Apr 22, 2018 09:33PM teach6 wrote:
2 days post surgery. Discomfort not pain. Unveiling to change gauze:
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 421 - 450 (629 total)
Apr 22, 2018 09:33PM teach6 wrote:
2 days post surgery. Discomfort not pain. Unveiling to change gauze:
Apr 22, 2018 09:58PM teach6 wrote:
I imagine it will wash away- otherwise, it will make a fun conversation tattoo.
Apr 22, 2018 10:04PM Help3 wrote:
have any of you heard of Dr sameer Patel in Philadelphia? I was referred to him by a member of another group. My left arm lymphedema drives me crazy. I hate my fat arm.
Apr 22, 2018 10:50PM HappyTrisha wrote:
I just looked him up and he has fantastic ratings and reviews. He's been named one of America's Top Docs for the last 3 years. That's an incredibly prestigious award. All of that said, from what I was able to gather from his website, they may only be offering VLNT at his center. He has a blog article on it, but it was written in 2014. I would want to know whether he has been performing LVAs or other LE kinds of surgeries, and if so, how long and how many. I can only speak from my own experience and what was important to me, so please remember that is only my opinion. I wanted to go to an LE surgeon who was up on the latest techniques, had performed them himself for a while, and had had good results. I am in RI but I am going to Iowa for my surgery. I was going to go to Chicago but ended up decided to go with Dr. Chen. They are now performing LE microsurgery in Boston and they have some very competent doctors in NY, both of which are much closer to me. But in my opinion, Dr. Chen is one of the both pioneers and experts in the country and that's who I want performing microsurgery on me. He no longer performs VLNT because he thinks there is a possibility of causing problems in the node removal site. Yet there are many doctors still performing VLNT and many probably have good results. So I guess I'm saying that a lot of doctors are now catching on to microsurgery for LE and are going with the stand-by technique; however, the pioneers in the field are onto more progressive procedures. I hope I'm making some sense here. I know what I'm trying to say and only hope I'm getting it across. I don't want to discourage you from going to Dr. Patel, and with his pedigree, if he were performing some of the newer microsurgeries, I personally wouldn't hesitate go to him. (You might want to give a call to his office to see whether he does any of the other microsurgeries.) But I personally would hesitate to go to anyone who is only offering VLNT. Just my humble opinion.
(I'm truly interested in how others decide upon the doctors they'd go with...)
Apr 24, 2018 11:18AM mjsgumbas wrote:
teach6 - so glad you are doing well! Hope things progress well for you too!!! Nice to see the incisions are so narrow almost 1/2 the width since I had mine done, but the scars are so light, they are hard to see after 4 years.
My husband and I joked too that I should have had Dr. Chen's "map" tattooed :)
Hope everything heals quickly and you get back to your normal routine soon - and I hope you see a noticeable difference!!
Please continue to keep us posted!
Apr 26, 2018 04:07PM HappyTrisha wrote:
Teach6, I've been emailing with Mindy and she said she just saw you recently. She really thinks the world of you!
If anyone wants a chuckle, feel free to read on. I already mentioned that I won't know what surgery I'll be having until I get to Iowa so can't make round-trip plane reservations. I may have also mentioned that if it's LVA I can stay at the Hope Lodge but if it's the flap transfer, I will have to move to a hotel since I'm going to Iowa solo (my choice) and Hope Lodge won't allow people to stay there without company if surgery is such that you can't totally take care of yourself after surgery- but of course won't know that until my spy test is done! Well I will just excerpt something from an email I sent to Dr. Chen's office as part of trying to figure out all of the logistics! "Trying to figure out all of the details in terms of travelling has crossed my eyes. On the east coast we're pretty used to having all kinds of public transportation available at our airports and city busses and trains that go everywhere. I am finding out it's not necessarily the case at some of the Iowa airports. Adding a huge burden to my travel plans is the fact that I am claustrophobic and can't fly in small airplanes. What I have found is that most of the planes flying into Cedar Rapids will be airplanes with 2 seats on each side of the aisle. For me, that's a small airplane. So my best bet is to fly an airlines that uses only 737s. Well that would be Southwest – that flies into Des Moines, not Cedar Rapids! Oh my goodness. So I've tried to figure out getting from Des Moines to Iowa city, which can be done, but then it's a matter of finding out how to get to the bus terminal and making sure I can get a flight that will get me into Des Moines in time to catch one of the two busses out to Iowa City. And oh yes, Southwest only flies to Des Moines from Boston, and Boston is an hour away from me."
Other than that, this is all going without a hitch, ha ha!
Truth stranger than fiction, but where there's a will, there's a way. And the will is definitely there.
Apr 26, 2018 10:48PM - edited Apr 26, 2018 10:50PM by teach6
HappyTrisha- Was at my 1 week check up today. I told Mindy to share that I was not a serial killer in case you wanted me to help with transportation while you were in Iowa. Really, let me know your dates and I can drive you from DesMoines to Iowa City- no need for a bus ride if I am available. I may not want to use my VW bug if small spaces are a concern :D
Apr 26, 2018 10:58PM HappyTrisha wrote:
Teach6, let me just say this immediately and openly. I more than appreciate your generous offer and did the first time I saw it. I have some weird thing going on in life where I hate to put people out. I've always been that way. I would never ask you to drive me from Des Moines to Iowa City. I feel bad enough asking you to potentially drive me from the bus station in Iowa City to Hope Lodge. But if you don't mind helping me out that way once I hit Iowa City, I can't thank you enough. I have tears of gratitude in my eyes as I write this.
Apr 28, 2018 05:44AM MRock wrote:
Yes, agree with hugz4u!
I'm learning a lot and really appreciated the photo, too, teach6!
Apr 30, 2018 03:34PM HappyTrisha wrote:
Shout out to Delta Airlines! In finalizing my plans to go to Iowa (yes, I have actually finalized them and will be flying right into Cedar Rapids, yay!) I had occasion to be in touch with Delta Airlines to ask some questions about their policies regarding changing reservations and in the process found out that they give a 10% discount to passengers flying for medical purposes; upgrade passengers who have anxiety issues (claustrophobia being one) to Delta comfort level for no fee; and waive the fee to change reservations if it because of medical need or necessity. The best part is that I didn't have to ask the questions. The agent offered all of the information once I said I would be flying for medical reasons. In checking with both American and United, I can say that Delta has the most expansive policies with respect to helping passengers flying for medical purposes, hands down. Thank you Delta!
May 10, 2018 10:04PM - edited May 10, 2018 10:10PM by teach6
So happy for you Trisha! We will talk soon.
3 weeks post LVA surgery and so excited to see the positive results this summer. Random thoughts:
May 11, 2018 11:18AM HappyTrisha wrote:
This is more than a little intimidating because of course, my LE has to be in my right arm, and I am right-handed. I may be blanking out on a lot of things right now, but would you mind going over some of the fundamentals for me, such as how long we have to wrap after surgery, how long and why we are not able to use that particular arm after surgery, and how long we use the sling to keep the arm elevated? I may have made a mistake picking summer as the time to do this, but I am definitely not turning back! :) (Are we allowed to use the "impaired" arm to do things like eat?) Thanks.
May 11, 2018 10:54PM - edited May 21, 2018 10:32PM by teach6
I imagine these dates/recommendations change depending on Dr/Patient and surgery. (I had LVA)
May 29, 2018 12:49AM Help3 wrote:
oh boy! I am trying to get caught up with all of your progress! What are your results so far? I have a consult with Dr. David Chang in Chicago June 7th. I have seen 2 plastic surgeons so far who both said I was a good candidate for lymph venous bypass but they had limited experience and one had trained with Chang so I didn't want to go to someone without tons of experience! Plane tickets booked..I gate mu arm
May 29, 2018 12:50AM Help3 wrote:
hate my arm..not gate:-)
Jun 2, 2018 10:38AM - edited Jun 2, 2018 10:40AM by teach6
6 week LVA update-
I will be switching from compression wrapping to sleeve and glove next week.
The arm feels a lot lighter, stronger and looks great. I am wearing my wedding ring again!
Jun 5, 2018 11:34AM mjsgumbas wrote:
teach6 - Awesome!!! Your arm looks great! So glad you are able to wear your wedding ring again! Thanks for keeping us posted! So glad you have experienced a difference!
Jun 7, 2018 10:29PM - edited Jun 8, 2018 12:20AM by Dita
hello all. I had a lymph node transplant and LVA bypass surgery just under a month ago.
I had some complications after surgery which resulted in an extra surgery, 3 week hospital stay and a collapsed lung. Its been traumatic to say the least.
But my arm is looking fantastic. At the moment i do not have any bandaging or wrapping on my arm. Ive been told that i need to get measured one month after surgery.
Other than that i havent really been given any after care tips.
Would appreciate hearing from anyone as to how theytreat their arm after surgery.
Happy to answer any questions about the procedure.
Jun 8, 2018 06:34AM - edited Jun 8, 2018 06:35AM by MRock
teach6, your news is awesome! Thanks for sharing.
Dita, it sounds like your news is very good, too, although I'm sorry you've had so very much trauma. I hope all those other issues have gradually backed off. I'll be interested in what the others have to say about after-care tips, since the specialist I went to see likewise recommends no bandaging or wrapping of the arm, just rest for 2 weeks, no lifting, etc. Sounds like there are varying protocols. Thanks for sharing your story, too.
Jun 8, 2018 07:20AM HappyTrisha wrote:
Dita, if you don't mind me asking, where did you have your procedure done and what complications caused the need for extra surgery? Thank God it sounds like you've come out of it fine and the news about your arm is great!
Jun 9, 2018 01:42AM - edited Jun 9, 2018 01:44AM by Dita
i had the surgery done in Sydney, Australia. There is a doctor here who is performing the surgery with no out of pocket expense to try and introduce into this country. She trained in the US. Oncologists are incredibly doubtful that it works. My breast surgeon told me it was witchcraft!
I had lymph nodes removed from my left side collarbone and developed a chyle leak, basically a vessel got nicked during surgery and resulted in an incredibly high drain output. I was warned it was a risk but usually a low fat diet for 3 weeks lets the vessel heal. Well six days after the operation i was still putting out nearly 2 litres of fluid and so it was unlikely to heal. So i had to have a thoracic surgeon go through my chest and clip the duct shut. This meant i had to stay in hospital for another 3 weeks with 2 drains attached. I was told it wasnt life threatening but i felt very poorly after op no. 2 and spent 4 days in icu.
Then i spent 3 weeks on opiates to manage the painful chest drain. When it finally dried up and they removed it, my lung collapsed.
So i basically had a complication at every step of the way. It was really traumatic if not life threatening.
I think its important for anyone thinking of getting the op to realise that things can go wrong and being cancer patients we've already gone through so much. I probably took it harder than someone who hadnt been in hospital before because it reminded me of that initial surgery, feeling powerless and sick!
Coming out the other side now i can honestly say im delighted with my arm.
As to why my chyle leak was so bad, the surgeon said my lymph looked dodgy anyway. She said there were more vessels than normal and they were enlarged, she thought i probably had some congenital issue, which might explain why i got lymphedema in the first place.
Mrock thanks for sharing. It does feel like there seems to be a lack of knowledge about best protocol here
Jun 11, 2018 04:49AM MRock wrote:
Oh my, Dita, it sounds like you really went through the wringer! So glad that you have the satisfaction of your arm looking and feeling so much better as a reward after all that!
I live in Italy and am on a waiting list for LVA. I read an article by one of the Oxford (alongside the centers in the States, perhaps the biggest European center doing LVA) doctors, and he said they don't wrap after surgery, either, whereas it seems very common in the States, and would make sense to me.
Hoping others will comment.
In the meantime, Dita, besides good wishes, I wondered if I could share the name and contact info of the Australian doctor doing LVA surgery on a FB page where I believe there is one Australian member who has secondary LE. Do you mind sharing that info?
Hugs to all
Jun 11, 2018 05:36AM - edited Jun 11, 2018 05:36AM by PreludeSing
I have been reading a lot but just joined recently. This thread has been very interesting to me as I am considering LVA in the near future. My lymphedema didn't show up til Jan 2018, after I finished rads in mid Dec 2017 even though I had 24 nodes removed on my left during my surgery in June 2017.
Just wanted to drop by and say thank you, thank you, thank you for all the sharing here. It has been immensely helpful.
Jun 13, 2018 12:51PM Jackpot wrote:
I’m also new to lymphedema and have read this tread with interest, my Lymphedema started almost 5 years out of treatment and i am interested in this surgery, i am based in the uk and have only been able to find out the costs of this surgery from the oxford uk clinic and was just wondering if anyone who has had it done in by Dr. Chen in Iowa had any information on the costs...thanks
Jun 13, 2018 01:13PM Help3 wrote:
have you all had your surgery covered by insurance? My insurance denied the lva:-(