Updates

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  Rose Katz: Hi Sue- I thought I would check in now that it's been awhile since your surgery with Dr. Chang.  How is it going? Are you still improved, or improving?  I'm really trying to figure out what to do as mine is stable but I seem to be getting cellulitis...  moreHi Sue- I thought I would check in now that it's been awhile since your surgery with Dr. Chang.  How is it going? Are you still improved, or improving?  I'm really trying to figure out what to do as mine is stable but I seem to be getting cellulitis flare ups more often....  

  • November 12, 2017
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  Sue Kenyon How do you know the amount of compression you need, I've just had a PT tell me I need to up my compression to 30-40 and use a flat stocking. I was in 20-30 Median sheer and comfort thigh high stockings. I just had a lymph node transfer and a bypass if...  moreHow do you know the amount of compression you need, I've just had a PT tell me I need to up my compression to 30-40 and use a flat stocking. I was in 20-30 Median sheer and comfort thigh high stockings. I just had a lymph node transfer and a bypass if that matters in the compression choice. I tried the Median forte in 30-40, and I can't keep them from rolling down my thigh and they're like impossible to put on. I worked up quite a sweat!!
     

  • August 24, 2016

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    Deleted Member I don't know if there is any research on that. I was just told by one that I need to lower my compression from 30-40 to 20-30. For donning the garment, they make slippies for arms. I suspect there is something similar for legs. The arm slippie is...  moreI don't know if there is any research on that. I was just told by one that I need to lower my compression from 30-40 to 20-30. For donning the garment, they make slippies for arms. I suspect there is something similar for legs. The arm slippie is designed to hook it around a door knob to pull it out, but I just use my foot as I am usually in bed when I am using it. You may find that helpful in more easily donning the garment.  

    • August 24, 2016
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  Sue Kenyon Can you recommend a therapist for my area? Kalamazoo, Michigan 
  I have been to several different PT's and each time I switch they tell me that I was in the wrong compression garment. And there is also a great disagreement on MLD. Thanks

  • August 12, 2016

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    Lymphedema Community Staff You can find a qualified therapist in your area here:
    
    http://www.nortonschool.com/therapistreferrals.html

    • August 12, 2016
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    Deleted Member Is there a way of searching without having to give out your email address?

    • August 13, 2016
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    Lymphedema Community Staff The search results are emailed to you so an email address is necessary.

    • August 14, 2016
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  Sue Kenyon I had endometrium cancer in January 2014, shortly thereafter I developed lymphedema in both legs with my right leg the worse. I am now recovering from 2 surgeries at the University of Chicago hospital, my surgeon was Dr David Chang. I had a lymphatic...  moreI had endometrium cancer in January 2014, shortly thereafter I developed lymphedema in both legs with my right leg the worse. I am now recovering from 2 surgeries at the University of Chicago hospital, my surgeon was Dr David Chang. I had a lymphatic bypass in one leg and I had a lymph node transfer, from the neck to my groin. Already I am seeing improvement in my leg and it's been less than 2 weeks. If you are suffering from lymphedema, and who isn't , please google this.   

  • August 6, 2016

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    Deleted Member Sent you a FR to discuss.

    • August 7, 2016
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  kim guesno: I to am very active and it slows me up and I get so upset that I cant do what I want to.Is driving a problem for you its a nightmare for me,but I have back and neck problems also from a car accident ,and I reinjured everything a few years ago the...  moreI to am very active and it slows me up and I get so upset that I cant do what I want to.Is driving a problem for you its a nightmare for me,but I have back and neck problems also from a car accident ,and I reinjured everything a few years ago the lymphedema is just a added bonus I guess.  

  • June 2, 2016

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    BRYAN WAYNE YES IT IS..IM PISSED CAUSE IVE BEEN A PROFESIONAL DRIVER MY WHOLE LIFE

    • June 2, 2016
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  kim guesno: Thankyou sue for the information that name rings a bell with me I must have came across his name online

  • June 2, 2016

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    Sue Kenyon Good luck, I will send you updates after surgery. My right leg is 2" bigger than my left leg and nothing I do can get the swelling to reduce. I had a hiking trip with my daughter i had to cancel, I'm hoping for next year.

    • June 2, 2016
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  Sue Kenyon → kim guesno: Kim, check out Dr David Chang at University of Chicago, I had endometrium cancer, surgery was January 2014 and I have lymphedema in my right leg, on August 12 I'm having surgery to help with the swelling and discomfort. I will be having lymph bypass and...  moreKim, check out Dr David Chang at University of Chicago, I had endometrium cancer, surgery was January 2014 and I have lymphedema in my right leg, on August 12 I'm having surgery to help with the swelling and discomfort. I will be having lymph bypass and a transplant.   

  • June 2, 2016
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  kim guesno: hi sue I love your snow picture

  • June 1, 2016
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  Sue Kenyon I have understood that exercise can help with the swelling from lymphedema and that worked for me for 18 months, it seems now that I have progressed to stage 2 and exercise does NOT seem to help. Yesterday, I measured my leg before and after a walk and...  moreI have understood that exercise can help with the swelling from lymphedema and that worked for me for 18 months, it seems now that I have progressed to stage 2 and exercise does NOT seem to help. Yesterday, I measured my leg before and after a walk and my leg was larger after walking. Needless to say I am very frustrated, I walk my dog 3-4 miles on trails, I walk 100 laps in a pool, I walk 18 holes of golf, I have always been very active and my question and fear is my active lifestyle making my lymphedema worse? I'm currently using 20-30 compression thigh highs on my leg and wrapping at night. Currently my right thigh is 2" larger than my left thigh. Is it gradually going to continue to get larger? Thank you for your response. And, has anyone else had a similar experience?  less

  • April 2, 2016
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  Sue Kenyon I have cellulitis in my lymphedema leg, I was on an antibiotic for 10 days, I went on vacation in Florida and went for a 5 mile hike, my leg exploded. Swollen and very, very red and stinging. I went to the ER and got an 900mg IV and 14 days of...  moreI have cellulitis in my lymphedema leg, I was on an antibiotic for 10 days, I went on vacation in Florida and went for a 5 mile hike, my leg exploded. Swollen and very, very red and stinging. I went to the ER and got an 900mg IV and 14 days of antibiotics, the doctor told me to elevate and rest as much as possible. So, my Florida vacation has been reduced to sitting by the pool, I'd rather be golfing, swimming and exploring. However, my leg and especially my foot is still red. The swelling is gone and I'm not as red, my question is when will the redness and tender foot go away? My 14 day dosage of antibiotics ends in a few days. How long do I have to stay immobile? My Fitbit goal was 20,000 steps a day, now I'm trying to stay under 2,000. Anyone else struggle with this?  less

  • March 21, 2016

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    Staff Certified Lymphedema Therapist Hi Sue, so sorry you are dealing with this! Question for you: are you wearing your compression garment? This may help with the tenderness. Keep an eye on it however, as you may need to see the doctor again. Feel better!

    • March 22, 2016
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    Sue Kenyon I was told after 48 hours on antibiotics I can go back to compression, while sitting by the pool for 4-5 hours a day, I did not wear my stocking. I am however, backwards on the lounge chair with my foot elevated. The ER doctor told me to stay off my leg...  moreI was told after 48 hours on antibiotics I can go back to compression, while sitting by the pool for 4-5 hours a day, I did not wear my stocking. I am however, backwards on the lounge chair with my foot elevated. The ER doctor told me to stay off my leg completely for 2 weeks. I've done that and I've seen great improvement, but my leg is still a shade of pink and my foot around my toes is a lighter red.  

    • March 22, 2016
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    Staff Certified Lymphedema Therapist Are you wearing sunscreen? Even in the shade you need it. YOu can also wear your compression outside while by the pool for protection. I have seen instances where some feet remain slightly red after being treated for cellulitis. It does fade over...  moreAre you wearing sunscreen? Even in the shade you need it. YOu can also wear your compression outside while by the pool for protection. I have seen instances where some feet remain slightly red after being treated for cellulitis. It does fade over time as long as there is no new infection. When outside, your body temp also rises which can make to foot red where there was an infection as well.  

    • March 23, 2016
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  Sue Kenyon I have cellulitis in my right foot and ankle. This is my first bout with this, should I expect it to go away after 10 days of antibiotics. And, how much does cellulitis contribute to the recent swelling I'm having in my right foot, that won't go...  moreI have cellulitis in my right foot and ankle. This is my first bout with this, should I expect it to go away after 10 days of antibiotics. And, how much does cellulitis contribute to the recent swelling I'm having in my right foot, that won't go away.
  Also, my PT said NOT to wear compression garments and the Dr didn't know,  what I should do? It's wonderful not wearing the compression garments, my leg feels so free, too bad it is red, swollen and stings.  

  • February 23, 2016

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    Staff Certified Lymphedema Therapist After about 3 days on antibiotics you should start to feel better. Yes,an infection can exacerbate your current edema. As long as it is comfortable and not causing you further pain, then you can wear your compression garments, just no manual lymph...  moreAfter about 3 days on antibiotics you should start to feel better. Yes,an infection can exacerbate your current edema. As long as it is comfortable and not causing you further pain, then you can wear your compression garments, just no manual lymph drainage for the first 3-4 days of antibiotics. Feel better!  

    • February 24, 2016
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  Sue Kenyon How common is it for the swelling not to go down with elevation or compression., especially in my ankle and foot?  I just saw my Dr and she suspected I had DVT, however the ultrasound came back normal, is there any other tests. I feel like this is more...  moreHow common is it for the swelling not to go down with elevation or compression., especially in my ankle and foot?  I just saw my Dr and she suspected I had DVT, however the ultrasound came back normal, is there any other tests. I feel like this is more than lymphedema.   

  • February 2, 2016

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    Staff Certified Lymphedema Therapist If you are in stage 2 lymphedema than the swelling won't reduce with elevation alone. Are you having treatment by a certified lymphedema therapist at this time? Sounds like you need comprehensive treatment that includes manual lymph drainage,...  moreIf you are in stage 2 lymphedema than the swelling won't reduce with elevation alone. Are you having treatment by a certified lymphedema therapist at this time? Sounds like you need comprehensive treatment that includes manual lymph drainage, compression and...    

    • February 11, 2016
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    Sue Kenyon Thank you for your response. I'm seeing a new therapist to relearn manual lymph drainage. I have another question, I walk 100 laps in a pool, 4-5 days a week, and when it's not too cold outside, (Michigan winter), I will walk 3-5 miles. If I exercise...  moreThank you for your response. I'm seeing a new therapist to relearn manual lymph drainage. I have another question, I walk 100 laps in a pool, 4-5 days a week, and when it's not too cold outside, (Michigan winter), I will walk 3-5 miles. If I exercise more will...    

    • February 11, 2016
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    Staff Certified Lymphedema Therapist Sue, exercise is very important in maintaining lymphedema reductions and it seems like you are doing very well here.There is no exact formula for exercise as everyone swells differently and responds differently to therapy. You need to judge for...  moreSue, exercise is very important in maintaining lymphedema reductions and it seems like you are doing very well here.There is no exact formula for exercise as everyone swells differently and responds differently to therapy. You need to judge for yourself how...    

    • February 17, 2016
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  Sue Kenyon is now friends with Ellen Schack.

  • January 29, 2016
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  Sue Kenyon I have a question, I have plantar fasciitis in my right foot which is also my lymphedema leg, and with my lymphedema getting worse could the two be related? I'm desperate for a solution and a fix. Any advise would be greatly appreciated. I just got new...  moreI have a question, I have plantar fasciitis in my right foot which is also my lymphedema leg, and with my lymphedema getting worse could the two be related? I'm desperate for a solution and a fix. Any advise would be greatly appreciated. I just got new wraps and compression. My OT/PT has no explanation for the recent swelling that won't go away.   

  • January 25, 2016

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    Staff Certified Lymphedema Therapist HI Sue, yes, your lymphedema could be aggravating the plantar fasciitis for sure. Have you seen your doctor recently to check to see if something else is not going on that may have caused your swelling to suddenly worsen? Lymphedema can be very...  moreHI Sue, yes, your lymphedema could be aggravating the plantar fasciitis for sure. Have you seen your doctor recently to check to see if something else is not going on that may have caused your swelling to suddenly worsen? Lymphedema can be very stubborn and may need ongoing maintenance in the form of weekly MLD. I have seen many...    

    • January 28, 2016
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    Sue Kenyon My doctor sends me to the OT for therapy and my OT doesn't know why my swelling won't go down. I massage, wrap, exercise and nothing seems to help. What is MLD? I see an oncologist because of my cancer history. Is there a different doctor I should see?

    • January 28, 2016
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    Staff Certified Lymphedema Therapist MLD is manual lymph drainage. Lymphedema can be stubborn, like I said before, and if there is no active cancer causing a blockage somewhere in your groin/abdomen, then you just may need to just keep up with your current routine and know that over time...  moreMLD is manual lymph drainage. Lymphedema can be stubborn, like I said before, and if there is no active cancer causing a blockage somewhere in your groin/abdomen, then you just may need to just keep up with your current routine and know that over time you will notice subtle changes. Your leg may never look like the other one again and...    

    • January 29, 2016
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    Sue Kenyon I'm going to learn patience through this process! Thanks for the response. I haven't given up!

    • January 29, 2016
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  Sue Kenyon Any opinions on using magnesium oil? I'm determined to get exactly matching knees! My massage therapist is suggesting applying to the skin. 
  Thanks!

  • January 21, 2016
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  Sue Kenyon Can cold weather affect lymphedema? I live in Michigan and my lymphedema has flared up and I can't seem to get it under control. I've battled this "issue" successfully for 2 years, I'm very active and that seemed to control any swelling. I did...  moreCan cold weather affect lymphedema? I live in Michigan and my lymphedema has flared up and I can't seem to get it under control. I've battled this "issue" successfully for 2 years, I'm very active and that seemed to control any swelling. I did fine last winter, snowshoeing in the snow and cold, however this winter I'm struggling! Is it time to move to Florida and grass fairways???  

  • January 20, 2016

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    Staff Certified Lymphedema Therapist Hello Sue, I have heard from some of my patients that the cold weather makes their edema worse. The one thing that you can do is to make sure that your current compression garment fits properly and is current. A typical life span for a garment is...  moreHello Sue, I have heard from some of my patients that the cold weather makes their edema worse. The one thing that you can do is to make sure that your current compression garment fits properly and is current. A typical life span for a garment is between 6-8 months. You may want to see your therapist again for new measurements and a new garment in order to keep your edema...    

    • January 21, 2016
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  Sue Kenyon Any opinions on diet. What to eat and what to avoid. Avoiding salt seems like a no-brainer, any other ideas. I found part of a book, Lymphedema and Lipdedema Nutrition Guide, on the internet. Their no list includes: wheat, red meats, pork, fried foods,...  moreAny opinions on diet. What to eat and what to avoid. Avoiding salt seems like a no-brainer, any other ideas. I found part of a book, Lymphedema and Lipdedema Nutrition Guide, on the internet. Their no list includes: wheat, red meats, pork, fried foods, ice cream, all sugary snacks, sweeteners, condiments, and drinks. I'm working on getting my BMI to 25, I'm now at 27.  

  • January 13, 2016
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  Sue Kenyon → Lymphedema Community Staff: I'm 61 years old and I have had lymphedema in my right leg since uterine cancer surgery, January 20, 2014. The type of cancer was very aggressive so the surgeon removed 14 lymph nodes in my pelvic area. Until a month ago, I have managed my lymphedema...  moreI'm 61 years old and I have had lymphedema in my right leg since uterine cancer surgery, January 20, 2014. The type of cancer was very aggressive so the surgeon removed 14 lymph nodes in my pelvic area. Until a month ago, I have managed my lymphedema pretty well, my leg would swell during the day, but after bandaging at night it would appear to be almost normal size. My leg has swollen from near my toes to 4' above my knee. I wore compression socks up to my knee and I walked at least 10,000 steps everyday, I also walk 100 laps in the pool 3-4 times a week, I've also tried riding a stationary bicycle. But, nothing seems to help. I'm seeing a PT but she seems mystified as to why the swelling will go dramatically up and down in a week's time. For example, she measured my leg from 7 reference points, one week the total difference in measurements was down 6", but one week later it was up 7 total inches. I've now been on a low-carb, high-protein, low-salt diet for a week. That seems to be helping, but I admit I'm getting rather impatient for prompt results. My PT is suggesting a compression garment that uses velcro. Does anyone have any suggestions? Thank you.  less

  • January 10, 2016

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    Staff Certified Lymphedema Therapist Hi Sue,
    Lymphedema can fluctuate from day to day depending on your level of activity and whether or not you are consistently wearing compression. You sound like you are very active which is great! I would tell you to stick with the therapy multiple...  moreHi Sue,
    Lymphedema can fluctuate from day to day depending on your level of activity and whether or not you are consistently wearing compression. You sound like you are very active which is great! I would tell you to stick with the therapy multiple times per week, learn to self bandage, and get ready to be fit for a proper fitting garment. If you are swelling above your knee than you need more than a knee high garment, most likely a thigh high. Best of luck to you!  

    • January 11, 2016
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    Sue Kenyon What should I be doing at night, the self bandages or the velcro type of garments. I feel like my biggest problem is the inconsistency of self-bandaging. Sometimes I take it off during the night because my toes are numb, other times I wake up and the...  moreWhat should I be doing at night, the self bandages or the velcro type of garments. I feel like my biggest problem is the inconsistency of self-bandaging. Sometimes I take it off during the night because my toes are numb, other times I wake up and the bandage that was around my thigh has fallen and is now around my knee. I'm looking at the Circaid Juxta-fit for the ankle, lower leg, knee and thigh. Should I wear this at night? And, what is your opinion on diet.  

    • January 11, 2016
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    Staff Certified Lymphedema Therapist Hi Sue, the Juxta fit is an excellent garment for nighttime use and it can also be worn during the day if needed. As far as diet, I work with a nutritionist at my facility who makes recommendations for people. Of course, if you are overweight, than a...  moreHi Sue, the Juxta fit is an excellent garment for nighttime use and it can also be worn during the day if needed. As far as diet, I work with a nutritionist at my facility who makes recommendations for people. Of course, if you are overweight, than a good diet is important for keeping your leg edema under control. Great job doing self bandaging BTW! I know this can be a challenge for people, but just knowing that you are capable of doing it is great! It's another tool for your tool box!  

    • January 12, 2016
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    Robert Weiss Specifically, what kind of compression do you wear during the day? You mention "compression socks". These typically are elastic and do not go up to or over the knee, and you are exhibiting swelling above the knee. It sounds to me that you should ask your...  moreSpecifically, what kind of compression do you wear during the day? You mention "compression socks". These typically are elastic and do not go up to or over the knee, and you are exhibiting swelling above the knee. It sounds to me that you should ask your therapist (who must be lymphedema trained and certified) whether you might benefit from a non-elastic, thigh-high, flat-knit stocking.  

    • January 17, 2016
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    EDEFER DELA CRUZ sue take is easy with the exercises you might be overloading the lymphatic system by overworking the Lower extremities. There are remedial exercises , elevation and compression garment that must suit you. I the nursing home where i work especially with...  moresue take is easy with the exercises you might be overloading the lymphatic system by overworking the Lower extremities. There are remedial exercises , elevation and compression garment that must suit you. I the nursing home where i work especially with the elderly we put a liquid limit a day it is MD ordered its called fluid restriction protocols. And always consult your MD . i work closely with MD specialist and Wound care MD when i work with cases.  

    • February 7, 2017
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  Sue Kenyon has just joined the community. Say hello!

  • January 8, 2016

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    Lymphedema Community Staff Welcome!

    • January 8, 2016
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