Help needed????

imageA lady in Australia is looking into going to Paris to have LNT with Dr Becker. She has asked me if I could give a shout out to anyone else who may have done this, or from the US or other countries. How long did they stay there before flying home? Where did they stay? What was the protocol like post surgery? It is a good 24 hours of flying to get back to Australia after and what could the impact of this be on the newly placed nodes? If anyone could help, please leave a comment and share your experience… Or I can email you back from a comment notification…. Thanks in advance..

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A question for you all … Please help…

Ann has asked me to share this question so more of the people who follow this blog can answer her questions… It would be great if you would write any answers for Ann as a comment at the end of this post.. If you are willing to email her then please email me your details to helenbrd@bigpond.net.au and I can pass these on to her.. It is a huge decision to go ahead with surgery for Lymphedema and it is very difficult to get answers when it is so new… However everyones experience can only help each other so i look forward to your responses… Thank you so much … Helen

“Is there anyone on this blog with primary LE considering surgery? Anyone familiar with Corinne Becker’s track record? I emailed her and she’s emailed back-I’m impressed. I hear very good things about Chang but struggle with his deeming MRL not of great value. Since my situation is congenital, I can logically deduce that MRL would be a valuable tool when considering surgery on a patient, to know as much as you can about them before operating. However, I think he is just so confident in his procedures he feels it’s just another expensive test. I think he feels the solution/surgery/procedure is the same no matter what the imaging shows.
Dr. Becker, on the other hand, sees significant value in MRL. She distinguishes between hypertrophy and hypotrophy of the lymphatic vessels, and says that will dictate which procedure is used. That in cases of severe hypotrophy (not enough vessels), LVB can actually do harm to the remaining vessels. She uses LNT for hypotrophy and LVB for hypertrophy (too many vessels/tangled mess) and sometimes recommends LNT as well for that. Is anyone familiar with these two categories? Anyone had surgery by either of these surgeons? Is there a way to reach a larger audience on this blog with this question?” Ann

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Help to guide the growth of lymphatic channels

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I am always so excited with any new research to help Lymphoedema, even if I find it difficult to understand it is truly wonderful to see!!! This article was sent to me about “artificial” tissue that can be used during a Lymph node transfer to help in the development of Lymphatic Channels. It has been tested by Dr Corrine Becker and maybe available for use in 2015. “We anticipate that BioBridge will initially be used as an adjunct to Vascularized Lymph Node Transfer, an existing surgical procedure used for treating lymphedema. Our expectation is that BioBridge will help improve the outcome of this procedure. We are working closely with Dr. Corinne Becker, who pioneered this surgical procedure.” Quote from Greg King

Interview with Greg King, COO of Fibralign, Winner of 2014 MedTech Innovator

by JUSTIN BARAD on Jul 17, 2014 • 3:31 pm

Fibralign, a startup medical device company, just took home the grand prize in the 2014 MedTech Innovator competition, winning over 267 other startups. Their product, Biobridge, is a possible cure for secondary lymphedema, a debilitating disease with few available treatment options. Secondary lymphedema describes a condition in which the lymph system, which is responsible for removing extracellular fluid, is disrupted, resulting in the accumulation of extracellular fluid. This can lead to swelling in the extremities, which can cause significant discomfort and is cosmetically unappealing. This condition is most commonly associated with breast cancer patients who sometimes must undergo aggressive lymph node dissections in the armpit in order to stage their cancer, but it can happen in any condition in which the lymph system has been disrupted.

BioBridge

BioBridge

The Biobridge is an implant that has been shown to be able to guide the growth of new lymph channels. This technology can be used as an adjunct to existing treatments for the condition to hopefully improve outcomes.

The product itself is a collagen scaffold with very unique properties. “Scaffold” is a term used in tissue engineering that describes a three-dimensional material that encourages cells to attach and grow along its microscopic structure. While collagen scaffolds are not particularly unique, the Biobridge uses a novel fabrication method that gives it a distinctive three-dimensional structure that is very similar to collagen structures found within the body itself.

We had a chance to sit down with Greg King, the COO of Fibralign, to ask him some questions about this very exciting technology.

Justin Barad, Medgadget: Can you discuss the development of your technology? How did it start and when did you start seeing its potential?

Greg King: Our founders had a “penicillin moment” working in a Stanford Lab when they found that previously developed technology for working with liquid crystal materials used in the flat panel display industry could be applied to several biomaterials including collagen in a liquid crystal state to form 3D scaffolds. When they saw the resulting structure in the AFM image shown below they recognized that they had a breakthrough discovery. The image was like the skin scaffold of a newborn, with bundles of highly aligned collagen fibrils. As far as we know, this was never produced before in a lab. They were able to take collagen, a material commonly used for the past 30 years in various cosmetic and surgical applications, and fabricate scaffolds that mimicked different types of human tissue at the micro structural level. They started working with different research groups on a wide range of high-value tissue applications and used this experience to develop the core technology. They determined rather quickly that this was a fundamental technology that offered a large design space for addressing application requirements.

Medgadget: Can you tell us a little bit about when and how your company was founded?

Greg King: The company was founded in 2007 by Michael Paukshto, David McMurtry, Yuri Bobrov, George Martin and Eric Sabelman. They early years were lean, surviving primarily on sweat equity and some modest angel funding. During this time, the team developed its core technology, fabricated initial prototypes and secured an IP position and developed the manufacturing approach for scaling commercially. At the end of 2012, the Company made a business decision to focus on lymphedema as the initial product, expanded the core team and then moved from an incubator to a dedicated lab space with a cleanroom to support this development effort. Fibralign also benefited from grants from the DoD and NSF to support a large animal study and develop production tools for making its initial product. Can you tell us a little bit more exactly how BioBridge is used to treat secondary lymphedema? What results have you had so far in your animal studies?Secondary lymphedema can occur when the body’s lymphatic system is compromised from a trauma. In western countries this most commonly occurs after aggressive cancer treatments, involving surgery and radiation therapy, but it can also occur from infections and other injuries. This can disrupt the flow of lymphatic fluid in the affected limb that leads to swelling, great discomfort and serious infections.BioBridge is a bundle of small collagen fibrils aligned in one direction. It is made from medical-grade collagen and has been designed to support and repair the diseased tissue area, allowing new lymphatic vessels can form in the direction of BioBridge and restore function.In our successfully completed large animal study, we were able to show that new lymphatic vessels formed in diseased areas and about a 60% reduction in accumulated fluid only three months after BioBridge implantation. This compared to the control group that did not get BioBridge and showed no improvement.

Medgadget: What kind of effect will winning Medtech Innovator have on your company?

Greg King: We hope it helps attract attention needed for Fibralign to address this opportunity, providing visibility to investors, stakeholders and the broader community. We need to build awareness of what we’re doing to help treat this horrible and neglected disease, which impacts millions of people and currently has no cure.

Medgadget: Do you have any rough estimate when your product might come to market?

Greg King: We expect to have product in the market in 2015

Medgadget: What sort of clinical applications to you envision for the near future?

Greg King: We anticipate that BioBridge will initially be used as an adjunct to Vascularized Lymph Node Transfer, an existing surgical procedure used for treating lymphedema. Our expectation is that BioBridge will help improve the outcome of this procedure. We are working closely with Dr. Corinne Becker, who pioneered this surgical procedure.

Medgadget: Do you have any advice for our readers, many of whom are aspiring medical innovators and entrepreneurs?

Greg King: Pick something you’re passionate about because it will consume you and require tremendous energy to get anywhere. So make sure you like what you’re doing. Also get out and talk to your expected customers and test your hypothesis and product plans as early and often as you can. It sounds cliché, but this for some reason isn’t done enough in startups and in biotech in particular. Go out and validate your market opportunity before you commit effort and resources!

Greg King

Greg King

http://www.medgadget.com/2014/07/interview-with-greg-king-coo-of-fibralign-winner-of-2014-medtech-innovator.html

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
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There is always hope.. Maureen’s story

Image from Wyatt rehabilitation

Maureen has been following this blog for a while, but sadly missed our gathering in New York, but has been able to connect with the other ladies since. Although we knew she had surgery for her Lymphedema we did not know her full story till recently. I was moved by the depth if despair that Maureen reached, living each day with Lymphedema and it’s complications. That she reached a level where she felt that amputating the leg would be better than continuing, shows how severely LE can impact on people’s lives, both mental and physical. Maureen was fortunate to have an oncologist who did everything he could to find treatment for her Lymphedema, we need more doctors like that, who do not think their job finishes when the cancer is gone!!

Maureen’s story took me back about ten years to when a friend rang me, she asked if I would speak to her brother. Her brother had surgery to have a melanoma removed and now had Lymphedema, was experiencing severe swelling and infections. He told me that he would rather have the leg amputated as it was impacting his quality of life, he felt an artificial leg would be a better option. We spoke about types of treatment, about exercises and massage that may help. Very soon I realised that no one had given him these options. He did not know about complex bandaging to bring the swelling down, then fitting for compression garments. He had not been told about Manual Lymph Drainage or the benefits of swimming and walking to move the lymph. No one had educated him in how to care for his leg now he had Lymphedema. This story had a happy ending in that he found a Lymphedema therapist, did a few weeks of Complex bandaging, was fitted for a garment and started to take a prophylactic antibiotic to guard against infections. His life turned around, as a surfer he was able to get back in the water, which was a great exercise. Living with Lymphedema is a 24/7 care situation but it can be done.

Sadly another story I read recently was of a young girl, in her 20’s who did have her leg amputated. This really disturbed me as I could not believe a doctor would agree to such treatment. There was not a lot of detail but she had Lymphedema for the past five years after cancer treatment. There was a picture of her leg, and although not the worst I have seen, it was 65lbs but not distorted in shape and the skin looked smooth. I could not help but wonder if she had been offered other treatment, had it not worked, was it available or was it unaffordable? I cannot imagine what leads someone to such a decision, or a doctor that would not look for other options such as Lymphatic Liposuction, bandaging, compression etc. It breaks my heart that LE can bring such misery to someone’s life yet it is such a secret side effect of cancer treatment that many have never heard of it. In contrast Maureen’s story is one of  success initiated  by a doctor who believed there had to be a better way.

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Maureen’s story in her own words..
“My story… I had stage 3 Melanoma and the surgery was June 18, 1992. They removed all lymph nodes in the right groin area because I had cancer in pretty much all of them. I was told I would have “slight” swelling!! I was fine with that because I didn’t know any better. I was told I would probably need to wear compression stockings, again not knowing anything about Lymphedema. It wasn’t until my honeymoon the next year that I noticed that the heat in Mexico bothered my leg but I did wear the stocking faithfully. It started to swell a little not too bad. Once I hit my 5 year remission I asked the oncologist if I could have a baby and he said yes so I got pregnant in March of 96 and in May I got bit by a spider on my leg and that’s when things got really bad! My fever spiked to 105 within 30 minutes and the pain was unbearable(I’m sure you all know). I was rushed to the ER with 106 fever, I told the dr cut the leg off I’m not losing my baby!! It was a long 2 weeks in the hospital but Thank God my baby was fine(he is 17 yrs old) after that infection I started to use the pump and that’s when I started getting infections and more swelling in abdomen. I hated using it! It was a joke in my family to when I was “checking in” at the hospital every month because I had so many infections. After so many years of the leg getting out of control and becoming hard to handle I told the doctor its time to have it taken off. I was done!!! It was deformed and heavy. It cause lower back pain and my hips hurt so badly. I could hardly walk. Then November 2011 my oncologist heard about Dr. Becker and Dr. Vasile doing a conference on LNT so he went because he needed to tell them about me. I saw him the next week for my 6 month check up and he was beyond excited for me to meet them in NYC. I went home called Dr. Vasile’s office and was on the phone with her for an hour! She said she wanted me to meet with her the next day in CT and start the process. I did all the tests that week and the next week I met Dr. Becker. She looked at my leg(as she sat on the floor) and felt it and stood up and said to me ” I can get it normal again” I cried!!! My husband and I went home that day feeling hopeful! I started therapy the following month here on Long Island where I live. My dad died 2 days into my therapy putting me in a depression because he was so excited that I was finally going to get my life back!! I wanted to cancel the surgery and my sister and brother told me no way would my dad want that!! So I moved forward with it. My first surgery was March 13 2012, I met with the drs the day before and they were thrilled how well the leg responded to therapy. The next morning I went into surgery. My poor husband was told it should take about 5 hrs well it was over 9 hrs!! A lot of scar tissue in the right groin area. She transferred a node from the left groin to the right and then cut away a lot of tissue from the thigh and calf. In my case I saw results right away because of how much tissue was removed. After a week I started therapy again and lost so many inches!! I was beyond thrilled!! My second surgery was July 2012 and they took the node from under my arm and placed behind my knee. They also removed a lot of hard tissue from the calf and ankle. Also more lipo on entire leg. So again I saw results right away. My leg looked normal!! I could not believe it!! The 3rd surgery was November 2012 where they removed over 10lbs of hard tissue from my abdomen!! That was all from years of the pump!! Dr. Becker hates the pump!
So now its 2 years later and I feel amazing! My life is back to somewhat normal lol and knock wood no infections!!
Sorry this is so long but that’s my story!!!”……By Maureen
Thank you so much Maureen for sharing this with us, it shows that no matter how bad the situation there is always a better way. I am so grateful to be living in a time when surgery is available to treat Lymphedema and give people a better quality of life than they might have had in the past. Never give up hope, there is a light at the end of every tunnel. Thank you …..
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The above image is available on gifts etc from http://www.cafepress.com/+lymphedema-awareness+gifts

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Waiting room get together.. New York

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Jennifer’s therapist, Kimber, Jennifer and Lori .. Photo provided by Lori

I get so excited when I am sent photos like this, as I know if it was not for this blog, these wonderful ladies would not have the opportunity to get together. Thanks Lori for the great photo. All were gathered at the offices of Drs Becker and Vasilles or as Kimber calls them.. Jules and Beck!! Jennifer and Kimber had met before at our gathering in New York earlier in the year and I was able to tell them that Lori, who lives in California, was also there for her follow-up and to look out for her!! You can imagine the gossip that went on in the waiting room, while they were awaiting appointments, sharing stories and experiences.

Lymphedema can be a very lonely thing to deal with, as often there is no contact with others. Having surgery such as Lymph node transfers and liposuction to help the Lymphedema can be an even more lonely experience, as it is still new surgery. Meeting others is just the best, to talk to someone who understands where you are coming from, to share the ups and downs and the waiting that can only be understood by another in the same position. When you feel down it is great to have others to lift you up and in turn, being able to help another when they worry about the progress, is priceless.

This blog has given me so much and it is a joy to see others getting together and sharing. In this way we bring awareness to our situation and help others who follow behind. When I had my surgery there was no one to contact to ask about their experience. I had no idea of the roller coaster I was heading into!! Now I hope others will feel more prepared by reading this blog and the shared experiences..

Always remember that these are just our personal experiences and do not replace medical assessment and advice. This is major surgery and for everyone it will be different..

Unknown

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

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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Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Dr Corrine Becker with Lori

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Dr Corrine Becker with Lori March 2014 provided by Lori

This is a wonderful picture that Lori sent me today from her appointment with Dr Becker and Dr Vasilles in New York, earlier this month. When someone changes your life it is hard to find the words and a hug says it all!! Dr Becker was pleased with Lori’s progress and as time goes by her lower leg will improve more and more. At a later stage there may be a need for a small amount of liposuction to get rid of the fibrous, stubborn areas.

This is a Link to Lori’s story of Primary Lympedema and surgery

https://lymphnodetransplant.wordpress.com/2013/07/17/loris-story-of-primary-lymphedema-and-treatment/

Dr Corrine Becker is the pioneer of Lymph node Transfers and is responsible for teaching many doctors world-wide how to perform this surgery. In Paris she started more than 20 years ago and over the years has perfected the technique. That we have the opportunity to be part of this revolutionary treatment is truly giving hope to many. Over the next few years, with research into medications that help the development of the lymphatics, it feels like we are moving into exciting times.

This is a link to a study in Finland (2014) on Lymph node Transfers, it is long but there are items of interest about the use of Growth Factor written by Tiina Viitanen

http://www.doria.fi/bitstream/handle/10024/94237/AnnalesD1103Viitanen.pdf?sequence=2

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Kimber.. Five weeks post surgery for Primary Lymphedema

imageThis is the latest update from Kimber who has Primary Lymphedema, she had surgery in New York five weeks ago with Dr Corinne Becker and Dr Vasile this is a link to her previous post just before the surgery and this also has a link to her story of having LE since she was six years old https://lymphnodetransplant.wordpress.com/2013/09/23/i-have-primary-lymphedema-update/

Up date…

Well, it’s been exactly five weeks since I had the second surgery and it’s night and day as to how I feel now. Having two surgeries in a 24-hour period was one of the hardest things I’ve ever done. It’s not the worst but extremely hard. The first surgery, which took place September 23rd, was the hardest out of the two. Not only did I have the transplant to my right groin area but I also had my right thigh that Dr. Becker and Dr. Vasile tried to revise the best they could. The surgery was supposed to last about five hours and it ended up being eight. I was in recovery for another four hours before they allowed me to go back to my room. The day was extremely long as I left for the O.R. at 7:30am and didn’t get back to my room until 8pm. There was definitely a lot of pain but majority of it was from the donor site and my arms were killing me and I had no idea why? What I didn’t know was that I was starting to have Thrombosis settle into my arms. Thrombosis is a very rare side effect and naturally I had to get it…LOL It’s the formation of a blood clot obstructing the flow of blood, which can result in bad swelling and pain. However, when I look back on it now it doesn’t surprise me that I ended up with Thrombosis. The veins in my arms have been completely wiped out and very weak since I was twenty years old due to all the cellulitis infections. It’s why I have a port-a-cath in my chest. I was also told that because the surgery was so long that laying in one position with my arms strapped down and no movement also helped cause the Thrombosis. As far as my groin and the revision to my thigh, that didn’t hurt much at all. However, I was up all through the night because my arms and donor site were just too painful. Than, what comfort it was as through the night I would look over at my husband sound asleep on the couch along with hearing him snore…haha Please excuse my dry sense of humor but I have to laugh because laughter plays a huge part in seeing me through this disease 🙂

The next morning, at 7:30am I was wheeled down to the O.R. to have the second transplant. This time the donor site was my right side with the transfer taking place in my left groin. The original plan was to have the transplant to my left knee. After talking to the doctors in the O.R. it was decided it would be best to put the lymph nodes in my left groin area. Things went very smoothly with that surgery as it lasted just four hours, exactly what my doctor’s thought it would be. When I was able to go back to my room I felt completely out of it and was a bit confused (too much anesthesia). When I woke up my husband asked if I wanted something to eat and I told him I couldn’t as I needed to wait until after surgery. That’s when I found out the second surgery had already taken place and I was out of recovery and back in my room. I had four drains in altogether and immediately felt an enormous amount of pain in both of my sides (donor sites) and both my arms. My arms and hands were so swollen, weak, and heavy that it hurt like hell and I could barely move them. All I could do was constantly watch the clock so I could call the nurse for pain medicine every chance I could. I honestly was just that miserable. I was in the hospital for a total of five days and when I was released I stayed in NYC at the Miracle House for another six days. I had to stay a few days longer because I developed a pocket of fluid at the left donor site that had to be drained. Both doctors wanted to keep a close eye on me to make sure there wasn’t anything else that could potentially develop. I was allowed to return home to Maryland after 11 days. Oh, on a side note, the second night in the hospital, Scott stayed up with me through the night as I made sure to point out how refreshed he looked because of all the sleep he got the night before (once again I just can’t help myself) LOL

Once I returned home a week later I started MLD therapy. I go five days a week and also wear ready wraps (another type of compression garment) on both legs from my feet to my groin. I don’t wear anything at night but will eventually. I’m to do this for three months and then will transition to a compression stocking. I’ve been eating LOTS of protein, vegetables, drink lots of water, take daily vitamins, and walk every day. I just want to do everything I can to try and achieve the best results possible. I honestly don’t want to ever look back on any of this and wonder if I could have done something different. So, I’m willing to do WHAT EVER it takes!

I go back to see Dr. Becker and Dr. Vasile in November. It will be interesting to see what they have to say about the results so far. I am seeing an improvement but it’s hard to decipher if it’s from the transplants, the MLD therapy, or maybe a little bit of both? I’ll also find out how Dr. Becker wants to proceed with the other transplants. I will need them in my knees and more than likely my ankles as well. Even though I had a rough time with the surgeries I want to point out that my situation is very much different. My case is so severe with being Primary and in two limbs. For me, I don’t mind being aggressive only because I know what I’m dealing with and what I’ve been through since I was six years old. My disease is so incredibly aggressive and forceful that I’m willing to go the extra mile to try to combat it. With out a doubt I have absolutely NO regrets and will do it over again with my knees when my doctors feel I’m ready. For anyone who might be considering lymph node transplant I don’t want my story/experience to alter your decision. Having two transplants done in a 24-hour span is a very rare occurrence.

Helen has told me this requires lots of patience along with it being an emotional roller coaster and I couldn’t agree with her more. Even though this will be a long process I do believe from the bottom of my heart it will all be worth it in the end. While this isn’t a cure I feel for the first time I could really get some much-needed relief from all the swelling and hope it slows the infections down and maybe eliminate them entirely. However, if God forbid it doesn’t work out the way I wanted at least I know I tried and gave it EVERYTHING I possibly had. Once again….keeping my fingers crossed!!!

Once again thank you Kimber for sharing your story and keeping us up to date with your progress… I should add that Kimber’s arms were back to normal after three weeks and are now fine.

This blog does not replace medical advice and everyone is an individual in their needs. In creating these posts it is to share mine and others experience, of the surgical journey, on a personal level rather than a medical one.. If you would like to share your story please email me on helenbrd@bigpond.net.au

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Update from Jennifer

imageJennifer had a Lymph node transfer two years ago in New york with Dr Corrine Becker and Dr. J Levine and Dr Julie Vasile. The next step is maybe some liposuction to get rid of stubborn fatty areas… There has also been a suggestion of a second transplant to the lower leg but Jennifer is unsure of this. However at the moment struggling with the summer heat it is very emotional to see the leg swelling and she does wonder if one transfer is enough…

Jennifer says…
“I actually did very well in the extreme heat! Yes, this is a change from the summer before. I was surprised. I can’t say that the measurements have changed but the big difference is that my leg didn’t swell excessively though it was exposed to some extreme conditions. In fact, there were a few mornings when my ankle didn’t have the round donut ring look, but it doesn’t remain that way. I did hide a lot in air conditioning and only used the gym to do some exercising. Normally, I like to go out on the bicycle. My temperature cut off is 82 degrees.
That being said, 2 days ago, my leg was doing ‘okay’ then all of a sudden, I could ‘feel’ it swelling, more at the calf area and my joints felt achy and tired and swollen. It’s better in the morning after a night’s rest, but creeps back up during the day. So, I don’t dare go without compression, though I’d love to. This change in swelling seems to be cyclical or maybe because I had too much salt in my diet. I seem to be very sensitive to it. Drinking a lot of water and no salt does help.
However a few days later, for whatever reason, my leg is aching and swelling again. I can feel pain in my knee-joint and ankle and there is a familiar bursting sensation. So, this is making me very upset as I feel sometimes that the one transplant is just not enough to alleviate the symptoms entirely.
The top of my foot is full of edema, the ankle is more swollen than usual, and where my stocking ends at the upper thigh, it bulges and pushes the flesh into an unflattering donut shape. My calf area is definitely the problem area, noticeably bulging out and my ankles have some shape but are definitely wider than normal.
So, hot off the press…. A lot of ups and downs for what ever reason at this time..” Jennifer

Thank  you Jennifer for sharing with us and I hope that things start to settle down again for you….. What an emotional roller coaster the decision to have surgery puts you on!!

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I have had Primary Lymphedema since I was six years old

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Lymphedema support Network

This is a personal story from Kimber who has very bravely agreed to allow me to share her story. This is the first part which gives the history of her life with Lymphedema, from the age of six, and will continue with updates as she has surgery in New York with Dr Corine Becker and Dr Vasile … I am so proud of Kimber for writing this as every time someone shares we give a voice to Primary Lymphedema… Mostly we hear the stories of secondary Lymphedema after cancer treatment, but this is only the tip of the iceberg. Primary Lymphedema can be far more severe and truly a lifetime sentence, often misdiagnosed and misunderstood.

Thank you so much Kimber for allowing me to share your story and I wish you good luck and good fortune in your on going surgery.. I am sure that everyone who reads this will thank you as well.

Like most six-year olds, I went to sleep on a summer night as a perfectly happy, healthy, very energetic child. Waking up early the next morning though was completely different. I was very sick with what would be my first of hundreds (this is no exaggeration) of bouts of horrible infections known as cellulitis. My cellulitis is EXTREMELY painful inflicting high fevers, vomiting, and chills that would actually make me shake and tremble. Each instance was so bad that I would be completely incapacitated within about 20 minutes of the first symptom of an infection. The very first infection started in my right thigh. It was very swollen and so infected it had actually turned a shade of purple. After being hospitalized for 10 days, the doctors released me and told my parents they believed I had an allergic reaction to a spider bite. While the infection finally went away I was left with swelling that never completely went down. From that point on, even though I was only six, I became very self conscious of both myself and what others might think of me.

Things progressively got worse when I reached age twelve. I woke up one morning to get ready for school and found that my right thigh was absolutely huge. Unlike previous times, I had no symptoms of an infection, but the swelling was so bad that I couldn’t fit into any of my pants. My only option forced me to wear my father’s sweat pants to see the doctor. My parents managed to have me seen by a specialist that same day at a very well-known and famous hospital called John Hopkins. It’s located in Maryland which is the same state I live in. After my hospital visit, I was put through one test after another to try to determine what was going on. Each test was incredibly painful and horrifying. It would be one thing if the test revealed a cause but the doctor had no idea what was wrong. He ended up telling my parents that he thought maybe I had a form of Elephantitis and there wasn’t anything he could do. We were sent on our way with more questions than answers. By the time I was thirteen years old the swelling had continued in my leg and then extended down to my right ankle. From there my leg continued to get bigger and bigger. This was a very hard thing to accept because I used to be very athletic and hadn’t been allowed to play sports due to my doctor thinking it would only cause me more harm.

At some point the doctor’s believed I needed surgery to try to correct all the issues from the swelling. I was fifteen years old when I had my first of fifteen surgeries on my right leg. It started with liposuction and then a “de-bulking” procedure. The latter consisted of opening my leg from top to bottom, removing all fatty tissue and draining whatever fluid possible. Then as you’re closed up the skin is pulled tightly together as if you’re tying a pair of shoe strings. With the excess fluid and tissue removed they had to cut away any excess skin. All of this was done in hopes of having a smaller leg yet each time the swelling would gradually come back and they’d recommend doing it again. I had this done five more separate times thinking each time it would make it better. What my parents and I didn’t know was that I shouldn’t have ever been operated on in the first place. Any surgery makes Primary Lymphedema become worse because it destroys anything that might still be working in the lymphatic system. We didn’t know and neither did the doctors during that time. Like any teenager struggling with body image, all I wanted to do was feel the same as the other kids and live a “normal” life. I wanted to fit in with the rest of society and more importantly wear the clothes and shoes my friends were wearing. Sadly none of that happened. Instead of having a smaller leg, I was left with a HORRIBLE scar that runs from the top of my leg by my groin down to my ankle. Having these surgeries have caused me nothing but pain, heartache, and opened myself to having one infection after another.

Right before I graduated high school, I got yet another infection that unbeknownst to me has set the tone for what my life was going to be like. I started getting back to back infections so quickly that it put me on a first name basis with the hospital staff. At one point I was in the hospital every two weeks. It became so bad that I started to believe I would never be able to live outside of a hospital again. My life completely revolved around four hospital walls. I was afraid to even walk out of the house because it felt like no matter what I did it was going to cause another infection. My plans to become a high school music teacher never came to fruition as I couldn’t finish college due to missing so much school work and constantly being sick. I felt as if I had no life at all.

In my early twenties I got married and two years later pregnant with our first child. My husband and I were told by two different doctors that pregnancy wouldn’t affect my lymphedema and everything would be ok. My pregnancy was great because I didn’t have any infections the entire time. It was so nice to have any type of reprieve from an endless cycle. While this was supposed to be one of the happiest times in my life it also was a little bitter-sweet. Unfortunately the stress of pregnancy caused my lymphedema to cross over into my left leg. I woke up one morning to not just one very swollen leg, but two swollen legs as each was just as big as the other. I know the good out ways the bad and want to point out that I have absolutely NO regrets in having children as I’ve been asked that question so many times. I would go through it all again as our three children are the best blessings we could have hoped for. As long as each is happy, healthy, honest, and productive it’s all that matters regarding our children.

Two months ago I woke up in the middle of the night with the worst infection I’ve ever had. It scared me and shook me to my core that the thought actually crossed my mind if I was actually going to make it out of the hospital. When I came home and finally recovered, I decided to get on the internet and start doing research for possible new treatments, surgeries, etc. This is when I found Helen’s WONDERFUL website and became glued to it for hours. Because of Helen’s site I first learned of lymph node transplant. I had no idea this even existed. From there I got the information from her about Dr. Becker who is from France. She comes to New York City every two months and works with three other surgeons and performs lymph node transplants. Last month (July) I went to NYC and was able to meet Dr. Becker along with the other surgeons and found out I’m a candidate for the transplant. With having such a severe case of lymphedema I will need three transplants altogether. Two in my right leg and one in my left. I can’t even begin to tell you how nice it is to have a doctor educate me on my disease as it’s always been the other way around. I’m a bundle of nerves when it comes to this but I believe this is a very positive step and huge break through for all of us lymphies, whether its primary or secondary. I have a lot of preparation that needs to be done before the surgery and will have my work cut out for me afterwards. However, as scared as I sometimes feel, I know I’m very much ready for this because I never thought something like this would ever be possible in my life time. My first transplant is scheduled at the end of next month in NYC.

Since the age of six I’ve always felt isolated as the emotional, mental, and physical toll this has taken there is just no word or words to even describe. Helen’s website is an excellent way to share my thoughts and feelings openly. I’m about to turn thirty-eight years old at the end of this month. Even if I had to think about it I can’t put a number on how many infections I’ve been through. I am constantly worrying about scrapes, cuts, shaving, minor burns, bruising, mosquito and insect bites as just the smallest things trigger an infection. I’ve had over 20 surgeries now including having multiple medi-ports implanted on alternating sides of my chest. This is the only way to provide me antibiotics to help fight off the infections. My veins have been burned and weakened from numerous IVs to my arms and central lines in my neck. I’ve had every type of antibiotic you can think of injected into my body as it is the only way to rapidly reduce the infections on top of high doses of pain medication. I’ve traveled to different states, doctors, hospitals, and clinics and no one has ever known what to do with me. The constant fear is sometimes enough to drive me crazy and definitely leads to a downward spiral into bouts of depression. There is no doubt in my mind there were times where I felt like I was living in absolute hell.

As I’ve told Helen in a personal email that I would like for her to post my story as it’s a very personal decision. I’m tired of feeling that I need to hide or be embarrassed by my story and the disease itself. I’m so incredibly thankful that I found Helen’s website as this is a perfect way to share and educate yourself and other’s about lymphedema. I also thank God everyday as he blessed me with a wonderful husband who has always been understanding, patient, and supportive. It’s because of him and our three awesome children as to why I’ve been able to get out of bed every day and not let this disease consume me. I’m also blessed with loving extended family and friends to help see me through the good and the bad. Along with my very strong faith I know the good Lord up above has blessed me with this opportunity….keeping my fingers crossed! By Kimber

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