Jennifer is the “oldest” lymph Node Transfer on this blog. By oldest I mean the longest time since her original LNT!!! Nearly 3 years…. I think I fit into the oldest age wise!! Jennifer has once again taken the time to update us on the progress of her second Vascularised Lymph Node Transfer, (VLNT) to give this procedure its full name, and to let us know her progress. I will put some links at the end of this article so you can catch up with Jennifer’s previous story and progress after her first LNT.. Thanks Jennifer for sharing as always. It helps others so much to read of your experience and you have been a great help to me when I doubted that the surgery had worked!!! You always said it would be ok!
“On March 13th 2014 I had a follow-up appointment for my 2nd VLNT surgery in New York. I saw Drs. J. Vasile and C.Becker. The 13th of March was exactly 24 years since my original surgery when lymph nodes were removed as a precaution for spreading cancer cells. None was found in the nodes at the time. I would develop lymphedema 10 years later, slowly progressing with tissue slowly becoming fibrotic.
The visit went very well, and the doctors seemed pleased with the progress I have made. Both Drs. Becker and Vasile agreed that my leg looked really good. I told them I was having a good day lymphedema wise. The incision site looked well healed, though still a red line visible, but will turn white and nearly invisible.
Dr. Becker said she thinks the new nodes are doing their job. I won’t know for sure until I get an MRI which will be scheduled in 3 months. (I will have anxiety about ‘ruining my VLNT’ until I get confirmation that they are healthy and working hard.)
Dr. Becker gave me some great hope, though I’m cautiously optimistic. She felt like I would be ‘normal’ within a year. I specifically asked what she meant by normal, having read and heard her say that about other patients. Last year she told me this as well. She thinks that I will be able to dispense of stockings. But….still need them when flying, standing or sitting too long. But, she thinks that I’ve made a lot of progress, especially when comparing to the first visit. There has been a real reduction, and I think they said 4 cm.
I had my first lymph node transfer in May of 2011, and now my second one on December 5, 2013.
I was not nearly as nervous as I was for the first lymph node transfer when I was scared witless because though I had read plenty about it, and I had spoken to only 1 person who had had it done, I didn’t feel satisfied that I was making the right decision. I was uncertain of the outcome, and my biggest fear then was that I might make an already bad situation worse.
Generally, my regular doctors (not the micro surgeon specialists) had no idea about VLNT and always cautioned me against doing anything ‘foolish’ and/or unproven.
The decision to have a second transfer was to help the congestion in my calf area. And, it was decided that I would have the nodes taken from the right side thorax area and placed just above the knee on the interior of the leg.
I was also going to have some ‘mini’ lipo suction done on my right upper thigh to remove some excess fat that had accumulated as a result of the lymphedema, what I have affectionately referred to as my ‘brioche’ or perhaps we could call it a bagel or a croissant. It was an unsightly bulge at the top of my stocking that stuck out as though I had glued on a thick slice of doughy bread there. I was very self-conscious of the lump and it was on the rise. (Do you like the bread puns?) So, the good surgeons took a very thin slice off, and smoothed it to look similar to the left side. They were very conservative in how much they removed. Though, in my opinion, there was plenty to take, they were very cautious, which I appreciated.
The first week after VLNT was very unpleasant, as I was coming off of all of the drugs pumped into me, and having to take pain meds that make me loopy. I had a lot of pain under my arm where the nodes were taken. This was to be expected since they had to cut into the muscle and stretch open the incision, disturbing and stretching out the nerves. For the first week, it was a burning sensation as though someone had placed a hot iron on your shoulder-blade and forgotten about it. But, that subsided and I was left with numbness. This is an unsettling feeling, though after several months it becomes less and less and eventually as the feeling returns, very gradually, you forget all about it.
I couldn’t wear my usual thigh high compression stockings for 30 days, only the knee highs. The swelling around my knee and above my knee was huge. In contrast, my calf looked great, in fact there was no swelling there at all in that time period. The difference in measurement was an additional 8 cm at the thigh after surgery, which is a lot for me.
I fell into a depression looking at my very swollen limb, and I went through a period of regret. I was scared actually. I thought, what have I done!
I found a wonderful lymphedema therapist. She has primary lymphedema herself. I started seeing her a week after surgery, while my drain was still in. The drain in my thorax had to stay in for 2 weeks. It’s great fun to have to pin the drains to your clothing and even more fun when taking a shower.
I was given the all clear to start wearing my regular compression stockings after 30 days. I also was allowed to use the pool. So, I started swimming, very gently at first, and slowly building up my strength. After 2 months the swelling had subsided quite a bit and now 3 months later, the swelling is nearly all gone. I am still a little more swollen at the knee, and I have light numbness all around the knee and upper calf area.
I have to say that I have absolutely no regret now of having the lymph node transfers. I feel sometimes like I have won the lottery! When I left the Doctors office I felt like a million bucks, and Dr. Becker has a way of making you feel that way about yourself!
I also want to say a great big gynormous thank you to Helen for her fantastic blog. Without the blog I would not have met so many extraordinary and courageous women with whom I have been able to share so much. We feel so much less alone and so much more empowered.” By Jennifer.. Thank you so much.
Below are some links so you can follow Jennifer’s story..
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