LVA surgery - bypass surgery - Have you done it?
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I’m so so so sorry to hear!
Maybe look into Dr Wei Chen now at Cleveland clinic for Vessel transfer (not node transfer). I had it done about 1 year ago and seeing positive improvement. My lymphedema was fairly advanced with all “speckled/stardust” pattern on ICG.
He said we could try LVA but he could not guarantee that any vessel were available... so I opted for vessel transfer (taken from my groin and placed in my forearm)...
Good luck to you... lymphedema is soooo frustrating!
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Inna, you may or may not have heard of this, but there is some research going on involving stem cell injections (derived from your own fat tissue) and treating lymphedema. It seems like much of the research is going on in Denmark. I don't know whether that would be an option for you, but I thought I'd throw it out there in case it helps.
Here is an article about it: https://www.prweb.com/releases/2016/06/prweb13508563.htm
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Here is one trial: https://clinicaltrials.gov/ct2/show/NCT03776721
Lymphedema is SO frustrating. I hope you find a good solution.
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InnaB2018,
I'm sorry your LVA failed. Like MLmom I am a patient of Dr Wei Chen. I also had a total stardust pattern on the IVG. But my lymphedema is in my leg due to melanoma and I had only 2 lymph nodes removed. So Dr Chen was concerned that I have primary lymphedema that was stimulated by the surgery. So he didn't want to chance causing it somewhere else by doing the lymph vessel transfer and we opted for the LVA. I just had it done on June 2. He was very concerned that he would not find any channels to bypass. So I was surprised when I woke up much later than expected to find that he had bypassed 6 in 5 incisions. The surgery took twice as long as expected. I stayed in the hotel on the Cleveland Clinic campus and returned for follow up 3 days later and he removed the bandaging. I was amazed to see a leg that looked like my other leg instead of a tree trunk. At 3 weeks (1 week prior to stitch removal) I saw my new therapist for the first time and she measured me to find my leg was 3.5% larger than the other one. That's the smallest it's been since my cancer surgery. Today is 6 weeks and I saw the therapist. She measured and it was 0.8% larger. Dr Chen says I should see improvement for up to a year. I don't think it can improve much more than it already has. My point is that I know you feel like you went to the best, but honestly Dr Chen is truly the best. And if you reach out to him he will actually talk to you before you spend time and money traveling to Cleveland.
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I’m going in for axillary dissection today and having the Lympha procedure done. I’m hopeful for positive results, and a little nervous. Had my DMX last week with sentinel node biopsy after 6 rounds TCHP chemo. Node tested positive and they want me back in surgery to get all the nodes.
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My surgeon was able to attach two lymph Chanel’s for bypass. I’ll now be measured and followed to see if I develop lymphedema or if this worked as preventative treatment
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Fab4mom - That's awesome that they thought enough ahead to do that. Most surgeons don't even think about lymphedema and how truly awful it is to deal with.
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my hospital is promoting it big time. They think it will greatly reduce lymphedema and has minimal risks. I will be tracked as part of their data, but my surgeon estimated chances of lymphedema were 1 in 4 with the node dissection, but after the lymph reconstruction, he put my chances at 1 in 10, or maybe 1 in 20. It’s new, so they don’t have firm data yet.
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Fab4mom - do you mind sharing the name of the hospitat you go to and surgeon for LVA? A well as any articles? The lymphatic therapist I see is very skeptical. Says she has had two paitients try it with no success. My oncologist says she has had one patient try it (Stanford, I think), with success. The Ibrance has shrunk the tumor from 2.5 cm to 7mm, hoping the August scan shows more shrinkage. I have said no to surgery so far, fearing that surgary in the Axilla will damage nerves, tendons, muscles, and make the lymphedema worse. Also hoping that Ibrance shrinks the tumor into oblivion, taking the lymphedema with it.
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I’m with NorthShore Plastic surgery in Northbrook IL. Dr. Sisco did my procedure and his partner Dr. Seth does them too. It’s with NorthShore Medical Group in the Chicago area
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I’m so grateful to see this subject resurface again, as I‘m considering a consultant for lymphedema. I have read through this tread and it’s very inspiring to think about better management of lymphedema. Would love to hear some results for LVA, Octopus and LVLT.
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I know of a few Dr doing it now. Dr Chen is a big advocate for it to become routine. It would probably spare a lot of grief to a lot of people. I hope it works for you and you never have to deal with Lymphedema! Good luck!
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I'm going fro my 1 year post Vessel transfer next week. Not sure what the ICG lymphography will show but I can tell you that my arm is much softer, somewhat smaller (it was never huge), had no infection in more than 9 months and no lymphedema pain in the last 6 months!!! I'm very excited and glad i went through with it!
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MLmom - than you for the posts. I hope everything continues going well for you and that the "not curable only manageable" statement becomes history. Not eager about surgery, but if it works and is minimally invasive, worth thinking about.
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Anewbreath - I had the LVA on June 2 with Dr Chen at the Cleveland Clinic. My lymphedema is my leg after melanoma and 2 lymph nodes removed. Dr Chen believes it is primary brought on by the surgery. So he did not want to do vessel transfer like MLmom had done because he was concerned it could cause lymphedema in the lymph the vessel was removed from. But my ICG scan only showed stardust pattern so there was no way for him to know for sure if he was going to be able to find any channel to connect. During surgery he does a different dye injection and mapping. So he was able to find 6 channels to connect thru 5 incisions. The bandages were removed 3 days later and the results were amazing. At 3 weeks my leg was 3.5% larger than the other one. It had never been less than 16%. At 6 weeks it was 0.8% larger. And at 7 weeks it was 0.16% smaller. So for me the results are awesome. I have suffered for nearly 3 years and have been on a daily preventive antibiotic for 2 years due to constant cellulitis infections. I was willing to try anything but am so happy I did. Dr Chen is wonderful.
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melalymophati - your results are amazing, I'm so happy for you!
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Has anyone done a lymphevenous bypass more than once? I had it in December at USC with Ketan Patel. He's a great surgeon, and was able to do 6 bypasses in 3 incisions. My arm is better, but I'd love to see further progress. Patel is not good with patient care—or basic communication for that matter! I learned after the fact that I was on the borderline for LVA vs lymph node transfer. Apparently there was almost no uptake in my armpit area, although he never showed me my imaging. Several months after the procedure, he told my PT that many patients need it done twice. That is never something he told me. But if it can help, I'd like to do it again, although I wouldn't go back to Patel. Any advice?
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melalymphaty-thank you for your kind encouragement and you have outstanding results!
I’m returning from a visit at the Cleveland Clinic with Dr. Chen. Definitely an incredible surgeon who has put his passion into serving under-treated, undereducated lymphedema community. I’ve learned quite a bit about my lymphedema and am grateful for the efforts I put into getting an evaluation. My original breast surgery was 13 years ago. Dr. Chen believes that’s when the LE started, yet undetected and without obvious symptoms, has now progressed to a heterogeneous disease with my RT upper extremity having solid lymph fat- stardust patters on the ICG and my RT lower extremity showing more of a fluid lymph state- earlier disease. My arm circumference difference is 3cm at the largest part. He’s recommending a 2-step approach - I have liposuction with skin removal on my upper extremity to clear out the buildup of lymph fat that won’t allow it to drain properly, and then 3-6 months later the LVA on my RT lower extremity. He believes in my situation this would be the best outcome for reducing future progression and better lymph flow in my arm. I also have the option to do just one of either of the procedures and that would provide some relief but, getting the solid lymph removed would be the most beneficial. I have lots to think about now. If, anyone has insight on any of this, I’d love to hear! Dr. Chen and staff were great to work with and I left the clinic with the knowledge I needed to mull over my next step, if I choose too.
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AnewBreath - best wishes with your decision.
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I'm not sure if anyone can help me figure out what to do. I am 12 years post breast cancer diagnosis and have developed lymphadema in my right arm. I had received lymphadema awareness/prevention instruction years ago, but got very relaxed about it. Pretty sure the combination of a cat scratch on my hand, lifting 60 10lb cement bricks (twice) and falling on my face and hurting my arm is what triggered this. All of this happened while covid started but, luckily, I was able to track down a physical therapist who could see me (during lockdown!). At this point, I am able to get the swelling under control with compression, a pneumatic pump, and a chip sleeve at night. But, I don't want to live like this forever, so I started investigating the LVA surgery (found out about this by coming here).
I'm kind of confused by everything/all the details of my situation and was wondering if anyone had any opinions. Basically, I'm trying to weight the money versus the benefit of surgery. Last year, I had to raise my annual deductible on my BCBS health insurance to $5k (to bring premiums down). So, I was hoping to do surgery this year as I've already filled my deductible (because of the pump). But, I don't think I can get this accomplished cause Covid is delaying everything. I have a doctor in texas who did my diep surgery years ago Dr. Chrysopoulous and another doctor in their practice, Dr. Ramon Garza, does the LVA, but he's only recently started it. He is covered in-network with my insurance. There's Dr. Granzow in LA, but he is not in-network with my insurance and I just found out that any out of network doctor has to fill a 2nd deductible of $5k for benefits to kick in! And, I have tried calling Dr. Ketan Patel at USC but they never call me back!
Also, it seems Dr. Granzow wants me to go for a limphoscintagraphy first and pay $800 for an appointment just to see him. Then there is an ICG test right before the surgery. I don't see any other doctors requesting the limphoscintagraphy.
So, here's my questions (sorry for the longwinded post):
1) How did any of you get ahold of Dr Ketan Patel?
2) Do you know the difference between a limphoscintagraphy versus the ICG? Is the limphoscintagraphy necessary?
3) Does anyone know how much Dr Granzow's surgery and other fees are? They won't even give me an estimate until I pay for the $800 visit (which I think is a little rude)
4) Anyone had the procedure done by Dr Garza?
BTW travelling to TX is doable because my family lives there... I've travelled there twice for diep surgery and revision.
Thanks for listening!
Amanda
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MandaLyn - I have had many of the same quesitons. Please continue posting as you find out more. I am also contemplating surgery, but it is not available where I live, and none of the specialists I see for cancer or lymphedema see to know much about it. I have been using an arm pump for a few months and it seems to help. Recently an arm/chest/abdomen pump was suggested as being more like a lymphedema massage. Does anyone have exerience with both/either. Thoughts? I was doing self massage prior to the pump, and should probably resume that. Self massage also helped. Is LVA surgery a better option? Looking for a tape measure that my very clumsy left hand could use to measure the right arm, having trouble finding one that I think I cold use.
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I went last week to the Cleveland Clinic for my 3 mon follow up and ICG scan with Dr Chen. I had LVA surgery in early June on my leg. I am still going to therapy once a week. My custom compression stocking wasn't right and had to be remade and hasn't come back in yet. So I am back wrapping my leg in short stretch bandages since my old stocking is completely worn out and was allowing my leg to swell during the day. My leg looks awesome and the measurements are great. But my scan didn't look much better than it did before the surgery. Dr Chen said it did but that it would never look like the other leg - which I guess is what I was expecting since it's looking like the other leg. He says I should continue to see improvement for a year. And I should get to where I will only need to wear compression 1 to 2 days a week. That will be awesome. I'm not there yet. I can't say enough about how wonderful Dr Chen is. My therapist asked me how I feel when I look at my leg. I told her I'm glad to see the improvement but I'm angry that I suffered for nearly 3 years with life threatening cellulitis infections every other month. And I'm angry for all the people who don't know that there is a solution to their pain and for the insurance companies who fight covering this surgery that is a total life changer. I hope this forum will continue to spread the word so more people can be healed.
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melalymphati,
I echo your anger about the lack of knowledge about options for surgeries. I was flat out told that they dont work and not to bother. I can only imagine how different my life would be should I have been told right away about LVA. I might have had a fairly easy solution to lymphedema and never worry about cellulitis. All we can do now is educate others as best we can.
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For those who have had surgery / contemplating surgery for lymphedema, please continue posting success, concerns, did it meet expectations, failures. There does not seem to be any experience where I am. Lymphatic therapist was not encouraging. Oncologist said one patient did go to San Fransisco with some success. Were you able to discontinue use of compression garments / pumps? Currently I wear sleeve/glove on affected arm. Also pump 1-2x/day. A pump with garment that includes shoulder/chest , even shorts has been suggested as being more "massage like" than just the arm, and perhaps better. The lymphedema was brought about by a 3rd tumor, this time in the R-axilla. BC twice on left wiut 1-2 sentiinal nodes removed with each surgery. Taking Ibrance and Arimidex. I have a sinking feeling that LVA surgery is not an option while tumor is still there.
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I would also be interested in hearing how various insurance companies have dealt with this, if anyone is willing to share their information. I have Wellmark BCBS, and they list the various procedures as 'investigational' which to me means, we don't cover it.
Dr. Chen was my surgeon before he went to Cleveland, and I sure do miss him!!!
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Hi, everyone,
I wanted to chime in. I finally have an appointment scheduled with Dr. Chen at Cleveland Clinic for the ICG scan on November 20. Yeah! It sure seemed to take forever to get to this point. I started exploring this in February, then I put it all on hold because of Covid, then it took a while to get a return call from his staff. But here we go!
I'd love any words of encouragement, as well as any practical hints for the scan itself.
Thanks!
Linda
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Hi Linda,
I have had a telemedicine appt with him and want to schedule my ICG scan. I will travel from CA and will need to do the scan and possibly surgery in one trip. Please let me know how your scan goes.
Amanda
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I had Dr Chen's office submit for pre-authorization for the LVA and BCBS said that this surgery didn't need an pre-authorization. I was worried about it, so I'm having them send me the letter with the specific surgery codes listed.
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Amanda - I have BCBS and they said no preauthorization necessary. Fingers crossed.
I'm traveling from Colorado, but my sister-in-law lives in Cleveland so it's a nice excuse to visit her.
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