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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Helping each other.. Building Awareness..

This morning when I was checking the Lymphoedema pages and groups on Facebook I saw this post from Kristin who runs the Newcastle Lymphoedema Clinic. http://www.facebook.com/pages/Newcastle-Lymphoedema-Clinic/213474748824277
March is Lymphoedema Awareness month and it seemed a pity that her article would not be seen, in the Newcastle Herald, having taken the trouble to write it. Therefore I offered to post it on this blog so that people can learn the early signs of Lymphoedema. Please find the link to her web site at the end of this post.

“Kristin Osborn – Lymphologist
Cert. CLT, Cert. Lymph Dissec. Dip. R.M., Dip. M.Sc. Cert. T.A.A. Cert. Bus. Mgt.
Member: AMT, LAV, LAQ, ALA, Hunter Wounds, Int. Wounds, Cancer Action Network, BCNA, Nat. Lymph. Network Inc. US. Medical Reg. Aust.

Complex Lymphoedema Therapist – Lymph Drainage, Compression Garments and Bandaging, Laser, Kinesio Taping, Exercise, Diet and Travel Advice. Australasian Distributor of the Reid Sleeve Compression Garment and holding the Largest Lymphoedema amd Lipoedema Products Range in Australasia.
“I am excited to share and help you with the latest in Technology, Education, Techniques and Advice assisting and correcting the way your Lymphatic System works.” Kristin Osborn …. Kristen is also the guest speaker at the Lipoedema conference held in Sydney..

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“Wanted to express how disappointed I was about creating awareness for Lymphoedema Awareness Month March. I wrote an article to go into the Newcastle Herald with a pull-out section for who might get Lymphoedema and the “Signs and Symptoms” for people to look out for and in all the wonderful wisdom of the journalist, she decided to cut it to pieces and put it in a place where no one could find it!, so much for creating awareness.” Kristen

This is the article originally writen for the Newcastle Herald

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National Lymphoedema Awareness Month March 1—31st
“It’s Cool to be Kind”

Lymphoedema is a progressive chronic disorder of the lymphatic system. It occurs when the lymphatic circulation fails to function correctly, causing severe, painful and debilitating swelling. Early diagnosis and specialised management is the primary effective treatment. Lymphoedema usually affects the limb(s) but can affect the trunk of the body, head, breast, neck and the genital area.

There is no cure only management using Manual Lymph Drainage, compression garments and complex bandaging. Lymphoedema affects people of all ages and if not treated early can lead to regular hospitalization , due to infections and have devastating effects both physically and emotionally. Only early diagnosis and treatment can reduce the progression of lymphoedema to minimise its impact and limit complications.

There are many causes of lymphoedema, including some people born with a genetic predisposition. (Primary Lymphoedema) These people may develop lymphoedema at any stage during their life, mainly during major hormonal cycles of puberty, pregnancy and menopause. In addition, any major damage to the already fragile lymphatics caused by surgery, (Cancer, Cosmetic, Knee and Hip Replacements, Broken Bones, Parasitic infections and Venous issues) can cause Lymphoedema to start.

Secondary Lymphoedema is caused by the treatment for cancer, where the lymph nodes are removed or damaged and patients undergoing radiation therapy. This is often seen after Breast cancer treatment or gynecological cancers also Melanoma removal and Prostate Cancer. In fact any treatment where Lymph nodes are removed for what ever reason. However if diagnosed and treated early, this distressing and debilitating disorder can be controlled and reduced, infection prevented, range of movement of the affected area can be improved and the quality of life can be greatly enhanced.

People who are at risk of Lymphoedema, either due to a genetic predisposition (family history) or after cancer treatment, should be aware of the early signs. Many people experience early symptoms of lymphoedema but don’t recognise them so it is vital that these high risk people learn the signs of lymphoedema and seek early diagnosis and treatment.

Early signs and symptoms of lymphoedema can be intermittent or permanent and may include:

1. Intermittent or permanent swelling of the limb
2. Infection
3. Feelings of heaviness and stiffness
4. Limitation of movement
5. Temperature changes of the skin
6. Tightness of Jewellery, Clothing or Shoes
7. Swelling may worsen due to heat, over use, sustained positions and prolonged inactivity or become more obvious at the end of the day.

For more information and assistance please contact Kristin Osborn at Newcastle Lymphoedema Clinic on 49 20 70 10 or visit the website at http://www.newlymphclinic.com.au/

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Deep Lymphatic Drainage …. Update

imageI originally wrote about going for a session of Deep Lymphatic Drainage a couple of weeks ago. Yesterday I went for my third session and as promised I am now following up, as the therapy is a little different to usual MLD!!

Prior to seeing Shan at Shan Therapy I had been attending Macquarie Uni Hospital physiotherapy department for MLD and follow up post surgery care. The problem was there did not seem to be a protocol for this, as some doctors have overseas. Dr Massey likes all her patients to bandage and do MLD for three months after surgery… 24/7…. I found myself trying  this and trying that and I found that when I asked question I was given the “I don’t know” answer and the problems I was having with my knee after the surgery were also not being addressed. However my leg did reduce from the post surgical swelling using Ready Wraps and compression stockings and weekly MLD,  but then it just got to a plateau and my knee was worse than pre surgery, which was very scary.  It is not always good to be the first and to “blaze the trail”. I decided that I needed to find some help for myself. My body was feeling congested, I was struggling emotionally. I started to question why I would have had this surgery, being the first in Australia I had no one to relate to and felt quite alone. Thank goodness for the Internet and this blog which has allowed me to contact fellow patients overseas which has really helped. We call ourselves “the leg ladies.”

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Visiting Shan for the third time I felt like I was returning to a safe haven, where someone would listen to me and help. At the start of each session we talk about what has happened as a result of the previous session, how is the leg,  how does the treatment need to be adjusted to make the most impact. I think that this is the difference in conventional MLD, as the therapy is always the same, at the hospital the work was all about the leg and not my whole body and we reached a stage where no more could be done. The lymphatics are all one network, each area affecting another, if they are not in balance you have no hope of helping the problem limb. Deep Lymphatic Therapy is MLD with extras!!!!

Once again I was laying on a bed of magnetised water and also around my head, Crystal Quartz were taped to all the main areas of lymph nodes. Shan said she would take a picture of me but not sure I am ready to share that picture on my blog!! Again Shan starts to work on the nodes and pathways using a Crystal Quartz wand, this feels warm, first the left arm is cleared then left leg, right leg and finally right arm. Each area is checked to see if it feels lighter when lifted and only then does Shan move on to the next limb. I am also given essential oils to inhale, these vary but we have used, Wild Lavender, Peppermint, Fennel, Fragonia and Ylang Ylang, dependent on what Shan feels is needed. The session lasts two hours and during it I have water to drink and before a detox tea of lemon, ginger, dandelion and honey. By the end I am ready to go to the loo!!!! I know some of you are reading this and going, “What is she doing, has she gone quite mad!” There are times that we don’t always understand why things work, but just have to except that it does and also that there are people who have the ability to heal. Some MLD therapist have been in touch with me and find it very difficult to acknowledge this therapy, but I say I have the results!! I now have two ankles the same size, the knee and thigh are reducing and look much better, my tummy and groin area have reduced, I notice this especially in the morning, I don’t feel congested anymore, I feel better mentally, I feel supported and best of all Shan has an answer for my knee!!! When you have surgery there is scar tissue, the muscle sheath or fascia can get puckered or gathered and this leads to the kneecap not tracking properly when you move it. Makes perfect sense as below my knee cap you can see a tight line, Shan is now working to release this and in time my knee should return to normal. All I can say is why could neither a doctor or physiotherapist recognise this or listen to my repeated, “There is something wrong with my knee when I walk!”  I also have exercises to improve the numbness in my lower leg and foot.

I  think that what is working is the holistic approach to my Lymphoedema in conjunction with the transplanted nodes, which are supported while they grow.  The use of different modalities including medical and alternative are all helping. I don’t believe that my Lymphoedema will ever be “cured” but I do believe it will be greatly improved and easier to manage…. A cure would be a wonderful bonus!! Thank you Shan for your help and if Rosemary were  alive I am sure she would be interested to see the progress.

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Deep Lymphatic Drainage

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Crystal Quartz.. Google images

“Clear Quartz is known as the “master healer” and will amplify energy and thought, as well as the effect of other crystals. It absorbs, stores, releases and regulates energy. Clear Quartz draws off negative energy of all kinds, neutralising background radiation, including electromagnetic smog or petrochemical emanations. It balances and revitalises the physical, mental, emotional and spiritual planes. Cleanses and enhances the organs and subtle bodies and acts as a deep soul cleanser, connecting the physical dimension with the mind. Clear Quartz enhances psychic abilities. It aids concentration and unlocks memory. Stimulates the immune system and brings the body into balance. Clear Quartz (Crystal Quartz, Rock Crystal) harmonises all the chakras and aligns the subtle bodies.” Ref. Caryl Haxworth Charms of Light

Rosemary D. White spent many years working at Mt Wilga hospital that has a specialist Lymphoedema clinic. It is here that I had five weeks of treatment when I was first diagnosed and again in 2009 after an infection. Mt Wilga, under the care of Dr Helen Mackie, has always been at the forefront of treatment even when no one else was helping. However Rosemary found that there were cases that did not respond to MLD, or if they did it did not last for long, she made it her life’s work to find better ways of treating Lymphoedema. Rosemary wanted to stimulate the deeper Lymphatics that remained untouched by MLD which would enhance the benefits of treatment. Rosemary looked at all types of alternative therapies to find an answer and found that the use of Crystal Quartz could help with decongesting the Lymphatics in conjunction with  magnetised water. Rosemary went on later to teach at Nature care and was Education Officer for the Australian Deep Lymphatic Therapists Association. When Rosemary died,  in her 70’s, she had taught her treatment to a handful of therapists who continued her work. She did not live long enough to see it tested scientifically but there have certainly been some beneficial results.  Yesterday I went to see Shan, at Shan Therapy, a pupil who has continued Rosemary’s work. This is the story of my treatment which was very unusual but totally amazing. I have no idea how or why it works so I will just describe my experience.

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Clear Crystal Quartz enhances healing.. Google images

Shan told me that about half an hour before my appointment I should eat some protein, on arrival I was given a herbal tea made of lemon, ginger and dandelion, which is good for the lymphatics.  The massage table had a layer of bags filled with water that had  been magnetically charged. I also had bags of magnetised water placed under my neck and around my head!! I think I was glad no one was there to take a photo as I think I looked like a large baby all wrapped up with a bonnet on!! Next Crystal quartz pieces were taped to all the main Lymph node areas from head to toe. Shan then used a piece of quartz instead of using her hands to work on the various areas of the body, clearing one section at a time. Stimulating the nodes via the crystal which sends  a piezoelectric effect to stimulate the deeper nodes. The first area cleared was the left quadrant, asked to lift my arm it felt lighter than my right arm, then left leg and then right and finally the right arm… Each time testing how the limb felt against the untreated one. At times Shan said my face lost all its colour so in between I was given drinks of water, aromatherapy to inhale and breathing exercises. This whole cycle of treatment continued until all limbs felt light, I was there for two hours in total.

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Diagram showing deeper Lymphatics that are stimulated by this treatment.. Note the right hand quadrant only drains from the waist up. the rest of the body drains into the left quadrant.. Diagram from Shan Therapy

I told you it was different and I cannot really describe it properly. I did get the typical detox headache after and went to the loo quite a lot, as fluid left the body. However today I feel good, my body feels less congested and lighter. Three treatments are suggested so I will see what the final outcome will be. It certainly did me no harm and Rosmary spent years working on this, creating a treatment that she felt stimulated the Deep Lymphatics rather than just the surface ones that Manual Lymph Drainage works on.

These are two articles written by Rosmary that explain the treatment in a more scientific way. Those of you who are therapist may have used this method or heard of it. I would love to hear your experiences.

Anatomy Of The Deep Lymphatic System – Key To Lymphatic Drainage

Rosemary D. White Journal of the Australian Traditional-Medicine Society March 2007 Volume 13 Issue 1
This article describes the anatomy of the deep lymphatic system. Clinical experience indicates that the piezoelectric effect, generated by suitably sized quartz crystal tools when applied by hand over deep lymphatic trunks and nodal complexes, effectively stimulates them, significantly improving lymphatic function. Particular areas of congestion can be specifically targeted resulting in major benefits for clients. Ref. R.D. White

Nodal Massage Using Deep Lymphatic Therapy And Holistic Care

Rosemary D. White Journal of the Australian Traditional-Medicine Society June 2010 Volume 16 Issue 2

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Clear Quartz Crystals.. Google images