Apr 30, 2014 03:28PM toomuch wrote:
Wow, Wow, Wow! The difference is so noticeable. Congratulations!!!
Are you still wrapping, doing MLD and wearing a sleeve? Your pics make me wish my insurance would cover the surgery!
Lymphedema is swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema can appear in some people during the months or even years after treatment ends.
Lymphedema usually develops slowly, and you may feel an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling, and decreased flexibility in the hand, arm, chest, breast, or underarm areas. Tell your doctor if you experience any of these symptoms. Early treatment of lymphedema is important.
Learn more about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.
Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020
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 61 - 90 (665 total)
Apr 30, 2014 03:28PM toomuch wrote:
Wow, Wow, Wow! The difference is so noticeable. Congratulations!!!
Are you still wrapping, doing MLD and wearing a sleeve? Your pics make me wish my insurance would cover the surgery!
Apr 30, 2014 08:13PM Amoc1973 wrote:
OMG!! I'm so happy for you. That much diff in just 4 weeks is amazing. I bet you've still got normal postoperative swelling still since it's so early & STILL your measurements are down!! I'm betting it gets better & better! Did your surgeon tell you how long til you see the maximum results? Did he say when you could stop wrapping & eventually try w/o the sleeve? I'm truly thrilled to see this. Please keep posting your progress. It's great!
May 1, 2014 05:57PM mjsgumbas wrote:
too much & Amoc - thank you both so much!!
I was just fitted for & hope to get my 30-40mmHg sleeve early next week. No longer wrapping. I wear my old sleeve during the day & nothing at night. Feels strange after 3+ weeks of constant bandages but feels good too.
Dr believes 1 full month of the tighter compression will teach the lymph the new path, which was the ultimate goal of the surgery. He expects a full 3 months post op for complete results. That's when I'll be able to gauge myself if I need to wear the sleeve or not.
I have seriously no pain. Do not at all feel that dull achy heaviness that I had in my upper arm triceps area.... I can scratch my fiancées back with my right hand now & don't have to hold my arm up with my left hand!!!
Too much - I was concerned that I'd have issues with my insurance, but if the Dr deems it medically necessary, it can get covered. Haven't gotten any statements from the insurance company yet, but I was told when I went for my 1st follow up, they were billed $57k. The anticipate being paid 18-20 as an agreed rate. Have you met with a surgeon to find out if it would be covered?
I'll keep you all posted on continued progress. We have had really crappy humid, rainy weather all this week. That used to be a big trigger for me & I have had no issues!!! I love that I have an elbow and arm pit again!!! It's truly amazing!!!!
Thanks again for all your positive thoughts!
May 5, 2014 09:17PM Amoc1973 wrote:
All I have to say is....friggin' awesome!!!!!
May 6, 2014 09:00PM mjsgumbas wrote:
Just got my new 30-40mmHg sleeve today and 23-33 mmHg glove - holy compression!!! Lol! Huge difference and I can feel the tingling in my arm at the surgical sites & down my side. Must be working. Had a great massage today by the therapist. Really felt good flow.
Know there is still substantial healing and our weather here near Chicago has been goofy - I have had some weird swelling in odd places, but all in all I'm very happy so far!
May 7, 2014 12:38PM mjsgumbas wrote:
All the best Kimber!!!!! You will do great! This was the easiest of the 4 surgeries I've had in the last 9 months.
Thinking about you!!! Keep us posted!!!!!
May 7, 2014 12:53PM mcgis wrote:
I SOOOO badly want this done but the surgeon here in LA isn't associated with any insurance. I'm stage 2, I wear compression every day, pump at night, and do MLD religiously in morning and night. I'm going to talk to my CLT tomorrow about this more.
kimber, can't wait to hear how you do. my sister lives up in Marin Cty. Maybe I can go there to have it done?
May 9, 2014 12:47PM mjsgumbas wrote:
I'm curious too Kimber!!! Hope all is well and you are feeling good!!!!
May 12, 2014 10:46AM kimber_1616 wrote:
sorry I haven't been back on I had both breasts worked on left just some clean up, right my pocket of the implant was ruptured and the implant was flipped from a mammogram so they fixed that at the same time so my arms haven't been full commission.
I had my surgery done the 7th and we unwrapped yesterday and even with surgical swelling I can already see a difference. I am feeling very hopeful, but don't want to screw something up by not behaving post operatively. Arm is elevated a lot and is really not painful. At night it bothers me but that's more from being trapped laying on my back with an arm elevated.
Mcgis my surgeon is Dr Charles K Lee in SF he has studied with Chang and Koshima, one of the founders in Tokyo. He said he has never had an insurance deny the surgery at this point. He has been doing it for almost 2 years.
May 12, 2014 12:07PM mjsgumbas wrote:
Kimber - Thanks for checking in. Having both corrective and the LVA at the same time had to be tough. Glad you are doing good and not having much pain! Picture looks good - it is an amazing procedure.
Fingers crossed we will both fair well from all of this!!! I'm very excited/happy with the outcome thus far and hope you continue to see positive results.
It's so tempting to be outside gardening, now that we finally have some decent weather but I get to just point my finger
May 12, 2014 05:50PM mjsgumbas wrote:
kimber - I know how you feel. I'm right handed too. The 1st week was rough but it will get easier
May 13, 2014 09:55PM mjsgumbas wrote:
Didn't get around to posting this last friday. This was 6 wks post op. Only real swelling I have is the top of my hand after the tighter compression. This was 1st thing in the morning after sleeping unwrapped with my arms tucked under me. I am very pleased with the progress so far!!
Kimber - hope you are healing quickly and feeling good!!!
May 14, 2014 10:24AM Amoc1973 wrote:
Mjsgumbad- I can't tell a diff in your arms with that pic! This is so inspiring. Please keep posting how you are doing.
Kimber u too!!!
Love love love this thread :)
May 14, 2014 01:07PM Binney4 wrote:
Amoc and all, like all of you I'm really cheering for kimber and mjs. It sure would help if we had some "before" pictures to compare here but, lacking that, if you actually check out mjs's pictures you can certainly note considerable swelling remaining in her entire forearm and in the elbow, as well as the wrist, palm, and base of the thumb. As mjs mentioned, this picture was taken in the morning after sleeping on her arm, so that tells us this is probably better than it was before the surgery. And hopefully with time it will only get better still. But for now, there's considerable healing left to be done, and reducing the swelling that remains is the top priority in order to avoid the obvious infection risk, fibrotic build-up in the tissues, abnormal fat disposition under the skin, skin changes--and all the other long-term effects of uncontrolled lymphedema that we all have to face.
Dr. David Chang gave a web talk yesterday for the LE&RN, in which he made it clear this surgery is not a cure, but that it does often (not always) result in some reduction of the swelling, at least in the short follow-up period he has been able to follow his patients. It's archived here:
Swelling is hard for any of us to eyeball accurately, which is why LindaLou's thread here, "Visible Signs of Lymphedema--A Pictorial" is such a help to all of us as we monitor our own LE and move toward optimal control of this rotten condition.
There's a lot to be said for patients feeling a whole lot better, both physically and emotionally, and this surgery seems to have made that possible for msj, and now hopefully for kimber too. As you'll note in Dr. Chang's talk, sometimes that's the full extent of what these LE surgeries accomplish--feeling better--and the swelling remains to be dealt with.
I know I sound like the bad news bear here, but I really believe that, as a community of patients with LE, we need to remember and honor the experiences of other women (that I and others here are in contact with) who have tried this surgery, in the same expert hands, only to end up with considerable further damage to their lymphatics. They are not posting here for the obvious reasons--grief, humiliation, pain. But hopefully this small representation of their experiences that I offer here will provide some much-needed balance to this discussion.
MSJ and Kimber, wishing you both amazing healing as you continue on this adventure! And so grateful for the on-going LE research on many fronts that will some day lead us all to that elusive CURE!
May 14, 2014 02:39PM mjsgumbas wrote:
Binney - it is not easy to hold my arms out equidistant to provide an exact photo. You can see that my right arm is more forward in the picture than my left - which may give you the impression I have "considerable swelling remaining in her entire forearm and in the elbow, as well as the wrist, palm, and base of the thumb". I don't disagree that there is swelling - I am 6 weeks post op... I had swelling from my other 3 surgieries for a lot longer than 6 weeks, but I can see my own arms every day & it is not considerable. I was told to be patient and expect 3 months to completely heal.
I am no photographer - nor expert on this procedure and no one guaranteed me a cure... that's for sure.
I started this thread with the hope someone would have spoken up BEFORE I did it... you say there are many that have had it done and ended up with further damage, but no one posted any experience - not even a private message, which was an option if they were, in fact embarrassed. The only posts I received were, basically, there isn't enough info out there. If it were me, I would reach out, good or bad experience - just like everyone on all of these forums does.
There is no need to balance the discussion, as you suggest. This thread started with a question and I choose to show how thing are progressing - GOOD OR BAD. I have admitted to the top of my hand being more swollen than it was pre-op, I provide pictures to show progress - I'm not advocating this surgery by any means - as I am not a physician.
I am a patient with breast cancer and unfortunately lymphedema, who was looking for guidance - NOT criticism, nor am I advocating anyone should do it. This is my experience - period. And I supported the few women who went to see Dr's, to find out if this is right for them!
I felt confident with my surgeon, with the prospect of at a minimum feeling RELIEF and I chose to have this surgery. Given my age and how early we attempted to treat the LE surgically, my surgeon believed I would have substantial results.... that was good enough for me.
You say -" we need to remember & honor the experiences of other women" - no one on this thread has provided any dishonor?????
I attended Dr Chang & Dr Chen's talk together at the Midwest Plastic Surgeons Conference, live and in person here in Chicago this past weekend. Neither of them, at any time, implied a cure by LVA or transfer.
I didn't start this thread to get in a pissing contest with anyone either. As I said before - it started for guidance and now it's a timeline of the healing process and my excitement in seeing positive results. If someone tries something, that may not have worked for you, it doesn't mean that it doesn't work at all.
I can't understand why, if people are bothered by a topic, they can't just ignore it - just saying.
Here is a picture taken just 3 weeks before my surgery. I normally wouldn't include my face - but what the hell... you can see the substanial swelling in my forearm and upper arm then. World of difference now.
May 14, 2014 03:35PM carol57 wrote:
mjs, it's hard to say why some patients disheartened with their LE surgery outcomes choose not to post here or to say how they decided who they'll confide in, but I too am in touch with a disillusioned member whose surgeon seems to have over-promised (not your surgeon, I should be clear in saying). I think Binney did not intend to initiate any kind of pissing contest any more than you have interest in engaging in one. She's just saying, and I agree, that the very limited reporting of LE surgery experiences anywhere means that your one very hopeful story is filling the void completely. And yet there are other less positive outcomes and it's probably wise for the rest of us to be aware of that.
You are one gutsy woman and I sincerely admire you for that. I hope you'll continue to share your experience with all of us! And I also wish that the women whose surgeries haven't met their expectations would recount their experiences here, not in the spirit of debate but truly in the spirit of sharing.
And I sure do wish you and Kimber and others who are braving the surgical treatments the very best in healing and especially in attaining real and enduring relief from this odious condition called lymphedema.
May 14, 2014 04:20PM mjsgumbas wrote:
thank you Carol! And binney too, for the well wishes!
I do not intend to get into it with anyone! I have, personally, tried very hard to remain nothing but positive thru the entire BC process, including this LVA. I'm only telling my story here and have heeded your advice & read all the links you provided.
As with each of our BC diagnosis, each persons LE is different.
The relief I've felt thus far is enough justification for me for trying the LVA. It wasn't an aweful procedure and simple recovery, but no one knows the future. It could worsen, but it couldve worsened with out the surgery.
These threads provide an opportunity to support eachother, to vent and to disagree. But I would hope that threads are used for the purpose that they were intended.
I'll continue to post good & bad. Maybe one day we'll be able to share a thread explaining how we were "cured"!!!
May 14, 2014 04:20PM Amoc1973 wrote:
. I'm really glad there is a thread showing the results of this surgery for people wanting to share...good or bad. If I decide or am advised to have this procedure ill post as well. I hope u guys keep posting as I'm really considering it. I know others are too.
May 14, 2014 11:14PM purple32 wrote:
I just came across this thread and find it fascinating. many thnaks to those who conttibuted! Eight hours in ' the medical slumber' would be too much for me. It all looks quite promising.
May I ask where the link to the blog is ?
May 17, 2014 10:27PM kimber_1616 wrote:
Just checking in and wanted to let everyone know my arm is doing very well. I see the surgeon on Monday. When we remove the bandages even just ten days out and after having the breast worked on (and I swell with that) I have minimal swelling, if any. My fingers do get a little if I'm up and doing more than I should be. I believe part of that has to do with not moving them. I had swelling from le under the breast, under the arm and around the heart and lungs. I no longer have any of that. I never thought to take a before pic, but we have measurements and will re measure soon. I also didn't realize how controversial this conversation was. I too was looking for advice and experience when my dr mentioned lva and that's what brought me here. My surgeon did not offer me the sun, moon and stars. He did tell me I had a 5% chance of making it worse. With lymph being around my heart and lungs (at 43 and a runner prior to this) I figured I would take the chance. It is sad to me that this "community" on more than one occasion has been very "clicky" and I have gotten offended by the way that people have it "their" way and are so opposed to anything that isn't approved by whomever is the know it all. If you would like to privately inquire about my healing I will share with you, other then that I will find support elsewhere.
May 18, 2014 08:18AM Olivia82 wrote:
I have been reading this thread for sometime and thought I should add my own experience. I have had Lymphoedema since July 2013 and had the LVA surgery in the UK 8 weeks ago. I did a lot of research and saw several surgeons before going ahead with this. My surgeons work in a very well respected university teaching hospital and were realistic with their expectations of surgery.
As my lymphoedema is mild and early they said I was a good candidate my LVA and hoped that after a 6month period I would become less reliant on compression garments, may or may not see a small volume difference and reduce the incidence of cellulitis. Personally I was willing to try this as I hate wearing compression and doubt that to the untrained eye you would notice much difference between my arms. The opinion of all the surgeons I saw (and all the available research I read) was that worse case scenario was I'd have a few scars with no improvement in my symptoms and my lymphoedema would progress as it would have done i.e may or may not get worse over time.
Obviously it was a difficult decision given the small numbers in research papers but I felt I only had one chance of being in the early stage and I'm pretty young (and stubborn!) so hopefully have a long life ahead of me.
It's still early days but my arm feels much softer than before, I have more definition over bony areas and the scars are healing well. I think we'll know more at 3 and 6 months but overall i'm pleased with my decision.
This surgery certainly appears to be growing in popularity with more and more centres planning to offer this in the UK, including the 2 most prestigious Oncology centres in the country.
I hope we can collect more personal stories (good and bad) from women who have had this surgery as it is a difficult decision to make and I certainly wouldn't want to influence anyone either way. I think in the past they were not very good at selecting the right patients for surgery and the types of procedures vary quite differently when you read the full details.
Given the numbers of women now getting this surgery on a weekly basis around the world I think we'll learn so much more about lymphoedema, potential intervention and possible complications over the next 2 years.
I'll keep you updated on my progress, the good and bad, over the next few months.
May 18, 2014 09:53AM mjsgumbas wrote:
kimber - I hope you will stay with us, but I can understand where you are coming from. I think the few of us that have been on this thread have been very supportive... That was the intent. I will keep in touch and hope you continue to feel better. So glad you feel better and have noticed a difference.
Olivia - thank you for sharing. It seems you & I had similar diagnosis and the same conversations with our surgeons. I agree, there is a huge increase in the number of these procedures being done, which we can only hope will produce better outcomes for LE sufferers. I agree too that trying this in a very early stage should make a difference in long term results.
I hope you continue to see long term progress! The softness you spoke of, I noticed relatively early too. The only set back I feel I've experienced so far, is swelling in the top of my hand, but my fiancé keeps reminding me to be patient.
The hardest part is being patient in the healing process! We live in a world of instant gratification and expect things to be "fixed" as soon as the surgery is done. I want to get out & work in the garden, play in the dirt, ride the motorcycle.... but gotta sit tight a few more weeks. It's worth it in the long run, if it works. And it's fun watching my kids have to do all the things they took for granted, that Mom always took care of. They are 19 & almost 21 so it's not easy to get them motivated for yard & housework!
Wishing you all continued relief and minimal swelling! Keep in touch!
May 18, 2014 10:47AM Dejaboo wrote:
There are so many of us following your Progress (that dont post) Please continue to check in here & let us know how things are going...newbies that have had the surgery- I hope you will also post.