Aug 3, 2018 03:49AM PreludeSing wrote:
4 incisions and 8 anastomoses...so far, so good !
Posted on: Feb 14, 2014 08:48PM
I recently traveled to the University of Iowa to meet with Dr. Wei Chen a supermirosurgeon/plastic surgeon. I was referred to him by my PS. I had the Indocyanine Green Lymphography done and was amazed at what was seen both in my healthy arm and diseased arm. I was diagnosed under the Campisi Staging at Stage 2 as my LE is, right now, centralized in my upper arm. Although most of my swelling is in my hand, the Stardust and Splash patterns are confined to the area of my tricept.
Dr. Chen believes I would be an excellent candidate for LVA, as my symptoms have only been around about 6 months. He believes better results come with early intervention. I wear compression sleeves (often) and a glove almost all of my waking moments. I do massage also. It hasn't progressed, but it isn't relieved with any of the treatments.
In our lengthy 2 days clinic with Dr. Chen he explained in detail how the surgery is performed, showed us actual video and covered his results since he began performing this procedure. His statistics have been: no patients symptoms worsened, 90% saw some form of relief and 10% of the 90% were cured. There will still be therapy and garments for some time post-op, but the intent is to ease the necessity of these daily.
An 8 hr surgery - although minimally invasive - seems overwhelming. But if they don't try - they won't know! The surgery only effects the skin and fat layer - never reaches muscle, so the recovery/pain is nominal.
These surgeries have been performed in Asian countries for decades!!!!!!!! With favorable results!
I've tried to seach thru these threads to find someone who has had the procedure done and what the results were. So, please let me know if you had success!!!!
Posts 481 - 510 (629 total)
Aug 3, 2018 03:49AM PreludeSing wrote:
4 incisions and 8 anastomoses...so far, so good !
Aug 3, 2018 10:05AM Help3 wrote:
how wonderful! How long will you have to wrap for?
Aug 3, 2018 07:56PM - edited Aug 3, 2018 08:34PM by PreludeSing
At the moment I am in light bandaging...just 2 layers to help keep the lymph flowing and help keep the fluid moving out of the newly formed anastomoses as much as possible.
Was on hospital bed rest for 3 full days until yesterday when I finally got discharged home. They are very, very careful here. I was admitted for 2 days prior to surgery just to elevate arm as much as possible. That already made a huge difference to my arm swelling - 48 hours of consistent elevation.
I have been advised to really avoid any kind of pressure on the incision sites for at least the next 2 weeks. Stitches will come out in 10 days time. Hoping for the best :)
Beyond grateful to Dr. Chen and my surgeons in Singapore for collaborating to try and get a good outcome....
Aug 9, 2018 08:02PM brithael wrote:
Tomorrow Dr. David Chang will be performing a LATISSIMUS DORSI FLAP WITH LYMPH NODE TRANSFER AND LYMPHATIC VENOUS BYPASS on me. Send good vibes!
Aug 9, 2018 08:17PM PreludeSing wrote:
All the very best Brithael!!!
Aug 10, 2018 11:10AM Help3 wrote:
congrats Brithael! How are you doing? I am contesting my insurance right now because they denied coverage for the bypass. How is the bypass for you? Did your insurance cover it? I really liked Dr. Chang. I pray for a good result for you!
Aug 10, 2018 11:10AM Help3 wrote:
how are you doing? Making progress?
Aug 10, 2018 10:14PM brithael wrote:
feeling pretty good. Only one viable node for the bypass which is up by my thumb, but maybe it will keep my hand clear.
Got the transplant with the flap taken from my back with two drains from it , and so far the most painful part but only when I move. Flap transplanted to my axilla and only hurts if I move a certain way.
Arm is wrapped but no sling. Encouraged to do range of movement so holding arm up etc.
If all stays well, going home tomorrow
Aug 20, 2018 11:59AM brithael wrote:
It's been ten days since the lymphedema surgery. I still have to wrap my arm for another 3 weeks, so that's annoying.
However, one of the two surgical drains (which I refer to as Thing 1 and Thing 2) has been removed. Hopefully Thing 2 will depart during 2nd post op this Thursday.
Incisions are healing well although I look like I brought a vegetable peeler to a knife fight. Big incision along muscle in back with new incision under arm.
Stamina coming along but not back yet, but I'm working on it.
Can't tell a lot about swelling in arm yet as it will take 6-12 months for lymph node transfer to take hold. I was only able to get one lymphovenenous transfer, but my Dr said it's a good one, and they usually show the improvement first. When unwrapping yesterday, my fingers looked excessively good, so I tried an experiment.
YES, I was able to put on my wedding ring on for the first time since 2015!!! Forgot to take picture, but will next time I change wrapping.
Aug 21, 2018 06:23AM PreludeSing wrote:
Thank you for sharing Brith. Glad you are doing well!
I did LVA and my surgeon got 8 anastomoses done with 4 small incisions at the wrist. I posted pics above somewhere in this thread. Arm volume difference has gone down from 244mls to 54 mls (normal)
My surgeon says only light wrapping during day time and had me in a sling for 2 weeks to help with elevation.
Results are promising so far and my arm does feel lighter and looks better.
Very glad I went ahead.
Aug 21, 2018 08:57AM Help3 wrote:
sounds wonderful! Glad you are having such good results. What do they say as far as wrapping or wearing compression sleeves?
Aug 21, 2018 08:20PM PreludeSing wrote:
Light wrapping, just one or two layers for another month. They will reassess every 2 weeks to decide on how to move forward with compression. Their eventual goal is for reduced hours of compression which was my goal too.
The docs in Singapore are very careful and follow up quite closely. They had me hospitalized for 2 days before surgery just to keep my arm elevated so surgery would be easier as the arm would be drained. Then they kept me in hospital for 4 full days after surgery to make sure the arm was elevated and rested post surgically and to make sure I didn't overuse the left hand.
I think it made a great difference to my initial outcome. Time will tell how this pans out...
Where is Happy Trisha? Teach6? How are you ladies doing?
Nov 10, 2018 04:55PM brithael wrote:
I haven’t posted for a while , but thought I should update. Everything seemed to be going well until I went back for my 6 weeks post op. I asked about a lump on my side and the “fellow “ who was doing the triage examined it , then said he would be back with Dr. Chang in just a minute. I thought nothing of that, but when Dr. Chang, appeared and examined me, he said that the lattimus dorsi flap had slipped down. He said he had never had it happen before. I had to be the first.
When I asked where did we go now, he responded that we could leave it, but of course, I would have none of the benefits the flap is supposed to eventually give. I said that was unacceptable, and he said he could get me in right away and reattach the flap, so we did that. On October 4th, on an out patient basis, he reattached, and so far, things seem to be okay. Of course that restarted the clock as far as seeing improvement from the transplant.
On the good news side, the lymphovenous transfer seems to be doing a good job of keeping my hands from blowing up.
I’ll try to keep in touch better as the flap hopefully restores some lymphatic tissue under my arms
Nov 11, 2018 09:15AM PreludeSing wrote:
Great to hear brithael!
I am also doing well after LVA in Singapore. Arm feels so much better.
Nov 20, 2018 10:07PM Memento_Mori wrote:
Hey friends, please see my new post about VLNT. I need some advice! I'm not allowed to post links, but it is at the top.
Nov 22, 2018 07:52AM HappyTrisha wrote:
Hi all! This will be an overall post as well as a response to marg1. I haven't been here in a long time and for that I apologize. I ended up having a knee replacement, long overdue from a previous accident, and I can tell you that in terms of a challenging recovery, that is definitely it! My LVA is probably one of the best things I have ever done for myself. They say the best candidates are those who have more recent lymphedema. While that may very well be true, I credit my surgeon, Dr. Chen, as being the absolute best with respect to the outcome of my LVA. I had had LE for at least 13 years. True mine wasn't a severe case, but I did learn that LE doesn't get better and will progressively get worse; you never know when the tomorrow might be that you wake up and all of a sudden find that your situation has changed dramatically. All of that said, I went back for my first test after surgery to find that the LVA is indeed working. I go back in January for my second test to see how much more improvement there has been. I can tell just from removing the compression garment at night and waking up in the morning that my arms are basically the same size. In fact, I think my compression sleeve is actually too big for my arm and I am considering ordering another one in a size smaller. Between surgery in July and my first test back in September, I had been going to PT and using a compression pump once a day. The pump isn't necessary but I had it so figured I'd use it. After September I stopped doing both things and am only using the sleeve at night. I will learn more in January but really think that they will start to wean me off the sleeve. I'll report back on that once I've been back to Iowa. If anyone can do it, I would highly recommend Dr. Chen in Iowa. He is at the forefront of surgery for LE and is actually doing things other surgeons haven't started yet - and he has left behind some things that had been thought to be the gold standard in LE surgery. And he is passionate about helping LE patients. He is extremely kind and patient; will take hours to explain things and answer questions if you need that; and he actually calls to check on you! I will state that I had to sign a waiver saying I would pay $5000 if insurance didn't cover the procedure. I'm still waiting to hear about that. I decided it was a risk I had to take. If I have to pay it, I'm sure they will allow me to be on a modest payment plan until it is paid off.
marg1, you have at least two things going for you: you are going to one of the best cancer centers in the country. I know that a few of the leading LE surgeons were previously at MD Anderson. The second thing is that the recovery is a piece of cake. The most frustrating part of the recovery for me was just having to have the bandaging on 24-7 for 6-7 weeks. That was annoying more than anything. But I don't remember feeling ANY pain at any point in time. And if you are having pain, the pain meds they order for you will more than do the trick! And you are also picking a good time of year to do it. Full bandaging in the fall-winter is probably a benefit. Not so much in the summer, ha ha. Good luck with the surgery. I'm sure you will end up saying it is probably one of the best things you've ever done for yourself!
Happy Thanksgiving all!!!
Dec 16, 2018 08:17AM marg1 wrote:
okay well I had my LVA at MD Anderson last week. I had an overnight stay and had 3 incisions around my wrist. Had a bandage for a week and have to keep elevated for 2 weeks and can put a sleeve on after 2 weeks, I have to continue to rest and no lifting for 4 weeks after. I won't know results until my 3 month visit. I was told that it is likely I will need a lymph node transfer from groin to armpit in the future but this procedure should help for now. Also was told to lose weigjt as it would help my case. I need to lose 50 lbs. I'm going to do everything in my power to lose the weight to help this surgery be successful.
Dec 16, 2018 06:52PM Mucki1991 wrote:
I have BCBS and I'm told that a lot of times they deny the lymph node transfer.what are your experiences with this issue?
Dec 17, 2018 12:29AM - edited Dec 17, 2018 12:30AM by Lilo
I hada lymphnode transfer in May and am scheduled for LVA on Wednesday, 12/19
Jan 18, 2019 01:42PM - edited Jan 18, 2019 01:44PM by HappyTrisha
Fabulous news! I just returned from my 6-month visit to Iowa and my arm has gone down incredibly! I will try to post the information sheet given to me by the nurse. Bear in mind that I had LE for at least 13 years when I had my surgery. I can only imagine what can be done for folks who have been diagnosed more recently. I continue to say that my doctor is a genius. In addition, he is one of the most professional, dedicated, and cutting-edge doctors in the field. I wish that everyone could go to him. He told me that they are now finding that improvement can continue as far as two years out.
Happy New Year to all. I will keep you posted with my progress. My next visit to Iowa isn't until July, which will be my one-year appointment.
(My right arm is the arm with LE)
Jan 18, 2019 02:33PM - edited Jan 18, 2019 02:34PM by hugz4u
Happyt. Sooooooooooooooooooooooooooooo excited for you. Do you think this is directly from surgery or if you lost weight. I hope it's directly from surgery cause that would be great news to our community. You are so brave to go ahead with surgery. I forget was it dr Chen.
Edited to add:Just looked at your stats again. It looks as though it’s surgery that’s making you smaller. Yes! Yes and yes.
Jan 18, 2019 06:42PM PreludeSing wrote:
Woohoo Happy Trisha - excellent news and so happy for you.
My LVA arm is doing well too with measurements creeping down every month. Most importantly the heaviness and tightness I used to feel have been lifted. I only had LE for 6 months before I got totally sick of it!
Dr. Chen advised my surgeons in Singapore - he was fantastically helpful and my surgeons were very competent.
This operation changed my life.
Jan 18, 2019 06:57PM HappyTrisha wrote:
hugz, not a question that it was the surgery. Three months after the surgery I had a knee replacement (was in an accident years ago and broke both bones in the bottom of my left leg. It changed my gait and wore down my knee.) Between both surgeries I haven't been able to be active and I gained weight. :(
Dr. Chen is phenomenal. Helping LE patients is his passion. I just thank God that I bypassed previous opportunities and surgeons and ended up with him. I owe it all to msjgumbas!!!
I can't encourage people enough to look into LVA. Please feel free to ask any questions whatsoever.
I had an opportunity to speak with Dr. Chen about the state of things right now with respect to insurance and funding. I can tell you that he was at least a little discouraged with the way things have slowed down. Without proper resources, these doctors will not be able to continue with their research and continue to help us with our cause. I did promise that I would do anything I could to spearhead some kind of movement and I will ask for the help of everyone here. I'm waiting for him to tell me the best way to go about it. He mentioned how funding for breast cancer is incredible because women really banded together and got things going. It looks like the same kind of momentum isn't present in the LE community. Well with results like the ones I as well as others here have gotten, this should be screamed from the rooftops!
Anyway, stay tuned for that and if anyone has any ideas whatsoever on what we might be able to do or how we can go about helping our doctors to help us, please weigh in. It's not my expertise but I am so willing to learn. It's the least I can do for what has been done for me.
Jan 18, 2019 07:11PM HappyTrisha wrote:
PreludeSing, I am so happy for you!!! What a wonderful feeling to get this under control. To me these doctors are gods. They could be making a fortune doing facelifts but instead have dedicated themselves to making the lives of LE patients better. To be able to do away with wrapping and manual massage is truly a dream come true. In a short time I will be able to be without my compression garment. Dr. Chen was telling me about one of his patients he had seen recently who uses her compression garment maybe an hour a week now. Again, I can't emphasize enough that I was diagnosed with LE at least 13 years ago and with Dr. Chen and LVA, I've ended up with these phenomenal results.
I will add here that there are surgeons - and there are surgeons. I don't mean to disparage anyone, but someone had asked if there were doctors closer to my home (New England) who were performing this surgery. The answer is yes - but as far as I'm concerned, none with the experience and technique of Dr. Chen. I had several other consults but was not convinced to go ahead. It wasn't until I contacted Dr. Chen (by email the first time!) and received his very detailed response that I was convinced that is where I needed to be.
I've now been to Iowa three times - once for the surgery and two other times for progress testing. It has been worth every penny and expenditure of my time. Maybe the most exciting of all was when prior to surgery, Dr. Chen called me at home and spent more than an hour on the phone with me, explaining his procedures down to the most minute details and answering every question that I had. I can tell you that he is extremely patient, kind, and understanding. I guess it's obvious that I really admire this man! :)))
Jan 19, 2019 09:02PM PreludeSing wrote:
Happy Trisha, count me in...if there is anything I can do to help...pm me