LVA surgery - bypass surgery - Have you done it?
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Haven't posted in a while as been on holiday and generally enjoying myself!! Arm was great on flight out and while I was away, the temperature started to soar on our last few days and I did have some minor swelling by the time I got home but that settled in a few days.
I'm waiting for the 3 month mark to see if I can reduce compression. My hand is definitely much better, the upper arm is still variable but overall better (always softer and more good days) than before. Typically we're having one of the hottest summers ever here so it's definitely being tested!
In other good news I can get my hair in a clip now which has made me very happy (little victories!!!)
Happytrisha - I'm confused?! I'm presuming your arm is bigger or more swollen than the other side ?? Did Dr Chang do the scan or just look at the pictures? When I had my scan the surgeon talked me through each bit as he was seeing it, he took some pictures at the time as a matter of record but I don't think they look that clear. Anyway hope you get the answers you're looking for.
Mjsgumbas: glad you had a good holiday too!
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Dr. Chang just looked at the pictures and read the report. But I never saw him in person or I think it would have been evident to him that my right arm is bigger than the left. Anyway, he thinks I was misdiagnosed. Now I'm thinking the lymphocintigraphy just isn't as reliable as the Indocyanine Green Lymphography.
SMH.
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That stinks Trisha. I really feel that the variables in LE are so great & they still dont know a whole lot about it even at this day & age. They still have no idea that women who have all their nodes removed never get LE, yet so many that have even just one out get LE. I have never had over 1 cm of swelling in my arm...Im sure I really dont have LE either. And truncal swelling really varies also...It is also very hard to measure. Im sure I dont have that either. That was really crappy that he told you you dont have LE.Do you know the difference in the 2 tests? If the other one is much better- why are they even using the one that you had done
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Wow Trisha, I can see why you're not real "Happy" this week! The article in the link you posted clearly shows the superiority of the Indocyanine Green test and concludes that lymphoscintigraphy is more likely to result in false negative findings...
http://www.ncbi.nlm.nih.gov/pubmed/23523168
edited to add another reference above (hope it works)
Time for a second opinion? Perhaps from Iowa's Dr Chen - even if you have to travel, it might be worth it. Like you, I would consider the bypass/anastomosis procedure but not the more invasive node transfer.
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I'm waiting and watching for any of this to come to southeast Florida. We are one of the breast cancer treatment hubs of the US so I expect it to happen soon.
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Dejaboo, no idea why Dr. Chang would use the lymphocintigraphy when the Indocyanine green is superior! I actually hadn't heard of the second one until I read this thread. Then I did some research on it and got immediately aggravated that Dr. Chang used the first test to make his unequivocal diagnosis. Grr!!!
vinrph, I already got in touch with Dr. Chen.
He is a very nice and very accommodating doctor (unlike Dr. Chang, grrr again.) We emailed back and forth and he gave me some very good information. I am going to see if I can have the Indocyanine green test done here and the results sent to him. If he assesses me to be a good candidate for the bypass, I will go for it. But like you, I'm not going near the nodal transplant.I will keep you both posted. Thanks for sharing and caring.
You know I just have to say this. I think that some of these doctors end up believing their own press so much that they forget they are there to help all patients, not just the cases that will put their research in lights. I wrote Dr. Chang a very detailed follow-up letter, explaining that I had seen Dr. Becker, etc., and that she had diagnosed me as having LE (I had already told him in my first email that I had seen her for the nodal transplant and had decided against having it) and he never even gave me the courtesy of a reply. I had to call his office initially to find out what he thought about my lymphocintigraphy, and his business office assistant - a very nice person - got in touch with him and got back to me. All of the communications were done through his business office assistant.
Well my swan song email to him was the link to the research that shows Indocyanine green superior to his test of choice. Take that, Dr. Chang. Loser.
Trisha
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HappyTrisha - glad you got in touch with Dr CHEN
so confusing!! Hope he can help you - he was very accomodating for us having to travel so far (and dr chang is in my back yard). Little dry on the bedside manner but I'll take that for how thourough he was and informative! Dr Chen's staff is great too - wealth of information0 -
Looking forward to hear what Dr Chen says. I hope you can have the test done locally. id like to see that done in my future...
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So here is the latest. I couldn't find any hospital that would perform the test. I guess they only do it as part of the LE surgery protocol. So Dr. Chen gave me the name of a doctor closer to me - Dr. Justin Sacks at John Hopkins in Baltimore. Of course I immediately emailed him a list of questions and he emailed back and asked me to call his office to set up a phone consultation. He had to cancel the one this week but I am scheduled to speak with him on July 3rd. I want to share everything with him but am a tad hesitant only because it appears he worked with Dr. Chang at MD Anderson. If I tell him Dr. Chang said I don't have LE maybe he will then dismiss the whole thing. I've got some thinking to do.
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This thread is extremely helpful as I try to plot my future. Indocyanine green...who knew!??
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My primary care dr. put in for a referral for me to meet with a plastic surgeon who does lva. The medical group is asking for more info as to why my primary dr. thinks it is medically necessary. I'm going to try to meet with her next week to tell her how depressed I am, how it dictates my life... Anyone have any other suggestions as to what she can tell them as to why I need to see the plastic surgeon? Thanks!!!
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If you havnt responded to standard therapy (ie compression, massage). Increased pain or decrease in use of your arm. Or just progression of the LE. Go online & print up studies. There are a couple from md Anderson. And several from others like Koshima, etc. Also the women's cancer treatment act of 1998 should cover this since the LE is a direct result of cancer treatment. Look that up & print it up. Also there is a consensus document published 2009 from international society of lymphology that states "that microsurgical techniques are currently the closest chance for a cure for lymph disorders" or something along those lines. If you have to just go to the plastic surgeon on your own. Pay for the consult if you have to to see a proper doc. If you can. Good luck.
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Oh...btw...any updates from anyone who's had the surgery?
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Thank you Amoc!!
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You're welcome. I'm having to deal w insurance issues too so I have learned a little through the process. Let us know how it goes.
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Just had 3 month follow up, all good news. Scars are healing well and I've lost 1cm from my forearm and upper arm. So I'm now going to try and reduce my time in compression. My surgeon said this will be a bit of trial and error as the numbers of patients who've had LVA is still too small to really give any clear idea of who will or won't be able to give up compression.
Funny enough after hating my compression sleeve for so long I'm now a bit nervous to stop wearing it but I'm going to try a few hours a day without it, gradually increasing it week by week and still wear it for anything really active and forever if flying.
Hope everyone is getting on ok!
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Good to hear Olivia82! I hope it goes well with reduced compression time.Check back & let us know
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Olivia - Great news!! And I know exactly how you feel... I almost feel like the sleeve is a "security blanket" and am afraid of a crazy flare up. Very glad to hear you have a noticeable difference and are healing well.
I have seen a reduction in 4 areas of my arm over 1cm to 1.5cm consistantly with weekly measurements at PT. My hand has come down considerably, but is far from perfect, with using the lesser compression. Trail & error to find the right combo!!
I had my god son's wedding this past weekend and did not wear ANY compression all day long... it was so liberating and scary at the same time. I was shocked (as well as my family) at how good my arm and hand looked - it was awesome!! I was tempted to keep it off going forward, but I am chicken!!!
The best part is the relief of heaviness in my tricept area! I was able to dance all night long!
Hope you are all doing well and making progress with Dr's & Insurance companies!!!
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Great news, ladies! So happy and I look forward to continued success for you!
Pictures??
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Have a phone consult scheduled with Dr. Sacks tomorrow morning. Will let you know what I find out.
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Hard to take a good picture - but here they are side by side. I love seeing the wrinkles in my wrist again. This was after 2 days no sleeves and after working in the garden - I think its awesome!!
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Pics are fantastic! U look great. I'm having a terrible flare up last week or so. I'd be so happy to have mine stay at its 'best'. I know it's not going to be cured but I'm so over these flares. It's mentally exhausting. The pics are fab! The studies from MDA has it getting better & better over the first 12 months then kinda plateauing. So it may get even better over the year. What I'd be happy with is maybe just compression at night. Or every other day....anything is better than 24/7. Good luck to everyone! And keep posting.
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Msgumbas...did you have pitting edema before surgery at all? If so, do you have any now? I usually don't have but minimal pitting around elbow but with flare up it gets really really bad....maj pitting. Then it wil resolve with no real reason why it acts up or gets better. for example, some times I work out my arm super hard...it will look fab. Then other days I won't do anything & it'll blow up. Some days I'll drink enough water to drown & it'll look bad & swell. And others I'll have a girls night & drink away too much & it'll look great. Wtf!
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Amoc - no major pitting before or after. Scary - I noticed the same as you - the more I do the better it is!! And cocktail nights seem to make it the best!!! All the wrong things make it right! I've been trying to track barimetric pressure & measurements too. It seems the humidity isn't bothering me as much as it used to and low barometric pressure makes my arm perfect!! I need to find somewhere to live with no humidity & low pressure lol!
I get your frustration. Even if my arm doesnt get any better I am happy with the results for such an easy surgery! Hope you work things out with your insurance!!
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Thanks for checking in mjsgumbas- things sound like they are going very good!HappyTrisha-good luck at your appt today!
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Looking good!!
Happy, hope your call goes/went well!!
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Mjsgumbas thanks for your reply. Im so encouraged with your posts. Yes mine will be practically no pitting & barely noticable swelling to scary pitting & really noticable. The only thing a bit encouraging with that is my surgeon is optimistic that it goes way down on its own & the pitting seems to be fluid which usually responds well to the LVA surgery. I went to my PT today since its flared up & it's much better after seeing her. Ive set up appts 2/week til i go on vacay to england on the 20th. Hopefully it's on it's way back to 'normal'. I just lose it when it flares up. I hate it. But it does always go back down. I think i need to workout more & clean up my diet again. Ive been eating kinda bad lately & slacking off the workouts. That's when it's the best. Oh yeah....since I'm off for holiday tomorrow I'm having a little vino...And wouldn't you know it....it's better than its been w/ this flare. Wouldn't that be hilarious..."whenever I have a flare of my LE I just drink a bottle of trader joes two buck chuck & I'm cured!".
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Ooh. I forgot to mention you should move to houston (not!). It's 101 with 90% humidity. And I workout in a warehouse w no AC. Hmmmm....I can't imagine why my LE has flared
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I'm still scared to work out. I've read the guidelines in step up... but am still nervous. I occasionally will do 20 min of water aerobics but thats about it. I don't drink but maybe I'll start?? :-)
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woke up this morning & the flare is gone. It's back to 'normal' (ie it's barely noticable stage). I'm gonna be sticking to PT for sure. She worked alot on my chest & back because the radiation has done a number on my pec & the scarring n my axilla has pulled my shoulder blade. I think that doing that opened up some channels because it's like poof gone when after 2 weeks of wrapping & pumping did absolutely nothing. Well. Whatever works I guess. I def think working out helps mcgis. Of course follow those guidelines. I think I remember it says to get a trainer? I always thought that wasn't realistic for most as trainers are so expensive. But if u can afford it then def go for it. Check out a couple web pages. 'Crossfit through cancer' and 'strong sexy cancer free'. Same girl on both. Has LE. Her arm was huge. But after a year of massaging & crossfit it's barely noticable. She is ripped & her workouts are insane. She posts video of her workouts all the time. Very encouraging to me.
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