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


Copyright © 2013-2015 by Helensamia. All rights Reserved.

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Liz.. Two weeks post surgery … Dr Chang

The latest update from Liz….

“I am now 2 weeks and 2 days post surgery and Dr. Chang denied my email request to go to the gym!!!—Oh well-I had to try—I am allowed to go for a 2 mile walk and “build up to a 4 mile walk” but no gym yet–I have told him that the day I was discharged from the hospital my husband and I went into Chicago and walked at least 5 miles (I wore a pedometer)–it was a casual 5 miles but it was still 5 miles. Hey, I have to listen to him. I really respect his professionalism/ability and I believe I can be and want to be the poster child for LE. I pray every day for the best possible outcome for all of us and LE relief for all of my new-found friends on this blog.
The golf ball size swelling I had at the base of my neck where lymph nodes were removed has decreased in size and for that I am very grateful. It was a small accumulation of fluid which was reabsorbed into my own blood stream without any intervention at all– just patience. Every day is a new beginning for all of us including my lymph nodes–lol–Just like I talk to my beautiful blue hydrangea which have decided to bloom this year because we have had some rain, I also talk to my new lymph nodes which I hope are growing big and strong in my groin….God, I sound crazy but I’m just really excited!! I am hoping to generate excitement and proactive behavior in everyone who has LE–we are at the dawning of a new frontier for LE care..More providers are hearing of the procedures being performed–More insurance companies are approving of the procedures. We are a voice–I know this will happen in our lifetime! God bless everyone and keep hanging on.” Liz

Thanks Liz as always for keeping us updated and your resonses to others questions.. It is a great resource for others.. Helen…


Great News.. Lymph Node Transfer going well!!


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..


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. 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…

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.


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….


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


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


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


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 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…

View original post 529 more words

My story in photos….

These pictures show the incision in knee where transferred nodes have been placed, they were taken  from the neck…Photographs were taken at various stages….

It is now eleven weeks since my surgery and this week I will have measurements taken to compare with pre surgery. When I left hospital (after two weeks) my leg was bigger than before surgery!!!!! This was due to infection, lack of movement, no MLD and no compression garments, in fact I was very distressed by the state of my Lymphoedema. It was not till week four that I was allowed to have Manual Lymph Drainage, use compression garments, bandaging and Ready Wraps, so this slowed the process right down. Now it is week eleven, scars are healing post surgical swelling is reducing. Is lymphoedema reducing? This is the million dollar question!!!! Only time will tell!!!


First week with area of infection marked.. Photo Helensamia


Four weeks with stitches out.. Photo Helensamia

Incision in neck where the Lymph nodes were removed from.

Four weeks…Incision in neck where the Lymph nodes were removed  for transfer. Photo Helensamia.


Wearing Ready Wraps to reduce swelling instead of complex bandages… Photo Helensamia


Four weeks in compression stocking class 3 with incision area protected… Photo Helensamia


Eleven weeks in compression…. surgical swelling reducing in knee.. Elevated when ever possible!!!Photo Helensamia


Eleven weeks after surgery.. Scar fading…. vitamin E oil used everyday.. . Photo Helensamia


Eleven weeks…..Scar healing well on neck ….I use vitamin E oil on it every day.. Photo Helensamia


Eleven weeks… At night after compression stocking removed… Photo Helensamia


Eleven weeks.. First thing in the morning.. It seems to be draining during the night…Photo Helensamia

A light at the end of the tunnel!


Can I see the light?…Google images

I started my day today with the Physio for Manual Lymph Drainage and to see how things were going. This week I had not used the Ready Wraps and had worn my compression stocking instead. I had felt that the Ready Wraps were pushing the fluid from my knee downwards instead of up and away!! I had also decided to just do the walking I needed to do this week, not strengthening exercises or stretching of the knee. This was because I am not sure if the extra exercise was causing the knee to swell rather than being Lymphoedema. We did not do any measures today but the Physio felt that I was actually getting a visible knee and less swelling. Next week we will measure again and hope to compare these to pre surgery measurements. My leg is soft and there is no pitting, so this is good, but is it due to Lymph nodes or all the treatment I am getting!!!

Next it was off to the imaging department and the ultrasound I had been dreading. Could they see any viable Lymph nodes in the transferred tissue? As always my surgery was of great interest to the technician, as a first at Macquarie Uni Hospital.(leg) The  lady had lots of questions, which at least helped to calm my nerves. She then started to do the ultrasound on my knee and I could barely breathe…
“I think that’s one there and it’s working hard.”
Oh my goodness what a relief I could feel the tears coming but managed to hold it together. The technician then went and got two of the doctors to come and have a look. They thought that maybe there were two lymph nodes and asked how many had been transferred, but I did not know that, I thought it was usually only three or four to protected the donor site. They said because there was fluid present it was difficult to tell but they thought two… Well that is much better than zero…. My story continues!!!!


Coming out of the darkness.. Google images

A light at the end of the tunnel, after all that I have been through, was more than I hoped for. I emailed my doctor and told him to expect a report and I wanted to hear the results before I see him next Friday!!

Be Positive, Patient and Persistent..


Google images

I saw this today when I was on the internet and thought how appropriate it was for my time at the moment, I think also a good thought for others to use too. “Be Positive,  Patient and Persistent .” Apologies to the original author but there was nothing to say who created this, but such good words, so thank you who ever you are!

I thought I would give you an update as to my progress the last couple of days. Yesterday I went to work for the day, which was a big event, given that I had a 45 minute drive each way and realised that the seat belt goes right over the incision on my collar-bone. My previous short drives had been ok but I found I had to put a bit of padding in the form of a wool scarf to protect my shoulder. I have been asked by others if this surgery had been painful, in fact during  the whole process there has been very little pain, due to the areas being quite numb and the surgery especially to the knee not in deep. The shoulder and neck  however have had some discomfort of late as I think some of the nerves are waking up! Especially as it is my right arm, which I use more, there is quite an ache by the end of the day. However given the length of surgery and the two areas affected I have only needed to use the odd Panadol other than the first couple of days.  Back to my day at work which I really enjoyed, I work as a counsellor/therapist so I am sitting most of the time. My doctor had asked if I could elevate my leg while I was working but I thought this would look a bit silly while I was with clients, so  in between  I elevated!  At least the doctor at last let me go back to work! It was good to get out and do something “normal” and to use my brain! I only intend working part-time, as I work for myself I have given myself permission to do this!!

Today I went to a large shopping centre near me  and felt quite overwhelmed by all the people. It does not take long when you have been isolated for a few weeks to get unused to crowds. I was a bit worried someone would knock or push me or I might trip over, have to pick my feet up!! The main thing is that you can see I am at last doing  some everyday things, I maybe slow, I may get tired but I am doing them. I must always remember when there are times  I feel down that with  Patience, Persistence and a Positive  attitude I will get there!


I love the little pansy faces.. Photo Helensamia

One of the things I love to do is photographing flowers, so over my next blogs I will share some with you. I think of flowers as natures Happy Face!

The Battle Scars!

It has been a month since my surgery and I thought it was maybe time to show you how the surgery incisions are healing.

Incision in neck where the Lymph nodes were removed from.

Incision in neck where the Lymph nodes were removed …. After 1 month.. Photo Helensamia

When the doctor and I were speaking prior to the surgery I had thought that this incision would be higher on my neck and more noticeable. I was very pleased to see after surgery that it is along my collar-bone on the right hand side and can be easily covered. However I am amazed at the way it is healing and after only a month it is looking very good. The doctor used dissolving stitches for this incision and as these disappear the scar is getting flatter and smoother, of course I use vitamin E oil on it every day, I swear by that stuff for  healing scars!

Below are two Photos of the incision in the side of my left knee where the Lymph nodes from my neck have been transferred to. These were taken at 1 week and 1 month after surgery.

Incision in left knee 1 week after surgery.. Photo Helensamia

Incision in left knee where nodes have been transferred to… 1 week after surgery.. Photo Helensamia

Incision on side of knee where the lymph nodes have been transplanted.

Incision on side of knee where the lymph nodes have been transplanted… After 1 month.. Photo Helensamia

Unlike the neck incision these  stitches were not dissolving and had to be removed. Due to the infection these were taken out after three weeks rather than the normal two weeks. I was very glad to have them removed as they had started to really pull, but as you see a week after the stitches were removed the scar is looking flatter and healing well. The swollen knee is a “work in progress” and should gradually reduce in size, though it is less swollen than the first week after surgery. (Angle of picture makes it look worse).

Everyday I have a routine in the mornings of Manual Lymph Drainage , which I do myself, and the exercises for the lower limbs to improve Lymphatic drainage. I then put a dressing over the scar on my knee to protect it from any friction caused by my compression stocking, that I then put on. I order my compression stockings from America, a company called Ames Walker. I find they are about a third of the price, (to Australia), good compression but finer and I am lucky enough to be an off the shelf size. Over the years I have had various garments many custom-made but have now settled for just the stocking and tights for stand-bye if needed round tummy.

After all this I need a little rest!!!

Compression stocking on, incision protected and I am ready for the day! .. Photo Helensamia

Compression stocking on, incision protected and I am ready for the day!..Photo Helensamia