The leg is getting smaller!!

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On Friday I went for my 18 month post Lymph Node Transfer surgery check up. I am part of a research program here in Sydney. I will have follow-up for at least two years so that the doctors here can make decisions on future LNT surgery. There is a definite opinion that LNT surgery does not work if there is fibrous tissue present, as the new nodes cannot break this down, but can clear fluid and protect against infections. Therefore it is very important for the doctors to decided who is suited for LNT and who is best suited for Lymphatic Liposuction surgery. From this view point, at this time, at Macquarie Uni Hospital they are performing more Lymphatic Liposuction than LNT surgery. There is talk of maybe doing a LNT on these liposuction patients in the future, but so far this has not happened. The hope would be that the LNT would help post Liposuction and stop the limb swelling again. At this time after Lymphatic liposuction compression garments need to be worn 24/7 otherwise the arm or leg will swell. Lymphatic Liposuction is different to the liposuction for weight loss as care is taken to preserve  the existing lymphatics. http://www.ilfconference.org/fibro-lipo-lympho-aspiration-flla-a-lymph-vessel-sparing-procedure-lvsp-for-advanced-stages-of-lymphedema/

So back to my appointment and measurements which have reduced since my visit in March 2014. One of the measurements that is used is the L-Dex reading. http://international.l-dex.com/what-is-l-dex/ This compares the good and bad leg and shows how much fluid is present in the LE leg in comparison to the good leg. In March my reading was 7.1 then June 5.1 and now it is down to 4.5 which is within normal range. This is very exciting as there seems to be a gradual improvement each visit. The doctor also felt the area at the back of my lower thigh had softened a lot, with the help of three weeks compression bandaging, MLD and Compression Garments. I have also had no infections since the surgery 18 months ago so that is a huge plus for me. I am back in a pool without fear if infection which I am very happy about. If this surgery keeps my leg in the best state possible then that is a big improvement, as my fear was always that it could get worse and worse.

I have not been writing so many updates on my own progress as there has been little to say!!! It is a slow and steady reduction which takes lots of patience!!  Will I ever not wear compression?? Only time will tell… Next appointment will be March 2015, my two-year anniversary. I will be having an MRI and Ultrasound done then but I declined another Lymphasyntagraph!! No more injections between toes needed!!

If anyone else has an update to share then send this news via email to helenbrd@bigpond.net.au and I will create a post… As always sharing helps everyone… Helen

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Preparing for Lipedema Liposuction (mind, body and wallet!)

For those with Lipedema this maybe a good blog to follow for personal infomation

My Lipedema Journey

A little over a week to go until my surgery and I’m preparing as much as possible to ease the recovery process. I spoke with a consultant who specialises with Lipedema and I was recommended to have Lymphatic Drainage Massage (LDM) at least two times prior to surgery.

So I would like to focus on two things that you should prepare: your physical body and your bank account. LDM is, at least where I live, rather expensive and from what I understand, not covered by insurance so it comes directly out of my pocket. As of yet I haven’t researched whether or not the rest of my surgery will be in some way claimable in my country but I will hopefully remember to report on that later (if not, please remind me)!

From what little I’ve prepared I am at least having LDM! It basically means I lie on a flat bed…

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Believe in yourself….

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This blog has the stories of mine and others journey with Lymphoedema, how, why and where! We are each different in how we came to have Lymphoedema, but what we have in common is stepping out into the darkness in search of surgery that may help or heal the Lymphoedema…. What we would love is to throw away the compression garments and say that’s it… No more!!!! However the journey is slow, filled with ups and downs, as the research and knowledge grows more progress is made but the waiting to see if nodes have grown, lymph vessels established takes time. My thoughts are that for legs more than one transfer is needed as it is a larger area than the arms, but only time will tell! For some it is a combination of LNT and liposuction or just the liposuction. Now we have a new area to monitor with the use of Stem Cells being added to the mix.. We await the progress of Val who is having Liposuction and stem cell therapy. I must add though at this stage there is no proof that the stem cell therapy works and it is very much experimental… Follow up needs to be done over a number of years with all these surgeries. Specialist Lymphoedema Liposuction (not cosmetic liposuction) reduces swelling but a compression garment needs to be worn 24/7 after surgery to stop the limb re swelling..

If you are new to this blog there is a great deal of information re surgery and self-care. If you would like to find a particular topic use the search button found by scrolling down the posts to the bottom.

Nothing in this blog replaces medical advice and I make no opinion on which surgery or procedure is better or worse!! I just wanted to bring together people’s experience from a personal, patient centred view-point. I hope to be able to follow those who have given their stories for a number of years to get a true picture of their progress. I would also love to share more posts about people’s personal experiences of either living with Lymphoedema or the surgeries that people have had.. My email is helenbrd@bigpond.net.au

If people wish to remain private I will not use real names, but the more we share the more we learn… Thanks for all the support, wonderful comments and just being there for me, the Internet is an amazing tool when stepping out alone.. I feel it is so important that we “Believe in Ourselves”… To those having surgery I wish you good luck … You know who you are…Be strong and heal well .. Helen

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The search for the Holy Grail- a cure for Lymphodema? (Pre-operative thoughts)

Thanks Val for allowing us to share your journey via this blog… I will be following with interest the progress and results … Good luck on your surgery day…

I must note that this treatment is experimental and there have been no clinical trials nor results from  previous patients other than they are still wearing compression… at the moment the results are the same as for liposuction.. Caution should be used with stem cells at this time as they are being offered with out the backing of results to show safety and results … The info in this booklet is very helpful in making decisions re stem cells and gives a better understanding of where this research is at…   https://lymphnodetransplant.wordpress.com/2013/12/08/features-of-unproven-stem-cell-treatment/

lymphodemalifeinkorea

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November 2013.

My name is Valerie, I’m 52. I currently live in South Korea, with my wonderful husband and our two Cairn Terriers.

This blog aims to reflect my thoughts and opinions on receiving a different new treatment for a couple of medical conditions that are making my daily living much tougher. I hope this journey and collection of facts and thoughts will be helpful to other sufferers about this new treatment, but I am not a medical person, so they may be simplistic rather than medically correct or complete.

I am just an average human being, looking for a cure. If you are too, then – Welcome! I would be happy to share the journey of this experience with you, please feel free to ask if there’s anything you want to know about what happens over the new few months.

I hope you find at least some of it useful as we all hope we…

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Sue does a happy dance!!

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Photo Helensamia

In Sue’s own words….

“I wanted to report on my visit with the surgeon today. Dr. Kanchwala was very pleased with the appearance of my leg, and I told him I had been only bandaging all day/night since last Friday. He pushed his thumb into the calf area, and noticed that there was not as much pitting, which means the fluid is starting to move out. My foot is still puffy and that’s because the foam compression bandaging does not touch the foot, though I have the cloth bandaging and a foam pad on my foot, and two compression pieces around each ankle bone. He also examined my leg incision and was pleased with there being no sign of infection. He told me this is a sign that the lymph nodes are working!
I am to continue with aggressive treatment, therapy and bandaging for two months, and will return to him on August 8th. He did give me permission to return to the gym; he said there is no need for me to walk slowly on the treadmill.

If after the bandages are removed, and my swelling is maintained, he will consider the liposuction, which will remove the fat that has settled in the leg, and this will mean I will have two matching legs. However, liposuction is not definite yet as it is too soon to determine if my surgery is a success.

As far as testing, he told me that he does not test the lymph nodes as he doesn’t want to take a chance of hurting them. There would be no use if the lymph nodes do not work, because he cannot repair them. They would be removed and that would be it. So I am glad, with my insurance situation, that Dr. Kanchwala did not recommend any testing at all.

So I am really pleased today, but still cautiously optimistic as it is too soon to tell if it’s just the compression bandaging giving the leg the good appearance, and the lymph node transfer not making any difference. But at least I have some hope today!” Sue

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Lymph nodes and vessels… Wikipedia

Thanks for your latest update Sue and so glad to hear more positive news…

Times are tough…. Sue’s update

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Not so easy times.. Google images

Starting this blog I wanted it to be an honest account of living with lymphoedema and the process of going through surgery. When you live with Lymphoedema you just want it gone.. It takes over your life 24/7 … It is a constant battle to keep it under control and live a “normal” life. For this reason when there is an opportunity for a cure we grab it with both hands. A chance at life with no compression garments, no MLD every day, no bandaging, no infections, in fact a life free of Lymphoedema and the physical and mental anguish it brings. This is why we opt for surgery and the chance of a new life. We throw ourselves out into the darkness and hope for the best!! However what we find is that everyones results are different. Some fast, some slow and some very slow! We find there are hurdles along the way. We find that the emotional toll is more than what we expected. This is Sue’s latest update which I have shared in her own words, please send her your support and encouragement as she is struggling at this time.

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I just what to be free of Lymphedema.. Google images

“I wanted to report to you on my doctor’s visit yesterday. This was with the lymphedema specialist; the surgeon I will see next Thursday. To put it mildly, I was very disappointed in my progress. My leg, according to the doctor, was the same or worse. There is a lot of pitting in the foot and the measurements have not decreased, despite a month of therapy and daily once or twice a day use of the compression pump. I do have to put some of the blame on my own shoulders, as I should have gone with the compression bandaging, as the doctor and my therapist recommended. But being that I work in a professional office, I thought it would be easier to wear the Reid Sleeve and take it off only to go to lunch. But this was not a good idea. So I am now in wraps all day with the exception of removing them to shower. It is not easy walking around in them, especially when I have to go food shopping, do laundry, clean the house, etc. But I have to bite the bullet and do my best. I am very discouraged as I am not seeing one bit of change in my leg. No knee cap, no bones in the feet, no ankle, the back of the foot is still puffy and unattractive as well.

I wish I had good news to report. I do not know if my surgeon will order any testing for me. I know with the insurance denials he may be reluctant to send me for expensive testing. I hope he will at least listen through his stethescope to see if there is a pulse at the site of the transferred nodes. But I don’t know.

I am doing my best to hang in there, but it is not easy right now. I do not regret getting the surgery as it at least offers some hope to some people, so I don’t have regrets about that choice.

I will report again after I see the surgeon.” From Sue

Thank you Sue for sharing with us this honest account of how you are feeling. I can relate to it totally… We have to remember the stories we see on the TV and in newspapers are only the success stories, that it is only recently the doctors are documenting their results. There is also far more experience with surgery for arms and it is therefore showing good results. However I still feel that that surgical intervention offers help for the future for both arms and legs. This includes liposuction, lymph node transfer and Lymphatic venous anastomoses. The progress maybe slow but we will get there eventually and by writing this blog people will have a better understanding, from a patients point of view.

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I am so fed up with this… But what else can I do.. Google images

Apples and Oranges…

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Google images

Over the last few weeks I have spoken to doctors and other patients who have had surgical treatments for Lymphoedema, I have come to the conclusion you cannot compare legs and arms!! In much the same way that apples and oranges are both fruits, they are different! Legs and arms are both limbs, but they are different! Legs are bigger, they do more work, gravity does not help and there is a much bigger volume of fluid to clear, the Lymphatic vessels have to grow through a larger space and bring the lymph up into the abdomen when gravity pulls it down to the ankles!!

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Google images

Prior to surgery I thought that like the lymph node Transfers to the arm I would start to see results within a few weeks, Sue and Jennifer had thought the same. We were not prepared for the very slow results or the intense Physiotherapy that we would need to see progress. Jennifer is now two years out from the Lymph node Transplant and she has a 20% reduction in the size of her leg. Scans have shown that the transferred lymph nodes are producing Lymphatic vessels so the hope is that these results will continue to improve. Sue is about 6 weeks out from her Lymph node Transfer and she is doing Manual Lymph Drainage three times a week and wearing a Reidboot or Bandages at all times. Me I await a scan on Thursday to see if there are viable Lymph nodes in the transferred tissue. Sue had seen a lady on television who had Lymph nodes transferred to her arm pit and after two weeks her arm was close to the size of her good arm. The reason I started this blog was to build awareness of Lymphoedema and to tell the story of surgical intervention from the side of the patient. Therefore I am  saying that if you have a Lymph node Transfer and/or  Lymphatic venous anastomosis to the leg, be prepared to be very very patient. There is no instant fix but change will happen gradually, the first changes are usually a softening of the leg and a better response to MLD. If you hear that someone has responded to the treatment quickly do not get disheartened as everyone is different. Liposuction to both arms and legs does see instant results but garments must be worn 24/7 as this does not cure the Lymphoedema.

I would really like it if others would allow me to post their experiences of surgery for Lymphoedema or the process of looking into it. I would like to hear about surgery for arms and legs, what led to this decision, have you had Liposuction, Lymph node transfer or Lymphatic venous anastomosis? What is it like to have Lymphoedema both secondary and primary? People sharing their stories leads to a better understanding for others and improves outcomes. I will not use real names so as to respect your privacy. I am happy to edit your post so don’t feel you have to write a perfect item for me even if you give it to me in point form that is ok… Thanks…

Please email Helen at helenbrd@bigpond.net.au

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Google images

I look forward to hearing from you…

Live Symposium..Overview of Surgical Treatment for Lymphedema… LRF

logoI am posting a link to the latest Live Symposium from the Lymphatic Research Foundation
Dr Chang speaks from the Anderson Cancer Centre on the advances in surgery for Lymphoedema

http://www.youtube.com/watch?v=35JlSdsDzbU

“Video Published on May 23, 2013
David W. Chang, M.D., is a professor with tenure and the deputy department chair in the Department of Plastic Surgery, director of the Center for plastic and reconstructive surgery, and director of the The University of Texas M. D. Anderson Cancer Center in Houston, Texas. Dr. Chang specializes in complex microsurgical reconstructive surgery in cancer patients with primary clinical & research focuses in breast reconstruction and restoration of extremity defects such as lymphedema. Dr. Chang has one of the most extensive experiences in microsurgical treatment of lymphedema and is considered a world expert and a pioneer in this field. Dr. Chang has been named to Best Doctors in America every year from 2001 to 2012. Dr. Chang has over 100 publications and has been invited to lecture at over 80 symposiums and meetings both nationally and internationally and to give over 40 visiting professor lectureships in 25 countries.”LRF

Thank you to the Lymphatic Research Foundation for Creating this Video of the live symposium to allow many others to view. It includes some very interesting facts on the progress of surgery, the need for insurance cover and the difficulties of treating leg Lymphedema with surgery. It covers all types of surgery including Lymph Node Transfers, and lymphatic Venous Anastomoses.

University of Texas MD Anderson Cancer Center

University of Texas MD Anderson Cancer Center (Photo credit: Wikipedia)


Liposuction News

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Preparing for liposuction.. Getty images

Liposuction helped shrink my agonising swollen leg: How lipo is relieving a chronic lymph problem affecting thousands.

By ANGELA BROOKS PUBLISHED: 00:17 GMT, 21 August 2012 | UPDATED: 00:17 GMT, 21 August 2012 Daily Mail…. Mail online

‘My leg was so big, it was hard to bend it,’ said Roisin Gallen By the time Roisin Gallen received treatment for chronic lymphoedema, her left leg was twice its normal size. The divorced mother of two, normally a size 12, had to wear size 18 trousers nipped in at the waist. ‘It was like having elephantiasis,’ says the 45-year-old who lives near Belfast. ‘My life was terribly restricted. ‘My leg was so big, it was hard to bend it. ‘It was like walking with a large, inflatable pillow strapped round it.’ Roisin’s lymphoedema was set in train by treatment for cervical cancer in 2001. This included having a hysterectomy, where lymph nodes in her groin were removed to stem the spread of disease, followed by radiotherapy.

Up to 250,000 people in the UK suffer from lymphoedema and key triggers for the devastating and often disfiguring condition are surgery and radiotherapy where lymph nodes are removed or damaged, particularly in breast, prostate and gynaecological cancers. Lymphoedema is a swelling in a limb as a result of damage to the lymphatic system, the body’s waste disposal system. The lymphatic system plays an important role in the immune system, removing bacteria and waste from the tissues through a fine network of vessels carrying a fluid known as lymph. This travels to the lymph nodes, where it is cleansed. If the system is compromised — as can happen as a result of both cancer surgery (where the nodes are removed) or radiotherapy (which can create scar tissue that blocks the lymphatic channels) — unfiltered lymph fluid becomes trapped and forms pools, causing swelling. This can begin anywhere from a day to 30 years after surgery — it’s not clear what sets off a delayed response.

Six months after the operation, and for the first time in more than a decade, Roisin’s legs are the same size, and she’s back in size 12 clothes As well as swelling, this trapped fluid puts patients at high risk of potentially life-threatening infection such as cellulitis, an infection of the tissues. Something as innocuous as a graze can kick this off, as toxins can build up in the body. Roisin’s GP initially mistook the swelling in her ankle a few weeks after her cancer treatment for simple fluid retention — an all-too-common occurrence. Her condition was diagnosed five months later by a physiotherapist and she was given a compression garment to prevent fluid build-up as well as specialist lymphatic drainage massage to ease the fluid out. This stopped when the physio went on maternity leave. Like many patients, Roisin was to learn that treatment for the condition can often be patchy. For the next two years she was on a waiting list for treatment, with her condition worsening. She then contracted cellulitis, which fortunately responded to treatment but she was warned to go straight to hospital if it happened again. By 2009, Roisin’s condition was so bad she was referred to a vascular surgeon, who pronounced her condition ‘too far gone’. ‘He said there was nothing he could do for me,’ recalls Roisin. ‘By this time, I was in constant pain and couldn’t bend my leg at the knee.’ She could only walk by leaning on her right leg and swinging the left leg forward. ‘I couldn’t shave my legs in case I got a skin nick and infection — you have to be careful not to get a mosquito bite for that reason. ‘My feeling was that I’d honestly rather lose my leg than stay like that.’

Then, by fluke, she heard about specialist lymphoedema liposuction being carried out by plastic surgeon Alex Munnoch at Ninewells Hospital in Dundee. Although the treatment is approved by the National Institute for Health and Clinical Excellence (NICE) for chronic lymphoedema, there are very few surgeons practising it, and getting treatment paid for by local health trusts can prove very difficult. Roisin underwent the treatment in March this year. By then the watery fluid in her leg had become a hard mass — almost, she says, ‘like putty left out to dry’. An arm or leg with chronic lymphoedema won’t just be puffy with excess fluid, explains Mr Munnoch. ‘It will be puffy from fluid and excess fat because the lymphatic fluid is rich in proteins and stimulating hormones which activate the production of fat.’ The surgery involved creating 14 holes in Roisin’s leg using the specialised, extra-fine tubes necessary for lymphoedema liposuction. The hardened protein and fat was then removed in the same way as with liposuction. Six months later, and for the first time in more than a decade, Roisin’s legs are the same size and she’s delighted to be back in size 12 clothes. The drawback of lymphoedema liposuction is that it does not cure the underlying disease, so she will have to wear the very tight compression garment day and night for life to prevent fluid build up in the future. ‘People ask me whether it bothers me that I have to wear the garment — and it’s tight and hot in the summer,’ she says. ‘But I would honestly wear six of them at once if I had to rather than go back to how I was before my liposuction.’

Until now, the underlying causes of lymphoedema have been regarded as irreversible. But now two remarkable pioneering surgical techniques that put a potential cure within sight have just started to become available in Britain. In a healthy person, the lymphatic fluid drains into blood vessels after being filtered by the lymph nodes. New imaging techniques are revolutionising lymph bypass surgery. This involves pinpointing healthy lymphatic channels and re-routing them by stitching them into the blood vessels, bypassing blocked lymphatics. But with some lymph vessels no more than 0.2mm wide, this is technically challenging microsurgery, explains Kelvin Ramsay, a plastic and reconstructive surgeon at the Royal Marsden Hospital, London. First, dye is injected into the patient’s hand and it’s then taken up into the lymphatic system. Surgeons turn out the lights and use a near-infrared camera, which lights up the microscopic lymphatic channels. This shows clearly which channels are blocked so that only clear channels are grafted on to blood vessels.

There’s also lymph node ‘transfers’. These aim to kick-start the lymphatic system by harvesting lymph nodes with their own blood supply from elsewhere in the patient’s body and plugging them into the armpits of breast cancer patients who have lymph nodes cleared or damaged by their cancer treatment. As soon as the transferred lymph nodes are connected in the armpit, they start releasing substances that encourage the growth of new lymphatic vessels as well as the old pathway to open, says Anne Dancey, a plastic and reconstructive surgeon at the Queen Elizabeth Hospital in Birmingham who has already performed 25 lymph node transfers. The hospital is now starting a clinical trial comparing lymph node transfer to standard treatment with specialist massage and compression garments. As with the lymph bypass, before the transfer, dye is used to flag up the blockages. ‘My patients have been able to get rid of their compression garment and that is life-changing for them,’ says Ms Dancey.

Read more: http://www.dailymail.co.uk/health/article-2191175/Liposuction-helped-shrink-agonising-swollen-leg-How-lipo-relieving-chronic-lymph-problem-affecting-thousands.html#ixzz2RestjUp2

Another great write up by Angela Brooks for the Daily Mail ….. Thank you for bringing awareness to the needs of those with Lymphoedema.

Liposuction for Lymphoedema is available in Australia, England, Sweden and USA plus other countries, but remember you must always wear compression garments after surgery.

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