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/
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….
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 firstname.lastname@example.org or leave a comment at the bottom of this post I can follow-up on.
Thanks… By sharing we help each other…