Lymphedema and Compression

Sharing Karens story and her latest update as to how well she is going with the treatment of the Lymphedema… There was a time when she could not wear compression garments due to the size and shape of her legs… However Karen is now going really well it is so good to see.. Thank you Karen as always for sharing your story.. It shows that there is hope for everyone with Lymphedema. Take care

lymphedemaandme

I am not a person who likes to make absolute statements. I have always believed that what works for one person with lymphedema will not always work with someone else with lymphedema. Every person is unique.

BUT I am now going to say that I now believe that compression garments or wraps is the key to living with lymphedema. I have primary lymphedema and I have lived all of my life with it (well officially  the lymphedema didn’t show until puberty) and I have had a lot of lymphedema pain for the last 25 years. In the last few months I was able to have treatment where I was wrapped with Coban wraps and my legs were finally to a shape where I could actually wear compression stockings. WooHoo!!! I have not had lymphedema pain since I started wearing my compression stockings (actually since I started being wrapped with the Coban…

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Lymphedema: a Name for 33 year’s worth of questions.

A great post about Primary Lymphedema and its diagnosis and treatment ..thanks Laura for sharing your experience so others may learn from it …

Expressions of Laura Ashley

This month, I began a journey that I never thought I was prepared for. Upon realizing that I was in my 30’s and having never really addressed why my legs always looked puffy or swollen, I thought I’d go to the doctor. I didn’t really know where to start, so I went to the foot doctor. As part of their intake session, they took an xray of my foot. When I met with the doctor, he looked at my foot movement, my walk and gait, and range of motion. But he said my bones were fine. Even my foot, which he said was not a “flat foot” but a type of flatter foot, was fine. But he said he thought I had lymphedema because of the swelling and that he’d refer me to a lymphedema specialist. I left with a prescription for low level compression wear and some online resources…

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My Invisible Disease by Michelle

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When the invitation came to “Write your Story” as part of Lymphoedema Awareness month, my initial thoughts were ‘I don’t know where to start, it will be too long and boring, do I want to go over all that again’. It’s such a mixed bag – it has been painful, presented many challenges and also some good opportunities, like connecting with all of you now!

Long story short, I had endometrial cancer 13 years ago, I recovered and five years on I felt like I’d passed through the ‘danger zone’ and was doing fine. I went to some hot springs, got in to sooth a sore back and the next day my leg began to swell. That was almost 8 years ago.
I knew what it was because I’d been given a sheet of paper when I left the hospital warning me to watch out for signs of Lymphoedema. I just didn’t realise it could appear so long after my surgery.
What I have found out about lymphoedema in the last 7 plus years has taken determination, courage and a tenacity to not give up in the face of consistent messages that there’s no cure, your only options are DLT, MLD, compression garments, and don’t get bitten by anything!” Like probably most of you, felt reluctant to take that lying down and so started the long search! I did find other things that would help along the way, like hydrotherapy, rutin powder and a low carb diet, to name a few. I’ve also been assessed as suitable for LNT but at present the only surgeon doing this surgery in Australia is not comfortable with transferring to the groin, which is where they need to go to make a difference for me.

Which brings me back to, how do we stay positive and not give up when the doors turn into walls? Rather than go into the physical aspects of the struggle with lymphoedema what I really want to talk about is how it impacted me emotionally and psychologically. Just in case I’m not the only one 🙂 First was the impact of realising that ‘I’ve got this thing but no one seems to know much about it’. GP after GP stared blankly when I said I had lymphoedema. I found a massage therapist who had been trained in lymphatic drainage massage and had developed a small business providing massage, bandaging, compression garments and creams etc. I had to travel 7 hours by car to see her. None of this was subsidised and represented a substantial cost upfront and ongoing. I wrote to Lymphoedema experts to see what else I could do. I ended up frustrated because the bottom line was, there was not much other than the standard maintenance therapies that seemed to work.

I recently asked myself, what is it about lymphoedema that makes it so invisible as a condition within the medical model? I’m not sure, but I’ve wondered if lymphoedema is seen as a blip in the otherwise positive story of saving people from cancer? Perhaps medicine doesn’t really want to acknowledge that a surgical intervention may have created something worse than what it was trying to cure. I’ve had people say to me ‘well, at least you survived’ and this is true but it’s not the whole story! And this is the main point I want to make, it takes an enormous amount of inner strength to keep moving forward when you’re left alone to find your own solutions, cover the cost of treatments and garments, deal with the constant worry of cellulitis, the sense of isolation from your healthy friends and wondering where will this all end, how will I manage old age? At times this has felt truly overwhelming!

One positive thing my GP did recently when I went into a mini melt down during a visit, was to suggest I have a mental health plan (in Australia this is subsidised sessions with a psychologist). At least mental health is subsidised! I mean, initially I was horrified. The GP thinks I’m nuts!!!! But the truth was that I was starting to sink under the struggle of being an ‘invisible’ person with an ‘invisible disease’. So I went along for a session and it turned out that this psychologist specialised in Mindfulness meditation. I signed up for an 8 week course and that made a huge difference to how I was coping. I still struggle at times but meditation gives me a reprieve, a place to let go of the struggle. I’m not saying meditation is for everyone. It seems there are as many things that help as there are people with lymphedema. The main thing for me really was to acknowledge that I was struggling and that I had become isolated. Having people who understand you is so important. Forums like this blog site are good for breaking down our isolation. I’ve come to see how important that is!

My hope is that there will one day be proper resources allocated to lymphoedema, that others will not have to spend years piecing together a picture of what will help them cope. I hope there will be good emotional support for those facing life with lymphoedema, more research and clinical trials of possible solutions.

In the meantime, it’s good to know you are all out there. I’ve been so impressed and inspired by people’s stories of courage on this blog site! By Michelle

Thanks so much Michelle for sharing your story with us prior to Lymphoedema awareness month.. Helen

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
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Cindy’s update re measurements…

imageThis is an update from Cindy to make it clear how much work is needed both pre and post surgery to support the nodes while they grow. The measurements start from two years prior to surgery.

“I don’t want there to be any confusion over my leg volume and for anyone to think the size of my leg changed overnight, it didn’t! For eleven months before surgery I was diligent in getting my leg ready, compression 24/7, using my pump, MLD 3 times a week and I lost approximately 10 pounds in weight. In January 2014, I weighed 123-127(pounds), today I weigh around 115-117 (I’m 5’4″).

We do not have LDex readings, everything is done by measurements.
In June 2012, my leg volume was 9347, the volume of oedema was 674.
In January 2014, leg volume was 9766, volume of oedema was 1056.
On December 9, 2014 leg volume was 7801, volume of oedema was 220.
On August 4, 2015 leg volume was 7702, volume of oedema was 34. I’m reading all of this off a spreadsheet used by the PT in California.

My surgery date was 11th December 2014. As you can see from my numbers, I devoted all my time and energy to getting my leg as small as possible prior to having the procedure done. There is no way I would have been able to devote that much time to my leg on a permanent basis. Since having the surgery, I no longer need to do all of that. Though, I do wear compression during the day, MLD once or twice a week. Some weeks I don’t get any MLD treatments (either my therapist is away or I’m away)..It’s so important that people don’t look at this procedure as a miracle cure. Anyone who is thinking of having the surgery done, should know there is a lot of work to be done on their part, it’s not just the surgeon. Compliance is mandatory! ….. over the next few years I hope to see more improvement as the nodes grow. Slow and steady wins the race..” Cindy

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

 

Liz, four weeks and counting down to the first year!!

imageAn update from Liz… Love to read about her progress…

“We are now into the very end of week 3–This Friday makes it 4 weeks since the surgery for LNT and LVB with Dr. Chang. The good news is the ‘wraps are off’–YAH–now I am back to wearing the Elvarex during the daytime and under my workout tights to the gym. I will also wear the Elvarex to work under my scrub pants. I have seen the LE therapist here in CT and she did the MLD (also called the Complete Decongestion Therapy) on Tuesday of this week. That felt wonderful.Tomorrow with will be my first day back to the gym in 4 weeks.

I have been in touch with Lisa, RN at Dr. Chang’s office to ask a few questions and I have also sent emails to the LE therapist who works with Dr. Chang. I just needed a few things clarified. They did get back to me quickly. I should not be expecting a miracle overnight-within the year there will be changes and a reduction in volume. At least I have something to look forward to. All incisions have healed-I use the flexi touch apparatus at night and then I wear the quilted night-time garment to bed. When I wake up in the morning, the leg is soft. I then apply the Elvarex again and go about my day. I know I can not obsess about this. I have to let my body just do “it’s thing”–whatever that may be. I know in my heart I have done all there is to do for the LE and now it’s time to let my body take over and grow the ‘long roots of the lymph nodes’–lol-You have to have fun with this once in a while…On the discharge instructions it is stated that in a couple of weeks, I should get re-measured for new elvarex but I really don’t think I need to–the same size Elvarex I wore before my surgery are the same ones I am wearing now–they are still as difficult to get on now as they were then. I sit on the floor with my purple Playtex gloves/turn on the fan/ and sweat as I struggle to pull them up and fit them into the groin crevice!! OMG that was descriptive!!LOL. I’ll figure it out as I go and I always know I have a fabulous back up system when I need one. Someone out there from this blog will have an answer if I need one. You are all very warm, sharing, caring, people with a wealth of knowledge to share.
Tomorrow, I’m hoping the gym feels wonderful ….. My husband tells me to come to the pool with him (a community pool) but I’m not comfortable yet–eventually I will. Here is my one question–what brand of compression panty hose do you wear that can supply you with the same compression as the Elvarex? When I do wear panty hose, Jobst, which I seldom do because they eventually bunch around my ankle/knee/ groin, and I think they are doing more harm than good. I was wondering if anyone else had any ideas about a different brand other than JOBST medical compression?? Thank you-hope to hear soon–Liz”

Thanks for keeping us in the loop, great patience is needed now till there are signs of change… A softening of the leg seems to be the first change… Helen

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California Lymph Node Transfer..

imageThis is a post from Cindy, who wrote this via a comment but I felt there was so much useful information it needed to be shared as a post, so everyone would see it.

“December 11th 2014 I had the lymph node transplant which 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 thought to have 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 after. My left leg responded well to treatment but not my right leg. I First met with my Lymphedema surgeon in 2012 but at that time was not ready to try a surgical approach. 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 could 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.

Eventually I decided to go ahead with surgery which was not as bad as expected. Pre surgery I had a lymphascintograph to show placement of nodes. I had been so fearful that the surgery would trigger the lymphedema to become out of control again. During the surgery the doctors took nodes from the left axilla and placed them in the thigh of the right leg (inner thigh not groin). Immediately after the surgery a Physiotherapist 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 supposed to stay in the hospital one or two nights but I developed a hematoma at the donor site (totally unpredictable) and became anaemic because of the blood loss. I spent 5 nights in the hospital while this was treated. On leaving hospital I stayed in California, in a hotel, and rented a wheelchair. For the first two weeks I was not allowed to weight bear on my right leg. Please remember I only had the LNT done. Before 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). I started MLD on returning home and will go into a better fitting custom garment at a later stage. On 5th January I return to work (I am nervous about being on my feet all day) and wonder how this will affect my leg post surgery. My physio has to wait until 4 weeks post surgery to perform MLD directly over the incision. 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 via email or phone call which helps. My California PT and my local PT will need to stay in touch to monitor my progress. Hope this answers people’s questions. Feel free to keep questions 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 the doctor said the node already started to vascularise. 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 stabilise. Gravity and leg lymphedema are constantly working against each other. I look forward to hearing from anyone else who has questions or just wants to compare symptoms they might have”…… Cindy

Thanks so much for this Cindy, gives us a really good picture of the process you have been through.. I hope you will keep us posted on your progress…,Sharing really does help others.. As you say so many questions which Cindy is happy to answer.. Please leave any questions as a comment..

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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

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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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

Help with self-care… Videos

These two videos were created at Mt Wilga Rehabilitation Hospital so that people who could not come to the hospital for therapy could benefit from their program…. One video is for lymphoedema of the arm and the other for legs. Some of the video content is duplicated but has individual topics for legs and arms.. The portion which shows self massage is very important for self-care. What I have learnt is the importance of clearing the abdominal area… The “basin” which is the area below the rib cage between the hip bones and pubic bone. Using abdominal breathing and then massaging into this area, to stimulate the many lymph nodes we have in the abdomen, you can actually start to feel the abdomen gurgling when you do this. It is also something you can do several times a day. Remember … Clear the Basin… This is a great help for those with leg lymphoedema as the lymph from the legs can then be cleared upwards and then eliminated from the body. I hope you find these videos helpful..

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

Story in pictures.. Building awareness..

Apologies for my lack of updates!! I have been very busy setting up my twitter account and working on my Facebook page in the hope of spreading the word about Lymphoedema. Cyberspace gives a world-wide canvas to  work on and every person who reads, shares, likes and now twitters helps to educate and teach others. Often those of us with lymphedema feel we are the only people who know about it!!! We all have stories of misdiagnosis, lack of treatment and ignorance within the medical world. Often we find out about treatment and care for ourselves or via others who have lymphoedema. We are the best at supporting and understanding each other. Everyone who reads this can help to build awareness by emailing to friends, reblogging, following my Twitter or Facebook page… Both of which have links by scrolling to the end of these posts.. Share and like… Together we can make a difference.. 😃😃
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The other part of this post is to tell a story in pictures of my three weeks spent having complex bandaging. At the end of the three weeks my L-Dex reading was down to 5.1… The best it has ever been for the past 12 years. My leg responded very well to the MLD and bandaging to the extent that it looks as if the transferred nodes are starting to really help the lymphatics in my leg. One problem area was the fibrous tissue at the back and side of the thigh. This we know cannot be helped by the Lymph node Transfer which will only help move the fluid. Three weeks of MLD, bandaging and the use of laser has softened this area so now there is more chance of it shifting. I have also been measure for a new compression stocking. Previously I have worn a circle knit stocking but the therapists at Mt Wilga prefer the flat knit garments which have a seam up the back and are quite thick. This was the type of garment I had 12 years ago but i did not find them comfortable as I had an up to the waist garment. However this new garment is much softer and feels very comfortable. The decision was made to order a custom-made Elvarex by Jobst. The off the shelf garments are now not the right size as the shape of my leg has changed, lower leg almost the same as good leg but from just below knee upwards still quite swollen. So here is the story of my three weeks in pictures.

First week you can see how swollen the knee area is and middle of leg

First week you can see how swollen the knee area is and thigh

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Taking the bandages off each day ... Starting to see improvements

Taking the bandages off each day … Starting to see improvements

A chart of progress measurements

A chart of progress measurements

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Elvarex flat knit stocking, black as so over beige!!! Happy with results

Elvarex flat knit stocking, black as so over beige!!! Happy with results

So where am I at now? Well the leg is still reducing but I still need at this stage to wear a compression stocking. July 4th I have another follow-up appointment with my surgeon. More photos taken more measurements and progress report. I am still part of the research program so will be monitored for at least two years. I think after fifteen months I am starting to see progress… Not a cure yet but progress in the right direction. It shows that time is needed and a lot of patience to see results. In six weeks I return to Mt Wilga for a review of my stocking and how it is fitting and also another measure in the hope there is more reduction.

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