Surgery with Dr Chang for arm Lymphoedema

imageKim shared her surgery story via a comment so once again I have created a post so everyone can see it… Sharing our stories helps others with their own journey. Thanks Kim

“My transplant story started when I saw an episode of grey’s anatomy. The has a breast cancer survivor with lymphedema that was having surgery to alleviate the symptoms.

I had stage 3a breast cancer. Right breast and a large amount of lymph-nodes removed. I went through chemo and radiation, but it was during my reconstruction that my right arm started to look like it belonged to Popeye. I went to my oncologist and after a few tests was told I had lymphedema. Months of therapy and wrapping at night, compression sleeve during the day and extreme low sodium diet. I managed for 4 years, carrying my wrappings and compressor all over the world I travel a lot as an engineer.

I started researching Dr Chang about 2 years ago. He was in Houston at that time and the work was experimental. When I checked back last May, 2014 he had moved to the university of Chicago and the were getting more approvals than ever to perform the surgery. I made the appointment and my family and I went to Chicago. I met with Dr Chang. Nice man. He explained I was a good candidate for the bypass and transfer. I was told each state is different for the coverage on this surgery and that they would submit and let me know. I got approved quickly. I scheduled for December 2014-during my winter break. James-my patient advocate was very nice, the only stress I had was discontinuing the tamoxifen for the two weeks prior to surgery. Dr. Chang indicate it makes the blood thicker and could interfere with the surgery.

We arrived the day prior to the surgery and went to the university of Chicago for pre-surgery stuff. I was able to have my arm measured in Texas to bring with me. Dr. Chang took before pics and other details. We went back to the hotel and went to bed early. Had a 5.30am surgery so we were up at 3 am. Family packed up and went by cab, you do not use cars unless you live there. We were first into pre-surgery and got a bed quickly. I went in about 7.30am and stayed way longer than expected. I went into recovery at 2pm. My recovery was supposed to be 30 minutes but I stayed in there until 9pm. I had breathing complications I wanted to hold my breath:). My family finally saw me at about 7 pm and left for the hotel. I was moved to a room and told that I was on bed rest until they determined if I needed further surgery. Therefore the catheter had to stay in and a no food order was given. I was miserable. I had not be told to take a laxative prior to surgery and I wish I would have. I had a machine hooked up to my arm to determine flow, a Doppler. It sounded like a heart beat. I also had a machine for pain medication. I did not use at all and pain was not bad. I was told my bypasses, I had 3, were working well. I also had the node transplant from my neck. Very long scar, just another badge.

I had to stay in the hospital Friday through Monday and stay in town until Wednesday. They wanted to make sure there was no complications. We flew United into Chicago. No cuts in fees.

Many doctors came in daily to listen. I had a complication, the drainage from my neck was not clear and it was determined that I could no longer eat fat until the drain was removed. I am currently low sodium, under 1000 mgs a day. They took fat away from me and I lost 12 lbs in 3 days. When my diet was changed, I got no explanation why. I had to find out on the Internet. In fact they cancelled all of my food orders and I got no dinner one evening. The nutritionist popped by but did not understand lymphedema so I sent her on her way!! I finally got to see the arm when the physical therapist stopped by. It is smaller, I am happy to report. Oddly the docs that came by never checked it. It was a bit depressing to take a wrapped arm home.

I was finally released. I had two drains to come with me. One under my right arm and one in my neck. I was able to get around but tired easily. Our Travel day was Christmas Eve. I called tsa cares the day prior to leaving. They were not great but they connected with the tsa at the Chicago airport-who was amazing. I was so concerned they would try to unwrap me or try to pat me down. They did not. They met us and escorted us through, they even walked us to our gate. I cried in relief

We got home… tubes dried up over a few days and my husband removed them, Dr. Chang showed him how. About two weeks later my husband removed my sutures. I did have a deep suture that created a bump but is going down. No driving, lifting or sex for 4 weeks. I am past 4 weeks now. Arm is still wrapped. I unwrap an hour a day for showers. I will be measured for a new sleeve in another 3 weeks. I am told the transplants could take up to 1 year to work.

My arm is looking good. I am still low sodium.

Learnings: take a laxative prior to surgery, ask about required bed rest, stay on your diet and wrapping prior to surgery.” By Kim

Thanks Kim for sharing this with us.. Could not agree more re the laxative as would have been much more comfortable post surgery!!! It is great for everyone that we share our experiences… Helen

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33 thoughts on “Surgery with Dr Chang for arm Lymphoedema

  1. What is a bypass? Is it another term for the LVA surgery? Dr Chang seems to prefer using the neck for donor nodes. I wonder if it varies depending on the patient?

    Good luck Kim. Wishing you a speedy recovery!

    Sent from my iPhone

    >

    • It is same as LVA. Different drs have there preferences. However some patients after the neck surgery have experienced great pain due to the nerves in that area. It may also depend on available nodes.

    • Thank you, Kim for sharing your story with us-I, too am planning a trip to Chicago for the lymph node transplant and the LVB of my left leg- I had Uterine Cancer stage 1 in 2006-everything went well-they removed 6 lymph nodes from my left groin and some from my abdomen for biopsy-everything was fine for 5 years-no chemo or radiation was required. In 2011, I started noticing my left ankle and leg beginning to swell. I went to my PCP and was told it was my imagination- I went for a few tests and no one could tell me what was wrong. I was the one reminding them that I had lymph nodes removed when I had the hysterectomy in 2006 so they might be reminded that it could be Lymphedema..- the docs continued to tell me that it was not possible to have lymphedema 5 years after surgery. I went to a different vascular surgeon who finally did diagnose the lymphedema. The wrapping began and 3 times per week I went to MLD appointments for therapy and applied heavy wraps. I learned how to be the master of disguise when wearing my scrub pants in the ER where I work!!

      Fast forward, now it is 3 years later and I have been wearing a very thick one legged waist high compression stocking under my pants-I have not worn a skirt or dress in 3 years!! Forget the bathing suit in the summer and wiggling my toes in the sand on the beach.–not happening…..My left leg is continuously wrapped in a compression garment at all times- Finally, after reading several stories on this blog I saw Dr.Chang’ s name mentioned and I felt like I saw Heaven…I started to research him. Yes, he was at the MD Anderson Cancer Center in Houston Texas and in October of 2013 came to University of Chicago Medical Center. I went for an evaluation in September 2014 and about 1 month ago decided to have surgery done. I am scheduled for June 19, 2015 to have the LVB and the lymph node transplant….I have researched Dr. Chang to make sure he is in my insurance network and thank God, he is-I am a nurse so I’m aware of the hazards but I feel that after 3 years of wrapping and using the flexitouch compression pump, it’s time to do something more permanent-I keep my weight down to 120 lbs for my body frame, I go to the gym 3 times per week-so none of my activities have changed except that at the end of a long shift in the hospital, my left calf feels rock hard! Gravity is not a friend of Lymphedema. Removing the compression heavy knit one legged stocking that goes up to my waist requires the assistance of my husband since it is difficult to remove. I do feel imprisoned by the fact that I can’t wear a skirt or a dress and I always have to wear a thick stocking under my jeans–in the summer, it is especially difficult because the stocking under a pair of scrub pants or jeans is really uncomfortable and hot.

      I am so happy to hear your story and glad you are on the road to recovery. This blog and the information I have received from you and others who have gone thru their procedures has helped me find my way!! I have spoken to James at Dr. Chang’s office also and asked as many questions as I could- I have written down the names of all the people at the Dr. Chang’s office I have spoken to. I’m hoping and praying I have a speedy recovery. I will have a month off from work so I hope all goes well. My dream is to see my left ankle and be able to wear a normal pair of shoes instead of sneakers all the time. My left thigh is 2 1/2 inches bigger than my right-the left calf is 2 inches bigger than the right leg and the left ankle is also 2 inches bigger than the right ankle-Because of all of the compression I have applied over the last 3 years, I have been able to contain the size of my leg-otherwise it would have become enormous. Now I want something more permanent.

      I have carried my compression pump to various places and when arriving at the airport, I have had to open the box to show the TSA officials that it is a piece of medical equipment and not an explosive devise!!! They have always been very kind and helpful–

      Keep your faith-you are a very generous, kind person for sharing your story so that others can benefit from your experiences. I asked Dr. Chang’s office if they had an instruction pamphlet they could send to me prior to the surgery so I could understand from where were they taking the lymph nodes? and where would the “flap” be?—how long would the scar be? Information that I felt should be provided to patients prior to them having major surgery. I was told there was no such brochure. They did finally print out information and email it to me. In the end folks, ask as many questions as you can.—I asked whether I would be having a catheter in my bladder which is pretty standard when having a long surgery-why did I have to ask that question? That information should be given to you prior to you waking up post operatively and realizing there is a catheter in your bladder draining your urine. I was planning on eating very light the 2-days before so that I will not have to have a bowel movement while in the hospital-I think they should tell you those things before you come for surgery. Also, they told me that I would be going home with a thick bandage on my leg so I asked, “Shouldn’t I bring a large pair of sweat pants with me so that I have something to wear home?” I felt like I had to pull the information out of the PA on the phone. They should be more proactive in giving the information to the patient so the patient will feel more at ease and more confident. These questions and answers should be provided in an instructions pamphlet. The patient should know all of this information in order to decrease their anxiety level. For these reasons, I was disappointed.

      I have worked in hospitals all of my life and I understand customer service very well. I was a bit disappointed at the University of Chicago. The receptionists were all nice, as was the tech who helped me while in the room getting the dye injected between my toes; very kind. I had little contact with the nurse but she was friendly when I met her in Dr. Chang’s office and spoke to her on the phone.—-I found some of the medical staff to be abrupt, especially when they were injecting the dye between my toes, which was painful.

      I keep asking the same question-“Will the measurement of my left leg be reduced?” Only James gave me encouragement on the phone by saying, “Since you are coming for a procedure to reduce your left leg, of course there will be a reduction-the question is how much and we can not answer that because each person is different.” James was helpful and that statement was encouraging. After all, who wants to undergo 6 hours of surgery if there is no improvement? Stay strong Kim–keep us informed of your progress–it helps us all-we have to stay united on this lymphedema front line. Liz

      • Wishing you well when you have your surgery done… You bring up some good points re surgery and post surgery.. They really do need to put together some solid info to help… Thank goodness we have each other to share experiences!! Helen

    • I was told this during my treatment for lymphedema. I have found that under 1000mg does keep my arm swelling down. It is not a cure and I do cheat about once a week. I was able to keep my lymphedema at a lower level for 5 years with this type of diet. I continue to maintain.

  2. Thanks, Kim, for sharing your experiences. I appreciate it very much. I have arm Lymphedema from Stage 3 breast cancer. I’m not brave enough to go through surgery for it, but I really appreciate reading your experiences!

    • I do not consider it brave. Honestly. I just would like to see my arm look like my other arm and wear pretty summer dresses:)

  3. I too am having the transfer with Chang hope the neck part isn’t so painful! Was the transplant to the axilla as bad as the axillary node dissection… Pain? I’m stage three Breast cancer minus 32 nodes – 29 positive hopefully long gone. My swelling is mostly hand and Breast

  4. Had my surgery Friday, Feb. 6 with Dr. Chang, at University of Chicago. First night, day and night were no picnic. I did not have doppler attached to me, I don’t know yet, but think my vessels were too small. I don’t know anything about any successful transplant yet, will find out on Monday. Neck drain removed on Sunday and went home at noon. Wednesday had underarm drain removed. I measured just 10% bigger in my right arm than left day before surgery. I won’t be measured again until March 6. My neck incision is tight and makes my neck stiff. Hopefully after steri strips are removed it will feel better. I still don’t know about the release from removal of scar tissue in the axilla, will wait to see until the axilla incision heals. Because I had little feeling under arm because of nerve damage after node dissection, no discomfort under there! I’m still groggy from the general anesthesia and the delaudid taken first day and half. Hoping for more energy soon!

  5. Hi. I’ve recently had the transplant (8 weeks ago) with Dr Massey. My arm is much better. I’m doing the MLD 3/week. I find when I wrap my arm retains more fluid. So I’m doing the MLD & using tribute at night. I’ve had this prob before w/ compression. I’ve tried 100 of diff ways to wrap & diff sleeves. Anyone else after transplant just do compression at night? My arm is so much better but feel it would be even better if I could do the compression all day.

    • I had transplant with Dr. Chang three and half weeks ago. I always have had more of a problem with hand swelling and breast swelling. I can’t wear compression (and still can’t) on my arm with a glove, I can only wear the glove. I wouldn’t say I have any relief yet, but Dr. Chang said it could take up to 8 to 12 months for change. I also have a very sore neck/clavicle where the donor site is. Anyone can address how long it took for that to not bother?

  6. My husband is going in for this same surgery with Dr. Chang. He was diagnosed with stage 4 melanoma in 93. Had the same type of surgery as a breast cancer patient would. 20 yrs later he has developed a very prominent and painful type of lymphodema. We go for our consult in 2 weeks. Is there anything else we need to ask? We are going into this blind and no clue as to what is going to take place. We were given the same type of directions in the beginning and almost the same exact warnings about insurance and all. Any info would help. Good luck on your journey of healing and I hope we find success as well.

    • Reading others stories here may help you and give an idea of what to expect.. Also ask about post operative protocols and what is expected after as this is a very important time once the surgery has been done… Results can be slow so do not get despondent … Time allows the new nodes to grow … Good luck i hope all goes well Helen

    • Dr. Chang is great. He is strongly confident as a surgeon. I had by LNT in February..still have swelling in my hand (which is the worst for me.) As Helen says, patience..it won’t happen overnight. You can email directly at hsblinder@gmail.com if you have any questions about U Chicago or Dr. Chang.

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