Had VLNT or LVA? Please share here or message me!

Thanks for everyone's kindness. I'm going to keep doing my self-care and living. I've made good choices and done all the right things to heal. Hoping for improvement down the road still but living in the meantime. Recovery from this surgery has been so sedentary it just wasn't good for my body at all. I never get to the point where I really recover from the last one. Maybe now I will. Nothing is currently looming

Thanks, Carol. This was my 5th surgery with drains and I really think this round just whooped my body. Having to work full time has meant I can barely drive home some days. BC, I came home and went running long-distance, to spin class, etc. I really am eating kind of the minimum I could eat and not be really tired and hungry or damage my metabolism. I think I'm at the lowest healthy very low-carb almost al organic diet I could be on. Yet my weight continues to climb and climb. I left spin class before it started today. I was ashamed and left.

I am pretty sure chemo by its lonesome, whacks our metabolism. Like you, Maria, I move. A LOT. But still my weight climbs. And my diet and activity levels were pretty good previously, but now, it is all I can do to keep my (over) weight steady at 25 lbs too much. I was succesful at bringing it down 8 pounds, but still, I don't like it, and all my sweeter clothes are waiting. I actually have fat clothes for the first time in my life, but refuse to buy too many of them. Glad you came back to let us know how you feel. I am hoping that the VLNT or LVA recovers, when you move more again, and that it is just a temporary setback for you. Here's hoping!

Maria, you're not alone in the weight gain. Right now I am 45 pounds over my normal weight. Between the steroids during treatment, and the steroids after for another ailment, my weight just went crazy. I don't have lymphedema in my arm because I didn't let them take any nodes. But, I do have it in my leg from other surgeries. I agree with Tomboy, our metabolism just goes crazy after treatment.

Your body has been through so much within a short period of time with all of those surgeries. It needs some time to heal. You sound like a determined lady which will help get you back on track. I don't think any of us should lose hope.

Maria, thanks for being honest about the LNT. Like Nordy, I've thought about it for years. About the weight gain--I found I gained weight after the whole chemo/cancer experience, and the stories about how weight gain because of menopause was inevitable really scared me. Seemed like I was puffing up like crazy. But a couple years after treatment, I dropped it, my weight stabilized and now I'm the weight I've always been. I'm an avid cyclist, so that helps. I was in Asia last year for a month cycling and was the thinnest I've ever been. So the weight gain might be temporary and in a while you'll stabilize.

Mariasnow, that's great news!

Hi Nordy,

Other times when I have shared about my experience with VLNT, the discussion turns to all of the things that can go wrong. I hope I can just share my experience without being reminded of the risk I took:) I also know that with lymphedema there will always be a risk and I would rather not be reminded of it. I also know I prayed and prayed for God's wisdom about my decision, and He gave me peace in it. I do want to share my experience though, because I remember looking and looking for stories. I hope I can provide information for Nordy and others who are interested in the procedure.

I had my VLNT in February of 2012 at NOLA while having my reconstruction. I didn't know whether I would go through with it or not when I arrived, but had a lot of questions for the doctors. I knew that if I didn't do it then I might not elect to go through with another surgery. I also didn't know until I arrived that NOLA had changed from taking nodes from the DIEP procedure to taking them from the neck. I was not expecting a neck scar, but in the end I decided it was a fair trade for lymphedema. With God's strength I handled a stage IV diagnosis as best as I could, but developing lymphedema on my last day of radiation was about all I could handle. I know if you are reading this you understand the devastation as well, and my heart goes out to anyone who has a lymphedema diagnosis. My case was not severe, severe, (I'd say medium) and was oddly enough primarily in my hand. Dr. Trahan felt that the neck as the donor site did not carry a very large risk (and yes as I have been reminded there is a risk:)). I trusted him. Immediately, I noticed a difference after the surgery. My arm and hand were softer and the pain was gone. To this day I am doing well. I still wear my ring on my right hand, but I am free of my glove and sleeve during the day. I wear a Solaris at night and my garments when I fly. Although I just recently forgot it when I flew and was fine. I have had a few flare ups, but two to three massages have brought it back to my new normal. Also interesting to mention, is the therapist who gave me daily massages after my surgery saw many amazing results as well. Of course, I don't know how it is tracked down the road. Take myself for instance, I have never checked back in to document that all is well. I wish that someone (and maybe they are) would do a study to track that kind of data. That would make these kinds of decisions easier. Please let me know if you have any questions.

God bless you all!!!

I will jump in and say I feel your pain on the boards of so many wanting to discourage us from the surgery. I had a flare-up that got me super down a couple of weeks ago but when it passed things were better. I can say without a doubt that on average day to day my arm is better than before surgery. The flare-ups seem to be primarily caused by a bad diet day that includes sodium. I'm back to spinning and yoga. My arm seems to flare-up during exercise but quickly reduce afterwards. Before surgery exercise made it swell and it stayed swollen. Today I am happy I had the procedure.

Maria and Forever, you ladies are about the best source of the much-needed progress updates that I know of. I'm so grateful that you're sharing both ups and downs, and as Forever said, it would be so helpful if there was indeed a good reporting system to learn about the wider body of experience. It seems like there are so many surgeons doing LE surgeries now, there should be enough cases to provide some robust anecdotal evidence of what's working, and what's not.

Forever, did your surgeon explain why the center switched from diep nodes to using the neck nodes?

Thanks. Tonight my Lymphedema wrist looks normal and I can see my wrist bone almost the same as on my other arm. I hadn't seen this for a long time prior to surgery. I continue to be hopeful that something good is happening this week.

Mariasnow, my doctor told me it would be 3 to 6 months before I saw any real difference, and possibly a year before the new lymph nodes started to be truly effective. She predicted a 30 to 40 percent reduction for me. I am curious what your doctor told you?

Maria,     Did I read the end of your post correctly-that most people end up in worse condition than BEFORE their LNT?????  Your surgeon agreed with that???  Please clarify.  Thank you, katiejane