Latest update from Singapore LNT & LVA

imageThis is the latest update from Thomas who had a Lymph Node transfer a few weeks ago in Singapore.. This is a link to first instalment..

https://lymphnodetransplant.wordpress.com/2014/12/13/singapore-lymph-node-transfer/

7th December 2014

I was discharged yesterday. Feels good to be back home.

I have had my measurements for compression garments taken. I am lucky that I may be able to fit into an off the shelf size. Will be back to the hospital tomorrow to try them.

I was ordered to be partial weight-bearing on my operated leg. I try to not walk too much at home, elevate the leg and continue my bed rest. I intend to so till I have my stitches removed. I didn’t dare to really bend my groin too much fearing I may squash the nodes there! Do others have the same feeling?

As far as I know that the garment needs to be re made when it gets loose. The physio here also discourage circle knit garments. I used tubigrip for many years, it does control the size a little but needs to be changed regularly.

I guess it is a long and slow process from now on to see any real results, but I do see my leg coming down as the skin is sagging from the rest. I hope with the garment it will help the skin to contract. I guess my leg is like a deflated balloon!!

11th December 2014

I just received my compression stocking yesterday from my physio, the vendor flew them in from Germany. It is a class two stocking, I was told it was not flat knit as it is not a custom-made one, but would still do the job. This is not the final garment at this stage. My stitches are still not removed so I can only wear them 3/4 up my thigh, leaving some not pulled up. I tried wearing it today again but I experience some pain and took it off. I will probably use a tubigrip or bandage instead for the time being. What brand of compression garments do others use?The physio says the size will increase when I start full daily activities and does not want me to feel disappointed, at this point they would start taking measurements on the progress.

I will have my first review with the doctor on Monday, I am eager to know what his plan is and I have lots of questions to ask! Eg. When to start full weight-bearing, start massages, etc.

26th December 2014

Merry Xmas!!!

I am glad I could get out for a Christmas gathering. I had my stitches removed on Monday. My physio told me to start full weight-bearing on my leg so that I could have my muscle working again. The overall size is smaller, compared to my first visit two weeks ago just after my discharge from hospital! However it was slightly bigger than the previous week due to increased activity. The physio told me to start increasing my activities so that they can get a realistic measurement for the final compression garments that Will be ordered next week. I hope I will be getting flat knit. Dr Terence also ordered toe caps as my current stocking is an open toe compression garment.

After a day of Christmas activities my toes swelled up, as expected, I bet my legs did too. I was reminded that my legs would swell still by the physio, so I am prepared, but I will bed rest during boxing day. The size is coming down but with some walking activities has started to increase again, all I can hope is that my transferred nodes start to improve my lymphatics.

I hope the nodes survive, I do worry about this! I intend to swim when I get better in about 6 months time, my physio says that the pool is good. I am doing deep breathing a few times a day. Dr Terence told me that the MLD can be started in a months time. So far I have been walking well without much pain but I am not doing big movements or squatting.

Indeed it is a roller coaster of emotions.

image

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17 thoughts on “Latest update from Singapore LNT & LVA

  1. I wore bandages on my lower leg after surgery, no higher than right above my knee as to not put pressure on the incision. Two weeks later I was able to put my full flat knit compression on all the way up my thigh, BUT with a 5inch by 9 inch pad over the incision. The garment is too big in the thigh area which allowed for padding. I spent a good portion of the day pulling it up. I’m still not putting full weight on the leg with the new node. On 1/6/15 I am able to go into a better fitting flat knit. I return to work on 1/5/15 and am nervous about swelling. It’s so much easier to keep swelling down when I’m not up and about. Gravity is no friend of leg lymphedema. Thank you so much for sharing and I wish you a full and speedy recovery. Please feel free to contact me directly using my email address. Thank you My Lymph Node Transplant for this wonderful site that brings us together and allows us to share! 😊🙏

    • Thanks Cindy for sharing your experiences with us ..i have passed your comment on to Thomas… We are gathering a real community of those who have had surgery for their Lymphoedema.. Sharing really helps others.. Cheers Helen

    • Hi Cindy, I have read your and Thomas’s messages and I too will be having the LVA and LNT in June-I have been told that I will need 3 days in the hospital and then 3 weeks of recuperation after the surgery. I am nervous about this entire event but I know I can not continue with just conservative measures any longer-I need something more permanent and that’s why I have opted for the surgery in Chicago with Dr. Chang. The compression stockings I presently use are the Jobst 30-40 mm of HG panty hose but they bunch around my ankle and sometimes and in my groin so I feel they are doing more harm than good-When I go to work and am standing on my feet for 12 hrs at a time I wear a one leg garment with a panty over my jobst panty hose–what a hassle-every summer I vow that this will be my last summer of feeling imprisoned by these garments- and that is why I’ve decided to toss away the fears and go for the surgery once and for all. Please keep me posted of your progress as I want to be aware of what lies ahead of me. Thank you–Liz

      • Cindy, also to add to the above comment I Just wrote, you are correct in that gravity is no friend to LE–when I come home from working my 12 hr shift in the ER, my left leg feels like a rock despite the garments I wear under my scrubs. I sometimes have to get my husband to help pull the stocking off of my leg! I do have the flexitouch machine but wonder if it is really doing anything-At night I sleep in the heavy quilted sidvaris garment on my left leg. It is a daily struggle but thank God for this blog and all of the information I’ve learned from others. Please keep the info coming–Liz

        • Hi Liz,
          I am very happy to hear that you will have your surgeries in June. On December 11, 2014 I had the lymph node transplant. Presently, that was the surgery my doctor thought would be most beneficial. It was a nightmare getting insurance approval. I have lymphedema in my right leg. My case is a little unusual in that I did not have cancer (though I had a radical hysterectomy because I was told I had cancer), so there was no chemo or radiation. Unfortunately, 7 weeks post hysterectomy I had emergency surgery for an evisceration (small bowel prolapsed). Lymphedema in both legs started shortly thereafter. My left leg responded well to treatment not my right leg. First met with my doctor in 2012 and at that time was not ready to try a surgical approach. Like you, I felt overwhelmed with wearing compression and still having my leg swell at the end if the day. My leg consumed my ever waking moment. I was unwillingly to do anything that would possibly increase the size of my leg. I wore a 40-50 compression and slept with a Jovi at night. The emotional impact of lymphedema for me was huge. Not the cosmetic part, I learned to accept that. It was the constant fear of doing anything to make the swelling worse.

          The surgery was not bad at all. I was so fearful that the surgery would trigger the lymphedema to become out of control again. Immediately after the surgery a PT lightly wrapped my lower leg in bandages. I did not have any swelling in my lower leg. The bandages could not go higher than my knee because there couldn’t be any direct pressure on the incision, and of course there was the drain. I did have post op swelling in my right thigh and my left torso/hip area, from the donor site. I was suppose to stay in the hospital one or two nights but I developed a hematoma at the donor site (totally unpredictable) and became anemic because of the blood loss. I spent 5 nights in the hospital. Stayed in California ( at a hotel) and rented a wheelchair. Yes, for the first 2 weeks I had no weight on my right leg. Please remember I only had the LNT done. When I left California, the two drains were removed and I was put in a compression garment (that was loose enough in the thigh…which allowed me to put a surgical pad over the incision). Tomorrow, I start MLD and will go into a better fitting custom garment. Tomorrow, I also return to work (I am nervous about being on my feet all day). My PT has to wait until 4 weeks post surgery to perform MLD directly over the incision. The only place I had any true pain was the donor site because of the hematoma. I needed a second surgery to clean that out. My leg has no bruising, post-op swelling appears to be gone. It’s hard going out of state for surgery, thankfully my doctor is readily available. My California PT and my local PT will need to stay in touch to monitor my progress. Hope this answers some of your questions. Feel free to keep them coming. I seriously mean that, I know I had a million questions and thoughts running through my head (still do!!). It is too soon to see what type of improvement I get from the surgery. The fact that my leg didn’t blow up is a very good sign and when I left California thevdoctorvsaid the node already started to vasculize. I am feeling very positive about this procedure. As I have said before, leg lymphedema and arm lymphedema are different. My PT was saying (most of the time) arm lymphedema is easier to stabilize. Gravity and leg lymphedema are constantly working against each other. I look forward to hearing from you (and anyone else) who has questions or just wants to compare symptoms they might have.

          Lastly the pump, I had a flexitouch when this first started. At that time I saw no visible results (I was able to return it). I then got a Lympha Press with the truck attachment. That did help. Now I wish I had the flexi because I think my condition would benefit from the gentle massage it applies. Back in 2011 I wanted to see a visible reduction in limb size and the Lympha Press gave me that.

          Please excuse typos!!! I get caught up in the moment and my brain and fingers are not always working at the same speed! 😳

          • Thank you Cindy for your very soulful and heartfelt response-I know EXACTLY how you feel. OMG I hated the world and couldn’t understand why this had happened to me-as of this June, it is 3 years since this journey began. My MLD was 3 years ago this coming June-I had MLD 3 X per week for 3 months (June-October, 2012)- my left leg measurements decreased, (the therapist measured my leg every couple of weeks). When the measurements of the affected limb, my left leg, stopped decreasing, the MLD was discontinued since the insurance company has to see results in order to continue to allow for the treatments. At that point, my leg was measured for the compression garment which I would wear long term-that garment is a single leg compression with a panty. I pray hoping I am never in an automobile accident and they have to pull my pants off and they will be confronted with how to pull the compression garment off my leg!!LOL-It is very hard to pull that single leg garment off my leg!!! Finally I got the flexitouch apparatus with the trunk attachment, but have not seen results. I do see a softening of the extremity after the 1 hour treatment on the flexitouch but I do not see a reduction in the size of the leg. Because of this list of events, and because of the added information from this blog, I realize I now have options–I have checked with my insurance company and Dr. Chang’s surgical procedures are covered and he is “in network”—Thank God! I am very grateful–I really want to speak with Dr. Chang not just his scheduler-I did meet Dr. Chang when I went for my lymphoscintigraphy and he answered a few questions after my test. However, before I undergo surgery, I do want to speak to him. This week I intend to make my apt for June. I am nervous but you have all are very encouraging and supportive- and I feel like I have brothers and sisters pulling for me.

            My donor site will be my neck- the neck has large quantities of lymph nodes and only a few are needed to be deposited in my left groin. My fear is that my neck will get lymphedema from the removal of lymph nodes. Then what will I do??? You can not put compression garments around the neck–I asked Dr. Chang that same question-He said that in the 20 years he has been doing LVA and LNT he has never seen neck lymphedema from the removal of lymph nodes from the neck. We’ll see what happens-I love any questions and responses I receive from this posting. We are all in this together and we, AS PEOPLE, ARE BIGGER THAN THE A SWOLLEN EXTREMITY. We well get through this-Love, Liz

            • So well said Liz and so interesting. I love the interaction that these comments bring. We are no longer alone. When i was first diagnosed 13years ago my compression garment was up to the waist with one full leg and one leg to knee!!! A real passion killer!!! I even had lace put on them!!! Thank goodness over the tears i was able to move to just a thigh high stocking on the left leg. Helen

  2. I did see the latest comments and promise I will respond tomorrow. It is so important that we support each other in our quest for answers/treatments in dealing with our lymphedema. I am especially grateful to connect with others that suffer from lower extremity lymphedema.

  3. Caros, fiz meu transplante de linfonodos na perna esquerda faz 9 meses. Ainda não vejo melhoras na perna, mas, meu médico está bastante otimista por causa das imagens do exame linfocintilografia. Os novos linfonodos aparecem na perna. Talvez seja uma questão de tempo mesmo, para que eles finalmente “trabalhem”.
    No final de janeiro vou fazer lipoaspiração, a primeira de várias sessões. Fiquei um pouco decepcionada porque meu médico me disse que será conservador nesse procedimento, tirando apenas 4 litros da gordura e do líquido acumulado na perna. E que a próxima sessão será após 6 meses da primeira. Eu sei que a paciência é nossa maior aliada, mas essa espera por resultado dá uma angústia.
    Helen, mais uma vez, me desculpe por escrever em português.
    Abraços a todos e muita força para a longa caminhada.
    Dida Een

    • Dear, I made my transplant lymph nodes in the left leg is 9 months. Still do not see improvements in the leg, but my doctor is very optimistic because of the images of lymphoscintigraphy exam. The new nodes appear in the leg. Maybe it’s a matter of time even, so they finally “work”.
      In late January I will do liposuction, the first of several sessions. I was a little disappointed because my doctor told me to be conservative in this procedure, taking only four liters of fat and fluid accumulated in the leg. And that the next meeting will be 6 months after the first one. I know that patience is our greatest ally, but this awaits result gives an anguish.
      Helen, again, I’m sorry for writing in português.i
      Hugs to all and a lot of strength for the long haul.
      Dida

      Thanks Dida for your update I aways translate these for the comments… Yes it is a slow process and it took a year for me to see changes… Stick with it and all will be good .. Helen

      • I keep seeing everyone mention “nodes”. My doctor harvested nodes, but only transplanted one node in my thigh. When I asked him about transferring one to my thigh and one to my knee, he said it is better to be conservative. Having an LVA would require many new connections, in case some fail. I’m curious, do any of you know for sure that you definitely received more than one node, and if you did, did you receive them in different locations on your limb?

        • My doctor told me that they do not know how many nodes are in the transfered tissue as they do not disturb it to much. An ultrasound later showed two. I do know a lady who has five functional lymoh nodes in tissue transfered to lower leg. My understanding is that each site needs an individual doner site tissue as it needs vein and artery to reconnect to blood supply.

          • Granzow told me he didn’t know how many nodes would come out from the tissue from donor site, but would only being using one. I do know that the surgery lasted 6.5 hours. I’m going to get a copy of my surgical report. I want to be better informed on how it was done. Granzow preferred using mid torso (left side) for donor nodes. He didn’t actually go under my arm pit. Though, incision does run up into that area. He told me the neck was an option too. There was a part of me that wanted to say take it from the neck, but then I decided he is the specialist, let him make the medical decisions. I highly recommend making a list of questions and having your doctor answer each one prior to surgery. Granzow answered all my questions via email or phone!! He even did that before I actually decided to have the surgery. That is what I like best about him, he is genuine.
            The other part of lymphedema is the impact it has on our family. I’m trying to loosen the grip lymphedema has on my everyday activities. I actually had my family vacation without me because I didnt want to have my leg blow up and not have access to a PT. Hopefully, the results from the surgery will help me in this area.

  4. Hello Cindy. Good luck with the surgery. I know what you are saying that lymphedema has an impact on family life activities too. When I go on holiday I prefer to go in winter now because I hate to be in summer with long trousers and these hot stockings under it. It just ruins my good humor🙂 and then I get a bit cranky hehe. So now I prefer being on holiday in winter time, when my leg is not too hot so I can be active with not to much of pain… I hope one day this can be fixed and then I am planning only going to tropical islands🙂 .

    • I hate that I get cranky with my family!! Sometimes, I think it is the psychological fear of doing damage to my leg that stops me from wanting to do things. When we are out and about, I’m always concerned my leg is swelling. I am afraid of doing too much, yet doing nothing isn’t healthy either. I’m still trying to find a middle ground. I’m forever adjusting my garment and right now am having a problem with my garment and shoes!!! Sandals work best, but the weather is cold right now. The bony part of my foot is becoming raw and irritated from the garment.
      Tropical islands are my dream vacations. Nothing sounds or smells better than the ocean!! My goal is to take my family to the Caribbean (I’ve visited them often many years ago). Nothing better than the beautiful turquoise water. Want to feel the sand between toes.
      Hopefully, my surgery will allow me to go without compression for a few hours and walk along the waters edge. ☀️🌴

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