Christine’s surgery with Dr Chang

This morning I posted a video in which Dr Chang talks about the surgical interventions for Lymphoedema. By coincidence Christine contacted me later in the day, she had surgery performed by Dr Chang on the 6th June. Christine was very happy for me to share her story and has also sent me before and after photos. Her leg was bandaged for a week in hospital below the transfer site and the difference in her foot and ankle in this time is amazing. She continues at home with bandaging and MLD and is very happy with the results. She has also become and Advocate for the Lymphedema Treatment act which everyone in the USA with Lymphedema should support. http://lymphedematreatmentact.org/

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This is Christine’s story as always in her own words as I find this best conveys their story.
“I was so excited to find this blog site. I have suffered from lower left leg lymphedema after uterine cancer in 2009. I had a hysterectomy and 19 nodes removed 10 on one 9 on the other. Immediately after surgery I had swelling in the pubic area that would swell from right to left and settled on the left side. Then in 2010 I flew in a plane with a scratch on my left leg and when the plane landed I noticed both ankles were pretty swollen. The right ankle subsided but the left never did. My oncologist sent me to have a Doppler study done to make sure I didn’t have a blood clot. Then I was sent to a lymphedema center for consult. I was diagnosed with lymphedema and had no clue what it was. No one ever mentioned this to me prior to surgery or after. I did therapy, compression hose, bandaging, and flexitouch. Over time the lymphedema progress up the calf, then knee, upper leg and groin.
In 2010 I decided to go back to school and got my BSN. I currently work in the NICU and being on my feet the lymphedema was just completely out of control. I have had to go up 2 shoe sizes just to get one on and 3 sizes in clothes to fit the leg. I only wear long dresses or my scrubs to hide the leg. My leg would swell so bad I couldn’t even bend my knee or ankle. There were times where my skin felt like it would rip open. I have developed bad stretch marks and depression was almost taking me down. I had even told my mom that amputating the leg would be better than this. It was hindering everything about my life. Nothing was working period.
I started researching anything for help. I found articles about Dr. Becker and the lymph node transfer. I flew to California to meet with a surgeon by the name of Ganzow. He said I was a definite candidate for the surgery but he didn’t accept insurance for payment. His fee was $25,000 per cut and told me I would need 3. I didn’t have $75,000 to give him and wait for reimbursement back. He asked me why I didn’t go to MD Anderson in Houston, Dr. David Chang, since I live in Fort Worth. As soon as I got back home I contacted them for an appointment. I had the lymph node scan done with the dye and it showed I had severe lymph blockage as the dye never left my foot on the affected leg. This was done in March 2013. Dr. Chang was a very pleasant and funny doctor. Has a great bedside manner. He informed me that I was a candidate for the surgery and he could do either the lymph node transfer or by-pass which ever I preferred. He said both are good. I told him that I would leave it in his hands to decide and he said that first we have to see what the insurance will pay. Right then I started praying for God to make a way for me. I had my church and everyone praying. I got the call at the beginning of April that my insurance approved BOTH procedures (miracle from God) and Dr. Chang suggested we go ahead with both he was shocked they approved both. Surgery scheduled for June 6.
When I arrived in Houston on the 5th for pre-op I had a scan done to determine the difference in size of my left leg from my right. I was at 24% and Dr. Chang said the leg was a lot worse than when he saw me in March and that he wasn’t sure he would be able to do the bypass procedure. I just told him to do what he could do and we would let God do what he couldn’t. My surgery was at 5:15 am and lasted 8 hours. I had a bad reaction to the dye they used in surgery to view the lymph channels which told them they couldn’t do the bypass. They removed lymph nodes from my neck/collar-bone area and transplanted them to the groin. Apparently I had severe scar tissue that was causing a lot of my lymph problems that they cleaned out before transplanting the nodes. When I woke up I had a JP drain in my neck and groin. I was told not to get out of bed period for 48 hours and I couldn’t put any pressure on the groin site. It had big capital letters with a sharpie that said NO PRESSURE. I was in a lot of pain but I have a low tolerance. I am not a back sleeper I sleep on my stomach so I was pretty miserable. I was allergic to the morphine and was itching like crazy everywhere. I was just a hot mess. I was afraid to look at my leg so I didn’t. I was scared to be disappointed. Then this small voice said you trusted Me for this surgery didn’t you? When they unwrapped my leg bandaging I couldn’t believe my eyes. I had toes that didn’t look like sausages and an ankle bone I hadn’t seen in 2 years. Wow!!!!! I was bawling my eyes out. I can’t thank God enough for this miracle in my life.
I am 24 days post op now and my leg still looks great. My knee and upper leg are still swollen but it’s hard to know what is lymph fluid or just normal swelling from my leg being cut open. My incision on my neck is pretty intense looking but I promise you I could care less. It is beautiful as far as I am concerned!!! I am excited to see the progression and give God thanks everyday for His grace. I will be going back to work on Tuesday for “light” duty. I will keep in touch as to my progression. I am going to therapy 2xs a week for MLD and bandaging. I wear bandaging at night and compression thigh high during the day. I am hoping to get to wear the full compression hose so I can get some relief from the upper leg swelling. All in due time. If anyone out there is considering doing this surgery all I can say is that I just trusted God. Doctors can only do so much. I do think that the government needs to allow people to receive this surgery. Lymphedema is horrible. I am curious as to what you were prescribed to do post operatively about compression to the receiver site. Let me know!!! Christine :-)”

Thank you so much Christine for sharing this with us.. Your account is very open and honest. To answer your question at the end I was not allowed to put compression over the receiver site for a month and as my nodes were placed in the knee I could only wear knee highs. Due to an infection post surgery my recovery and progress went backwards for a bit!!! I am now well on track at 4 months and new scans and MRI to be done at 6 months. Also on my neck scar I use Vitamin E and it has faded very will!!

Below are some before and after photos that Christine has taken and allowed me to share….

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Christine’s photo of her foot and ankle before surgery. This is after she takes her shoe off.

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Prior to surgery Christine’s leg would be very swollen by the end of the day. Photo Christine

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After surgery and a week of Complex Bandaging.. Photo Christine

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Post surgery and a week of complex bandaging.. Photo Christine

Thank you so much Christine and we look forward to your updates… If anyone else would like to share their story please email me on helenbrd@bigpond.net.au or leave a comment at the bottom of this post I can follow-up on.
Thanks… By sharing we help each other…

42 thoughts on “Christine’s surgery with Dr Chang

    • Christine’s story is just what I needed to read!–I wish I could talk to her on the phone–It was a fabulous uplifting story with hope.- I also have lymphedema in my left leg after surgery in 2006. The lymphedema started 1 yr ago in Dec. 2011. I had to convince the MD’s it was lymphedema because it was 6 yrs after my cancer surgery and they didn’t think it was possible to have lymphedema 6 yrs later. I have done all of the conservative measures, ie, MLD 3 times a wk for 3 months, coupled with wrapping the leg in many layers of bandages, a bio compression pump with 8 chambers which I use every night for 1-2 hrs. followed by wearing the “night time garment” which is a thickly quilted stocking that encompasses my entire leg up to my left groin –

      During the day I wear a thick stocking/half panty, which has 40 mm of Mg for compression in order to keep the lymphedema from increasing while I’m on my feet at work. I have to put the compression garment on while I’m wearing rubber gloves in order to make sure it comes all the way to the top of my groin!.

      I am an ER nurse and was able to hide the leg by wearing baggy scrubs to work. I recently discovered Dr. Chang in my search for solutions for the lymphedema- I kept saying to my husband, “I wish I could just cut my left leg off!.” I called the MD Anderson Center yesterday and I left a message but so far I have not heard from them. The psychological pain and impact the lymphedema has caused me is larger than me. No one ever mentioned the fact that there was a possibility of lymphedema after my surgery.. For the last year I have searched the internet for some type of emotional support. Once I started looking into these blogs and read other people’s pain, I now realize that I am not alone. Thank you so much for sharing your story with us. We are your online sisters! I will pursue Dr. Chang because I want to be able to purchase a pair of shoes where I don’t have to use an insert to make the good foot fit the size of the lymphedema foott! I want to be able to wear a skirt again without one leg being larger in diameter than the other one. I don’t mind having to continue to wear a compression stocking as long as both legs are the same diameter. I haven’t seen my ankle in a year. Thank you for sharing your fabulous story with us and giving us hope

      • Hi Elizabeth my Lymphoedema is in my left leg too from surgery for Uterine Cancer.. It started 11 years ago..Yes I can relate to everything you are saying.. I started this blog because when I had the Lymph Node Transfer here in Australia I had no one to talk to.. I could find nothing on the Internet by patients only doctors.. I decided to document my own journey and surgery and along the way I have been able to “meet” others and document there’s too.. I also have stories from Sue and Jennifer.. Different doctors but all leg Lymphoedema.. It takes up to two years for the new nodes to grow but at this time for me there has been a softening of the leg and my ankles are the same size .. I wear compression but only during the day.. I feel the leg responds much better. I have heard that Dr Chan is moving from MD Anderson to a cancer centre in Chicago??? So you should check on that.. Please stay in touch by sharing our stories we give Lymphoedema a voice.. And we help each other .. My email is helenbrd@bigpond.net.au Glad to meet you. Helen

      • Elizabeth, here is really good news for you! – Dr. Chang relocated within the course of Summer 2013 to the University of Chicago Medical Center for Advanced Medicine (Reconstructive and Plastic Surgery http://www.uchospitals.edu/physicians/david-chang.html).

        I was diagnosed with breast cancer (left) in Nov. 2008. Soon, a lumpectomy followed (sentinels: 2pos./2neg), so 3 weeks later a pre-cautionary auxiliary dissection surgery was performed. Ever since mid-January 2009, I have been suffering from severe lymphedema (stage3) on my left arm. Chemo followed, radiation (May-July) didn’t make it better either. I tried everything “Under the Sun”, all types of treatment, but none of these could provide me with any satisfying relief, except “Jovi” sleeve. This was the only garment I could apply and it would at least keep the arm from harding out and advanced fibrosis. Day-use compressions made it way worse, especially around the lower arm and back of the hand (“Popeye”-effect). Every night, the heavily padded JOVI sleeve returned some or most of the fluids, but even after 5 years of religious use, it became clear the progress of the decease will creep up year after year. Its only a matter of time that a tiny injury might cause blood poisoning. BTW, my insurance declined “Flexi Pump” as too experimental, which hit me very hard! I totally agree with Christine’s and your report what an enormous and constant emotional drain this condition is (FYI, the insurance accepted to carry the Reconstruction Surgery!).

        Already in January 2009, I found and signed up for the Lymphatic Research Foundation (recently changed it’s name: http://lymphaticnetwork.org), which is an online forum and newsletter. Last June, the LRF held an online symposium containing extremely informative and encouraging videos about new surgeries Dr. Chang has been developing and was performing in Houston/TX.

        As I’m writing this comment here in a Chicago hotel room, I’m literally just recovering from my Lymph Node Transplant and Lymphatic Bypass surgery he performed last Friday (12/13) after noon. After a 6 1/5 hrs surgery, I spent 3 days as an inpatient. Since I’ve flown in from Seattle for Dr. Chang’s surgery, my husband and I “relocated” to a hotel last afternoon (never mind, drains still attached). What I’m trying to say is, being from out-of-town is fairly easy to handle here.
        I’m feeling and doing very well, every now and then, tears of relief and joy float up, but I certainly will happily wear my scars from any part of this life- and mind-altering and reconstructive, surgery. I feel I am a warrior who will wear this neck scar like a diamond necklace!

        So, please anyone, keep building on this blog’s very helpful information. BTW, although most patients impacted by lymphedema are woman, it’s not gender specific: men can get it too, i.e. while receiving Prostate Cancer treatment.
        Tomorrow, I might be able to report about my first post-op visit.
        Lisa

        • Hi Lisa… Thanks so much for posting about your surgery.. It is so important to share to help educate others and open the way for these new surgeries.. I had My LNT in Sydney in March and started this blog as I could find nothing relating to the patients experience… Would love to follow your progress … Would you be happy to write a post for me to share with others.. Maybe now and then your post surgery follow up … Even just adapting this comment would be good… My email is helenbrd@bigpond.net.au…. So far I have had no posts from those who have had the arm surgery even though this is probably the majority of surgery done at this time… Yes there are men who have this problem too but also no posts from them which is a pity… I wish you well in your recovery… One day at a time .. Rest and heal .. I look forward to hearing from you ..Helen

  1. What an incredible result, only after one week! Did Christine had MLD and bandaging before the surgery? I really hope it continues to improve… Hope to see some pictures after one year… Good luck with your recovery…

    • Thank YOU Christine for sharing. Sorry that you did not find help sooner. In Dallas and Ft. Worth are many well trained and certified Dr. Vodder MLD/CDT Therapists.
      M.D. Anderson is such an excellent place for patients and they also have trained/certified MLD/CDT Therapists. I lived in Houston for a long time and before retirement in CO I was a MLD/CDT Therapist and Instructor for the Dr. Vodder School. HOWEVER I was not aware of this surgery and am ecstatic, that there is so much more help available for Lymphedema patients. A lot has changed since I left the field in 2008.
      God bless you and Dr. Chang and thanks so much for sharing. Best of luck to you for your future, you deserve it..
      Martha Zenger

      • Yes the future is very exciting for those with Lymphedema..,MLD and Bandaging will always be used but the surgery may give some great on going results in the future.. The nodes grow new lymphatic vessels over years…,thanks for your comments…Helen

  2. Thank you Dr. Chang, you and your staff were awesome. Christine has had a wonderful life, even during the time with lymphedema. But now we can live a normal life!!!!! Thanks for all the prayers. THANKS BE TO GOD
    I love you my dear 🙂

  3. Christine, if you could give me the name of your insurance carrier, it would be really appreciated. I have Horizon Blue Cross Blue Shield of NJ, and they refused to pay for my surgery. I am now facing over $65,000 in unpaid medical bills. I have filed an appeal and it would really help if another insurance carrier in the US is paying for this surgery. Horizon calls it investigational and experimental. Helen, could you please email me the name of Christine’s insurance company so that I am sure to receive her response. THANKS!!

      • I am trying to get a lymph node transfer. I have lymphedema in my right leg due to surgery for endometrial cancer. Cancer was never found, but the surgery removed 19 plus nodes. I live in Nevada and am insured by Sierra Health and Life. United Health Care is the parent company of SHL. I lost my appeal and am know preparing for my external independent review. It was be great if I could use the name of someone who had this surgery and has the same insurance. Any guidance would be appreciated.

        Cindy

    • Bridget, my carrier is Premera Blue Cross/Microsoft in Seattle.
      During my first visit with Dr. Chang in October 2013, he said the insurance is more likely to pay full (minus my personal level of deductible) for “Reconstruction”, which my LN transplant is. He also mentioned, the bypass surgery is for insurances still “experimental” as a single surgery option, but will pay for bypasses done within the reconstruction surgery.
      However, getting a reconstruction isn’t an option for every case, the less invasive bypass would be so much more appropriate… but the insurances wouldn’t pay for that. Doh!

  4. Hi Christine: I have asked to have my doctor in Canada apply for approval from our provincial health insurance to be seen by Dr Chang. I have already emailed him and he has answered that he thinks I would be a good candidate, but has asked me to send him pics of my legs. What is your leg like now? Do you continue to see improvement as the days go by? Have you gone back to light duty at work yet? I have had melanoma and the entire groin basin lymphnodes removed. i am a nurse, but because of the work it has taken to keep my lymphedema under control, I have not gone back to work. I would like to try lymph node transplant just to try and lessen my workload over the years, in terms of how much time it takes me to mechanically chase down the accumulating fluid! I worry about getting old and dealing with this when I am so much more less flexible than I am now! I am anxious about this procedure, in case it ever created lymph swelling from the donor site, and I wonder what your thoughts are on that complication, and what Dr Chang told you about that.
    thanks for being so generous and sharing your infor….it truly helps us all in our decision making!
    D

  5. Do you feel like the surgery was a success? I’m really considering going to meet with him and see of I’m a candidate. Any information or opinion would be very appreciated!! Good luck to you! I hope you have had great success as it looks like you’ve had! My email is cuenlm168@gmail.com thank you!

  6. I know this blog is older by the response dates. I have an appointment with Dr. Chang coming up for left leg and groin swelling post uterine cancer. I am praying that I am a candidate and that my insurance covers this procedure. Was wondering if any one had any updates on how they are doing over a year later??

    Thank you

  7. Hi Christine. I am considering both surgeries with Dr. Chang and am wondering if you could give a progress report now that it’s been over two years since your LNT, and they say it takes two years to see optimum results. Thanks!

    • Not sure if you will get a reply as I have not heard from her since surgery.. There are others more recent who had DrChang ..I think Liz .. The surgery is not a cure but it helps and can also help to stop infections.. Everyone responds differently to the surgery dependent on the condition of their leg pre surgery..

      • For those who are contemplating lymph node transfer surgery, I agree with Helen. It works as far as helping to avoid infections, and it’s best to have it soon after you are diagnosed. I read an article recently where a woman who was having breast cancer surgery had the lymph node transfer done before the mastectomy! I had my surgery in April 2013 and frankly do not see major results. I also had a venous bypass in my leg. However, the size of my leg has not changed that much. It looks okay but the lymphedema is still obvious.

    • Kathy, My name is Liz and I had surgery with Dr. Chang in June 2015–I had both surgeries done by Dr. Chang-if there are any questions you need answered-I would be glad to answer then for you- I had uterine cancer and 5 yrs later my left leg started swelling.. I followed all conservative measured leading up to the surgery but finally got tired of the conservative measures and wanted something more permanent. I started researching Dr. Chang whose name I found from this blog. Fast forward, now I am almost 1 year post LNT (right clavicular nodes transplanted to left groin) and lympho venous bypass below the left knee.. I still wear the Elvarex compression stockings and use the bio compression boot/ or flexitouch boot at night and sleep in the solidaris quilted night time garment. The measurement of my left thigh is down to 1 inch bigger on the left than the right thigh (which is the normal leg).It is my left calf and left ankle which still has a little way to go—translation: my right leg is still completely normal -the left calf is about 1 and 1/2 inches bigger than the right calf-my left ankle is still about 1 and 1/2 inches bigger than the right ankle —so my left foot is still puffy —-I “feel” it in a normal pair of shoes so I still wear sneakers mostly to work since I am a nurse. One thing you will learn with this condition is patience.. I have not gone back to Dr. Chang for a follow up visit yet.. I felt that I will go back after a year so he could see some results. I live in CT and did not want to incur the expense of a flight for just a measurement of my leg. I feel the time is coming that I feel like going back- I was lucky in that I never had an infection of the left foot or leg. I was a prime candidate for this surgery according to Dr. Chang–He said he had never operated on a leg as small as mine that had lymphedema. That was because I was maniacal about keeping the swelling down…Good luck to you. Any questions I can answer for you , please don’t hesitate to ask. Love, Liz

        • Helen, I bought some “tights” for the gym–these “tights” are actually compression tights that I found out about by the LE therapist who did MLD on my leg 3 years ago. I order them from a company called “backcountry.com”–they are not cheap but they do provide compression while you are at the gym. She advised me to buy these compression tights since she had guided her father in law to purchase them because he has varicose veins. I have used these for a long time and they are OK for a workout time in the gym. Yesterday I wore them all day because I did not feel like struggling in pulling up a compression garment, (I wanted to give myself a break!) especially since it was 60 degrees outside. At the end of the day, I did notice some additional swelling BUT once I put the bio compression boot on for an hour, the leg reduced again…BTW I have a question to anyone who can answer it. I have a bio compression boot 3008 that is really easy to use (you just slide your leg into it and zip it up) and I have a flexi touch boot which you have to Velcro yourself into which is a bit of a hassel and usually I have my husband help me. The bio compression boot is so much easier than the flexi touch boot to apply. I am wondering if one is better for you than the other? Of course I prefer the one which is easier to get into but it may not be the best one to use……I guess I just answered my question…….Liz

          • I have worn compression gym tights for a long time too.. I buy them from a sports store either Puma or Skins… I usually get a smaller size than what they say but you have to be careful that the waist us not to small …. One pair I got I had to cut the waist elastic!!!!! Yes they are good
            for exercise and I would wear them to the pool as easier to get on after than compression stockings… I have no idea about pumps but from what I Read they say the flexitouch is good… But I guess you can go by your own personal results….

  8. Hello Liz, I think maybe you were replying to me, my name is Ketty. Anyways, thank you for the information. Do you have any pictures? My leg, foot are also pretty small, I too am pretty crazy and maintain my leg and toes wrapped most of the times, except nights like last night that i was just too tired. My surgery is a week from Tuesday, May 3rd and i am hopeful and nervous at the same time. I want and have hopes to return to some normalcy. I will keep everyone posted. I am from Miami and will be flying to Chicago Saturday, pre-op Monday and surgery Tuesday. How long did you stay after the surgery Liz?

    • Have sent Luz your email address so she can answer any questions… It is good to have some support from someone who has had the same surgery… It takes time after surgery to see results as the nodes have to grow and that takes time

    • My surgery was June 19, 2015. We stayed at a reasonable facility called the Quadrangle at the University of Chicago medical center. The Quadrangle is a group of rooms the university has purchased for out of town people who are having surgery- It is clean, with a grand staircase , red velvet carpeting and clean facilities—Like “old world” charm. More reasonable than mid town hotels.
      My surgery was that Friday morning, June 19 ( I had to be there at 5:30am), surgery started by 7:15 am and was over by 12:30 pm–so roughly 5 hrs.–By Saturday morning, I was beyond hungry; I had not eaten since Thursday evening!!!!–I had a bad anesthesia headache post op but no pain–2 drains –one at the right neck area (donor site)–One in the left groin hooked up to a Doppler machine that you could hear the “swish’ “swish” each time your heart beats and there is perfusion going through the lymph nodes–it’s great! Anyway, dressings came off on Saturday for a brief moment—and rewrapping was done–I continued to stay in the hospital till Monday morning. The drain in the left groin was removed before I left the hospital on Monday morn. They said the nodes placed in my groin were doing fine–if they weren’t, they would know 12 hrs after my surgery–at this point it was 72 hrs past the surgery. The drain in my right neck came out by Tuesday morn. I sort of took it out on my own because there was no serous drainage coming out of it. I don’t advise you doing that—-
      No pain at all/ no infections –immediately post-op they gave me a couple of doses of IV prophylactic antibiotics- and then that was over-NOTHING more -Thank God—We stayed in Chicago till Thursday so Dr. Chang could see me one more time. He was happy with his results. For the lympho venous bypass below my knee, he could only find one big lymph vessel to anastomose to a blood vessel and one mediocre lymph vessel to anastomose to another blood vessel–therefore, I know the drainage of my left calf and my left ankle will take longer than the left thigh. That was it—-I am so grateful to have had it done—I still wear the Elvarex stockings and I got re-measured 2 times so far so I could make the compression a little more snug–in other words providing more snugness so I can bring down my measurement even more—right now, there is a 1 inch difference in my left thigh to the right thigh-there is about 1 and 1/2 inches difference of my left calf to the right calf-which is my normal calf. My left ankle is about 2 inches bigger than the right ankle…So my left foot is puffy but still able to fit into a 7 1/2 shoe but it is snug—I mainly wear khakis in summer and my scrub pants which I wear to work. Sometimes I wear shear jobst toe to groin 30-40 mm of mercury compression because they are not as bulky as the Elvarex. I read the messages everyone writw and they so encouraging and they give me ideas about my own care and how to get thru different situations. I hope that answers some your questions.. I do need to make an apt with Dr. Chang soon only because I want him to see me again. He wanted to see me 4 months after the surgery which would have been in Oct.–I didn’t see a reason to go so soon- I wanted to go when there was more of a change…..I told Dr. Chang all about this blog site and how I found out his name…..Make sure you mention it also.
      I hope you feel better about your decision—I know you are in good hands–I was apprehensive and nervous just like you and also excited like you are. The procedure was in network-Thank God- and all of the providers are in network, so that was a relief–Total Cost of procedure was $75,000. My out of pocket cost was $2500.00–God bless health insurance. God bless this blog site. Any other questions, feel free to ask—Lots of luck–keep in touch—YOU GO GIRL–Liz

  9. Thank you for ALL your help ladies. Liz, you have been wonderful and extremely helpful. Makes me feel so much better to know you did so well during and after your surgery. Will keep everyone posted.

  10. These are all so helpful. I’m hoping to have surgery on my left leg as soon as my insurance approves it, which I’m praying it will. I’m also excited but a little afraid. I have lymphedema in my left leg as a result of cervical cancer in 1999. It came on gradually after my surgery and continues to get worse. I don’t have much luck with compression but I do use my Jovi at night and have a FlexiTouch machine that I use faithfully. I really appreciate reading everyone’s experiences and hope that I can get some relief from the surgeries.

    Joyce

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