Surgery with Dr Chang…. Liz… Chicago

imageThis is an update from Liz about her surgery with Dr Chang… It sounds like it has gone very well..

“My Surgery is completed!!! My surgical date with Dr. Chang was on June 19 and I am back home now and the waiting game begins. I will start at the beginning of my surgical journey and hope I can answer any questions anyone may have.

My husband and I arrived in Chicago on 6/17- on 6/18 I was scheduled for 2 appointments-one with the Lymphedema Therapist to measure my left leg as compared to the good leg; the second apt. with Dr. Chang. Both appointments were short and to the point and then we went back to the hotel room which was right on campus-the Quadrangle club. We were within walking distance to the hospital. I did not want to stay in downtown Chicago because the trip up to the medical center was a distance by cab and I was afraid of arriving late for appointments or better yet, I did not want to arrive late on the OR date!!. Furthermore, the Chicago Blackhawks won the Stanley Cup that weekend and it would have been chaos cabbing it up to the medical center.

All day on 6/18 I ate light because I was nervous; my last bite of food ending ay 8pm. On 6/19, at 5 am my husband and I walked to the hospital (about 3 blocks). Everyone was helpful and courteous-a new modern facility-courteous, professional service-everyone was very helpful and calming. I was escorted to the pre-op area where I changed into the OR gown, had an IV inserted into my arm and answered questions, while my husband stayed in the skylab area (7th floor). The gave him a “ringer” like they give you in “Outbacks” (to let you know when the table is ready) it is given so that the hospital staff can let the family know the progress of the patient. Once my pre-op tasks were completed, they allowed my husband to come to my floor to be with me. He was escorted by a patient representative-they were all so thoughtful and professional.

Finally, at about 7 am the anesthesiologist and residents came over and eventually took me into the OR. I said the Lords prayer in Greek as they were wheeling me into the OR!!! Next thing I knew I was in the recovery room- the surgery took about 4 1/2 hours-Dr. Chang did a LNT, and 2 lympho-venous bypasses below my knee. I had no incisional pain at all- I had 1 Jackson Pratt (JP) drain in my right neck and 1 JP drain in my left groin hooked up to a Doppler so we could hear perfusion of the lymph nodes. The only pain I had post operative was a severe anesthesia headache and some nausea. I was treated for the nausea with an IV antiemetic, Zofran. The headache persisted from 1 pm till 8am the next day-they could not give me anything for the H/A (not even Tylenol) because they did not want me to have anything in my stomach in the event I had to go back to the OR. Finally, morning came (6/20), and I was beyond hungry -it had been 36 hours without any food or water-LOL -I ‘room serviced’ almost everything on the menu-(not really)-all I can say is they did finally give me some Tylenol and about 12 hours later the world was a better place-my husband googled anesthesia and the first side effect is headache- so then I understood. I did not have any incisional pain at all. From the first touch of my calf, it felt soft to touch–that was such an emotional lift!! it brought tears to my eyes. The leg was wrapped with the comprilan dressings and the Doppler continued making swishing sounds all night long. The doppler was connected to my left groin. By morning, the foley catheter (which collected my urine) was removed and I was allowed to get out of bed and walk to the bathroom- I would disconnect the Doppler and walk to the bathroom. When I returned to bed, I would reconnect the Doppler. Now it was Saturday morning, 6/20. I was getting antibiotics through the IV for prophylaxis, and IV fluid but within 12 hours, the IV’s were discontinued because I was eating and drinking. On 6/21, the PA came in to see the leg and unwrapped it- when I saw my leg for the first time, I was really thrilled at the decrease in the measurement from the knee down to the ankle. Dr. Chang said I was a prime candidate because I had been wearing compression garments for the last 3 years and also using a nighttime garment and the LE was controlled. I have worked very hard in all aspects of this chronic disorder and all I want is my life back to some sort of normalcy. While in the hospital, I would disconnect myself each hour from the doppler and walk up and down the entire corridor- I figured the corridor length was approx. 1/8 of a mile and shaped like a horseshoe; it was not difficult.

From the groin to the knee it will take from 6 months to a year or maybe longer to see a difference. Depositing a lymph node into a new spot is like putting a seed in the ground-flowers don’t spring up immediately it takes a year or two to see growth from that seed–the lymph node is the seed and it grows over time to become a channel of roots and stems. On 6/22 I was Discharged from the hospital-one drain was removed that day. I still had one drain pinned to my t-shirt but I didn’t care. We took a bus into Chicago and walked a good distance. We even went up to the top of the Trump Tower and had cocktails! On a pedometer I brought with me from home, the distance we walked was about 7 miles each day-not speed walking but casual walking. We stayed at the hotel on campus until 6/25. My last appointment with Dr. Chang was on 6/25. He checked the drain sites and removed sutures in the groin-by now both drains had been removed.

It was an uneventful experience-Thank God. Meaning, what had to get done, got done without complications-now, all I have to do is wait for the results. I feel I have done all there is to do for this disorder and it is time to get on with my life.

I am thanking God for His guidance and standing by my side through this long journey- I know that I would not even know Dr. Chang’s name if it were not for this fabulous blog site-I believe God led me to this blog site and allowed me to gain knowledge and humility from all of the fabulous and heartfelt stories I have read over the last 2-3 years. Thank you all for your prayers during my surgery. I am praying for you all as well.” Liz

Thanks Liz it is good to hear that you are going so well… It sounds like a very positive experience.. Thanks for sharing with everyone ..Helen

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62 thoughts on “Surgery with Dr Chang…. Liz… Chicago

  1. Hi Liz
    Great to hear how well your surgery went and thanks for taking the time, it really helps to hear people’s stories as I consider this surgery option. Just one question, you mention the LNT was below the knee but also that there was a drain in the groin. Did nodes go in the groin as well or is that drain for some other purpose?
    I hope you get the best possible outcome from this surgery. All the best.
    Michelle

      • You are correct, Helen-Dr. Chang told me that he used to only do the LNT to the groin but then he found patients would come back to him 6 months later saying they “wish more drainage had occurred”.Then he started doing both procedures, LNT and lympho venous bypass so there would be greater drainage -I asked Dr. Chang when would they start using Stem Cells instead of lymph node transplants. He said there was not enough research done on stem cells as yet.

        • Yes the stem cells and also the growth hormones have a long way to go yet… The fear is that they could cause more cancerous growths if they keep multiplying, research needs to be done into how to control this…but it is good to see research in this area.. Helen

    • The lymph nodes that were transplanted from my right clavical area were placed in my left groin only. Below the knee what Dr. Chang does is called a Lympho venous bypass. He connects your own lymph vessel to your own blood vessel to promote drainage of the lower leg, ankle, and foot. I had a drain in my neck and another drain in my left groin. Neither was painful and neither drain drained much fluid. By 6/22, the groin drain was removed; on 6/24, the neck drain was removed. If you have any other questions please feel free to ask. I hope I answered your question. Thanks, Liz

    • Hi Liz my daughter had the same thing done the week before you and the opposite leg hope thing are still going well for you. I have one question where and how do you find shoes does it affect your foot? That is my daughters one hope that she will be able to wear shoes just like everyone else and have a lot of them

      • The one thing I realized is that the shoe length didn’t change, meaning I still wear the 7 1/2 but my left foot is more swollen and the right is not—so a 7/1/2 medium on right foot and a 7 1/2 wide on left foot–I continue to wear a wide sneaker to work because they “give and stretch” and fit both feet. I am hoping that I will eventually be able to wear an occasional pair of pumps (instead of sneakers) but I think I’ll always have to wear compression stockings..It is difficult, but in time, I’m hoping my left foot is less swollen. I’m sure it is difficult for your dtr but tell her not to lose hope..things will improve–I am waiting too. Prayers to both of us..LiZ

      • Carly,
        Tell your dtr that one day she may be able to wear her shoes again so do not throw them out–I have done the same thing—I have kept all of mine in the hopes that I may be able to wear them again someday—Hopes reign’s supreme!!!!

    • Helen, I am not sure where to write this message but now that I have read some of the other entries, I realize that maybe, just maybe, the day will come where I can go a few hours occasionally when I do not have to wear this Elvarex compression stocking—When I had asked Dr. Chang this question back in June, he was non committal. I am happy to read that others who have had the LNT surgery are going a few hours without the stocking 14 months post surgery–how wonderful—-something for me to strive for too—-Liz

  2. Hey Liz! Thank you for your story! Wish you all the best with your recovery!! The start sounds really good! Did you have a big difference between your legs? As they out the nodes in the groin i suppose the difference was situated in upper leg?Take care!!!

    • The difference in the size of my leg was my left thigh was about 2 1/2 inches bigger than my right thigh; the knee and calf were about 2 inches bigger than the right leg which is still normal-thank God. Lets pray that the lymph nodes that were placed in my left groin will develop nice long and strong lymph channels/vessels and my leg will reduce in volume. Liz

    • The difference was about 2 inches bigger all the way down my left leg—Dr. Chang did a LNT from right clavicle to left groin and 2 Lympho venous bypasses in left ‘shin’ area. Today, I was kayacking in a river with my husband and I was trying to make up a song to sing to my lymph nodes so they will grow quicker…LOL

      • Good morning everyone,
        This is week 5 post op from Dr. Chang– I will be going for re-measurement of my left leg this week and I was told that prior to going for re-measurement, I should make the leg be as small as possible, so that I can get the max amount of support from the new Elvarex for which they are measuring me. The therapist told me to make sure the night before going I use the flexi-touch, then put on the quilted night time garment on and on top of the quilted garment, wrap the comprilan wrap around the quilted garment…..I should go to her the first thing the next morning while I still have the comprilan wrap on so that I get measured at my lowest possible measurement and in this way, give full support to those new lymph nodes which are growing…..Wow–I guess they know what they are talking about..I even passed that by Dr. Chang’s therapist, Betsy.
        By the way, I got my estimation of benefits, (EOB) 2 days ago for the cost of the surgery…anyone have any guesses on the cost of this surgery??? Thank God for insurance…
        That is my plan for this week–the hottest days of the summer -in the mid 90’s..AND I have jury duty on Thursday—lol–keep on keeping on….Liz

  3. I had a very similar experience a year and a half ago in New York City with dr Dayan and dr smith. An Mri shows 12 thriving lymph nodes and vessels! I had neck to calf transplant! I’m happy with my results and continue to improve. I’m a very active and compliant person and I feel it helps. I’m happy to hear that others are pioneers in a much needed fight for a cure for lymphedema!!

  4. Wow….God bless you! I thank everyone for sharing their stories. I have leg lymphedema….”well controlled” because I work my a*% off keeping it that way….do not know how I will do this much activity and work to control lymphedema when I am older and cannot move as well. Want to try the surgeries, but live in Canada, and would have a hard time getting coverage. Anyone out there that have comments or suggestions, I would appreciate them. I would see Dr Chang, as they are closer to me where I live in Southern Ontario. Thank you again everyone, it is so helpful to hear. Dolores, did your 12 lymph nodes grow from transplants? God bless you all!

    • I think over the next few years we will see more and more surgery and hopefully in Canada too… I am sure there is a need their as well as the US… In the past two years there has been an increase in drs specialising in surgery for Lymphedema and now we are starting to see results …. Helen

      • Thank you for your reply! I do hope to see this in Canada, but I hope I am not too late to get it, in the course of my disease. Too expensive for me to have at this time. Take good care, D.

    • Delores, since I started following this blog, (2013) the number of people who have had this procedure is stunning. I am like you in that I worked my BUTT off in caring for my leg. I never allowed my weight to increase, I continued working out at the gym, but always aware of my leg thinking the “whole world can see the edema!”. The funny thing about that is that no one ever said ,”Wow, your left leg looks bigger than the right”–no one was looking at my legs; they listen to your voice, they look at your face, your expressions, and your arms–they are not looking at your legs– but I felt the LE night and day. I felt it with each step I took. At the end of a 12 hour shift in the hospital, when I would come home and pull off the Elvarex, my left leg (especially the calf) would feel like a rock-very hard–The good thing is that there was never any pain–thank God-
      One of my biggest frustrations was that I couldn’t wear a dress or a skirt or a pair of sandals in the summer because of the swelling in the left foot/ankle/calf/thigh—it was a visible difference. I lived in slacks, maxi dresses, and sneakers,(since they expand) and my hospital scrubs. The freedom of my life changed. The joy of getting a pedicure ended-I was afraid of getting an infection in that foot; I had to plan in advance what I was going to wear; the freedom of just “throwing something on” changed. Now, I had to think of which compression garment to wear and would it fit under the pants I wanted to wear. One leg was normal and the other leg under a pair of pants looked ‘more snug’. I hated putting my bathing suit on but when I would do it, I would wrap a towel around myself until I was at the edge of the pool and then jump in….not life shattering mind you, but difficult and frustrating because I did not have anyone to share anything with–until I found this life-saving blog–Like the heavens opened and I could see light……I remember the jubilation in my voice when I told my husband, “Guess what? I found this blog and other people have the same thing I have–!!”
      Don’t worry, Before long Canada will be on board with this procedure.

      Do you know that the machine I use for the MLD was not approved by my insurance until I used a lesser piece of equipment for a year first? Is that ridiculous? I wrote letters and sent pictures of my leg repeatedly until I think I wore them down!!! The machine is by flexi-touch and it cost $7800.00- my insurance co. would not approve it until the clinical guidelines changed in Jan, 2014. Finally it was approved and I was responsible for $2100. of the cost. Still a lot of money but at least I was only responsible for the $2100. They allow you to pay installments on the balance. I was so very grateful, but what a hassle.

      I continue to say that the LE does not control me, I control the LE. Lymphedema does not define who we are as people-WE help to define the Lymphedema and create pathways for others. Stay strong-you are on your way-Liz

      • Liz
        What you described regarding clothing situation is just like me. I have been going through the same situation.
        I finally got so frustrated I started wearing black leggings to the gym and so far no one has seemed to be looking at my leg and commenting on the difference. I also now wear sandals in the summer with open toed beige compression stockings even though my foot and ankle are swollen because to me it just looks like maybe I twisted my ankle and I just have on something for that so I don’t feel as much like a freak. But then I got even more brave and if I’m on vacation and know no one anyway I wear longer capris! The bottom of my leg shows but I decided to do it anyway because it’s cooler for me! It was so freeing. No one has commented though obviously they can see it. If anyone did ask I would have the opportunity to educate them about lymphedema as I have with sales people when I buy pants!
        But oh, I would love to have that surgery !! I called Dr Chang’s office yesterday and the assistant James was so nice. And he sent me a few questions to answer. I still want to speak to Dr Rockson who I see at Stanford again at the end of summer. I am just a bit reluctant to have another surgery. But boy would I like this to be less swollen!

        • Pam,
          I wear a brand of black leggings that I buy from a company on line called Backcountry.com -they are compression tights for people who have varicose veins or other circulation problems.The lymphedema therapist recommended them to me so that I could still have compression on my legs while I go to the gym. I have been wearing them for about 3 years.
          About 2 months ago before I went to Chicago for the surgery, I decided to wear my Elvarex under the compression tight from backcountry. My thinking was that it would be good to have even more compression on my leg while I exercised. I’m not sure if that is true but I can email the LE therapist and ask her and get back to anyone interested. I have not gone back to the gym yet-Today is12 days since my surgery. I will behave myself for another 2 days and then I’ll go back to the elipticle machines in the gym!! I’m sure it is OK at this point.

          I never wore the toe-less compression stockings–I have read of other people on this blog site whom have worn them but the LE therapist here in CT. said that wherever compression isn’t applied, that is where the LE goes. I was also wondering if the stockings ride up the leg or do they stay on your foot? This year I would like to try these toe-less stockings–thank you for the tip–Liz

          • I do wear my compression stocking under the leggings that I wear to the gym. And I also just ordered but have not yet worn (except trying them on) some compression leggings by Solaris.
            They are 20-30 so I have not been sure if it’s going to be ok to wear them but they are massage ones that are supposed to keep working even when you take them off.
            Regarding the open toe, my therapist said it was fine because there is no compression in the toes of the compression stockings anyway and it keeps you cooler. (Note: I DO have lymphedema in my toes and have since it started)
            Thus the sandals look better since you can see your toes. I love it! Changed my summer attitude once I tried it.🙂

            • Yes, me too-LE in the toes of the left foot–how bazaar–lol oh well–my tights from Backcountry feel like they are 20-30 also but it doesn’t state it on the garment. It feels like the amount of compression in the tights that I work out in mimicks the compression in the jobst compression panty hose–But you say your compression leggings are 20-30 by Solidaris? good to know- I use the Solidaris green quilted bed time garment when I sleep-I didn’t know Solidaris made a compression legging..excellent-I will check it out tomorrow-I am always open to something new. I will also order the open toe panty hose. What brand compression panty hose do you use? Do you use Jobst 20-30 open toe? I don’t know of another brand of compression panty hose. A pharmacy down the block carries the Jobst. The colors are not my favorite but in time, I think they will improve. Great info—yes, you are correct- it is all about changing your attitude!

      • I am enjoying so much to see the interaction here with everyone… Yes clothes i think we all have an issue with that.. And true people do not notice but we are very aware of our legs being different.. We do the best we can xx Helen xx

  5. What an image you described! Wonderful!!
    “Depositing a lymph node into a new spot is like putting a seed in the ground-flowers don’t spring up immediately it takes a year or two to see growth from that seed–the lymph node is the seed and it grows over time to become a channel of roots and stems.”
    I wish you all the best with your recovery.
    – Jennifer

  6. So happy everything went well for you (other than the headache). I also had a lymph node transfer to my right leg last December. Wish I would have had the bypass around my knee area. That area is still troublesome. Unlike you, I wasn’t able to put my full weight on my leg for 2 weeks. Are you wearing a garment or still in bandaging? Was your lymphedema only in the lower part of your leg? You sound so happy. It’s exciting when we feel like we have some control over our condition.

    • Cindy, the Lymphedema was the entire left leg- About a 2 inch increase down the entire left leg-now that the surgery is over they want me to continue wrapping the leg for the next 2 weeks and then I can start to wear the same compression garments I wore prior to the surgery which is the Elvarex 40 mm of mercury. compression but as the limb decreases in volume, I can get re-measured for a smaller size—Music to my ears!!!!!

      • Liz,
        I wear the same garment. My leg is doing great. Had a little pitting below my knee. Wish I had something done on that area too. It was such a battle to get the first surgery, not sure they would approve anything else. I’m open to anything and everything possible when it comes to my lymphedema leg. I live in Vegas and temps have been 112 lately. I still wear my garment daily. When the weather cools, I will try going without it for a few hours. Just the thought of going without it makes me nervous!!!

        • My surgery was in network and I was so grateful that all of the providers were also in network. I’m hoping that this is the last thing I need to do for this leg. It gets tiring after a while- I knew this was my window of opportunity to get the procedure on this leg. I didn’t want an MD to say to me one day, “you should have come sooner-the fibrotic changes are too great and there is nothing we can do!”

          I’m hoping one day the clinical guidelines change and the number of lymph nodes removed for low-grade cancers is reduced and therefore, people like myself (I had stage 1A uterine Cancer–it was the lowest grade of cancer) will suffer less since fewer lymph nodes will be removed. For now, we all have to be grateful we are healthy, alive, and can discuss this with each other while looking for options and solutions. Liz

          • The hospital was in network, surgeon was out of network. The bigger problem was the procedure, they considered it experimental. I needed to file an external appeal and thankfully won. My right leg has the lymphedema. I was also told I had uterine cancer. After they took 19 plus lymph nodes and removed all my female organs, they told me they didn’t find any cancer. Then emergency surgery for an evisceration, then lymphedema. I’m so grateful
            to Helen for starting this blog. 💕👍🏻

      • Hi, I am thrilled for you. I also have similar increase in my left leg due to lymph nodes being removed from my groin and a couple from my abdomen when I had cancer 2007 . I am seriously considering this surgery . I need to find more information. Do you feel you will have your left leg down to the same size as your right leg ? Did he do any lipo to rid it of excess fat cells as I have read sometimes they do this also. Looking forward to reading more from you …best Cindy C .

        • Cindy,
          I understand very well what you are saying. I don’t think it will look exactly like the right leg but it will be close enough. Dr. Chang said, “it will not be exactly like the right one” but remember, doctors always give the patient the worst scenario–As long as it is soft, pliable, and has less volume than prior to surgery, quite honestly, that is fine with me and really, no one is looking that close. Whatever the difference is, in my mind, I KNOW I have done all there is to do for the LE..meaning, if someone is looking that close, who the hell are they? LOL–No I don’t need liposuction—my weight is exactly as it has always been, actually a few pounds less and I think it is because the lymphatic fluid is mobilizing a little at a time since the surgery. There is no additional fat-that is lymphatic fluid that had built up and is now being reduced.

          A funny thing has happened to me psychologically since the surgery. There are 4 phases of grieving. I believe I am in the last phase of grieving which is acceptance. I am hoping I can explain it clearly. Prior to surgery, I never would have worn the Elvarex custom garment with Bermuda shorts, I would only wear the elvarex under a pair of slacks, to hide it–trying my best to disguise my leg—-BUT ……..Yesterday and today, this strange thing has happened to me——and thank God it has happened because I finally feel FREE—ABSOLUTELY FREE (acceptance phase). I think it has to do with the fact that surgery is over and I know I have done all I can do to better my condition. By having the surgery, I have taken the burden off of my shoulders–the burden of thinking, “there is still something more I should do”—Now, that something has been done. I can relax.
          I wore my elvarex. one legged panty to the gym under Bike shorts/I went kayacking today and I wore the elvarex under a pair of regular shorts–NO ONE even noticed and if they did, no one said anything and why would they?–they didn’t know me. I can’t be imprisoned any longer because our lives are too short. I was so hard on myself for 3 full years and I can’t do that any longer. I have no restriction of movement and no pain (I never had any pain)-I go to the gym and I do everything I always did. We as women, think everyone is looking at our one limb that may be a bit swollen…..do you look at a woman who has large breasts or big thighs?? Of course you don’t. WHO CARES??I am very vain like most women but Cindy, we are more than a swollen leg or a swollen arm. I wear the same size I always wore. I am hoping to reduce my left foot so that I can wear a pair of nice shoes and I’m hoping in time it will happen. Patience is the name of this game.
          Dr. Chang has been doing the lymph node transplant for about 20 years; the Lymph node transplant and the lympho-venous bypass he started doing together a couple of years ago for better results. I hope I was able to answer some of your concerns.
          Any other concerns you have, please don’t hesitate to ask. We are all here to support one another. Liz

          • Liz, thank you so much for your reply. I have been religious about wearing my compression stocking from the moment I awake to going to bed . I have a flexi touch machine I use nightly then change Into my flex touch night garment . I elevate my leg when I sleep with a pillow . I think by doing these things I have kept the swelling down a lot. I am so interested in this procedure to further reduce the size ..but scared at the same time it might no work plus I want the best dr to do this , from what I understand there is about 10 in the U.S. That do this procedure ….I guess I would like to see a ranking lol. I wish more people would share their experience if they had this done ….best Cindy

            • Cindy, I started responding to you but in the middle of a entry, I lost the entry—Anyway, you sound like you are doing a good job with maintaining your leg. It is a lot of work and for me, I know how I kept hoping it was all a bad dream and that it would go away-but it didn’t. I knew in time, I would not have the energy to be wrapping and unwrapping and sitting on the floor with my purple platex gloves in front of the fan every day pulling up the Elvarex compression garment. I wanted something more permanent rather than additional conservative treatments.
              I first read of Dr. David W. Chang in this blog. I then researched him- I called the patient rep. James Cao and asked for a copy of Dr. Chang’s publications, research, and statistics. You know I was nervous about the same things you are nervous about..What if it doesn’t work???? But, In my mind, I can not leave a stone unturned. I knew I wanted the surgery because if I didn’t have it, I would feel guilty that I hadn’t done the best for myself. I knew I would always question if I had made the correct decision. I was afraid the fibrotic changes that could be occurring in my leg may not be reversible if I waited too long. I asked Dr. Chang these same questions about the fibrosis— is it happening? Would it worsen if I waited? From what I have read and what I remember Dr. Chang saying is that it could worsen. In medicine, nothing is “For sure” or “Absolute”—
              I had a hysterectomy in 2006 and then I did not see LE until Nov. 2011. In Jan. 2012 I was beside myself with tears and anger and no where to turn. My PCP told me it was not LE…my GYN told me it was not LE—I would say, “Well then what is this swollen leg attributed to-after all you said you took out lymph nodes when I had my hysterectomy? What else can it be?” It was LE but they had never seen it show up 5 years later and that is what stumped them.
              This blog site showed me my first ray of hope. I had LE for 3 years before I went for the surgery….Take your time, do your research–you will come to a decision.
              Once I worked it out with my employment and was able to take a 1 month LOA, I felt secure that I was making the right decision–I felt secure with The University of Chicago Medical Center and Dr. Chang. I was nervous the days before but glad I had made the decision to go for it. I can’t believe it was 5 weeks ago..If you have any questions I can help you with, please feel free to ask. Liz

    • You are so correct, Cindy–all we want is our “limb back”–lol–You have all been such an inspiration to me–I love you all for your kind words–when I read your comments, I smile at how lucky I was to find so many wonderful people who have helped me recover emotionally–made me feel like I was not alone in this uphill battle…..But we must always remember, we are so much more than a swollen limb! We are fabulous, intelligent, anointed, gutsy, gritty, people–we are victors and not victims. We will all get thru this-we have an entire internet of family-How lucky are we??? Liz

  7. I read this carefully because I hope to have the same surgery one day.
    Thank you for posting and I send you good thoughts on your recovery.
    Please post again about your progress.
    Do you still need to wear a compression stocking?
    If so is this temporary or depend on progress?

  8. Hi I had 2 questions.

    I had a Diep Flap breast reconstruction during my breast cancer surgery. Would they have taken out any lymph nodes from my stomach which was used for the Diep Flap reconstruction. Would it have been possible to have used these lymph nodes at the same time for an LNT under the arm?

    Secondly does anyone know what is the true percentage of women suffering from arm lymphedema after axillary node clearance ? I know they say it is as low as 15-25% for women who have had axillary node clearance and radiotherapy. I feel it is a much higher number of women who develop arm lymphedema. Does anyone know the true figures ?

    Thanks,
    Vidula

    • Vidula, From the research I have done and the MD’s I have spoken to I think that even if one lymph node is removed there is always a chance of LE. My mother-in-law had a mastectomy in 2005 and they only removed 1 sentinel lymph node in her axilla, but there still is a chance she could develop LE. Any time the drainage system of the body is disrupted, there is a possibility of the protein rich lymphatic fluid to accumulate and cause LE. I have read that it is easier to control LE in the upper extremities than it is to control leg LE. The reason is that gravity and LE are enemies. The leg is constantly downward and the LE becomes concentrated in the foot and ankles. You are correct in that it is a higher percentage than 15-25 % of patients who have had axillary lymph nodes removed get LE. How many years are they looking back to see if the patient gets LE?

      For myself, my left leg LE started 6 years after lymph nodes were removed for low grade uterine cancer. It varies with the individual. The more lymph nodes removed the greater the risk of LE. Since I have educated my mother-in-law on LE and the surgery I just had, she now lives in Fla. and she sees people with “big arms” and she asks them if they know of the treatment that now exists for LE patients.. God bless her. Spread the word for anyone who wants to listen. I hope I have helped you a little. Liz

  9. Hi Helen and Liz,

    I greatly appreciate both your replies and thank you very much for the same, they have provided me with some insight into my queries as has this very helpful blog.
    I feel a little disheartened that during my Diep flap surgery i was not informed that the lymph nodes from my stomach could be transferred to my underarm, i am sure they must have removed some along with the flap from my stomach , so that was a waste.
    I have had lymphedema of my arm for the last 4 years , but have never worn the compression sleeve, i am highly unable to do so, think it is a mental block. I do go to a therapist once a month for MLD. I do occasionally get a lot of aches and pain in the arm but choose to ignore it. Perhaps it is unwise to go without the sleeve but i feel it is absolute torture to wear it. I was thinking of investing in the physiopod portable Deep Oscillation machine. Has anyone heard of it and particularly does it help with lymphedema ?

    Thanks again everyone and I have to say this is a very helpful blog on lymphedema.
    Vidula

    • I have heard of this machine but I have never tried it.. Bandaging, MLD and compression garment are the only tried and tested ways of helping the lymphedema…. A course of bandaging to get the arm to its smallest size and then wearing a sleeve… Without this the Lymphedema will gradually get worse …. The LNT are new surgeries and some doctors would not know about it as it is a specialist treatment and only certain drs have experience to carry it out… Helen

    • Vidula,
      I have 2 machines -the first one, (the cheaper one- about $1500.) called a bio compression boot-model 3008 (8 compression chambers), was approved by my insurance company but it was not what the vascular surgeon here In Connecticut wanted to me to use. When I told the doctor that the approved boot was not the one he had wanted to me to use, he was angry but understood that insurance companies want to get off cheap. I was told by my insurance company to use the bio compression boot for a year and then they would re-evaluate my case. I did that. I used the boot every night-you put your leg into the boot and zip it up-it goes up your leg and around your abdomen. You push a button and the machine starts to inflate around your leg causing compression and pushing up the fluid from the toes to around the abdomen. It does soften the leg. I used that boot from September 2012-Oct. 2013

      In October of 2013 I started my next uphill battle for the Flexi-touch machine by Tactile Medical, which was the machine my vascular surgeon wanted me to use in the first place. I wrote a letter and took pictures of my left leg and faxed them to Anthem. I told Anthem what they had told me the previous year which was, I needed to use the cheaper apparatus for a year and then they would re-evaluate my case. They said they would review everything and get back to me. I got the name of the person I spoke to and each week I would call and inquire as to the progress of my case. Finally in Jan 2014, the clinical guidelines changed and Anthem approved the Flexi-touch apparatus for me. The cost to Anthem was $7800. –my responsibility was $2100. and I would own it. The Tactile Medical company allows you to make payments until the $2100. is paid. It is a machine used to mimic MLD-very mild compression that gently starts at the toes and goes up the leg and around the abdomen. It is programmed for a 1 hour run each time you use it. It is the machine of choice for lymphedema since it is a gentle massaging all the way up the leg and to the abdomen. It does not eliminate lymphedema but it does soften the extremity like MLD does. You still need to use the compression garments. I’m hoping these explanation help you. I was so frustrated when I tried to get the equipment needed to properly maintain my leg. I would have done ANYTHING to get back to normal. Now I deal with it and get whatever I need to maintain the LE. I am praying my last stop was the surgery. The truth is I will still have to use the compression garments to support the new lymph vessels that are growing. The difference is that I hope the eventual reduction in volume will allow me to wear clothes without my one leg being visibly larger than the other. I am grateful that I could have the surgery and that I can help others by passing on whatever information/experience I have had. I hope this has helped you. Liz

  10. I am now 2 weeks and 2 days post surgery and Dr. Chang denied my email request to go to the gym!!!—Oh well-I had to try—I am allowed to go for a 2 mile walk and “build up to a 4 mile walk” but no gym yet–I have told him that the day I was discharged from the hospital my husband and I went into Chicago and walked at least 5 miles (I wore a pedometer)–it was a casual 5 miles but it was still 5 miles. Hey, I have to listen to him. I really respect his professionalism/ability and I believe I can be and want to be the poster child for LE. I pray every day for the best possible outcome for all of us and LE relief for all of my new found friends on this blog.
    The golf ball size swelling I had at the base of my neck where lymph nodes were removed has decreased in size and for that I am very grateful. It was a small accumulation of fluid which was reabsorbed into my own blood stream without any intervention at all– just patience. Every day is a new beginning for all of us including my lymph nodes–lol–Just like I talk to my beautiful blue hydrangeas which have decided to bloom this year because we have had some rain, I also talk to my new lymph nodes which I hope are growing big and strong in my groin….God, I sound crazy but I’m just really excited!! I am hoping to generate excitement and proactive behavior in everyone who has LE–we are at the dawning of a new frontier for LE care..More providers are hearing of the procedures being performed–More insurance companies are approving of the procedures. We are a voice–I know this will happen in our lifetime! God bless everyone and keep hanging on. Liz

      • A little difference but not as much as there was when the therapist initially unwrapped my lower leg when I was in the hospital. At that time, I had been off my feet for 48 hours, my feet were elevated and when she unwrapped me for the first time, the lower leg was soft and quite a bit reduced. Now, I walk around the house with the leg wrapped but when I unwrap it to shower, it doesn’t look as good as when she unwrapped it. I guess these are the “ups and downs” people talk about. I just have to keep on believing and staying positive-It has only been 2 weeks and 2 days…not long enough for anything to happen yet. Tomorrow, I have an apt with a LE therapist and she will review the wrapping and I suppose she will measure me. I think as long as she avoids the suture lines, she can do MLD. I’ll keep you all updated-Now it is time to have a conversation with the lymph nodes–LOL

  11. Thanks Helen and Liz for replying. Liz I wish you all the very best and hope you have the most desired and the best outcome of your surgery. Yes , you have inspired us greatly.
    Vidula

    • We are now into the very end of week 3–This Friday makes it 4 weeks since the surgery for LNT and LVB with Dr. Chang. The good news is the ‘wraps are off’–YAH–now I am back to wearing the Elvarex during the daytime and under my workout tights to the gym. I will also wear the Elvarex to work under my scrub pants. I have seen the LE therapist here in CT and she did the MLD (also called the Complete Decongestion Therapy) on Tuesday of this week. That felt wonderful.Tomorrow with will be my first day back to the gym in 4 weeks.

      I have been in touch with Lisa, RN at Dr. Chang’s office to ask a few questions and I have also sent emails to the LE therapist who works with Dr. Chang. I just needed a few things clarified. They did get back to me quickly. I should not be expecting a miracle overnight-within the year there will be changes and a reduction in volume. At least I have something to look forward to. All incisions have healed-I use the flexi touch apparatus at night and then I wear the quilted night time garment to bed. When I wake up in the morning, the leg is soft. I then apply the Elvarex again and go about my day. I know I can not obsess about this. I have to let my body just do “it’s thing”–whatever that may be. I know in my heart I have done all there is to do for the LE and now it’s time to let my body take over and grow the ‘long roots of the lymph nodes’–lol-You have to have fun with this once in a while…On the discharge instructions it is stated that in a couple of weeks, I should get re-measured for new elvarex but I really don’t think I need to–the same size Elvarex I wore before my surgery are the same ones I am wearing now–they are still as difficult to get on now as they were then. I sit on the floor with my purple Playtex gloves/turn on the fan/ and sweat as I struggle to pull them up and fit them into the groin crevice!! OMG that was descriptive!!LOL. I’ll figure it out as I go and I always know I have an fabulous back up system when I need one. Someone out there from this blog will have an answer if I need one. You are all very warm, sharing, caring, people with a wealth of knowledge to share.
      Tomorrow, I’m hoping the gym feels wonderful- My husband tells me to come to the pool with him (a community pool) but I’m not comfortable yet–eventually I will. Here is my one question–what brand of compression panty hose do you wear that can supply you with the same compression as the Elvarex? When I do wear panty hose, Jobst, which I seldom do because they eventually bunch around my ankle/knee/ groin, and I think they are doing more harm than good. I was wondering if anyone else had any ideas about a different brand other than JOBST medical compression?? Thank you-hope to hear soon–Liz

      • Wow you are so amazing to write all this out! I was clinging to your every word!
        Thank you for keeping us up on how you are doing and I will imagine those long roots forming for you and that they will carry the lymph away forever! Lol.
        You are so brave. I admire you greatly.

        As for stockings I have just switched from Jobst. They did same to me getting stuck behind my knee and also in the top of my thigh. I too thought they were doing more harm than good. I now switched to Sigvaris. I like them so much better. They stay up well and they don’t bunch behind the knee (except very infrequently if I’ve been bending over several times.) but basically they stay up way better and go on so fast. My therapist said to lay on the bed against a pillow when putting them on so I don’t hurt my back. Try that. I easily pull them on up to my knee then I put on my lovely and fashionable (just joking) hot pink gloves and work them up over my swollen foot and ankle, not hard to do with these stockings. Then I work them up and stand up and finish off pulling them up with my hands. Takes under 2 minutes! I have hated the Jobst and also Juzo as they are so uncomfortable but these are much more comfortable as 30-40 stockings go!!
        Best to you!!
        Pam

        • Wow-Pam–thank you so much for getting back to me-I spoke to the LE therapist at Dr. Chang’s office today before I saw your entry, and she told me to look at the Juzo because they may be better. Now you say the Solidaris–Perfect–I will try both–anything has to be better than the Jobst–it feels like a rubber band around my ankle/knee/groin. What punishment for sure–lol–you guys are too good and I know I could not make it thru this without you all—I hope to meet you and have a drink with you someday!!!!Love you–Liz

        • I just re-read your entry–I will order the Sigvaris—they sound good—yes, I too want to give myself a break every now and then and wear something other than the Elvarex–I was talking to Dr. Chang’s therapist today about the dilemma with the bunching of the Jobst—actually, when I get frustrated with the emails and someone does not understand what I’m saying, I always pick up the phone and call the person. That is what happened today…I had a phone conversation with the therapist…a very lovely person, Betsy, It was great bonding. I think the best way to bond is to hear someone’s voice; whenever I can, I call…… Love it-Thanks, Pam–I’ll let you know how it works when I get the Sigvaris stockings– I will order the 30-40 mmHg and hope for the best. Thanks for getting back to me—no man is an island–we all need each other. Liz

  12. Pingback: Follow up with Liz.. 8 months post LNT | My Lymph Node Transplant

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