News from Jennifer … March 2014

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!

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Post surgery.. Picture provided by Jennifer

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A few weeks after surgery .. Picture provided by Jennifer

“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..

https://lymphnodetransplant.wordpress.com/2013/05/07/two-years-after-lymph-node-transfer-in-new-york/

http://lymphnodetransplant.wordpress.com/2013/06/04/exciting-news-from-new-york-nodes-are-growing/

https://lymphnodetransplant.wordpress.com/2013/09/05/sometimes-lymphedema-just-feels-awful/

https://lymphnodetransplant.wordpress.com/2013/08/08/update-from-jennifer/

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19 thoughts on “News from Jennifer … March 2014

  1. march is the good news month!! keep it coming! very nice to see how good you are recovering, it looks very good especially when second one is from december….the scar looks good i am always afraid of this but dr.becker surely does this veey good. i hav seen lnt from other docs and they have a bubble on top of it. this is great! take care jennifer and thanks for your story, you are very brave! x

  2. MY name is JoAnn. April 15 I will start the process of LNT testing at Beth Isreal/Mount Sinai Medical center. I live in Potomac, MD, just outside of Washington, DC. I am nervous but hopeful that the surgery will give me a better quality of life…I have secondary lymphedema in my left leg due to Uteran cancer which after surgery was discovered I had ovarian cancer. Having this surgery in NY versus DC is this something from your experience that I should be concerned about…thanks

    • Are you having your surgery with Dr Dayan???? If so then it is worth going to NewYork as he is excellent and very caring Dr with good experience.. I have heard this from others who have had surgery at Beth Isreal…

  3. Thanks, Jennifer, nice blog. Your leg looks great and to think it is even better now! You have come down a very long road and your perseverance has paid off! Thank you for sharing and helping those of us who will be going down that surgical road in hopes of a better life! Stay tuned, folks, I will have LNT to my left leg on Monday, March 24, 2014 by Drs. Joseph Dayan and Mark Smith at Beth Israel in NYC. It is the sharing of information on this blog and individuals I have met because of it that gives me the strength to have the surgery. I will write an update when I am able and will feel your encouragement, well wishes and positive vibes as I go through the surgery and long recovery. Leslie

    • Will be thinking of you on Monday and know that all will go well. Just remember to be patient as it is a slow process but you will get there in the end. Sending positive vibes and strength.. Heal well.. Helen

  4. Jennifer I am so happy your visit went well! I am hoping to see Dr. Becker next time she comes to NY. I had a death in my family and couldn’t make it this time.

  5. Great information, Jenifer! I am curious about the liposuction they did at the same time as the second lymh node transfer. Is that common….combinng the liposuction with a follow up surgery? Please keep us posted. Today marks week 5since my LNT, and I am very curious to hear how others are doing. If Leslie is still checking in, please let us know how our surgery went for you. Thank, Jeanie Ness

    • Hi Jeanie,
      Glad to hear you are doing so well. I wanted to answer your question regarding liposuction. I had a 2nd LNT in December and it was at the same time that I had lipo suction done to the upper thigh area. I had 3 small incisions that healed very quickly and painlessly. For the first 30 days, I could not put any compression on past my knee. The incision is just above the knee on the inside. I was to wait 30 days before I could wear regular compression. There was massive swelling for the first months, then black and blue marks that turned a sickly greenish/yellow, then with each month the swelling has subsided. There was maybe a little tenderness in that area, but really it subsided quickly. The lipo suction was not excessive, and I was not told how much was removed. It did smooth down the triangular lump that had formed there. I thought it was because my stocking pushed it all up to the upper thigh, and deposited extra fat there. I do see a difference when wearing pants, the bulge is not as excessive. If I have the courage, I’ll take a picture of my legs and post it.
      When you have liposuction, they do recommend that you wear compression for at least a month afterward to help the swelling, but in my case, I couldn’t because of where the incision was. Tricky.
      It was recommended that I do more lip suction to remove extra fat that has accumulated and ‘sculpt’ so that it will resemble the other leg. But, I need to wait at least a full year and also to have an MRI to show what is still active lymphedema vs. accumulated deposited fat as a result of the lymphedema.
      I hope that helped!
      Jennifer

  6. Hi Helen! I am starting to be a little more mobile at 5 weeks post surgery. I am starting to do some ‘gentle’ walking as was recommended by Dr. Chang. I think I can see a slight improvement in my calf and ankle, but not much improvement in the thigh and upper leg area. I am curious about the lympho-liposuction that others have mentioned. Does it restore the leg to the normal size and what type of compression does a person need to wear. ..thanks for your follow-up. I love hearing about the progress of yourself and others! You are a godsend to thse of us in the trenches! Huge hug for all your helpful wisdom and foresight to start this blog! Thank you, Jeanie Ness

    • Your thigh area will take a long time to see improvement after the LNT as they have to start to grow.. Both Jennifer and i did not start to see changes for quite a few months and really not till a year and then the thigh starts to soften and feel different.. So much patience is needed.. The Bi pass surgeries in lower leg you should start to see little improvements as the bypass starts to clear the lymph into the veins… Liposuction is totally different and yes it can bring the leg to the same size as your good leg .. It must be done by a specialist in this area so as not to damage existing lymphatics.. As with any surgeries there can be problems so the correct doctor is so important.. Compression after has to be worn 24/7 and 30-40 mmg or higher and usually flat knit as the Lymphedema will return if no compression worn as this has not been cured.. Level of compression depends on individual patients.. Jennifer only had a very small area at the top of the leg… A full leg lipo would never be done with a LNT but areas of need could be done after say a couple of years if still needing to be removed … There is some early surgery being done where patients have liposuction and then maybe a few years later a LNT but there is no documentation on this or follow up to see If it helps yet so very very new ideas… So Jeanie at this stage follow post surgery plans and give this time.. I have always said I would wait two years before i made any other decisions to see the outcomes from the nodes growing… helen xx

      • Hi Helen and Jennifer, thank you both so much for your interesting and informative responses. I had considered doing the lipo first – out in California with Dr. granzow and then follow up with LNT. But, i ultimately chose the LNT…..I hope and pray that I made the right choice. I am curious if any people on this blog have done the lipo first. I will likely wait a couple years to determine what my outcome is with the LNT, before trying lipo. I would only trust a specialist recommended by Dr. Chang…..Or one of the other microsurgery specialists. Thank you for your reminder to be patient…. It truly is the hardest part (for me). Your reminder could not have come at a better time. I feel pretty good really, however my stamina s still not great. I was hoping to feel and look better by now. So, I will relax and let time and nature do the healing that reeds to happen. I can not tell you how grateful I am for the responses from (all of) you and the updates on your own post-surgery progress! Jeanie

  7. Pingback: Update for Sometimes Lymphedema just feels Awful | My Lymph Node Transplant

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