LVA surgery - bypass surgery - Have you done it?
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kimber, I do hope you'll continue to post as your healing progresses, and especially in the next year when you'll get a sense of longer-term benefits you may get.
I met with an LE therapist for a meeting about LE advocacy the other day, and the conversation turned to the surgical treatments for LE. She reported that she had one patient who had LVA about a year ago to treat LE of her leg. The therapist says that the patient has not had her LE resolve, but she has seen a lot of improvement in what had been a highly fibrotic condition. That's encouraging, but it's still anecdotal and I wish the community of surgeons performing this procedure would set up a reporting mechanism so that we could all benefit from more breadth of information about results, including better understanding of who is a strong candidate. I don't think the surgeons are sharing, and that's a shame, because they're all on the same learning curve and it seems like it could be shortened a tad if they had an organized sharing platform.
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Carol - my LE PT has a patient who had the LVA for her leg too (after an accident, not BC). This patient had noticable improvement and relief, but with gravity, LE is difficult enough to treat, especially in the legs.
My surgeon asked me to keep a log from pre-op on and if I notice any significant changes to note them in a timeline. I've been emailing him periodically. He asked this because they are compiling the results to have a better record of statistics. He is working with 2 other surgeons - not at the U of Iowa, but elsewhere in the US (I did not ask who), so they can create a uniform platform and was going to reach out to other surgeon to have a cumulative record. He wants to extend follow-ups, to keep track of long term progress. That is encouraging!!!!
One Dr has to take the lead on this, since there are not many in this country, to get everyone on the same page. Hopefully it is truely in the works and helps get the word out about LE.
I was discouraged most, that thru the entire BMX process, I was not told of the risks of LE. I know the most important part is to get the cancer out, and the possible risk of LE would not have you proceed differently. I read about it in my "cancer bible", so when I noticed the 1st signs, I got right in to see my surgeon and into PT... you all know the rest!!
I did ask BS when I went to see him, why my chart or the nurses board in my room post BMX, did not include no blood pressure or blood draws on the arm they had removed 24 nodes from!!!! Everyone that was done during my stay was on that arm as it was most convenient when they walked in the door. Never got a straight answer for that. Found out after LE was found - don't let anyone do anything on that arm!!!!!
The woman who fit me for garments, who's been doing it for 23+ years is also annoyed that it isn't explained more, so people do know what to watch for. The faster you get to treating it, and knowing what to avoid, there is a better chance to keep it in control.
It's difficult, because you are healing from major surgery and can't know what is surgical swelling or symptoms of LE!!! It is one big circle...if this person said this, then maybe it woudn't have been too late... it is what it is. Too late to change anything now, but we can speak up to our Dr's so maybe they include it in the BC pre-op clinics.
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I think the surgeons doing LVA are sharing their results, especially in Europe. The problem is it takes a long time for medical research to get published (and often lots of positive work never reaches publication). So, unless you start attending medical conferences you're unlikely to hear them all together discussing their current findings.
Maybe it was all more simple when we just went to our doctors and let them do all the research!
I think the most important thing if you are interested in (any) surgery is to get a few opinions, find someone you trust and get a good grasp of their results. One thing I liked about my surgeon is that he turns down 60% of patients for surgery as he couldn't see good vessels, a good sign of a cautious man in my book!
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I havnt checked on this thread for a few days. Reading today it saddens me that Kimber (and prob others out there) are now discouraged & won't post. I figured that would happen & I'm pretty sure that's the reason you can't find a lot of posts on surgical treatment on these boards. I understand the controversy but I propose we get back to the original intent of the thread. No debating but just posting actual experiences by board members Sound good?
Well, I'll be seeing my surg again next Tues to follow up and see what he thinks about me having (or not) the LVA. I will post & let everyone know what we discuss & decide.
Please keep posting...all you that are already & anyone out there that hasn't. Whatever your experience is.
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Hi All!! Sorry I haven't checked in for a while! Crazy week... my daughter just turned 21 - lucky me!! Been celebrating, planning her party and we are hosting a Memorial Day BBQ on Sunday! I am a masochist - lol!!!
Had a great visit with PT this week - I have come down in the forearm and above the elbow over 2cm in 3 measurements, since we started all this and I'm down almost 2cm at the wrist. She was excited to finally be able to massage the area of incisions (weird) - but it did make it awkward to work around that area. I am so happy to see my wrist bone, tendons & muscle definition in my whole arm. It's been so long!!! It's not perfect - but so much better!!!!
Will probably need to be fitted for a custom glove, still have puffiness in the top of my hand, after compression. It's all good in the morning, without compression. Trial & error! Still trying to be patient too... catch myself alot using my right arm. I am allowed to, but don't want to over-do it! We all know it takes alot longer to heal internally than what we see externally.
Good luck Amoc with your appt on Tuesday!!!
Olivia - you made some great points. I feel, most important is your comfort with your Dr. Whether it is a surgeon or even just a family practitioner.... your gut will tell you if something isn't right.
Glad to hear you have an honest surgeon that turns away work. There are alot of butchers out there.... but that's a whole different subject.
Olivia - hope you are still seeing progress and feeling better!
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Dr. David Chang is quite experienced in lymph node transfer. He is at UIC Chicago.
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Amoc, good luck next week! Mjsgumbas, thanks for the updates - nice to see improvement!
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Thanks to all for posting. I have written to Dr. Chang but don't have a lot of hope I can actually get the surgery due to finances. I am praying that there will be treatment for me that is covered by my insurance somehow someway. I'm so saddened and discouraged today.
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Marie - hope today is a better day for you. I hope too that u can meet with Dr Chang and that he can help you with whatever may be available in your situation! Please keep in touch and let us know how you are doing
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Had my follow up today with surgeon. My lymphedema hasn't progressed (that we can see) but I told him when it does flare up I get very very depressed. I change my plans, etc. Although it is mild--it affects my life a lot ( as I know u guys get). So.....me & him decided I will have the surgery after my summer vacation. Early August. Havnt set the exact date yet. It's gonna be hard to wait. Interesting he doesn't wrap or do any compression 2-3 weeks after surgery the you can return to treatment, sleeve, etc. Hope everyone is well! I wanna read more updates
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Not much to report here, arm does look smaller but I think my good arm is too, probably lost some muscle in 2 months of not doing much! The dye is FINALLY going and the scars are looking good. I've now gone back to running (plus it's been unseasonably warm here) and my arm seems to be behaving itself so positive overall.
I've got another follow up with my surgeon in a few weeks so I should know more then and hopefully will go down to wearing my sleeve every other day.
Mjsgumbas - fantastic progress!!!
Amoc - I'm the same as you, everyone tells me they wouldn't know any difference with my arm and I should just get on with normal life but I've really struggled with this whole LE business and I flew through chemo and mastectomy so it's not really like me. My post op regime was no bandage for 1 week then back into compression sleeve at week 2 so think they're all a bit different. Good luck with your pre op planning!
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Amoc - that's great that you did get your date. Funny how different the "after care" is... but I've come to see on different threads, different surgeons have different procedures. Some won't let you shower post BMX, but mine had me shower the next morning in the hospital. Wishing you well and that you do have some relief from this procedure.
Olivia - the dye is crazy... mine faded within about 10 days, but you still have it after 2 months???? Glad to hear you are moving on to your old routine, with warm weather and you haven't had any reprecussions.
I'm about the same... still have a puffy hand. I didn't realize how much swelling I really had in my trunk area and by my arm pit. There is an incredible amount of relief there. I can see muscle definition in my upper and forearm. And best of all - I have a wrist again!!!!! The "spongyness" is gone too. Absolutely amazing.
I compare my arms multiple times a day. My right arm is bigger - but I am right handed - it's always going to be bigger. But I can feel a huge difference. If that's all I get out of this - it was 100% worth it!
Hope you are all doing well!!!
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I'm glad to hear y'all are doing well Olivia & msgumbas. My surg thinks it will help my LE alot. When I asked him If he thought I should do it he said its really how it affects you. I said it makes me extremely depressed & dictates my life. If my arm is good I'm happy & if it's bad....well I won't go there. Not to mention the pain, achiness, etc w flares. He felt since it does go down to min swelling on it's own that I have functioning lymphatics in my arm still which he said is common if the LEhas been a year or less. Please keep updating guys. This thread on this site is prob the only place actual patients are posting results of this procedure. U know if we were looking for info there are ALOT more women doing the same. Pics are always nice too
How do u post pics btw? I have a pic on my phone of my arms. I know it was bra very premature before pic.....0 -
I figured it out. This is on a good day. Not the greatest pic. Ill hve to take a more detailed one b4 surgery
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good to hear from all of you0 -
Amoc - LE is a pain in the A$$.... especially after everything else we had to deal with - to end up with this crap stinks.
Thanks for the pre-op pic. You do have minimal swelling, but it's so hard to tell in photos. What you feel is what matters too!
I'm taking my first flight tomorrow since surgery... little nervous, but luckily it's a short one, so hopefully minimal swelling! Will check back after our long weekend visiting Elvis - so excited for good BBQ and blues!!!
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Good luck on the flight mjsgumbas!0 -
Amoc. I think there is a girl named Helen that posts her lymph surgery on her blog. Maybe if you check the previous posts she might have posted and I have read her experiences before. I am so excited that you girls have taken the big plunge.
Just did a search and can't find a post for Helen and Lymph node transfer. I bet Binney knows.
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That'd be Helensamia, who posts on the "Meeting with Dr. Becker next Friday" thread. Her blog is here:
http://lymphnodetransplant.wordpress.com/
Happy travels, mjs!
Binney0 -
Thanks hugz. I've read that blog. But we are talking about the bypass, not the transfer.
Msgumbas-- it six big time. And the pic looks better than it really is. That's at it's best. It will fluctuate up another 1/2 cent then go back down to that pic. If I could keep it like in the pic I'd be happy. Less flare ups, etc would make it worth it. Please kept us posted & have fun!
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Actually, Helen's blog also covers LVA surgeries as well, and she posts other articles of general interest about lymphatic microsurgery, research initiatives, health issues and recovery. She's hoping to gather a wide variety of experiences in a single place in order to provide a patient-oriented perspective available to anyone considering these procedures.
Be well,
Binney0 -
Thank you Binney & hugz - I'll have to catch up with that after vaca! It's good to know there is more info out there!! There are so many threads on here, it was overwhelming when I started looking for info.
Here's to hoping to not think about LE for a few days and enjoy a trip with my kids! All big Elvis & blues fans (oh & bbq too) so it should be a great adventure!!!!
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Hope you don't mind me jumping in on your thread. I have an appointment scheduled with Dr. Chang in July. I had the lymphoscintigraphy here and overnighted the results to him. He is going to evaluate it and tell me whether I am a candidate for the venous bypass. If I am, I will fly to Chicago and have it done. If I'm not, I don't want the node transfer so won't go any further in that direction. I will keep you posted. I was looking for the Dr. Becker thread and found this one so thought I would weigh in.
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HappyTrisha - welcome!! Can't wait to hear what Dr Chang has to say!!
I faired surprisingly well with the flights & the unbelievably humidity in Memphis! I thought Chicago got bad in late summer.... holy cow was it hot!!! Even with all the humidity, walking and beverages - didn't have any crazy flare ups!!!
Only bad thing... 1 stinky mosquito got that arm on the back of my tricept
thru my sleeve too - 2 side by side bites!!! I couldn't believe it! So far so good though... had to put a bandaid on for the night. Seems like I was scratching in my sleep!!!Hope everyone is doing well!!!
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I'm so glad I found this thread. If anyone is willing to share her expense (even privately) if this is not covered by insurance I would appreciate that. I'm holding off on this a bit because of vacation time, but carefully considering this for early 2015. I'm still waiting to hear from some women that: you saw an improvement and are actually better, you are totally happy that you had the procedure, and aren't dealing with any downsides. I truly thank and appreciate all your warriors on the early end of the curve. Because I use most of my vacation time to care for my mom with Alzhiemer's, I'm in conservative mode right now. Any down time or unexpected issues take me away from her much needed love and care.
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This was on the IL ladies thread I follow. It may not apply to some of us now, but I think it is pretty important for all of us, as we don't know what the future holds for us & medicare. It took very little effort via the link at the bottom to email my congressman to help get this passed. Hope you'll take the time to help out our sisters that may benefit from this soon:
I have a friend that is a physical therapist and lately she has been specializing in treating women who have been diagnosed with breast cancer. She brought the following information to my attention and I wanted to pass it along to you:
Currently, Medicare, and consequently many other policies, do not cover one of the critical components of lymphedema treatment, the medically necessary compression supplies used daily in lymphedema treatment. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.
There is a Federal bill being proposed to change this.
The Lymphedema Treatment Act will improve coverage for the treatment of lymphedema by amending Medicare statute to allow for coverage of compression supplies used in the treatment of lymphedema.
Specific goals of the Act are as follows:
- to provide comprehensive lymphedema treatment coverage, according to current
medical treatment standards; - to enable patient self-treatment plan adherence by providing necessary medical supplies
for use at home, as prescribed for each patient (including gradient compression
garments, bandages, and other compression devices); - to reduce the total healthcare costs associated with this disease by decreasing the incidence of
complications, co-morbidities and disabilities resulting from this medical condition.
Go to Lyphedema Treatment Act to help support this bill.
0 - to provide comprehensive lymphedema treatment coverage, according to current
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Thank you all for posting your experiences with the LVA. My primary doc put a request into my insurance yesterday for me to meet with Dr. Alex Wong here in Los Angeles. I'm keeping my fingers crossed that they approve it and that he finds that I would be a good candidate for the procedure. I think if I am I will hold off till after summer as well for we will be moving and that will be quite difficult with recovery.
Amoc...your arm/hand look amazing. Is it your left? I can barely see my knuckles on the back of my hand. My hand swells lots with a sleeve on so I typically only wear a glove. I'll wear the sleeve if I know I'm doing lots of laundry, cleaning, shopping...
I would love to see more before and after pics if there are other woman who have had the surgery. I noticed that the after care is different for some of you. One had to wrap for weeks, one just had to wear compression garments... I suppose it just depends on your surgeon?
Keep keeping us posted, please, on how you are all doing. And keep your fingers crossed my insurance pulls through. If not, maybe I'll go for the PPO insurance for next year!!!
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Truth stranger than fiction. My lymphoscintigraphy apparently showed that I don't have any blockages or obstructions and that my uptake is the same for both arms. Based on that, Dr. Chang has decided there is nothing to be done and has also decided that I do not have LE. (I was wrongly diagnosed according to him.) I am giving you the shorthand version, but I cannot tell you how angry I have been since hearing this. "Apparently" all of those who have treated me for LE over the past 7 years have gotten it wrong. And I guess Dr. Becker wrongly diagnosed it also? GRRR!!! If you didn't catch the sarcasm, I am absolutely saying that it's Dr. Chang who has gotten it wrong. But I'm not going to pay to fly to Chicago in order to disprove it. VERY disappointed. As an aside, when I spoke with the doctors who performed the test, they did say they would find it very odd for someone to have the test result I did and still present with LE.
So I guess I start to look for another doctor who performs the bypass.
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HappyTrisha - what exactly was the test you did have done? I can hear your frustration. Did you see Dr Becker? Sorry for all the ??? Just curious.
I havent checked in for a while... I think the magic number is the 3 month mark. Im getting closer to that milestone and have had really good days - since coming back from Memphis. Its been humid & rainy here and all is good. Im so glad - i was begining to worry about my hand (yes - i have no patience) but it has come down to almost normal. Even with gardening and lots & lots of cooking. Hope it continues.
Would love to hear from the others who've done it.... Hows the progress? Will check in soon and post some updated pix
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