Some questions to help Lisa pre LNT

imageLisa sent me an email prior to her LNT…. As you can see she would like to hear how people are progressing, plus any advice for before and after surgery. What we all need to remember is that everyone is different having this surgery, the condition and size of the leg or arm, plus general health. This makes it hard to compare progress, as some will respond more than others plus some quicker than others. Always remember to ask lots of questions and comply with pre and post surgery protocols for the best results. Also each surgeon is different in what his protocols are, some are very strict and some not so much. The biggest thing to remember is you need patience, this is not an instant fix and it can take up to a year to even see small changes.

If you have advice for Lisa please use the comments to pass on your support to her. We would all love to hear how some of you are going who had the surgery in the last two years. How is everyone progressing? What is the best advice you would give someone pre surgery and post surgery?

Look forward to hearing from everyone… Helen

“My name is Lisa and I live in Dallas, TX. I am having the lymph node transfer at the end of the month at MD Anderson with Dr. Alexander Nguyen.

How are you doing since your surgery? Are you still feeling good about your surgery? Is there anything you wish you would have done before or after the surgery that you didn’t?

Just a little background. I had cervical cancer in 2002. Had a hysterectomy but no radiation or chemo thank goodness. I developed lymphedema though in my left leg in 2008.

In 2013, I had the lymphatic venous bypass surgery at MD Anderson with Dr. Roman Skoracki and was pleased with the results but wanted more! Dr. Skoracki has since left MD Anderson to head up the lymphedema program at the Ohio State University hospital. I loved Dr. Skoracki and highly recommend him to anyone in that area…in case want to put him in your blog. I was originally scheduled with Dr. Chang but he moved to Chicago right before my surgery.

Now I’m with Dr. Nguyen and I really like him as well and am scheduled for the transfer on 9/29. At my last check up in April of this year, I told Dr. N I wanted to try more of the bypass surgery. He told me I would get the best results with the lymph node transfer. Actually, Dr. Chang, Dr. Skoracki and Dr. Nguyen have all told me I would get the best results with the transfer but I was to chicken the first time 🙂 So I have decided to go for it but I’m nervous, scared and excited and hopeful all at the same time.

Dr. Nguyen is taking the lymph node from my stomach and either transplanting at the groin or calf, depending on where I need it. I will have a drain for several weeks. Did you have any drains? If so, anything I need to prepare for with those?

I would love to hear any suggestions and recommendations about preparing for the surgery–I’m following the blog as well.” Lisa

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Copyright © 2013-2015 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

Cindy.. 8 months post surgery with Dr Granzow

imageThis is a new update from Cindy after her surgery with Dr Granzow in December 2014. Always great to hear of people’s progress as this is a very slow process waiting to see results!! Any changes are good changes and give hope to others.

 

“Just got back from my post-op appointment with Dr. Granzow (in California). As I said, I was supposed to see him in June, but a personal loss prevented me from making that appointment. I am 8 months out from my December 2014 surgery. I feel wonderful. I am not using any nighttime compression. My right leg (the lymphedema one) is smaller in some areas than my left leg. There is no pitting. The overall volume difference between the right and left leg is 34 mil. In January 2014, the difference was over a 1000 mil. Unfortunately, around my knee area I accumulated excess fats and proteins under the skin. It is not fibrotic and it is not fluid, it’s just there. There is not enough there to warrant any type of lipo to remove it. I am still wearing my custom garment (Elvarex class 3) during the day and receiving MLD twice a week. I’ve chosen to be very conservative and let my lymphatic system really have time to heal. My plan is to cut back on MLD to once a week, then in a few weeks not wear any compression on Saturdays. As long as I have no swelling, I will maintain that for 6 or more months. Then I will go without compression on weekends. I’ve lived with lymphedema for 5 years, I am going to do everything possible to get the maximum benefit from this surgery. I sincerely believe that if I take it slow and not overwhelm my lymphatic system, I will one day be able to be out of compression more than I am in it. That is my longterm goal!

I flew for the first time in July. The plane ride was over 5 hours and I did not have any swelling (of course I was wearing my garment). Prior to the surgery, I was afraid to fly. Prior to the surgery, my leg still swelled even when wearing compression. I only started wearing a custom garment in November 2014. It was never suggested to me before. I always wore an off the shelf garment. I was led to believe custom garments were only for people who didn’t fit in off the shelf garment. False information!! I should have been in a flat knit from the very beginning. So much time is loss when you are trying to get treatment for lymphedema and that is a tragedy. Had things been addressed correctly, the fats and proteins would not have had a change to build up the way they did. Accessing MLD treatment is not always easy.

The psychological aspect of living with lymphedema is the hardest part (in my opinion). Always wondering what is going on under the skin. Praying the skin stays soft and pliable. Having to stay on top of it is exhausting. Ignoring it would be foolish.

Dr. Granzow and his staff are incredible. I know I am in very good hands. Any question I have is answered immediately. As incredible as it may sound, I am able to contact Dr. Granzow directly. My own research is what led me to Dr. Granzow. Being proactive is mandatory when you have lymphedema. Information doesn’t just come to you, you have to go out and find it yourself.” By Cindy

This is a link to Cindy’s surgery in December https://lymphnodetransplant.wordpress.com/2015/01/05/california-lymph-node-transfer/
Thanks so much Cindy for sharing your progress with others… Slow and steady wins the race!!! This surgery is not an instant fix and it can take a year to start to see the first signs of change and improvement. The new nodes grow very slowly so great patience is needed..

This blog does not replace advice and consultation with an experienced surgeon… Make sure to ask lots if questions and also find out about their pre and post surgery protocols…. Helen

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Copyright © 2013-2015 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

Great News.. Lymph Node Transfer going well!!

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This time a year ago I was preparing for my Lymph node Transfer or as I called it “My Lymph Node Transplant”… March 14th 2013 was surgery day. Things did not run as smoothly as I had hoped, after nearly nine hours of surgery I returned to my room, bloated all over, in pain and very uncomfortable, ready to fight all the staff due to the effects of anaesthetic!! Tubes out of everywhere, drains in the surgery sites and still nil by mouth till the next morning, so I could go back to surgery if there was no blood supply to the transferred tissue!!! My daughter wrote about this long day while my family and friends waited for news in the post called “The Big Day” . These are such clear memories for me. I remember laying there thinking, What have I done to myself? Why was I so crazy as to put myself through this? I am all swollen up I have made my Lymphoedema worse!! all these thoughts were buzzing round my head. Then on the second day my temperature went up and the area round the newly implanted nodes was red and hot, cellulitis had hit!!! This was very scary as the infection could destroy the transferred tissue and enclosed nodes. There followed a two-week stay in hospital on IV antibiotics and when I was allowed home another month of oral antibiotics. Three months after my surgery I had an ultrasound to see if any nodes had survived the infection. I was so thrilled when it showed one and maybe a second one… Phewwwww!! It was difficult for the technicians to see as there was still a lot of surgical swelling.

Then we come to today, as this is nearly one year post surgery, I was due another ultrasound. I had felt there was some improvement in my lower leg but I have lost all perspective as to what my leg was like. I thought maybe I was just imagining changes!! I am always anxious before any scans or tests and these are no different, especially when this was elective surgery and if there are no nodes then it would all be for nothing. The technician was quite serious and said, “Do you know this is experimental surgery?” I thought oh no he is preparing me for bad news, then his face lit up and he said, “There is one and there is a second and maybe that could be a third.” He did look quite amazed and me I wanted to burst in to tears I was so relieved and happy!! This year has been such an emotional roller coaster it was good to have positive news.

My Lymph Node Transfer / Transplant is on track. The nodes will continue to grow and create new Lymphatic vessels. It is just so very exciting that this new surgery will shine a light at the end of the tunnel for everyone with Lymphoedema. The more surgery and more experience these surgeons have the better this will become. Thanks Dr Quan Ngo for allowing me this opportunity and to Macquarie University Hospital for allowing me to be part of their research. I see Quan next week and will have measures done and an L-Dex reading as part of the research program. At 18 months and 2 year I will have more measures and scans to check progress.. It is a slow process but this is heading in the right direction!!

I would also like to thank EVERYONE who has and is supporting me, my friends and family. To Jennifer who had her Transfer done over a year ahead of me, she has been my guiding light each step of the way. Jennifer was able to tell me what to expect, when I got dishearten she would say, ” Just wait it will be ok!!” To all my friends who have Lymphoedema, you are the people I talk to and you really understand where I am coming from!! To those who have had surgery after me, “Yeh  it works!” To my Husband for putting up with some major mood swings over the past year, a big hug to you. ❤❤ To everyone who reads my blog and has helped it to grow and become something very special to me..

THANK YOU ALL 😃😃
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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

How are the scars healing???

One of the things I have heard others say is that they are worried about scars on the neck, if the nodes are removed from there, to use in the transfer. I must say when the doctor first told me this I too was a bit concerned and started to grow my hair before the procedure!! However seven months down the track the scar is just a fine line along my collar-bone. There is a slight hollow behind the collar-bone where the tissue was removed but probably only noticeable to me! This is the latest photo taken before I go for a swim.. Yesterday in Australia it was 39C in October, which is crazy weather for this time of year. Heat is always a challenge for those with Lymphedema so this summer could be very difficult if yesterday was anything to go by… The hotter it gets the more Lymph our body produces and the more our Lymphatics are put under stress… So swimming can be a great help as it cools the body as well as allowing exercise without over heating and the water is a natural compression.

Neck scar  7 months after Lymph node transfer

Neck scar 7 months after Lymph node transfer

The scar on my knee is not quite so pretty, but I do not think many people will be bending down to check out the inside of my knee!! What I have noticed over the last few weeks is the swelling has gone down and the scar sits flat against my knee. I thought after surgery I had added a lump at the side of the knee as well as LE!! It shows how patient you have to be as it takes a long time for the body to heal and settle and then for the nodes to grow.

Knee scar 7 months after Lymph node transfer

Knee scar 7 months after Lymph node transfer

Knee scar 7 months after Lymph node transfer

Knee scar 7 months after Lymph node transfer

The overall results at this stage are difficult to calculate due to a loss of pre surgery data. I am to see the doctor again on 25th October so will be able to compare results from three months after surgery. I feel my lower leg responds better but I don’t see much improvement in the thigh at this stage. A plus is that I have had no infections since surgery, which was one of the main reasons for the LNT. Many of you who experience Cellulitus know how debilitating this is, it would entail me having IV antibiotics on a regular basis either in hospital or at home. The main down side since surgery is the numbness I am still experiencing from the inside of the knee down to the foot. This affects my balance and the leg is weaker, so I have to be careful especially going up and down stairs or walking on bumpy ground. However I am told this will improve in time… I sure hope so!! I am wearing a 30-40 compression stocking during the day but no compression at night, just elevate the bottom of bed a little. After surgery I used the Ready Wraps from Solaris instead of bandaging and I have them if needed, which has been very little of late. I have MLD at least once a fortnight with Lisa Higgins in Balgowlah who also uses a hand-held laser on the knee area to help the scaring and to stimulate the cells in the newly transferred nodes. If you live in the Sydney area she is a qualified Vodder Therapist and worth a visit.

Left leg 7 months after Lymph node Transfer..

Left leg 7 months after Lymph node Transfer..

I will post another update after the 25th October when I see the doctor.

I also wish to send a get well message to Kimber who is recovering after her major surgery in New York.. Hope you start to feel better soon.. Remember slow and steady wins the race!! Also a friend who had liposuction here in Sydney.. Get well soon girls…
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Research to lessen likelihood of donor site LE

The lymphatic system, lymph vessels and lymph ...

The lymphatic system, lymph vessels and lymph nodes. Español: El sistema linfático; vasos linfáticos y nodulos o ganglios linfáticos. Русский: Лимфасистема с лимфаканалами и узлами. Polski: Układ limfatyczny (chłonny) – rozmieszczenie głównych węzłów i naczyń chlonnych. (Photo credit: Wikipedia)

One if the fears associated with Lymph node Transfer is that patients may get Lymphoedema in the area of donor site. This research is interesting in addressing that problem for the future, by using techniques to map the lymphatics of the donor site and ensuring no nodes are removed which drain a limb. Thanks to my “Reasearch Assistant” in Belgium who keeps me up to date with the latest articles. I am sure we will see more of this work from Dr Dayan in New York.

Vascularized Thoracodorsal and Lateral Thoracic Artery-Based Lymph Node Transfer for the Treatment of Lymphedema: Technique and Case Series
Erez Dayan, M.D., Mark L. Smith, M.D., Mark Sultan, M.D., William Samson, M.D., Joseph H. Dayan, M.D..
Beth Israel Medical Center, New York, NY, USA.


BACKGROUND:
Vascularized groin lymph node transfer has been described as a successful treatment for lymphedema. However, patients with bilateral lower extremity lymphedema may not be candidates, and the short pedicle may not be ideal if the recipient site requires greater pedicle length. Transfer of axillary lymph nodes draining the chest wall has been performed but there is no literature on the technical details of this procedure. We present a case series and technique for vascularized axillary lymph node transfer using reverse lymphatic mapping to minimize the risk of lymphedema in the upper extremity.
METHODS:
Four patients underwent axillary lymph node transfer between October 2011 and June 2012: two patients with lower extremity lymphedema and 2 with upper extremity lymphedema. Reverse lymphatic mapping using technetium injection into the upper extremity and indocyanine green into the chest wall was used to avoid harvesting lymph nodes draining the upper limb and to facilitate chest wall lymph node harvest. Donor lymph nodes were harvested based on the thoracodorsal artery in 2 cases and based on both the thoracodorsal and lateral thoracic arteries in the remaining 2 cases. A thoracodorsal artery perforator skin paddle was included in 3 of the 4 cases. Intravenous indocyanine green and SPY evaluation was used to confirm perfusion of lymph nodes following anastomosis. Video and technical details will be illustrated.
RESULTS:
All patients had viable free flap transfers with satisfactory perfusion of the lymph nodes confirmed by intraoperative SPY evaluation. There were no postoperative complications and no observed lymphedema in the limb adjacent to the lymph node harvest donor site. Our first patient experienced a significant reduction in upper extremity limb volume as illustrated in the attached figures. Long-term follow-up on volumetric data and quality of life will be provided at the time of the meeting with a follow-up range of 7 – 15 months.
CONCLUSIONS:
Axillary lymph node transfer may be a useful alternative to groin lymph nodes and provides a long pedicle which may be preferable in a severely radiated or hostile recipient environment.

Lymphatics of the axillary region

Lymphatics of the axillary region (Photo credit: Wikipedia)

Lymphedema: Estimating the Risk for Patients with Breast Cancer

This maybe of interest to those of you treated for breast cancer and who have had lymph nodes removed .. ..thanks Dr Michael Hunter for this…

understandcancerin60minutes

The development of breast cancer-related lymphedema is tied closely to how many nodes are removed by surgery. Radiation therapy and chemotherapy can also increase risk. A recent study from Korea (published in (check out the length of the this name!) International Journal of Radiation Oncology Biology Physics, 2013) attempted to estimate the risk of lympededema based on combinations of these treatment factors.

The Study: The authors looked at 772 patients with breast cancer. All had primary surgery with axillary node dissection from 2004 to 2009. The study looked back at these patients (retrospective analysis). Adjuvant chemotherapy was given to 677 patients. Of the 675 who got radiation therapy, 35% had a component directed at the nodes above the collarbone (supraclavicular nodes).

Results: Half of patients were followed beyond 5.1 years. The 5 year cumulative chance of getting edema was 17%. Of these 76% developed it in the first 2 years…

View original post 309 more words

Christine’s surgery with Dr Chang

This morning I posted a video in which Dr Chang talks about the surgical interventions for Lymphoedema. By coincidence Christine contacted me later in the day, she had surgery performed by Dr Chang on the 6th June. Christine was very happy for me to share her story and has also sent me before and after photos. Her leg was bandaged for a week in hospital below the transfer site and the difference in her foot and ankle in this time is amazing. She continues at home with bandaging and MLD and is very happy with the results. She has also become and Advocate for the Lymphedema Treatment act which everyone in the USA with Lymphedema should support. http://lymphedematreatmentact.org/

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This is Christine’s story as always in her own words as I find this best conveys their story.
“I was so excited to find this blog site. I have suffered from lower left leg lymphedema after uterine cancer in 2009. I had a hysterectomy and 19 nodes removed 10 on one 9 on the other. Immediately after surgery I had swelling in the pubic area that would swell from right to left and settled on the left side. Then in 2010 I flew in a plane with a scratch on my left leg and when the plane landed I noticed both ankles were pretty swollen. The right ankle subsided but the left never did. My oncologist sent me to have a Doppler study done to make sure I didn’t have a blood clot. Then I was sent to a lymphedema center for consult. I was diagnosed with lymphedema and had no clue what it was. No one ever mentioned this to me prior to surgery or after. I did therapy, compression hose, bandaging, and flexitouch. Over time the lymphedema progress up the calf, then knee, upper leg and groin.
In 2010 I decided to go back to school and got my BSN. I currently work in the NICU and being on my feet the lymphedema was just completely out of control. I have had to go up 2 shoe sizes just to get one on and 3 sizes in clothes to fit the leg. I only wear long dresses or my scrubs to hide the leg. My leg would swell so bad I couldn’t even bend my knee or ankle. There were times where my skin felt like it would rip open. I have developed bad stretch marks and depression was almost taking me down. I had even told my mom that amputating the leg would be better than this. It was hindering everything about my life. Nothing was working period.
I started researching anything for help. I found articles about Dr. Becker and the lymph node transfer. I flew to California to meet with a surgeon by the name of Ganzow. He said I was a definite candidate for the surgery but he didn’t accept insurance for payment. His fee was $25,000 per cut and told me I would need 3. I didn’t have $75,000 to give him and wait for reimbursement back. He asked me why I didn’t go to MD Anderson in Houston, Dr. David Chang, since I live in Fort Worth. As soon as I got back home I contacted them for an appointment. I had the lymph node scan done with the dye and it showed I had severe lymph blockage as the dye never left my foot on the affected leg. This was done in March 2013. Dr. Chang was a very pleasant and funny doctor. Has a great bedside manner. He informed me that I was a candidate for the surgery and he could do either the lymph node transfer or by-pass which ever I preferred. He said both are good. I told him that I would leave it in his hands to decide and he said that first we have to see what the insurance will pay. Right then I started praying for God to make a way for me. I had my church and everyone praying. I got the call at the beginning of April that my insurance approved BOTH procedures (miracle from God) and Dr. Chang suggested we go ahead with both he was shocked they approved both. Surgery scheduled for June 6.
When I arrived in Houston on the 5th for pre-op I had a scan done to determine the difference in size of my left leg from my right. I was at 24% and Dr. Chang said the leg was a lot worse than when he saw me in March and that he wasn’t sure he would be able to do the bypass procedure. I just told him to do what he could do and we would let God do what he couldn’t. My surgery was at 5:15 am and lasted 8 hours. I had a bad reaction to the dye they used in surgery to view the lymph channels which told them they couldn’t do the bypass. They removed lymph nodes from my neck/collar-bone area and transplanted them to the groin. Apparently I had severe scar tissue that was causing a lot of my lymph problems that they cleaned out before transplanting the nodes. When I woke up I had a JP drain in my neck and groin. I was told not to get out of bed period for 48 hours and I couldn’t put any pressure on the groin site. It had big capital letters with a sharpie that said NO PRESSURE. I was in a lot of pain but I have a low tolerance. I am not a back sleeper I sleep on my stomach so I was pretty miserable. I was allergic to the morphine and was itching like crazy everywhere. I was just a hot mess. I was afraid to look at my leg so I didn’t. I was scared to be disappointed. Then this small voice said you trusted Me for this surgery didn’t you? When they unwrapped my leg bandaging I couldn’t believe my eyes. I had toes that didn’t look like sausages and an ankle bone I hadn’t seen in 2 years. Wow!!!!! I was bawling my eyes out. I can’t thank God enough for this miracle in my life.
I am 24 days post op now and my leg still looks great. My knee and upper leg are still swollen but it’s hard to know what is lymph fluid or just normal swelling from my leg being cut open. My incision on my neck is pretty intense looking but I promise you I could care less. It is beautiful as far as I am concerned!!! I am excited to see the progression and give God thanks everyday for His grace. I will be going back to work on Tuesday for “light” duty. I will keep in touch as to my progression. I am going to therapy 2xs a week for MLD and bandaging. I wear bandaging at night and compression thigh high during the day. I am hoping to get to wear the full compression hose so I can get some relief from the upper leg swelling. All in due time. If anyone out there is considering doing this surgery all I can say is that I just trusted God. Doctors can only do so much. I do think that the government needs to allow people to receive this surgery. Lymphedema is horrible. I am curious as to what you were prescribed to do post operatively about compression to the receiver site. Let me know!!! Christine :-)”

Thank you so much Christine for sharing this with us.. Your account is very open and honest. To answer your question at the end I was not allowed to put compression over the receiver site for a month and as my nodes were placed in the knee I could only wear knee highs. Due to an infection post surgery my recovery and progress went backwards for a bit!!! I am now well on track at 4 months and new scans and MRI to be done at 6 months. Also on my neck scar I use Vitamin E and it has faded very will!!

Below are some before and after photos that Christine has taken and allowed me to share….

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Christine’s photo of her foot and ankle before surgery. This is after she takes her shoe off.

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Prior to surgery Christine’s leg would be very swollen by the end of the day. Photo Christine

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After surgery and a week of Complex Bandaging.. Photo Christine

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Post surgery and a week of complex bandaging.. Photo Christine

Thank you so much Christine and we look forward to your updates… If anyone else would like to share their story please email me on helenbrd@bigpond.net.au or leave a comment at the bottom of this post I can follow-up on.
Thanks… By sharing we help each other…

My Positive Mojo is Back!

I thought that I would reblog this to remind myself of how far I have come and for those of you who are new to my blog… this is where it all started!! Hospital was not the best for me, due to an infection but now I am building fitness and hoping those little nodes will grow and create new pathways. I am now 3 months since surgery and wear a compression stocking each day and Ready Wrap sometimes.. lower leg looks good and knee and lower thigh gradually improving.. At six months I will have an MRI and Lymphescitagraph to check progress. I also have regular MLD and Deep Lymphatic Drainage… It is slow progress but in the right direction!!!

My Lymph Node Transplant

I suggest that those of you who get a little queazy with medical details should maybe not read this post, as I will give details of surgery!

Firstly I am still in hospital and only allowed to the bathroom keeping my leg straight, otherwise sitting with leg up or on the bed. At the moment I am only allowed to bend leg to 30 degrees, let me tell you getting in and out of bed is a real trick!!! Cellulitis appears to have made its last stand by coming up around the knee incision, so some very strong IV antibiotics. I am tired but in no pain, as areas appear numb, but as of yesterday my sense of humor returned and I think my “positive mojo” is back! In the last couple of days I had truly thought myself a lunatic to go through with this!

I have said before…

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Lori’s surgery USA

Lori had surgery on 29th May in New York under Drs Becker and Vasile. Lori travelled from California to have this surgery, having investigated other Doctors, she found she was happiest with their protocol. She wrote to me before the surgery that this was her last hope!

Lori says:- “Ugg! It’s over! I have lymphedema in my leg. The surgery was a success! Lots more healing though..and therapy. I had a team of four docs working on me.. They cut into my arm pit and removed a flap..don’t know how many nodes. They cut on the right side of my leg, almost where my pants seam would go and above my knee, about a 4 1/2 inch incision and placed the harvested new nodes. My doctor told me that as soon as she cut open my leg lymphatic fluid gushed out! When I woke up from the four hour surgery my arm felt like it had been broken..the pain was intense and sooo sore. I couldn’t move it. My leg however..was without pain! The incision didn’t even hurt! I had lots of numbness around my knee and down my leg and the right side of my ankle… no feeling at all. I had drains in my arm for a week and my leg for four days.” Lori

Lori is now home and we hope to hear some more updates of her progress, she is hoping to return to swimming as soon as possible.
Thanks for sharing this with us as everyone has a different experience.. If you would like to share your story please email me at >helenbrd@bigpond.net.au or leave me a comment to contact you… Helen

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