LVA surgery - bypass surgery - Have you done it?
Comments
-
Dr. Chang has moved from MD Anderson to U of Chicago. I had an appointment for consultation with him in Dec, but could not go because I got very ill and it turned out that was the weekend there were tornadoes throughout Illinois. In any case, I spoke with his assistant, and got a lot of questions answered. The one thing he did not know was whether Dr. Chang would consider doing the procedure for someone with residual disease in the axilla.
Since then I have been able to see a lymphologist closer to home, and she said the surgery would be contraindicated for me because of that, but otherwise she did not say anything negative about the procedure.
I watched his video, did the research, compared his methods to those being used in Italy and Japan, and I think if I did not have the tumor mass in the axilla, I would go for the procedure. The lymphologist I saw also suggested that my LE may improve if the chemo works to shrink the tumor, so that is keeping me a little hopeful. I will follow this thread to see if anyone goes for this procedure - it makes a lot of sense to me the way it is done with care to prevent worsening (that is something that the lymph node transplant approach worries me about - if you take nodes from somewhere else in the body, what is to keep you from developing LE of another limb, especially with the theory that there is also a systemic aspect of this condition).
Edited to add: we DEFINITELY need clinical trials for this, but many surgical procedures are developed through a "patient-centered" approach rather than "evidence-based" approach, such as so many of the procedures to correct birth abnormalities. Clinical trials have their place, but there is some controversy as to when and where they be less useful. (I have a whole soapbox on this topic, but won't go into it here).
0 -
You know that we really don't 'know' how anesthetic gases work. They just know they do. Lots of theories but it's a mystery in many ways. And all of us have had anesthesia ALOT. It works. And that's the bottom line in my opinion. I've told my doc if u told me to stick a corn cob up my butt 2-4 hrs a day & the LE would decrease I'd do it.
0 -
Linda-n3 I just confirmed my surgery for 3/28. I am very excited, especially after i had a very bad flare up on vacation. I want to try whatever I can to relieve this! Will let you all know how it goes. Fingers crossed!!
0 -
mms gimbals, are you having the procedure at U of Chicago or traveling to another center? I will keep fingers crossed that this works grat for you!
0 -
my PS referred me to Dr Chen (not chang) at the u of iowa. U of C is right in my backyard & I'm going 3 1/2 hrs from home - but I was really pleased with his disposition & visible discipline. I have faith I'm in good hands, especially knowing who he studied under. Just finished all my pre-op tests & interview. Have to be out there at 5:45am 2 weeks from today. Can't wait!
Thanks for the positive thoughts! I hope if it does work for me others will be encouraged to try!
0 -
I just read that Dr Chang left MDAnderson and is at University of Chicago now.
0 -
Yes, Dr. Chang is now at U of Chicago. I had scheduled an appointment with him in December, and was prepared to go to Texas, but found he had just moved to IL, which is actually easier for me to get to. However, I was unable to make the trip due to illness and weather, but they were extremely easy to deal with. His assistant and scheduler were both very helpful, sounded kind and compassionate and were so respectful toward me. I talked with the assistant for about 30 minutes and asked a lot of questions, some of which he knew the answers to and others not, but he told me he would find out and to send him an email. I never followed up on that because I realized that it was not really possible for me to make that trip right now, so if I am able to in the future, I would definitely give this a try.
I don't remember where Dr. Chang studied, but he has trained a lot of folks to do this procedure, many of them still at MD Anderson, so it is great that the surgery is being offered over a wider geographic area so it is more readily available to more LE patients.
On another note, I am going to be enrolled in a clinical trial to evaluate the feasibility of measuring lymph flow velocity by MRI rather than the more invasive dye injections. I don't have much more info on it right now, but one of my physical therapists has been working on developing the protocols and a grant, and they just got the go-ahead to begin recruiting subjects to compare lymph flow in the affected vs. the unaffected limb. There is already data that proves lymph flow is slowed in LE, so they are trying to find a less invasive way of measuring this that would make it more available to more patients, perhaps even help to predict who is at risk rather than assuming everyone is at risk, or, like me, assuming I was at low risk and therefore didn't take preventive measures seriously. I will let you know more as I find out more. And I may start another thread on this rather than hijack the other LE threads, once I have more info.
mjsgumbas, I am thinking of you this week, anxiously awaiting your procedure, and will be with you in spirit, sending lots and lots of positive thoughts to both you AND your doc! I have kind of an odd theology according to some, but I believe there IS a God, and that God is love, and that we are surrounded by that love, and that the doctors and surgeons have special skills to do God's work to help us heal, and I am sure that your surgeon will bring his best skills and talents to you, and then it is up to your body and nature to finish the healing, surrounded by the love that we all send and share. May you be filled with lovingkindness, may you be free from fear and pain, and may you be at peace.
0 -
Linda - thank you so much for your kind words and thoughts. I have the same beliefs! Dr are a special breed with a true calling. And yes, the nerves of yet another surgery are really kicking in today(your post made me cry). I'm only nervous about the amount of time I'll be under. - but have been told there really isnt anything to be concerned about (thank you amoc1973). I can only hope the recovery goes smooth and I will strictly follow all post-op instructions!! I have positive thoughts that this will be worth it and that I will look back and wonder what the heck I was worried about! Thank you again for your support and prayers! I will post details of everthing as soon as I can - will have an ipad for my overnight stay.
Linda - that is awesome that your PT is doing this study and great that you are willing to participate! I look forward to following your thread. It takes brave people to step up and take a chance, so more info is available and the opportunities to learn are plentiful.
0 -
surgery is done!!! Home resting and can honestly say I feel some relief in my upper arm. Sore but not painful and little hints of a burning sensation. Dr Chen was able to do 16 connections via 4 incisions. Have to stay wrapped for 3days then I can shower & change the dressing. He was very pleased with the outcome and believes I'll have significant relief! Will follow up in 2 weeks, no massage, no compression garments. Arm has to be elevated or in a sling. Kinda stinks cuz I'm right handed but I'm adapting quickly!
0 -
Awesome!!!! Please keep us posted. So glad you're doing good!
0 -
Thanks for the post with the photo! I can see where the dye has accumulated, and he did the anastomosis just proximal to each of them, so you would expect some improvement in the flow in each of these areas. I am so hopeful for you that this turns out to be LONG TERM relief! Best wishes for speedy and excellent recovery! (I truly get the right-handed issues - when I was in bandages for several months, trying my best to be compliant, had to learn to do personal hygiene left-handed - quite a challenge!!).
0 -
thanks linda & amoc! Feel really good today - no pain at all. Will keep u posted with the progress. Thank u for the kind words & positive thoughts!!
0 -
Got to finally shower! Felt incredible but a challenge at the same time. No real swelling in my forarm or fingers - thats where i had the most lymph swelling. Incisions look good and hopefully the stitches will be out a week from today. Really feel less heaviness in my upper arm. Amazing so far.... Hope it continues
0 -
mjsgumbas - Thanks for posting the photo of your arm. I hope that your arm continues to feel light. Sending healing wishes!
0 -
Shower is good! Be gentle with yourself, rest, and know that I am sending best wishes for healing.
0 -
Just getting to Iowa again! Stitches out tomorrow morning - yipee!!!! Going to enjoy a day at the casino as a long over due reward before getting poked again tomorrow!
0 -
Thank you all for these links, they are wonderful. I will be seeing Dr. Chang in Chicago later this month, and am hopeful he will consider me as a candidate for the bypass surgery.
0 -
Laurie, please let us know how your visit with Dr. Chang goes. Mjsgumbas, have fun and am so glad you are continuting to do well!
0 -
Stitches are out!!!!!! Starting therapy in 2 week and compression until we see a stabilization in measurements. When that happens NO MORE therapy or sleeves. There is about 6 weeks of total internal healing so real results should start to show then.
We had fun Linda - thank you!
Laurie - let me know if you have any questions.
I have steri strips now but will post a picture later of my arms side by side. I do feel a real difference already - especially the heavyness - its so much less.
0 -
12 days out & my only real problem is still trying to wash off the grafiti that just won't budge!!!
0 -
OMG!! This looks fantastic!!!! How do you feel? Be careful, do what they tell you, and don't rush things - here's hoping this is PERMANENT CURE! (Yes, I know - you have to be careful forever, but still, just being able to be FREE for some of the time is a great improvement!)
0 -
Linda - I feel great. Little burning & pinching every so often but nothing untolerable. I will do EXACTLY as instructed!! I don't want to mess anything up! Still wrapped 24/7 except to shower from my fingers to my elbow for a few more weeks until I can start PT. Hopefully they can squeeze me in the week after Easter. Will start back with massage, get refitted for sleeve and he said I should anticipate stabilizing of the lymph in about 3 months & hopefully be done except when traveling.
I am so happy to see my wrist bones & elbow again & my fingers look normal. I have to see if I have a before picture somewhere. Was so excited about getting it done we didnt even think of taking before pix.
P.S. I love your quote & the Big Bang Theory!!
0 -
Good to hear your news!
I am SO addicted to that show - I think I know most lines by heart I watch it so often. And what is weird is that I still bust a gut laughing at the lines, even though I have heard them a million times by now! They just crack me up. And I can't wait for the new episode tonight!
I have had a lot of GI issues recently, not sure if it's due to meds or cancer, but in any case, my new favorite lines are coming from Howard's mother, LOL!
0 -
Howard's Mother - too funny Linda!!!! The writers are so creative and they couldn't find a better team of actors. We look forward to it every week also! Some people don't get the show... I wonder why??? It's nice to have a show to make you laugh every time you watch it. It hard to pick a favorite actor because they are all good - I love Raj...but mostly because of his accent!
0 -
I'm so happy for you! The pic looks great. Wonderful!!
0 -
Wow mjsgumbs, your arms look fantastic! Great news!
I saw Dr. Chang yesterday (Thursday) at University of Chicago Hospital. He spent almost an hour with me. Now looks like my plans are changing. I was going to do recon in Milwaukee, but now I will be doing it with Dr. Chang. He will also be doing a lymph node transplant, after "clearing out" all the scar tissue and cording under my left arm. He thinks just that alone will help with the minor lymphedema I have. So, will get 2 breasts added, a port removed, and some lymph nodes moved all in the same day. He says he expects it will take about 12 hours. Why am I excited about 12 hours of surgery?
. I questioned if removing lymph nodes from one place would cause it (the lymphedema) to start there, and he said no, they have a way of knowing which lymph nodes to take. So, that was a relief.
One thing - when he said he was booking surgery into September, and I said I wanted October anyway, he said ok, how about October 3? And I said perfect, that's my birthday! I think it's a good omen.
Have a nice holiday weekend everyone!!
0 -
Laurie - glad to hear you get to do it all done in one shot! I thought 8 hrs under was long.... but you are having so much more done! Nice that you can wait and enjoy the summer. I believe your birthday would be a good omen!! Keep me posted please! I'm curious to know how you do with the transfer.
I start PT again tomorrow. Not sure exactly what is going to happen, but I guess I'll be back to massage & new sleeve for a few weeks.... and then hopefully NOTHING!!!
Hope everyone had a nice holiday!! I hosted (with one arm - lol) and my arm & hand faired very well - which is an excellent sign!!!!!
0 -
Hi all - sorry its been a while since I've posted but we hosted easter & then had a 1 year "cancerversary" party Friday as a thank you to all our friends who went out of their way to help me this past year. Doing pretty well. Took new measurements today & I'm down more than a centimeter in 3 areas of the forarm and above the elbow!!!!!! Awesome news! Looks like things are making positive progress! 4 weeks out now, still wearing compression during the day & wrapped to the elbow for the night. Have 3 pesky stitches that are stubborn but finally working their way up. Picture makes it look like both arms are equal. The heaviness I felt before is gone!! For that alone I am very thankful.
0 -
it looks great!! no before pictures?? your hand looks a lot smaller too just from the picture you posted on 4/9.
did they take nodes from elsewhere or connect your lymph system to your veins? what was the criteria to be a candidate for that?
0 -
mcgis - we didn't really think about before pictures. I do believe I have some I can crop from vacation but that wouldn't be close ups like these.
I did the LVA - the bypass, where they connect lymph vessels directly to veins. I did not have the lymph node transfer surgery.
I'm not sure what the "standard" criteria is, but I was told by Dr Chen, it all depends on your LE staging. I was stage 2 after lymphography (the green dye test) and just at the border of not being able to try this procedure. I had a large area of stardust pattern above the elbow (tricept area), which was the biggest area of disease and where I felt the most heaviness. Per Dr. Chen, the earlier in the symptoms you are, the better the results, but I'm sure every person's case is unique.
I just started noticeable symptoms in August 2013 and immediately worked with PT and compression. My PS urged me to take the trip & at the very least, just meet Dr Chen. I am already glad I did.
0
