Singapore Lymph Node Transfer

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One of the things I have enjoyed since starting this blog is “meeting” others via cyber space and social media. I receive many emails from those thinking of surgery, or those having surgery, many ask questions and others tell me of their experience. In November I had an email from Thomas who was due to have a LNT and LVA in Singapore. The Lymph node Transfer was from the neck to the knee and the Lymphatic Venous Anastomosis was to be used where needed. LVA is a procedure where the Lymphatic vessels are joined to a vein to drain the lymphatic fluid. Thomas has kindly allowed me to share his emails in the hope that it may help others who are either going through or thinking of going through this surgery. There is very limited documentation especially from patients and every story helps in the search to cure Lymphoedema.

Thomas’s story starts 22nd November 2014

Thanks, I am glad that my wife found your blog it gives me hope. I initially thought I would be living with an enlarge left leg for rest of my life. I am open to sharing my experience to encourage lymphedema patients. I know there is so little known, treatment information is not readily available. I was living with this condition for pass 15 yrs! I did not know about treatment until my 3rd bout of cellulitis. I had to be admitted for antibiotics IV, I wish I had known earlier about the surgery.

My operation is to be done by two surgeons. Prof BK Tan and Terence Goh. The Prof will do my neck while Terence the groin. I understand that they did 15-20 such cases over the past 2 years. There is this lady in her 60s or 70s had it done on both legs. They wanted me to meet her prior to my decision, she said there was considerable improvement. That gave me confidence. I am having my operation in Singapore General Hospital. There will also be a guest surgeon from Okinawa, Japan here to observe the surgery.

I think that the physiotherapists play an important role here for me too. They are very well train by the Austrian school (Vodder School)…. the “mother of all lymphedema treatment”. I already see results from the compression bandage.

Please continue your blog for as long as you can , as I think it provides us with support. I am confident that I have little fibrosis, but since my operation that removed my pelvic nodes, more than 15 yrs ago,  I am concern about the effectiveness of LNT and the success of finding good lymphatic vessels for LVA. It is an anxious time!!

23rd November

The doctors will be doing LNT from my neck to groin area, so it will be a long journey for the lymphatics to grow! As far as I know the Dr will be using dye to trace my lymphatic system, so keeping my fingers all crossed that everything will go well for me.

I am currently having bed rest in the hospital to prepare for the operation. I do the massages that the physio taught me. I hope to be in good condition for the operation on Tuesday. Only small problem is the rash on my outer thigh caused by bandaging last week. I am using tubi grip for my calf and leaving it to heal before the surgery. The aim is to reduce the fluid in the leg pre surgery to give the best chance of success.

29th November

Today is the 4th day after my operation. I am getting stronger by the day. I have been ordered to continued bed rested.

I only had one LVA done near the groin. According to the doctor they wanted to see if the LNT is working properly before they do further LVA, which I think kind of makes sense. Anyway they told me that LVA near the ankle may not be effective due to the pressure caused by gravity, it could dislodge the connection, but another doctor advise me that the Japanese surgeons swear by LVA, but to be effective there needs to be a few done on the limb.

The doctor told me that there was a lot of lymphatic leakage when they cut my groin and they had wanted to use some muscles to patch the area. However after a LVA to one of the lymphatic vessels and connection of transferred nodes the leakage started to dry out, but they are not sure if this will be permanent. The whole procedure took 6 hours.

On the second day my calf to mid-thigh was wrapped to gain maximum drainage effect. There was a small concern from the professor, who join in during the operation, that bandaging too early may cause the operated groin to flood. My main doctor then delayed the bandaging for a day, after which the physio only bandaged lightly. At the same time my leg has been elevated continuously. A collection tube was inserted in the upper and lower groin after surgery. Interesting thing was the lower groin drain was always empty, which kind of puzzle them. Over the weekend my calf will not be bandage, for airing, as there were rashes developing before the operation and the physio does not want to risk it coming back. Looks like my skin is quite sensitive.

The neck area is recovering better. The drainage tube will be removed later today.(day 4)

The time for removing drainage tubes will be when less than 20ml is discharge for 24hrs. It has been in the 30s on first day and then some days empty. This morning was 20ml+. Probably due to some movement the previous days, to prevent me from lying on my bed in same position for a long period.

As for my groin, the upper discharge was 100ml for first two days. Then 30+ml and about 20ml today. No sign of it being removed soon as the doctor wants the leaking fluid to be collected as much as possible.

I hope the recovery will go smoothly and well. I am trying to reduce my food intake to less than normal amount so I will not need to have a bowel motion till I can sit up!!!

3rd December

I am allowed to shower since yesterday with my leg elevated straight, a week after my operation. Makes me feel so much better!! The only problem is the dressing gets moist after the shower despite being waterproof and we uses a plastic bag to cover it, so it needs changing after each shower. Nurses have been sponging bathing me for 7 days and hair was only washed once!!

The drains in my leg have been removed, there was bloody discharge in the lower groin drain still, but manageable with a few dressing changes through the day when it is soaked. As for the upper groin drain there was yellow, clear liquid discharge, which the doctor says is the liquid the body produces to repair the wound. All looks good so far…

I am allowed to sit in a chair now, but didn’t sit up as much as I wanted to for fear of squashing new nodes. Yesterday they gave me wheelchair training!!

The doctor wants to go slow on the walking part since we aren’t able to monitor the lymph nodes. He wants to make sure they are not injured. Unfortunately they have no way to find out if the transferred nodes are intact, which is a little worrying.

The physio is here daily to put compression bandages on my leg to just before the wound site. I also hope to catch the compression garment vendor here in time for when I start my walking practice. This way the vendor can take measurements and tailor the garment. It takes two weeks and as I understand there are not many vendors in Singapore due to low demand, there is limited manufacture of garments in Singapore they usually have to come from overseas.

I feel great now, although I am not mobile, my leg has gone down quite a lot with the rest and leg elevated from the first day I arrived at the hospital. Certainly we do not know if or when the lymph nodes will starting work but at least I know most of the fluid in the leg has been removed which gives the nodes and the LVA the best chance of working… Thomas

Thank you Thomas for sharing your experience with us, I hope you will allow us to follow you, as you progress at home and have follow-up appointments with the doctors. Wishing you well soon and able to get out and about again. Much patience is needed now but it is all heading in a good direction…

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13 thoughts on “Singapore Lymph Node Transfer

  1. God Bless this gentleman for sharing his experience with us-I too am contemplating a LVT and lymphaticovenous bypass in June–I would love to discuss this with someone but no one seems to know very much–I am concerned about the area in my neck from where they want to take the lymph nodes. I have been told in the 20 yrs Dr. Chang has been doing the lymph node transplant, there have not been any patients who have had swelling in their neck after removing nodes. I was told that there are an abundance of lymph nodes in the neck. I’ve had lymphedema in my left leg for 2 1/2 yrs and I have done all of the conservative measures known to man and I’m anxious to have something more permanent. This gentleman is giving me to hope to “Just do it” Please keep me posted as to his journey–I pray this surgery will bring him relief from the lymphedema. Thank you for sharing. Liz

    • Hi Liz,

      Thanks and I hope everything goes well for u too. I have the same concern as you too before the ops. I talk to the ex patient that Prof Tan refers me to and speak a lot to Dr Terence too. The thing lady was fine after a year plus with no lymphadema on the neck. The surgeon told me the neck has a lot of nodes and they would harvest the ones that has least impact. Before the ops they also explain the is some possibility that vocal and lower facial nerve my be damage during the ops. In most cases it will recover over time. In my mind i was thinking it was a small price to pay if lymphadema can be improved and best treated. After the ops, thank god everything was fine and pain only lasted a couple of days. Prof Tan was also very confident that there won’t be lymphadema. Liz, I suggest that u discuss with your surgeon over it on how he is doing it and he seems very experienced too. Different people react differently to nodes removal and this is just my personal experience. I pray u will have a very successful operation.

      • Thomas, Dr. Chang did not say anything about issues regarding the facial nerve or vocal cords-I will address that with him at some point. I only met him once-that was when I went to Chicago for the lymphoscintigram–you know the test where they inject the dye between your toes!! That was awful too. Thank you for sharing your experiences with all of us-It is very kind and generous of you. It’s helping us tremendously by giving us hope because we all want our lives back. You sound like you are doing fabulously. I am very happy for you and hope you will stay in touch with us so we can follow your progress.
        I was told that my hospital stay would be 3 days but I have to remain in Chicago for a week total time so Dr. Chang can evaluate my progress day by day. After that, when I get home, I’ll be allowed to walk but not work, since I stand on my feet 12 hours per day during a regular work day. I’ll be off from work for about 1 month total time. It’s exciting but frightening at the same time. I haven’t decided what day in June I’ll have it done. After the Christmas holidays I’ll make the final decision. Thank you for sharing your information. Please keep in touch and have a speedy recovery. Liz

  2. Hi Liz,

    I am told by my physio every patients and every operations are different. So there is no one standard way of treatment and recuperation. Certainly every doc works differently too. Trust with discussion with Dr. Chang will help give u more confident when your doubts are cleared. Do share your journey with us too. I feel by reading each other journey we not only gain more knowledge of lymphadema treatment but also gives us faith and confidence to live on.

    • Thomas, I would like to have a discussion with Dr. Chang, but the only brief encounter I had with him was immediately after the lymphiscintigram, I walked across the street at the University of Chicago and went directly to his office. He had my results and spoke to me for a brief time. That was really the only meeting I have had with him. I do have questions. It seems like the questions I have I present to the people who schedule the surgeries-his office manager, not the doctor himself. Maybe I need to ask to have the doctor call me or tell me where I could reach him. The more I talk to people like yourself who have had the surgery the more enlightened I become and the more questions I know to ask. Discussing this with you has been wonderful-It’s real input in real time, meaning, while it’s happening so that all of details are remembered.
      I want to be able to wear a skirt or dress again-instead of living in jeans and pants. I feel restricted because of the difference in size of my left leg from the right one-It is a noticeable difference-especially my left ankle. When I put on a pair of boots, it’s a REAL struggle getting the zipper up. I am able to do it but I break out into a sweat doing it!! This has been an incredible journey in so many ways. A real learning experience which I too will share once I have the surgery . I want to be able to help someone who may be thinking of having the surgery-I’ll be able to share my experiences as you have. Take care-Liz

      • Thank you Thimas and Liz everything that you have been discussing helps everyone else as well via the comments. It is why I started the og a I could find no info from other patients. This us a great resiurce for people. Thanks to you both. Maybe Liz write your questions and find out uf you can email them to Dr Chang or insist on speaking to him. I know other drs do allow time to ralk it is very important to have your questions answered. Helen

        • Yes, Helen-great idea about emailing Dr. Chang–I do want to hear my questions being answered by the Doc himself–I’m going to work now and I’ll get back to a more extended response when I come home from the ER-take care-Liz

  3. Pingback: Latest update from Singapore LNT & LVA | My Lymph Node Transplant

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