LE Surgery or for Axillary Web/Cording with Dr. David Chang

PinkHeart

Hoping to find anyone who has either had surgery for Axillary Webbing/Cording, Lymph Node Transfer, or lymphaticovenular bypass with Dr. David W. Chang.  If so, can you please give me a little feedback regarding your experience with him?

Dr. Chang was with MD Anderson-Houston, but recently went to work for University of Chicago.  Link to his bio . . .

http://www.uchospitals.edu/news/2013/20131011-chang.html

I have had two surgeries for severe axillary webbing/cording with a fair amount of success with my current rock star microsurgeon, Dr. Kline, Charleston, who did a lymph node transfer 15 months ago-December 2012 (and no sign of lymphodema returning so far!). 

Dr. Kline has also been bit-by-bit repairing and recontructing me after I started elsewhere with failed direct implants, failed Alloderm slings, failed revision, severe radiation damage, LE, and severe axillary webbing/cording.  Since my BC Dx in June 2011, I have had 10 surgeries to date.  There are still two more surgeries left with Dr. Kline for reconstruction to be completed by July 2015.

Anyway, I am still hoping for one last try with surgery for this evil and painful axillary webbing/cording.  I've come a long way, but just want to try to get rid of the pain and the strangling it is causing.  Dr. Kline has worked on my cording in conjunction with other surgery recon.  He says when he "cuts" the cord (which he does from where it originates by dissecting/picking apart and going down between muscle, veins, and other stuff), that my arm is released 100% on the operating table, and it 100% smooth and flat through my axilla.  However, it later ends up re-adhering somehow.  I think part of the problem is I can't rehabilitate it immediately as I have surgery drains in that area for the other recon work he was doing during same OR session. 

Anyway, anyway, while Dr. K is a top microsurgeon and specializes only with breast cancer patients and free flap recon surgeries, he still had never seen cording as bad as mine that needed more help than the ~100+ sessions I've had with a PT/CLT who specializes in cancer patients only and highly knowledgeable about LE, cording, etc.  He also said there is no medical literature out there on performing surgery on axillary cording.  He has been very sympathetic and took my case to a conference to discuss with a few other surgeons (Sloan-Kettering), but he said they didn't really have any great ideas either.  Dr. K said he would prefer not to try another attempt on it, and supports either of us finding another surgeon who has come across more BC-ALND patients who suffer from this. 

I would like to try one last shot at it -- but have surgery on it ALONE.  That way I am not swelling or having pain issues from recon work.

So---, I plan to give Dr. Chang's office a call, and possibly send some history and pictures, before I actually drive 3 hours for an appointment.  Do not want to get there and have him simply say -- nope nothing can be done -- as that's all I've been hearing from the get-go.  And of course, like may of you, I was never even warned that this crippling at times complication was going to happen.  So tired of the MOs and ROs, not to mention the breast surgeons who actually perform the ALND, simply say either "it will go away" or "nothing can be done."  IMO, There are just way too many axillary webbing/cording patients that are suffering, and a lot of time and money spent for treatment, to not have some sort of bonafide study and doctor education in place.

Looking forward to hearing from you all, and wish you the best, too!

PinkHeart

I'm bumping this in hopes of replies.