A personal account of surgery with Dr Chang

imageOne of the joys of writing this blog is bringing people together, being able to support them while they go through the process of surgery for Lymphedema, both before and after. I love getting emails and comments with questions plus news of decisions made to have a Lymph node transfer, lymphovenous bypass surgery or liposuction or a mixture of all! Two weeks ago Jeanie contacted me with news that she would be having surgery with Dr Chang the next day..(http://www.uchospitals.edu/specialties/cancer/lymphedema-surgery/) She was feeling a mix of nervousness and excitement, which is quite normal given the surgery is elective and a huge decision to make. She had also wanted to share her story to help others in the future.

Jeanie wrote before surgery…..
“I’ve been reading your blog about your experience with the Lymph node transplant. I, too, am having the surgery (my LE is right leg and basically from the waist down) on Tuesday, May 6th with Dr. Chang!! I’m so nervous, and hopeful, ….yet scared beyond belief!
I had uterine cancer in december 1999 and the lymphedema started about 5 years later. I have done everything. Everything!
I hope you get this message – I just found your Facebook page….https://www.facebook.com/Mylymphnodetransplant?ref=hl
Thank you for your informative sites and pioneering soul!!”

“I am so happy that I was able to connect with you. You have been such a pioneer – and I am so grateful for your experience and your wonderful way of putting ‘words’ to all the complex emotions that go with lymphedema and now the lymph node transplant decisions. I am feeling very very nervous…and a little excited about the surgery. Dr. Chang is taking the lymph nodes from the neck area on my left side. I don’t know how many places they put the nodes into my leg. I will find that out this morning, I think. I believe he mentioned 6 or 7 areas?…..I’m not quite sure of that right now. He’s also doing a lymphovenous bypass at the same time.(https://lymphnodetransplant.wordpress.com/2014/04/10/dr-chang-improvements-in-microsurgery/)He said the surgery can take 7-9 hours. That part probably makes me the most nervous! I’m a little scared of anaesthesia for that long. ….So, all prayers are most appreciated!🙂

I would love to put my information on your blog. Please feel free to add any of my I formation if you think it could be helpful to anyone else. The decision of whether to do the LNT or not was difficult, but ultimately I decided to pursue the surgery when the reality of my leg continually getting worse was harder to face than the surgery. The entire right side (waist and abdomen) has started to get larger over the past couple years. My right side is approximately 1-3 inches larger than my left side..it gets worse at the top of my leg. …And I have been the most compliant wrapper, daily compression wearer and in the last 6 months – pump user! I have mixed emotions about the pump, but from what I understood, insurance is more likely to help out, if they feel we have gone through all the proper – insurance recognised – channels. I have been told that my insurance will pay half. I have received pre-approval, so I am hopeful they will come through for me. Insurance is always one of the most anxiety riddled areas for new technology…so, cross your fingers! I have blue cross/blue shield of Minnesota.”

Jeanie wrote two weeks post surgery….
“Thank you for touching base! It has been two weeks (yesterday) since my surgery. My stitches are still in and there is still a little discomfort at the incision sites, but over all – the pain isn’t too bad.

I think I can see a little difference in the lower part of my leg. Dr Chang did two Lymphovenous bypass surgeries in my lower calf and the transplant/transfer from my neck to the groin on my right side. They took the nodes from my neck, so I’ve got a 6-7 inch scar on my neck and at my groin! Adorable – not! The bypass areas each have about a two inch scar with stitches.

I can’t remember what it’s like from others who have had this procedure….but, after 2 weeks, I have to admit, at times I wonder if all the discomfort and inconvenience is worth it. I think it is….and I do know that all the results won’t be available until a year from now…….maybe longer. So,I have to remind myself to be patient. I am supposed to keep my leg elevated as much as possible (70-90%of the time) for the first 4 weeks…..And for the next couple weeks after that, just minimal activity….i.e. light walking and golf….no strenuous activity i.e. No swimming until at least 8 weeks out. Im trying to stay immobile and give the lymph nodes a gentle, non-gravity bearing environment to establish themselves.🙂 ….even though I’m getting bored, I try to stay positive that this is the first stage of the journey.

Also, there is such interesting research occurring right now, with lymphactin….I think the future looks better and better. I would have loved to be able to have the lymphactin with the transfer….but, it isn’t approved for the U.S. yet. It is currently in clinical human trials. Do you know anyone who has had lymphactin with the transfer?

At this time I only have a little pain at my neck incision and at the area below the groin incision.
Thanks for staying in touch!!
If you hear anything new in the world of research (especially with lymphactin with patients who’ve had a transfer) …..please let me know.” Jeanie

Thank you so much Jeanie for sharing the start of your journey after a LNT and Lymphovenous bypass. These surgeries are so new but no one need be alone and there are now others to ask questions of .. One thing for sure is that it brings a roller coaster of emotions along the way!!! Plus much patience is needed for results… I hope that you will allow us to follow your progress over the next few months and years as it does so help those who follow behind!! Thank you so much..

If any one would like to contact me my email is helenbrd@bigpond.net.au

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14 thoughts on “A personal account of surgery with Dr Chang

  1. Great hearing your story so far Jeanie!! Best wishes for continued healthy recovery! Your story may be my future story. We are all one and connecting helps us all. Thanks helensamia!

  2. Great to see that all your efforts are bearing so much fruit. You are really helping others and as a result, being rewarded yourself. Xxx

  3. Thank u for all the well wishes! I forgot to mention that I have worn compression 24/7 for the past 5 years. I’ve had lymphedema for 10 years….

  4. Good luck to you Jeanie! Please keep on sharing your story with us. Thanks again Helen for bringing all this together! This is really interesting X

      • Thank you for all the kind words! Today marks my third week of post-operative elevation for my leg. The scars are healing nicely, and the pain is getting better every day. I wear wraps 90% of the time, and compression stockings 10% on the rare occasion I get to wear normal clothes! 🙂 I think my lower leg looks less dense and seems a little smaller than before my surgery. My thigh seems swollen still, and is a constant reminder that I need to be patient. I have a 3 month follow up with Dr. Chang in August. I will let you know what the initial results are. Keeping my fingers crossed!

          • Hi Helen! It has been 4 1/2 months since my surgery. I am feeling great and have started exercising and building my strength and stamina back. My initial impressions are favorable about having this surgery – for any people considering whether it is worth it or not. I recently met with Dr. Hutchinson, a lymphedema specialist in Minneapolis. I had never heard of her, and here she was, geographically close to me, considering I have travelled to San Francisco, Chicago, and Santa Monica, to find the most Informed researchers in lymphedema! She is helping me with the next step of physical therapy and will be my ‘go-to’ person for all further decisions related to additional surgeries, etc. (she has been – and maybe still is – on the Board for the national lymphedema network.) Her personal opinion is that Dr. Granzow, in Santa Monica has a more preferred approach to the surgeries involved with reducing and managing lymphedema. 8| I was a little disappointed to hear that as I had obviously chosen to go with the LNT and bypass approach first, …vs the lymphatic liposuction direction first, followed by the LNT. But, as she said, no harm done, and we will now continue to manage the outcome of the surgery to help get the best results. The best news is that my leg is not getting worse! I can see small improvements in my lower leg, and with exercise and a healthy diet, I do see more positive results in my entire leg. Ironically, if I have too any extra sugar or salt, my leg seems to instantly retain fluids …. 8] ….seriously! it feels instantaneous. S, again the good news, is that my keg is not getting worse. There are small improvements…and I remain hopeful for better results in the future! So excited to see the news on lymfactin….I would so love to be a part of that study! Thank you again for all you do to keep the information flowing to all of us out here who are pioneers in the world of lymphedema surgeries! Many hugs! 🙂

            • All good news. Will check out Dr Hutchinson as good for people to know these specialists. Here in Australia they decide if you are suited to LNT or liposuction. They make the devision not the patient. I had LNT and a friend whose leg was more fibouros had lipo. We have both been happy with results but hers are more instant than mine!!! Yes salt will effect my leg plus i must drink lots if water too… Take care I enjoy your updates. May create a post out of it so it is more visible Helen xx

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