It is a while since we heard from Liz as to how she is going after her Lymph Node Transfer with Dr Chang, but she is now back and ready to share her journey and answer questions that anyone may have. The thing that helps so much is to learn from others experiences, be they good or bad. More people are now having surgery for lymphedema and more doctors are performing LNT, LVA (joining lymphatic vessels to veins) and SAPL (lymphatic liposuction). Nothing in this blog replaces advice from your doctor, but it often helps to connect with someone who has had the surgery and ask questions that you feel unable to ask others. I always say that it is very important when looking for a doctor that they have good pre and post operative protocols, as this is not just about the day of surgery. Being prepared for surgery and having your limb as good as it can be may help. Post surgery the care is important too. What do’s and don’ts does your doctor have… Unfortunately they are all different in this area, so it can get confusing, but always follow the protocol your surgeon has requested for you.
Here is the latest update from Liz
“I had a LNT in June 2015 with Dr Chang. My LE started in 2012, 6 years after having a stage 1 cancer of the uterus in 2006. I would love to help anyone who needs questions answered. It is a VERY long journey and not a second of the day goes by that my left leg is not on my mind. I continue wearing the Elvarex one legged panty with the 30-40 mm of hg compression. I sleep with the quilted compression garment with the sleeve that goes over the top of the quilted garment. My surgery was almost 8 months ago and I have not gone back for a follow-up visit yet. It doesn’t seem necessary for me to fly from Connecticut to Chicago in order to have Dr. Chang measure my left leg…. I will go back to Dr. Chang maybe next month… I think there is a reduction in my left thigh, my ankle and calf have not really reduced much… Dr Chang said that LNT was good, he also did a lymphovenous bypass in my left calf, he was able to find 1 big vessel to anastomose to a smaller vessel to promote drainage from the calf and foot. That is what seems to be taking a lot more time to show results. I remember asking Dr. Chang about the chance of stem cells being used in the treatment of LE but he said there was not enough research that had been done for stem cells to be placed in the groin. OH well I guess we just have to wait and I have to become more patient …let’s all keep the faith.
I will be submitting my whole story soon, it takes a lot of emotional strength to retell this long and painful journey. I am so very grateful for this incredible blog, in my darkest hour, this blog site and all of the wonderful inspiring people helped me thru the LE despair….We are not defined by our lymphedema; that is something we do to ourselves, we are defined by who we are as people. However, the LE is always present and every step I take reminds me of the restrictive, constrictive, thick flat knit garment against my left leg. I long to feel the fabric of my clothes against my skin. I suppose time will tell and I have to learn more patience.” Liz
Thank you Liz for sharing, it can take a long time to see results, it is not a magic cure but hopefully it will eventually help..
These are some links to Liz’s previous updates…
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