nodes were removed. I have my swelling in my upper arm. I have a sleeve but rarely use it. I had 4 sessions with a massage therapist and now I do that myself when I need it. I'll go back to her for "tune-ups". Here's an article from a site I found of some use.
http://www.lymphedemapeople.com/wiki/doku.php?id=leg_lymphedema
Good Luck
Mary
Stage 3
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- June 29, 2011 at 11:07 pm
It makes sense that you will have swelling closer to where your nodes were removed. I have my swelling in my upper arm. I have a sleeve but rarely use it. I had 4 sessions with a massage therapist and now I do that myself when I need it. I'll go back to her for "tune-ups". Here's an article from a site I found of some use.
http://www.lymphedemapeople.com/wiki/doku.php?id=leg_lymphedema
Good Luck
Mary
Stage 3
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- June 30, 2011 at 6:39 am
My husband had all left inguinal nodes removed 2 years ago. He has recently finished the therapy you are scheduled for and it has been a great help to him. He had swelling in the whole leg and toes, and we were told the lower it goes the more difficult it will be to control. He had fibrosis in his thigh, alot of pain, and difficulty bending his knee or sitting.
We went every weekday for a month to have drainage therapy and the leg wrapped. He will probably need to see a therapist on a weekly basis, but the improvement has been worth it all. Along with the treatment, he is wearing a circular knit (I think I have that right) garment now and that is a MUST for him.
I simply cannot stress the importance of getting in touch with the right therapist. The first one we went to (she was certified) told us he had very slight lymphedema and probably would require no further treatment, so we stopped. By the time we found someone else, it had become a major problem. The sooner it gets addressed, the less maintenance it will take.
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- June 30, 2011 at 11:04 am
HI,
Well I am surprised that your lymphadema specialist didnt do the manual lymphadema specilaized lymph drainage techniques which take about 45 minutes to an hour and then wrap your leg with special wraps that will also help to keep the lymph fluid moving..the wraps go around each toe and all the way up to the groin. I had this lymphadema therapy three times a week for 6 to 8 weeks several times after surgeries including a LND and other melanoma treatments which caused my right leg to swell to almost three times its normal size. Only after the lymphadema was under control (and yes I have exercises and manual lymph training that i do at home everyday now and this has been several years), again, once the lymphadema was under control I was measured for a custom knit graduated compression garment (made by JOBST) that goes on like pantyhose….meaning it goes all the way up my leg and has a top like pantyhose and it goes halfway down my left thigh.
It is important for the lymphadema specialist or someone else specifically trained to treat this to start with "opening" up the lymph nodes in the neck, and under your arm and so on down your side and stroking upwards in sections to "clear" the fluid, and work all the way down your leg. Lymph fluid flows UP. If you have had a LND, many of your lymph nodes from your groin have been removed and the lymph fluid has to be moved in some other pathways. it takes dilgence and hard work…first on your therapists part and then on yours. it has been almost 5 years since my LND and subsequent treatments. I wear the compression garment every day (yup its a pain, but my leg feels better actually and it helps) and I have a SOLARIS brand nighttime garment that I wear (you can google both companies and see their products).
Best of luck!
Vermont_Donna, stage 3a, NED
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- June 30, 2011 at 11:04 am
HI,
Well I am surprised that your lymphadema specialist didnt do the manual lymphadema specilaized lymph drainage techniques which take about 45 minutes to an hour and then wrap your leg with special wraps that will also help to keep the lymph fluid moving..the wraps go around each toe and all the way up to the groin. I had this lymphadema therapy three times a week for 6 to 8 weeks several times after surgeries including a LND and other melanoma treatments which caused my right leg to swell to almost three times its normal size. Only after the lymphadema was under control (and yes I have exercises and manual lymph training that i do at home everyday now and this has been several years), again, once the lymphadema was under control I was measured for a custom knit graduated compression garment (made by JOBST) that goes on like pantyhose….meaning it goes all the way up my leg and has a top like pantyhose and it goes halfway down my left thigh.
It is important for the lymphadema specialist or someone else specifically trained to treat this to start with "opening" up the lymph nodes in the neck, and under your arm and so on down your side and stroking upwards in sections to "clear" the fluid, and work all the way down your leg. Lymph fluid flows UP. If you have had a LND, many of your lymph nodes from your groin have been removed and the lymph fluid has to be moved in some other pathways. it takes dilgence and hard work…first on your therapists part and then on yours. it has been almost 5 years since my LND and subsequent treatments. I wear the compression garment every day (yup its a pain, but my leg feels better actually and it helps) and I have a SOLARIS brand nighttime garment that I wear (you can google both companies and see their products).
Best of luck!
Vermont_Donna, stage 3a, NED
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- June 30, 2011 at 6:39 am
My husband had all left inguinal nodes removed 2 years ago. He has recently finished the therapy you are scheduled for and it has been a great help to him. He had swelling in the whole leg and toes, and we were told the lower it goes the more difficult it will be to control. He had fibrosis in his thigh, alot of pain, and difficulty bending his knee or sitting.
We went every weekday for a month to have drainage therapy and the leg wrapped. He will probably need to see a therapist on a weekly basis, but the improvement has been worth it all. Along with the treatment, he is wearing a circular knit (I think I have that right) garment now and that is a MUST for him.
I simply cannot stress the importance of getting in touch with the right therapist. The first one we went to (she was certified) told us he had very slight lymphedema and probably would require no further treatment, so we stopped. By the time we found someone else, it had become a major problem. The sooner it gets addressed, the less maintenance it will take.
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- June 30, 2011 at 6:56 pm
Hi Laney,
I had only the superficial lymph nodes removed in the right groin region. This was mid February of this year. I too went to a lymphedema clinic. It really helps to have the leg drained. I have swelling and still some nerve pain on top of my thigh. Most of my swelling is in the thigh region but sometime increases in the region of the knee and occasionally down as low as the foot.
I have found the compression pantyhose to work really well. A stocking that stopped at the top of the thigh just caused swelling above the top of the stocking. I agree with Donna, its not a fun thing to wear (especially here in the Las Vegas Desert) but it significantly helps me and my leg feels swollen and kind of "weird" when I don't wear it.
I feel like I have pretty good control over this right now, as I do so the massage technique starting with clavicular area and emptying out the upper half of the body to make space for that lower fluid to move up. I just do it in the evening while I'm watching TV and the longer I do it the better it gets. I sometimes do it in the morning as well (briefly) before I get out of bed. I put the pantyhose on 1st thing in the morning and have been instructed to to always wear them with exercise.
They definitely stressed that sometimes it can get worse and you may need to periodically go back in and get things under control so that you can manage it yourself again. They told me some people come in yearly just for a check and a little teaching just to make sure they are taking good care.
I think you can definitely get some relief, so don't despair. It just may take a little time. I also wonder if it could be worse for you as you had the deep nodes removed as well.
Best of luck
Julie in Las Vegas
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- June 30, 2011 at 6:56 pm
Hi Laney,
I had only the superficial lymph nodes removed in the right groin region. This was mid February of this year. I too went to a lymphedema clinic. It really helps to have the leg drained. I have swelling and still some nerve pain on top of my thigh. Most of my swelling is in the thigh region but sometime increases in the region of the knee and occasionally down as low as the foot.
I have found the compression pantyhose to work really well. A stocking that stopped at the top of the thigh just caused swelling above the top of the stocking. I agree with Donna, its not a fun thing to wear (especially here in the Las Vegas Desert) but it significantly helps me and my leg feels swollen and kind of "weird" when I don't wear it.
I feel like I have pretty good control over this right now, as I do so the massage technique starting with clavicular area and emptying out the upper half of the body to make space for that lower fluid to move up. I just do it in the evening while I'm watching TV and the longer I do it the better it gets. I sometimes do it in the morning as well (briefly) before I get out of bed. I put the pantyhose on 1st thing in the morning and have been instructed to to always wear them with exercise.
They definitely stressed that sometimes it can get worse and you may need to periodically go back in and get things under control so that you can manage it yourself again. They told me some people come in yearly just for a check and a little teaching just to make sure they are taking good care.
I think you can definitely get some relief, so don't despair. It just may take a little time. I also wonder if it could be worse for you as you had the deep nodes removed as well.
Best of luck
Julie in Las Vegas
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