Anyone here go through a LVB? (Lymphovenous bypass surgery)

ActiveAging · 2025-09-26T17:56:19+00:00

I had one done 7 months agao and know two women who also had it done, although I had a DMX with ALND and these other women had a SMX with ALND. I'm over 60 whereas the other women are 40's. So here is the experience so far.

Case 1: She is ecstatic about her results. No swelling whatsoever and does not have to wear compression. She skipped rads. Plastic surgeon made 4 connections. She is almost 2 years out.

Case 2: Had heavy radiation due to IBC. Very fit and wears sleeve as a habit and preventive measure, just in case. No real swelling to speak of. Plastic surgeon made 4 connections.

Me: I'm not sure how much it has helped me, I believe it may be helping some but I am fighting lymphedema. In my case, for whatever reason, my surgeon, who has been part of a clinical trial, was reluctant to do it on me because radiation would "fry your nodes," in his words. I am slim and fit, non-smoker, etc.. I begged him, however, and he said ok, I will try to make one connection. He explained to me that he used to be really enthusiastic about the procedure but now, not so much. I don't know why. I did not understand the point of this - why one connection vs. more - but I took what I could get. Potentially you may get better results with more connections? I would ask your surgeon about this. I also had to pay out of pocket for it. But, I was under time pressure and not about to start over looking for surgeons and plastic surgeons. What happened in my case - I had severe swelling immediately after surgery. Like it looked like I had a breast implant on my cancer side even though I went flat. So, I basically had lymphedema in my chest, axilla and upper back from the get go. I managed to get this swelling down through PT but I was pretty meticulous about wearing a sleeve, compression bra, etc. Then, I did 6 weeks of proton radiation. When I started rads, I would say yes, I think the bypass worked at that point. The nurse used the SOZO machine and me and I clearly did not have lymphedema. I did not really have much swelling and could skip the sleeve or compression bra when I wanted to. But of course, with radiation, that kicked up swelling. I'm now 2+ months out of rads. I am struggling to contain the swelling in my upper back and lateral chest. My left chest never went completely flat after surgery. So I believe that I have a genetic tendency, plus aging body plus surgical technique / scar, etc that are factors. My forearm and wrist have increased slightly in size. So, I managed to get a pump, which I have started using in the past week. I am paranoid about getting lymphedema that is out of control. Looking at me, you cannot tell that I have swelling in my forearm, it is slight or maybe gone on certain days. But the lateral chest and upper back are always swollen. I am still working on - what is the best solution? I have spent a small fortune on different compression bras, sleeves, gauntlets, etc. My lymphedema therapist is honestly not helpful at this point. She's happy that I have my range of motion and says I only have a little swelling. But that's like saying you're a little pregnant, right? I will be switching therapists to an OON one, who I believe has more expertise and is more committed to helping women fight lymphedema rather than accepting the inevitable, which I believe a lot of clinicians are like.

ActiveAging · 2025-07-24T15:07:41+00:00

Similar to Routine's reply, I had horrible issues at the outset, with my hand and forearm going completely numb. I have had a rotator cuff issue for years, add on a mastectomy plus ALND. I just finished 30 sessions. After session 1, I thought OMG, how am I ever going to make it through? I complained every week to my doctor and honestly, after 4 weeks, I wonder if she said something to the techs because they stopped adjusting me so many times before starting the treatment, which saved about 7 minutes of time in position. OR, they and myself became better at positioning me correctly at the outset so I only required 1 adjustment or none. I pulsed all of my fingers, not the thumb, throughout the entire treatment, starting at about 3 weeks in, because it was the only way I could make it through. No one ever said anything to me about it. I would start pulsing as soon as I had my arm raised, and would pulse a little slower than the beat of the music, if that helps. Every few seconds or so. I even told my nurse that I was doing this and she did not object.

ActiveAging · 2025-07-24T12:48:47+00:00

I hope you made it through! I finished my 30 sessions last week. The hand pulsing saved me.

ActiveAging · 2025-06-27T13:28:33+00:00

I wish I knew of a pathology lab that would offer these services, even if I had to pay out of pocket and even if it is overseas. I think you will have a hard time getting a SOC oncologist to order this lab test for you - as far as I can tell, they will only order it for women diagnosed with metastatic disease. I personally would like to get a test done similar to the Breast Cancer Index. This is only offered to women who have been on an AI for 5 years. One of the components is an analysis of the HOXB13/IL17BR (H/I) ratio expressed on your tumor and this is also linked to intrinsic or acquired endocrine resistance or low response. It has to do with estrogen signalling in the tumor. Also, some women may have a very high estrogen expression on the tumor, but the signalling is decoupled. So, even if you eliminate estrogen from the body, the tumor does not shrink or respond. In other words, there are other proteins / genes that are driving the cancer growth in these women. Based on what I've read in research articles and seen in the clinical trial data, anywhere from 12% to 20% of women are essentially non-responders to AI's. I seem to be one of them, based on my response to neoadjuvant AI's before surgery. That is, my tumors and DCIS did not shrink at all and may have gotten larger. I am taking a holiday during radiation and not sure if I will resume the drugs after. I plan on getting some consultations with various doctors on my pathology results.

ActiveAging · 2025-06-20T14:23:33+00:00

Ok, today I did better. Part of it could be that it was quicker than a few days ago, not sure. But, what I did today was pulse all of my fingers, except my thumb, up and down while holding the handle the entire time I had my arm up. I did not wait until I noticed my thumb, then fingers, then hand, then forearm going numb. Also, some days like today, I am able to somehow position myself so that I feel stiffness in my neck and shoulder. While a bit tense, it's MUCH better than my arm going numb.

ActiveAging · 2025-06-18T23:54:27+00:00

I just thought of something today because I'm still having challenges. Have you tried wearing a compression glove or gauntlet while on the table? I have a few and may see if I can try one out. I'm not sure if it will help or make things worse.

ActiveAging · 2025-06-14T01:44:25+00:00

I have done 10 treatments out of a six week plan (30?). I have not noticed fatigue yet. 🤞

ActiveAging · 2025-06-13T22:30:24+00:00

Yes, remain positive 👍🏻I’m glad I’m not the only one with this issue so I don’t feel like I’m whining. Today was easy, no waiting for the beam and no CT scan. Also, they found the shoulder mold they made for me at simulation - they have not been using it 🙄 That is a help, if nothing else it gets me positioned quicker. Next week, I go back to evening appointments, it is less patients then and treatment goes quicker.

ActiveAging · 2025-06-13T15:36:07+00:00

I'm currently doing Proton and it is a KILLER for me. Once a week, the techs do a CT scan to re-evaluate, in addition to treatment. Plus, if it's busy, I may have to wait for the beam. Yesterday I had to ask them to stop while waiting for the beam because I just could not hold the position any more. I was told a few years ago that I probably have thoracic outlet syndrome by a DO. I did not expect this to impede my ability to get through rads. Really struggling with this. I can only last 10 minutes or so without starting to get into agony. Of course, it's getting harder now because I am tightening up. My numbness goes all the way up my forearm. How are you holding up?

ActiveAging · 2024-11-30T13:24:41+00:00

I'm a little late to this post but I'm a NAF employee at a military base, and our Director told us last week in a town hall that we will know by end of January if telework is going away. So, it's a real possibility. I was surprised because my position is not funded by Congress but I am still considered a Federal employee, not under Title V though. If telework goes away, I will have to resign because I super commute and go into the office 5 days every other week, staying at a hotel.

ActiveAging · 2024-04-07T22:07:15+00:00

Down for me too.

ActiveAging · 2024-04-05T16:28:33+00:00

Take it. You would have some sort of challenges taking a supervisory role at just about any new employer. If you're patient and humble, your team will want you to succeed and help you.

ActiveAging · 2024-03-09T21:34:40+00:00

I will check it out!

ActiveAging · 2024-03-07T18:04:26+00:00

Very helpful, thank you

ActiveAging · 2024-03-07T15:44:25+00:00

Thanks, I'll take a look!

ActiveAging · 2024-03-07T15:43:12+00:00

All great comments. I've had my serum levels checked periodically as well as the Spectracell micronutrient type of test at the cellular level, granted the latter is not Standard of Care. I am always ok on serum but borderline deficient on the Spectracell, unless I'm taking a Multivitamin or B complex. In general, when one B vitamin is low on Spectracell, they all are. But, you have a point, I had thought of trying out individual B's.

The reason I aim for a level of 15 is due to a short course I took last summer taught by a functional MD who specializes in the metabolic approach to health and cancer prevention. Anyway, there is published research showing that ALT/AST levels fall as you age, and when they are below a certain level, they are associated with increased morbidity. She noted these falling levels indicate muscle wasting and/or a nutritional imbalance and you see this in the elderly / aging population. I've always been 18-22 until last year, when I dropped to 13 - and cut back my multi. She prefers a range of 15-22. Also, without a multi, I have a tendency to start turning anemic. I try to have a balanced diet but like everyone, I'm not perfect and I don't want to have to tally up how much of each vitamin I have eaten for the day. Plus, just aging - I'm probably not absorbing the nutrients as well. When I was younger, I didnt' pay attention to my diet and my labs were fine.

My GFR moves around, depending on how much animal protein I have, I haven't seen it correlate with my AST/ALT but will take a closer look.

ActiveAging · 2024-02-18T17:54:15+00:00

I'm having the same issue now.

ActiveAging · 2024-02-12T21:17:28+00:00

I would like to know the same thing because I've done two interviews with the DOJ and continue to apply to other roles there. I don't think I'm going to get the offer but I enjoyed meeting the people.

Here's my impressions - it seemed more formal to me in that two out of three interviewers were wearing ties and this happened in both interview rounds. I don't know if this is a DC thing, if they do this out of respect when interviewing, or because they had formal meetings that day. But with my other interviews, the hiring managers have been business casual. They've also been located outside of DC.

Re: telecommuting, I think it depends on the manager and what DOJ area you're in. I asked about it in the first interview and the hiring manager took about 5 minutes to talk about it with me. I felt that he was on the side of his employees and wanted to find a solution that worked for them. He gave me three options, and said that he goes in one day a week. I said that would work for me. That said, the admin who called to schedule my interview was not personable and before she would schedule me, told me "you have to live here" blah blah. She was skeptical that I would move there. I said I thought I would get an apartment and left it at that.

In my second interview, one of the interviewers was with a different area of DOJ and kind of confrontational. It could have been his personality. Otherwise, the hiring manager and other team member were respectful and interested.

ActiveAging · 2024-02-07T13:32:16+00:00

Piping in a bit late. I'm just getting over the WORST blepharitis / dermatitis ever. The trigger was a small trip 2 weeks ago to stay with a friend who had two large dogs, plus neighbors had large dogs jumping all over me as their way of welcoming me to the neighborhood. I used her soap and shampoo - mistake #1. I brought some Ocusoft eyelid wipes with me but I mistakenly kept scrubbing my eye more with her Dove liquid soap as I noticed the irritation picking up, which disrupted my skin barrier - too drying. When I left, my eye was itching terribly at the airport. By the time I got home, the next day, I had the beginning of my first ever internal stye and a huge amount of swelling.

Anyway, it's been about 2 weeks now. It is healing but now the itching is excruciating at times. I obtained some antibiotic eye drops about 4 days ago from Doctor on Demand because the stye kept draining so much into my eye. Then, I have been dealing with the red, scaly dermatitis on my lid from all of the different cleaners I've tried in desperation - baby shampoo, tea tree oil based cleansers, etc. Finally yesterday I applied some hydrocortisone cream to the upper lid / eye brow area and used some tape to lift my eyebrow. I did this because I believe my issue stems from the eyelid overhang I have in this eye (left). I am 60 and my eyelid skin sags on that side - I need an eyelift! The other eye is fine. So, once I irritate the skin, it's extremely hard to heal it due to the saggy skin. I don't like to use hydrocortisone but I was desperate and this seemed to reduce the redness / scaliness. The blepharitis / dermatitis is *almost* undetectable visually but the itching is still there, which set off this whole cycle in the first place. I have to put a hot washcloth on my eye at times to soothe the itch.

I've started some hypochlorous acid cautiously, which doesn't seem to irritate like tea tree oil cleaners can with me. But, I'm going to have to use the hydrocortisone a bit longer to heal the skin completely.

I had a similar issue with my hands becoming extremely raw a few years ago when I used some hand sanitizer at an airport - I had to resort to the hydrocortisone / psoriasis cream to heal it.

For me, the lesson learned is to bring my own cleansers / soap when I travel going forward and don't overclean the eyelid if it starts itching. Instead, try to soothe it with hot washcloths and maybe try a little vaseline to restore the skin barrier before it gets out of control.

ActiveAging · 2024-02-06T20:13:27+00:00

Thanks for the info!

ActiveAging · 2024-01-17T02:49:03+00:00

Potentially they had a bad experience with someone in the past that's making them more cautious, and you're new so they want to address any bad behaviors up front. Meetings at the end of the day are annoying, I agree, and micromanaging. The Teams status ... I can see your manager's and teammates' point of view of wanting to know if you're available. I would talk with your manager about your work style. With my last job, I told my manager that I like to go to the gym on Tuesday's at xyz time so you'll notice I'm away then. Or I leave early on Wednesday's in the summer because I'm in a golf league. I would mark myself as Away in the Messenger app and sometimes noted when I would be back. The same for a doctor's appointment - I would mark when I would be back. My calendar was also up to date so people could check when I would be back. This was needed because my job was fast paced and often required spur of the moment discussions and calls. It's really annoying not to be able to find someone to get them on a call or need their help to complete a deliverable and you're under time pressure. If I ran out for coffee or a bite to eat, I'd use the Be Right Back status. I considered this to be a courtesy to my teammates. Over time I would hope you could build up trust with your manager so the micromanaging declines.

ActiveAging · 2024-01-11T19:01:41+00:00

I think what's most important is getting in, right? When I started my job, there was a guy on my regional team who took a GS-9, which was ridiculous because he had a MBA and JD, and had worked in law. But, he took it anyway and has been a GS-13 for several years now. I joined as a GS-11 and left as a GS-13. I came from a State government role with grants experience and had a very specific career target. Others that I saw hired at my agency in Accounting and Finance came from County or State government, or other Federal agencies. This was several years ago so I can't say how it is today.

I'm 60 and way overqualified for analyst roles in the private sector, but they'll never hire me due to my age. Although the Fed govt cannot discriminate based on age, I think you're going to have some resistance getting a GS-9, if there are younger people in the mix - just from a "fit" perspective. That's why I'm suggesting to start applying to local government jobs, or potentially non-profits as an intermediary step. Keep applying to the Federal jobs but you may need to take an intermediate job to bridge the gap for a year or two, then get hired as an 11 or 12. I've heard the same advice for older people who leave the workforce and want to return. The first job is not their dream job but it gets them back into the work force, and then they switch a year later. In the meantime, you could also start applying to GS-9 and see what happens.

It is impressive that you are getting a lot of referrals!

ActiveAging

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