LVA surgery - bypass surgery - Have you done it?
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Sorry for the delay in response.... I don't like typing on my phone or ipad - it seems to take too long, so I figured I could check in when I get back to work & can speed type!!
Dejaboo - Sorry I haven't gotten back to your PM - will hope to in the next day or so. All I have been told for now is to continue with compression. Not much else to do at this time. The measurements are such a "not exact science" and the pictures really don't do justice. I had a really good day that day, with my hand, as all I did was sit in the car and have lunch. Didn't use my hand for anything, so it really looked as if there was no LE at all. My right hand measured 22.1 and my left 20.6, which really was good.
Olivia - Thank you!! I'm better now that I was last week... I was so looking forward to similar results as I've had with my arm, but not in the cards right now. I'm glad to hear you too are still doing well 2 years out. I do have good days and bad days. My bad days are usually my own fault, as I have a tendency to overwork that arm and don't know when to stop. But those days are few and far between. I never expected perfection and am elated with what I do have.
I'd love to hear how/what you are learning about VLNT... please keep me posted. All of this is fascinating! I'm glad that there are people even trying to help those of us suffering from all of this!
I was genuinely happy Dr Chen was honest and didn't try the surgery just because. I admire him for his efforts in pursuing relief for this mystery disease that is still ignored by many.
Wishing you all well!!!!!!
Mary Jane
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no rush mj, whenever you have time
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Any updates from those that have had surgery?
Any newbies for LVA surgery??
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Those that had LVA surgery- Would you share what your follow up care was.
Did you wear your sleeve/compression right after?
Are you still wearing it now? How long has it been since your surgery?
Did you require PT after your surgery? For how long & how often?
Anything else??
I hope you all see this & will comment- Thanks!
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Ladies who have had this surgery--will you eventually be able to exercise without compression?
I'm an avid cyclist and would consider this surgery if I knew I could dispense of my sleeves when I ride. Please let me know what your experience is, or what your doctor has indicated. Thanks!
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MJ - My spy before my VLNT showed absolutely no flow in my hand as well... I had zero working lymph vessels. I am eager to see what things look like when I go for my one year follow up. Things here are progressing ever so slowly. It is definitely a lesson in patience. My hand is still not back to where it was before the MRI explosion, but at least I can go without a glove/wrapping most days of the week. This is highly dependent on my activity level as well. Scrubbing bathrooms is certainly not my friend and I feel like I have sufficient grounds to argue hiring a house cleaning company with my husband...
Anyway - just thought I would let you know that I share in your frustration. I still remain happy that I did VLNT, I just have to keep reminding myself that it can take up to two years to see final results and that I can't disregard the progress I have made, even if it is slow! Hang in there.
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Good to hear you are still making progress Nordy. Even if slow.
any others want to check in? ? ?
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Would love to hear how anyone who had the surgery is doing, if you feel like updating.
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Anyone want to check in & update?
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I will check in - but I had VLNT, not LVA. Things are going okay. Up/down/up/down... BUT, overall down more than up. I do notice that I have to be more aware of the amount of sodium I take in... And I also cannot wear any sleeves that are too snug (which actually is not any different that prior to surgery - but I thought maybe my arm would tolerate it more - it does not). I can finally see all five fingers most days instead of just sausages, although my 4th finger still swells up more than the rest of them. It is very slow going and some days very frustrating, yet overall I am very glad I did the surgery as I do feel it is helping even though it is taking forever! I am happy to answer any questions!
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So I had the SPY test in mid June (turns out I dont have LE- Just PMPS-Post Mastectomy Pain Syndrome) Which I made another thread for.
Anyways...I was wondering for those that had the SPY test...When did the Dye spots go away? (they told me they would fade within 3 weeks) Out of the 6 injection sights...I still have 5 visible. One I can barely see. 2 are less faded & the last 2 on my node arm are pretty prominent still- which seems odd to me since I dont have LE- they should have fade by 15 weeks.
Anyone want to check in here & update how you are doing post LVA surgery?
Any newbies that have had the surgery done?
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I finally get my consult with Dr. Chang Oct. 11. My MO said - the PS usually like the hand to be fatter than yours, but I'll let them make the decision. I wanted to smack him. I have very tiny hands, so unless you compare them side by side, it's all relative. In fact, when I got back home, my sister said, "Your hand looks better." Then I held up my other hand. "Oh."
(sigh)
But I got the consult!!!!!!!!!!!!! *happy dance*
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Dejaboo - the last spy I had done, the spots lingered for weeks (approx. 4 weeks), which never happened before. After my LVA surgery, all the dye injection sites lasted several weeks also. At that time, I just figured during the 8 hour surgery, he must have done multiple injections, hence the long term spots. I think that's a little crazy that you've had them that long... but I would maybe ask if anything can be done to help move it along...
Frill - all the best with your consult! Keep us posted on what happens!
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Frill that is great that you have a consult scheduled. Check back in after & let us know how it went.
Thanks mjsgumbas- the dye spots dont really bother me- it just seems odd for them to last so long. I am still waiting for my test result copies from them- so I dont think they would answer a question about my dye dots...I guess since I dont have LE- they are done with me
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I'm a little late joining the party, but had a VLNT on 31 Aug. So far, healing seems to be going pretty well. The recipient area feels completely fine. The donor area (L groin) is still sore, but getting better every day. I haven't seen any change in my arm yet, but the doc expects it to take 6-12 months. I got back to running and working out last week, though not at 100%.
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The consult went great! My MO was so negative about referring me - "They are very picky about who they take. Your arm isn't big enough. Blah, blah, blah." I can't wait to tell that jerk - or tell him to look at the doctor's notes where he says I'm an IDEAL CANDIDATE.
Now what scares me to death is insurance not covering it.
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That is great Frill to hear that you are an ideal candidate for the surgery. Grrr to your jerk MO.
Good luck with your insurance co!
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Frill, so happy for you. Depending on what state you are in, the insurance company might be required to cover it if the lymphedema is the result of breast cancer surgery. They are here in NC.
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DocSR: My policy does say it is responsible to pay for lymphedema as the result of bc surgery. It also says they won't pay for "experimental surgery." I'm afraid they may try to use that on me.
I suppose no one who can add works at insurance companies. I can add the cost of three hospital stays (one 8 days) and 2 ER visits, plus the lifetime visits to PT, compression garments, etc. and compare it to two surgeries, one of which occurs during the reconstruction. Cost/benefit analysis, people. It's so frustrating. But I hear back on my surgery date this week. THEN I hear whether insurance will cover it. That seems bass-ackwards, but ok. Praying so very hard for a yes.
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I am interested in lymphovenous bypass. Has anyone had this? Also considering lymph mode transfer. Has anyone had success and with what doctors?
I am so frustrated with the lymphedema in my hand and arm. The sleeves make my hand edema even worse and the glove helps but it still blows up!
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I thought I had told the whole story of my surgery and everything here - I definitely wanted to keep everyone up to date. I think I've about used my typing time, though, so I'll update tomorrow.
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I definitely feel your pain. For people like you and me, wearing a glove all the time is a must, at least before surgery. Wearing a sleeve without a glove leads to all sorts of hand swelling and pain. LVB is far less invasive and should be a first choice if you are a candidate, but not everyone is. I wasn't so had to have the transfer. Healing from that takes a lot longer and time out of work is longer, but at least I am seeing some improvement. I will probably need a second transfer in a year or so, but time will tell.
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I'm hoping for the bypass because I'm a nurse working prn (I'm also working on my master's to become a nurse practitioner) and I just got back to work. 7 months with no pay was tough! I'd like to have the shorter downtime then do reconstruction later.
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I'm going to use pieces from my response to Help3 to tell about my experience. I actually accidentally slept with rings on last night. Yikes! But I did it!
I had surgery Jan 10. I just saw the doctor for a follow and he's happy with the progress, although I wish my hand was smaller. However, I will say that a test ring I use that I once wore on my left (affected side) ring finger now goes on that finger every day. Before surgery, that was an unusual occurrence. Another positive is that my arm is *far* more responsive to MLD than before. I had a pump and it was working great, but now just manually I can get good results.
My doctor says it takes about 6 months for everything to even out and to be patient...that my results so far are very good.
At my hospital a new surgeon from Scotland just joined the staff, so there are now two schools of thought re compression after surgery. My surgeon trained under the creator of the surgery, Dr. Chen, and he told me all about what they had learned over the years and he did things certain ways. One important thing is no compression garments for at least a month after surgery and only when doing activities that typically aggravate LE, like flights, repetitive motion activities, long drives, etc. No wrapping, no using a pump, either (if you're currently using one). No wearing compression at night, just during these kind of activities. The Scotland guy starts compression 24-7 a week or so after. He also is doing the surgery before women get LE to prevent them from ever getting it. How cool is that? Why the heck didn't my MO refer me for that? Omg I had to practically force him to give me the referral because he said the reconstruction doctors were very particular about who they would perform the surgery on and he didn't think I would qualify. One of my other doctors told me Dr. Chang's notes said I was a "perfect candidate" for this operation. I almost wish I hadn't fired him by that point so I could shove that in his face. But ANYWAY lol....
I was a little atypical in the incision department because he only had to do one incision. That is pretty rare, though, he said. My incision was above my elbow, which also was rare. Dr. Chang said that it's usually 4-5 incisions, but they are not a big deal. They're not deep, I'd say about an inch long and while there's stitches, they seal it with that --- I'm drawing a blank as to what it's called, but I'm sure you know what I'm talking about. It was all gone in less than a week.
I took a little over a month off, but there were several reasons for that. 1. I worked a bunch all through treatment and had just gotten to the point where my butt was kicked. I needed to take a break and just rest and heal. 2. I'm a lawyer so basically I sit and type all day. One of the things you're not allowed to do - with my surgeon - is no lengthy repetitive motion activities and no lifting anything more than 5 pounds. The lifting really isn't an issue, but not being able to type was just a good reason to take the time off. I was in bed with my arm propped up on a bunch of pillows. Lol, right now my arm is up on a bunch of pillows at work.
Now I wear my compression sleeve on long trips or things like knitting. MLD, but not the pump. And this is only 3 months in. Thank you, thank you Dr. Chang.
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We value all updates on the bypass type surgeries. You are breaking ground for us. Thx
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So my update: I am six months out from the surgery. After about three months, I started noticing a change in my right breast lymphedema, which is now down to pretty much normal. My right arm has not changed yet, but my doc thinks that is a function of not having working lymphatics in the arm. He said the nodes work locally like a sponge, but to work on areas farther away, have to build a new network of lymphatic vessels, which takes up to 18 months. If I don't wear compression garments, I still get arm pain and swelling, so I am in them 23/7 (out for showers and such). The majority of my lymphedema is in my proximal forearm but also involves the distal upper arm and fingers, especially the index finger.
The plan for me is to watch it for another year. If it improves sufficiently, nothing more to do. If it does not, I will have the high speed MRI again to see if I have developed any lymph flow in my arm that would make LVB possible, particularly LVB in the wrist/forearm area. If that is not possible, I will consider a second transfer into my wrist.
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Amapola36: I'm glad I could give you some help/hope. Sometimes we can get short of that around here. The Scottish doctor's name - I think, looking at the website, is Dr. Mark Schaverien. Dr. Chang is wonderful, but my friend that has the other doctor loves him, too. Insurance covered the surgery. My MO referred me to reconstructive surgery, which is where I was assigned to meet with Dr. Chang. If you want to actually come down and meet with them, I believe there are instructions on MD Anderson's website.
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Frill - Was the Dr. Chang you went to, the Dr. Chang at the University of Chicago? I'm seriously considering the surgery now since my LE has advanced to having to wear the sleeve and glove every day instead of only when doing problem activities.
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Hi all,
I have one more neoadjuvant chemo taxol to go. I have two positive nodes that have shrunk by over half.
Going into Noeadjuvant chemo my surgeon implied she was going to take the two nodes plus a couple and that she was going to do on the spot pathology to help determine where to stop. Now she has reversed her recommendation me signed up for axillary node dissection. And said she wants to preserve the lymph tissue for better diagnostics so no onsite pathology...
I have been doing everything to avoid the disection ALND. I really thought she was going above and beyond what my other surgeons wanted to do all along which is the standard cut them all out.
My breast tumor is gone. I just have 2 shrunken nodes...any advice before I succumb to over cutting of my lymph nodes?
Thanks c
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Brithael: (I hope I spelled your name right, I don't have my glasses on!) My Dr. Chang is in Houston, but his twin brother also does the same procedure up north, so if you're finding a Dr. Chang there, I suppose it could be him!
Here, they prefer softer skin that hasn't gotten fibrotic (I think that's the right term) to get better results, so I would say if you feel like you're getting worse, get thee to a hospital that frequently performs the surgery and has experienced surgeons. Also, try to follow all those LE rules. I find mine still is cranky if I'm not drinking enough water (esp that one) or I overuse my hand.
Please keep us posted with what happens!!!!
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