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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Kim’s surgery for Primary Lymphedema and Chylothorax

imageKim made contact via this blog a few weeks ago, she was looking for some help from myself and others, she wrote
“I developed primary lymphedema in my left leg and abdomen a year and a half ago. I also developed a chylothorax https://en.m.wikipedia.org/wiki/Chylothorax and have fluid drained twice from the lining of my lung. A doctor at UPenn Hospital Center is working with me to do a lymphscintigrapy. I have read that lymphatic transplants don’t work well for people with my history (Late onset Primary LE). I am 60 and in very good health otherwise. This has come out of the blue.”

We were able to answer some of her questions about our own experiences with surgery, testing, various doctors and hospitals, plus expectations pre and post surgery. Kim has now reached the next stage in her treatment to repair the Chylothorax and help the primary Lymphedema. Unlike secondary Lymphedema, caused by cancer treatment, we do not hear so much about Primary Lymphedema. Often people have difficulty finding a diagnosis or a doctor who understands Lymphedema and its impact on the body. I am  very pleased that Kim is sharing her experince with us but sorry that this should happen to her. Today Kim wrote..

“It’s only because of the encouragement from people on this site that I have chased down the people and institutions that might be able to help me. I am 60. My lymphatics are apparently just failing, Primary LE Tarda. Since this began in Spring 2014 with swelling in my leg, it progressed quickly over the summer. Bandaging, MLD, and a flexitouch pump are the main lines of therapy. But now I have abdominal ascites, and have had my chest drained four times since June. They take out a little over two liters each time and of course always test it. The lymphangography I had last month did not produce many good images, because of fluid in my chest. My thoracic duct up near my collar bone was shown to be normally shaped but did not have a strong clear image indicating that it is probably not conducting fluid well. I went home and had my chest drained again then returned this past Monday for a lymphscintigraphy. They used diabetic needles and it was not as dreadful as I had been anticipating. Also 8 mgs of valium orally ahead of time was a good idea!

Those images showed my left (worst) leg has one main duct that is carrying fluid, although not well, it stops at the knee, then nothing above the knee. The right leg which has begun to swell this summer, has 4 good lymph channels that look like a 4 lane highway except at mid calf, where they all look torturously varicosed, then straightens out and the lymph channels run well up through my abdomen.

So the plan is three fold. Insert a a shunt(tube) from my abdomen through my chest and attach to the subclavian vein. It has a small pump that I will use to activate the draining into the vein to remove fluid. Its very much like a Denver Shunt that is used for people with kidney and or liver failure. Soooo thankful this is not the problem I face

Second part is to have a thoracic surgeon perform a pleurodesis on my left lung. They use surgical talc to create a scarred area that causes the lung to adhere to the chest wall, eliminating the space where the chyle likes to hid in my chest. They have done this procedure for years for people with pleural efusions caused by lung or ovarian cancers or lymphomas. Once again I have to say….SOOOO thankful this is not the problem I have.

And third, here is where I am feeling some anxiety and maybe a little premature disappointment. I will meet with doctor at UPENN who does lymphovenous bypass microsurgery. I hope there is enough patency in the one good lymph channel that he will be ale to create a working anastomosis or two or three… Because my lymphatic failure is diffused I am not a true candidate for LNT, so the bypass is my best chance.”

Thanks so much Kim for sharing and we wish you well while you have this surgery. I hope you will let us know of your progress in the hope of helping others with similar problems.

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Kim at her son’s graduation

Copyright © 2013-2015 by Helensamia. All rights Reserved.

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Kimber’s third LNT… And Update

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Kimber has been updating us regularly since her original Lymph Node Transfers last year in New York. Kimber has Primary Lymphedema in her legs and has lived with this since a child. The lymph nodes in Kimber’s entire body have been mapped by the use of a specialist MRI and are normal in the upper body but the nodes are missing in her legs. It is very important with Primary LE that these test are done so that nodes are not removed from an area that is short of nodes. Therefore only surgeons who have access to these tests should perform this surgery on someone with Primary LE.. This will be Kimber’s 3rd LNT.. Below is Kimber’s latest update before she heads of to New York for surgery..

“It’s been over a year since my last update from having two LNT’s back in September 2013 with Dr. Becker and Dr. Vasile in NYC. A couple of positive and interesting things have taken place since those surgeries. The most positive is that I’ve had no hospitalizations due to those God awful staph/cellulitis infections. I should have been in the hospital six or seven times by now. I can’t even begin to tell you how life changing this has been. The benefit of me not living in and out of the hospital and not just for me but for my husband and our three kids as well…kids have their mother, husband gets his wife, and I finally get myself. Not only have I managed to avoid the hospital but I was also able to start working part-time. I haven’t been able to work in over sixteen years because of having chronic infections pausing my life and those around me. After I complete the next two LNT’s that are needed, my next goal will be to eventually transition to working full-time. Another positive aspect, although a minor one, is that I am able to ski again. I had to stop skiing about twelve years ago due to the LE as it truly had taken over my legs. Along with all the extreme swelling they also felt like tree trunks and I couldn’t fit into my ski boots no matter how hard I tried. Skiing last winter with my family felt so exhilarating that at one point when I reached the bottom of the mountain tears streamed down my face. I truly couldn’t believe I was able to do this with my family. I also noticed this past summer it was a little easier with the heat. My legs are definitely still swollen but I was surprised how they responded better as long as I was wearing my compression stockings. I will never be able to go with out compression but the legs didn’t get as large in the heat and humidity like they have in the past.

The interesting aspect during all of this was having to switch surgeons. Unfortunately, Dr. Becker no longer has her license to practice medicine in the United States. Not because of her own doing but the laws are completely different in the U.S. and Europe. From what I understand, when she went to reapply for her medical license wasn’t approved. It was upsetting and shocking how things turned out and took place. However, because of Helen and the wonderful women who I’ve met through her that are near and dear to my heart (you know who you are), they helped me to keep my head up and to remain focused on the goal. These women gave me wonderful advice and encouraged me to set up an appointment with two surgeons who also perform LNTs. Dr. Smith and Dr. Dayan are top surgeons in their field, come from respective hospitals in NYC, and they’re both extremely involved with LE and LNT’s. I can’t thank Helen and our friends enough. When I thought all hope was lost they stood beside me and lifted my spirits and helped me move forward so that I could continue my quest for better health as I still needed two more LNT’s.

I’m about to have my third LNT this Monday, December 15th, in NYC with Dr. Mark Smith. I’m having lymph nodes removed from the neck and transplanted to below my right knee. He’s also going to try to “clean up” the top of my right thigh from botched surgeries that I had when I was a teenager. So, tomorrow I leave for NYC and surgery on Monday morning and be a temporary resident for three weeks before I’m able to return home 🙂 Just like last year, I’m a BUNDLE of nerves and will be happy when it’s over. I know I’m in extremely good hands with Dr. Smith and believe things will turn out very well.

I feel extremely blessed and never take for granted about my lack of hospital stays. LNT’s are still extremely new and cutting edge in the medical world, but there isn’t a doubt in my mind that it’s due to this as to why my health has improved, greatly…fingers crossed that things can only keep improving in this battle called Lymphedema.” From Kimber

Thank you Kimber for sharing this with us…I will be thinking of you on Monday and wishing you well xxxx

These are some links to Kimber’s previous updates

https://lymphnodetransplant.wordpress.com/2013/08/07/i-have-had-primary-lymphedema-since-i-was-six-years-old/

https://lymphnodetransplant.wordpress.com/2013/09/23/i-have-primary-lymphedema-update/

https://lymphnodetransplant.wordpress.com/2013/10/30/kimber-five-weeks-post-surgery-for-primary-lymphedema/

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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.
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Research from Japan brings hope……. Medication to treat Lymphedema!

imageThese are copies of two press releases sent out by Pharmaceutical company AnGes MG, Inc in 2012. One is to patent the medication Collategene for treatment of Lymphedema, the other is to initiate the first world trials on Gene therapy (Collategene) for Lymphedema, these trial are initially for Primary Lymphedema. I do not pretend to understand how this all works! There is so little help for Primary Lymphedema as few are suited to lymph node transfer surgery due to lack of nodes in their bodies, which means there is no safe area to harvest nodes to transfer, which leaves liposuction and debulking procedures.

I do note however, that these press releases state they have also worked out how many people have Lymphedema world-wide, and are thinking about how much profit can be made from this drug!! Well I guess that is ok if it has pushed them into putting their money into research, at last, for Lymphedema, as it has been so neglected  in the past. We hope that years to come people will benefit from this medication. It seems like a dream now but there is always hope.
imageFOR IMMEDIATE RELEASE

October 1, 2012 AnGes MG, Inc.

New Medical Use Patent for HGF Granted in Japan for Lymphedema

AnGes MG, Inc. (“AnGes”) is pleased to announce that a medical use patent has been granted in Japan for HGF plasmid drug which promotes lymphangiogenesis, and the Patent Gazette (JP5036057) has been issued.
The patented invention features therapeutic agents which contain HGF plasmid as an active ingredient and promote lymphangiogenesis, and is administered directly into the affected or peripheral area by intramuscular injection. This patent, along with the previously granted patent JP4111993 for therapeutic agents that prevent or treat lymphedema, protects the new treatment of lymphedema using HGF plasmid from various aspects.
Lymphedema is an intractable disease in which impaired lymphatic system causes severe swelling and fluid retention in limbs by preventing lymphatic fluid from returning to lymph vessels. There are two types of lymphedema: 1) “primary lymphedema” which the pathogenesis is unknown, and 2) “secondary lymphedema” which occurs due to aftereffects of lymph node dissection in e.g. cancer surgery. The existing treatment for lymphedema is mainly focused on complex decongestive therapy by massaging the affected limbs and using compression garments. However, this treatment is symptomatic and should be continued throughout the life. Furthermore, there has been an increase in lymphedema cases among elderly patients in recent years who are unable to perform physical treatment on their own. For these reasons, a development of a new treatment for lymphedema is highly desired.
AnGes has been developing HGF plasmid “Collatege®” for the treatment of Critical Limb Ischemia and now started the research development of lymphedema treatment utilizing Collategene®’s action to promote lymph vessel formation. The confirmation was received from the Ministry of Health, Labor and Welfare (MHLW) on July 18, 2012 that clinical trial plan of Collategene® in lymphedema complies with the guideline for confirmation application, and AnGes’s IND application for Collategene® as a treatment for lymphedema was accepted by Pharmaceuticals and Medical Devices Agency (PMDA) on July 30. AnGes is now taking necessary procedures to initiate the clinical trial.
The grant of this patent enables AnGes to further strengthen the new treatment approach for Lymphedema using HGF plasmid, and strongly supports the development project for a long-term. AnGes strives to obtain medical use patents for other applications of HGF plasmid in order to further strengthen its patent network.
This trend will have no effect on the business performance for the fiscal year of 2012. ###
Disclaimer: This is a translation of the news release posted in Japanese. In case of any deviations between the two language versions, the original document in Japanese shall take precedence.
AnGesMG,Inc.
Corporate Communications TEL:+81-3-5730-2461, FAX:+81-3-5730-2635 http://www.anges-mg.com Email:info@anges-mg.com

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FOR IMMEDIATE RELEASE

AnGes MG Submits an IND Application for CollategeneTM (HGF DNA Plasmid)

July 30, 2012 AnGes MG, Inc.

– Initiation of the World’s First Clinical Trial on Gene Therapy for Lymphedema –

AnGes MG, Inc. (“AnGes”) announced today that their IND application for CollategeneTM (HGF DNA Plasmid) as a treatment for primary lymphedema has been accepted by Pharmaceuticals and Medical Devices Agency (PMDA).
The clinical trial is planned to ensure Proof of Concept (POC) study for primary lymphedema and is the first Phase I/II trial to be conducted with patients. In this trial study, CollategeneTM will be administered intramuscularly to patient’s affected legs which are swollen by more than 20% compared to the healthy legs, and the changes to the volume of edema will be assessed to investigate safety and efficacy of CollategeneTM.
Lymphedema is an intractable disease in which compromised lymphatic system causes severe swelling and fluid retention in limbs by preventing lymphatic fluid from returning to lymph vessels. There are two types of lymphedema: 1) “primary lymphedema” which the pathogenesis is unidentified, and 2) “secondary lymphedema” which occurs due to aftereffects of lymph node dissection in e.g. cancer surgery. The existing treatment for lymphedema is mainly focused on complex decongestive therapy by massaging the affected limbs and using compression garments. However, this treatment is symptomatic and should be continued throughout the life. Furtheremore, there has been an increase in lymphedema cases among elderly patients in recent years who are unable to perform physical treatment on their own. For these reasons, a development of a new treatment for lymphedema is highly desired.
Development for the treatment of Critical Limb Ischemia using CollategeneTM has been ongoing at AnGes and now the research development of lymphedema treatment utilizing CollategeneTM’s action to promote lymph vessel formation has begun. With the confirmation received from the Ministry of Health, Labor and Welfare (MHLW) on July 18, 2012 that clinical trial plan of CollategeneTM in lymphedema complies with the guideline for confirmation application, AnGes is ready to initiate the clinical trial for lymphedema treatment with CollategeneTM, the world’s first effort in treating lymphedema utilizing lymph vessel groth function. That being said, CollategeneTM has a potential to become a radical treatment.
AnGes plans to initiate the clinical trial promptly after taking necessary procedures, and strive to pursue the development in order to provide the new treatment for patients who suffer from lymphedema.
Once the company completes the POC clinical trial with patients with primary lymphedema, AnGes plans to start with the development for secondary lymphedema. It is reported that secondary lymphedema occurs in about 30% of patients who underwent uterus cancer surgery, and 50% of patients who underwent breast cancer surgery. Based on these figures, it is estimated that more than 1 million patients are suffering from lymphedema in seven major industrialized nations, with an approximate market size of 50 billion yen a year.
This trend will have no effect on the business performance for the fiscal year of 2012.
(Reference)
Gene Medicine
###
A drug which utilizes gene or a part of gene as active ingredient.
HGF(Hepatocyte Growth Factor)
A growth factor developed from hepatocytes; in addition to blood vessel regeneration, it initiates various processes necessary for tissue / organ regeneration during organ formation (organogenesis).
Lymphedema
Lymphedema is an intractable disease in which compromised lymphatic system causes severe edema in limbs by preventing tissue fluid from going back to lymph vessel, causing it to be retained under the skin. There are two types of lymphedema; 1) “primary lymphedema” which the pathogenesis is unidentified, and 2) “secondary lymphedema” which occurs due to aftereffects of lymph node dissection in cancer surgery, etc. There is no effective treatment method established for lymphedema while it chronically progresses and is exacerbated over time, declining patients’ quality of life.
Peripheral Arterial Disease
Narrowed or blocked peripheral blood vessels in the four limbs causes ischemic condition in muscle and skin tissues, with the following symptoms: a feeling of paralysis, coldness, intermittent claudication, ulcer of lower limbs (thrombic disease) or rest pain. It includes arteriosclerosis obliterans and Buerger’s disease.
Proof of Concept (POC)
A proof of concept (POC) is a demonstration to verify that a fundamental finding or concept has the real-world application. In development of drugs, POC refers to examination of a drug candidate compound for a certain disease in real patients after its effect was indicated in animal models.
Disclaimer: This is a translation of the news release posted in Japanese. In case of any deviations between the two language versions, the original document in Japanese shall take precedence.

AnGesMG,Inc.
Corporate Communications TEL:+81-3-5730-2480, FAX:+81-3-5730-2676 http://www.anges-mg.com Email:info@anges-mg.com

AnGes has the pharmaceutical company Vical as it’s representative for the United States.

“Collategene™
AnGes has applied Vical’s technologies to the local delivery of a gene that encodes an angiogenic growth factor that promotes the growth of blood vessels. AnGes announced that it had reached agreement with the FDA regarding a Special Protocol Assessment for a Phase 3 clinical trial of its angiogenesis product, Collategene™ (HGF plasmid), and that the FDA has granted “Fast Track” designation to Collategene™ as a treatment for critical limb ischemia (CLI), the severest form of PAD. AnGes is poised to start a global Phase 3 clinical trial of Collategene™ in patients with CLI. AnGes is also conducting a Phase 1/2 study for the treatment of primary lymphedema in Japan, for which the results are expected in the latter half of 2014.” .. Infomation from the Vical web site… http://www.vical.com/About-Us/overview/default.aspx

June 6, 2014 AnGes MG, Inc.
Grant Amount for “2013 Venture Aid Program to Promote Practical Application of Innovation” Confirmed by NEDO
Regarding CollategeneR (DNA Plasmid with HGF Gene) Lymphedema Project
AnGes MG, Inc. (“AnGes”) announced that the grant amount has been confirmed for the “2013 Venture Aid Program to Promote Practical Application of Innovation” by the New Energy and Industrial Technology Development Organization (NEDO). As announced by AnGes on May 15, 2014, the CollategeneR lymphedema project was selected for NEDO‘s program.
Project name: Grant amout: Period:
Clinical Development of Lymphedema Treatment Drug using HGF Plasmid
79,808,000 Yen
(Maximum amount equivalent to two-thirds of actual project costs) May 29, 2014 to February 28, 2015
Details of the program are as announced in the press release “CollategeneR (DNA Plasmid with HGF Gene) Lymphedema Project Selected for NEDO’s Venture Aid Program” on May 15, 2014.
The grant money is expected during the fiscal year ending December 2015, and this will have no effect on the business performance for the fiscal year 2014.
###
Disclaimer: This is a translation of the news release posted in Japanese. In case of any deviations between the two language versions, the original document in Japanese shall take precedence.

AnGesMG, Inc.
Corporate Communications TEL:+81-3-5730-2641, FAX:+81-3-5730-2635 http://www.anges-mg.com

More info… http://www.anges-mg.com/en/project/proj_develop.html
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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 a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Dr Corrine Becker with Lori

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Dr Corrine Becker with Lori March 2014 provided by Lori

This is a wonderful picture that Lori sent me today from her appointment with Dr Becker and Dr Vasilles in New York, earlier this month. When someone changes your life it is hard to find the words and a hug says it all!! Dr Becker was pleased with Lori’s progress and as time goes by her lower leg will improve more and more. At a later stage there may be a need for a small amount of liposuction to get rid of the fibrous, stubborn areas.

This is a Link to Lori’s story of Primary Lympedema and surgery

https://lymphnodetransplant.wordpress.com/2013/07/17/loris-story-of-primary-lymphedema-and-treatment/

Dr Corrine Becker is the pioneer of Lymph node Transfers and is responsible for teaching many doctors world-wide how to perform this surgery. In Paris she started more than 20 years ago and over the years has perfected the technique. That we have the opportunity to be part of this revolutionary treatment is truly giving hope to many. Over the next few years, with research into medications that help the development of the lymphatics, it feels like we are moving into exciting times.

This is a link to a study in Finland (2014) on Lymph node Transfers, it is long but there are items of interest about the use of Growth Factor written by Tiina Viitanen

http://www.doria.fi/bitstream/handle/10024/94237/AnnalesD1103Viitanen.pdf?sequence=2

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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

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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New York Bonding!!

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Jennifer,Helen, Leslie, Kimber, Andrea

What a wonderful day today.. Since starting my blog way back in March 2013 I have connected with many fellow “Lymphies” all over the world. Today, while on holiday in New York, I was able to meet up with four other ladies who have Lymphoedema, as you can imagine the talk never stopped, we shared stories, experiences, highs and lows, but mostly it was great to talk with others who understood the daily routine of living with Lymphoedema. Four of us have had Lymph node transfers and one is looking into this surgery. Four of us are secondary Lymphoedma and one primary. Four have Lymphoedema in one leg and one has Lymphoedema in both legs.

When I started to write my blog I never dreamed that one day I would actually meet up with others who would understand why I have yellow rubber gloves in my handbag!!!

Thank you so much to Kimber, Jennifer, Leslie and Andrea for meeting me today. This is a day I will always remember.. ❤❤

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New York 2014

Lymphoedema… Not just in arms and legs

I saw this article via LinkedIn and it reminded me that Lymphoedema is not just something that happens to arms and legs, it can occur in any part of the body. This can be the result of secondary Lymphoedema or Primary Lymphoedema. For obvious reasons LE of the head, neck, abdomen, trunk and chest are much harder to treat. MLD becomes difficult and custom-made garments can have problems fitting correctly. When more than one area is affected people experience physical problems as well as a compromised Lymphatic system. There is little support or emphasis on LE for areas other than arms and legs, therefore it is great to see this article which is a patients guide to head and neck Lymphoedema.

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Patient guide to head and neck lymphedema following cancer treatment
By Ryan Davey
Scientist and Business Owner

We just completed a little summary of the latest research on head and neck lymphedema (HNL) and thought we might share it with the group. The prevalence of HNL is very high in patients treated for head and neck cancer, but there isn’t a lot of information available on the condition, nor are there many clinical studies. If you’re interested you can find our patient guide here:

http://torontophysiotherapy.ca/rehab-science-blog/patient-guide-head-and-neck-lymphedema-following-cancer-treatment/

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Thanks Ryan for allowing me to share this article..

Kimber.. Five weeks post surgery for Primary Lymphedema

imageThis is the latest update from Kimber who has Primary Lymphedema, she had surgery in New York five weeks ago with Dr Corinne Becker and Dr Vasile this is a link to her previous post just before the surgery and this also has a link to her story of having LE since she was six years old https://lymphnodetransplant.wordpress.com/2013/09/23/i-have-primary-lymphedema-update/

Up date…

Well, it’s been exactly five weeks since I had the second surgery and it’s night and day as to how I feel now. Having two surgeries in a 24-hour period was one of the hardest things I’ve ever done. It’s not the worst but extremely hard. The first surgery, which took place September 23rd, was the hardest out of the two. Not only did I have the transplant to my right groin area but I also had my right thigh that Dr. Becker and Dr. Vasile tried to revise the best they could. The surgery was supposed to last about five hours and it ended up being eight. I was in recovery for another four hours before they allowed me to go back to my room. The day was extremely long as I left for the O.R. at 7:30am and didn’t get back to my room until 8pm. There was definitely a lot of pain but majority of it was from the donor site and my arms were killing me and I had no idea why? What I didn’t know was that I was starting to have Thrombosis settle into my arms. Thrombosis is a very rare side effect and naturally I had to get it…LOL It’s the formation of a blood clot obstructing the flow of blood, which can result in bad swelling and pain. However, when I look back on it now it doesn’t surprise me that I ended up with Thrombosis. The veins in my arms have been completely wiped out and very weak since I was twenty years old due to all the cellulitis infections. It’s why I have a port-a-cath in my chest. I was also told that because the surgery was so long that laying in one position with my arms strapped down and no movement also helped cause the Thrombosis. As far as my groin and the revision to my thigh, that didn’t hurt much at all. However, I was up all through the night because my arms and donor site were just too painful. Than, what comfort it was as through the night I would look over at my husband sound asleep on the couch along with hearing him snore…haha Please excuse my dry sense of humor but I have to laugh because laughter plays a huge part in seeing me through this disease 🙂

The next morning, at 7:30am I was wheeled down to the O.R. to have the second transplant. This time the donor site was my right side with the transfer taking place in my left groin. The original plan was to have the transplant to my left knee. After talking to the doctors in the O.R. it was decided it would be best to put the lymph nodes in my left groin area. Things went very smoothly with that surgery as it lasted just four hours, exactly what my doctor’s thought it would be. When I was able to go back to my room I felt completely out of it and was a bit confused (too much anesthesia). When I woke up my husband asked if I wanted something to eat and I told him I couldn’t as I needed to wait until after surgery. That’s when I found out the second surgery had already taken place and I was out of recovery and back in my room. I had four drains in altogether and immediately felt an enormous amount of pain in both of my sides (donor sites) and both my arms. My arms and hands were so swollen, weak, and heavy that it hurt like hell and I could barely move them. All I could do was constantly watch the clock so I could call the nurse for pain medicine every chance I could. I honestly was just that miserable. I was in the hospital for a total of five days and when I was released I stayed in NYC at the Miracle House for another six days. I had to stay a few days longer because I developed a pocket of fluid at the left donor site that had to be drained. Both doctors wanted to keep a close eye on me to make sure there wasn’t anything else that could potentially develop. I was allowed to return home to Maryland after 11 days. Oh, on a side note, the second night in the hospital, Scott stayed up with me through the night as I made sure to point out how refreshed he looked because of all the sleep he got the night before (once again I just can’t help myself) LOL

Once I returned home a week later I started MLD therapy. I go five days a week and also wear ready wraps (another type of compression garment) on both legs from my feet to my groin. I don’t wear anything at night but will eventually. I’m to do this for three months and then will transition to a compression stocking. I’ve been eating LOTS of protein, vegetables, drink lots of water, take daily vitamins, and walk every day. I just want to do everything I can to try and achieve the best results possible. I honestly don’t want to ever look back on any of this and wonder if I could have done something different. So, I’m willing to do WHAT EVER it takes!

I go back to see Dr. Becker and Dr. Vasile in November. It will be interesting to see what they have to say about the results so far. I am seeing an improvement but it’s hard to decipher if it’s from the transplants, the MLD therapy, or maybe a little bit of both? I’ll also find out how Dr. Becker wants to proceed with the other transplants. I will need them in my knees and more than likely my ankles as well. Even though I had a rough time with the surgeries I want to point out that my situation is very much different. My case is so severe with being Primary and in two limbs. For me, I don’t mind being aggressive only because I know what I’m dealing with and what I’ve been through since I was six years old. My disease is so incredibly aggressive and forceful that I’m willing to go the extra mile to try to combat it. With out a doubt I have absolutely NO regrets and will do it over again with my knees when my doctors feel I’m ready. For anyone who might be considering lymph node transplant I don’t want my story/experience to alter your decision. Having two transplants done in a 24-hour span is a very rare occurrence.

Helen has told me this requires lots of patience along with it being an emotional roller coaster and I couldn’t agree with her more. Even though this will be a long process I do believe from the bottom of my heart it will all be worth it in the end. While this isn’t a cure I feel for the first time I could really get some much-needed relief from all the swelling and hope it slows the infections down and maybe eliminate them entirely. However, if God forbid it doesn’t work out the way I wanted at least I know I tried and gave it EVERYTHING I possibly had. Once again….keeping my fingers crossed!!!

Once again thank you Kimber for sharing your story and keeping us up to date with your progress… I should add that Kimber’s arms were back to normal after three weeks and are now fine.

This blog does not replace medical advice and everyone is an individual in their needs. In creating these posts it is to share mine and others experience, of the surgical journey, on a personal level rather than a medical one.. If you would like to share your story please email me on helenbrd@bigpond.net.au

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