Product Review: Getting Relaxed with the Jobst Relax

This may be a new type of compression garment for you to try ..thanks for sharing this review based on your experience… it is certainly less bulky than other options

The Lymphie Life

Disclosure: I received one free Jobst Relax to review on The Lymphie Life. Although this post is sponsored, all opinions expressed here are my own honest impressions of the product!

When I first saw the Relax last autumn before it’s official launch, I thought it was totally different than anything I had seen before. After wearing it for a good couple months now, the initial impression of novelty has evolved into genuine appreciation, as the Relax has become the garment I never knew I needed.

This latest compression tech from Jobst is not quite a nighttime garment, and it’s not quite a daytime one, either: it’s more of a lifestyle garment. That’s what I love most about it, because it fits whatever need you may have for it.

The Product

Just one look at the Relax and you can tell it’s different from most custom garments out there because of its unique material.

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SAPL Surgery – the second step!

Update on SAPL surgery …thanks for sharing…

The Lymphosaurus Rex

Hey all,

Gosh its been a while since I did an update on the blog; but not much has happened up until recently. (If you want more regular news from me, its best to follow me on Instagram @lymphosaurs_rex)

I recently went to Paris for “stage two” of my Lymphedema surgery plan and had a liposuction procedure (SAPL) with Dr Becker. The goal was to remove the fibrous tissue (mainly on the exterior side of my left left) that has accumulated over the years of living with LE. To the naked eye, it looks like nothing but a fat leg, but when you touched my leg it was kind of harder in some spots than others.

The procedure took about one hour and I was a day patient at the hospital (no overnight stay required). I never really had a huge amount of pain (stopped taking the pain killers around day…

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Four year on….

imageToday is world Lymphedema day….March 6th… four years ago I started this blog to write about my Lymph node transfer surgery, as I could find nothing from a patients point of view. Four years later there are Facebook groups, websites and people on Instagram sharing there stories of surgery to help lymphedema. It is no longer seen as experimental and I believe there are improvements in results all the time. Lately some surgeons are using various combination of Lymph node transfer, (LNT) lymphatic liposuction, Suction assisted protein lipectomy (SAPL) and Lymphatic vascular anastomosis (LVA)… we are still waiting to see long-term results of this combination but it is exciting news.

https://stanfordhealthcare.org/medical-conditions/blood-heart-circulation/lymphedema/treatments/surgical-treatments.html

http://www.cancercenter.com/treatments/lymphedema-surgical-options/

https://lymphedemasurgeon.com/suction-assisted-protein-lipectomy-sapl

I am still waiting for someone to be able to throw away their compression after surgery but for sure it helps the limb. In my case no more infections, my leg remains soft and responds very well to compression plus I have days with no compression and it stays ok… Due to other health issues I was unable to have more surgery plus due to these health issues I am now a paraplegic and use a wheelchair, this is not helpful when you have lymphedema. I feel sure that if I was still able to walk, use a pool and exercise my results from surgery would be even better. https://lifeinawheelchairblog.wordpress.com/about/

We are also seeing more research into various other treatments for Lymphedema such as medications and artificial lymph vessels. We need as much research as possible so that we can see advances in a cure for Lymphedema. Lets hope that in the next four years we can see this happen…We need a cure for Lymphedema ….

Although I do not post very often on this site anymore it is always monitored and questions answered.. I love to share people’s stories so we may help each other…

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Copyright © 2013-2017 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

Update from Cindy..

Just received this update from Cindy who is two years post Lymph node transfer with Dr Graznow …going well but always have to be vigilant for any issues … it is about gauging what works best … however not having to wear compression all the time is great… LNT will continue to improve too ..

“This is long overdue. December 11, 2016 was my 2 year anniversary for the VLNT. I am pleased to report that my leg size continued to stay small and I spent a lot of time out of my garment. I was beginning to hope the Lymphedema was gone. All that changed when I put a pair of socks on to wear with my boots. The socks were crew socks so the elastic was around my calf. While at work I decided to check and see how my leg was handling the elastic. I was horrified to see the swelling (and pitting) right above the sock. I ran home during lunch and put my garment on. Next day it looked good and I continued to not wear my day garment. Overtime, I realized I could feel my calf getting bigger during the day. It was slowly getting larger and heavier. I am back wearing my day garment, using the Jovi at night and receiving MLD twice a week. My leg looks and feels great again. I’m fairly certain I will be able to go without my day garment again. I don’t want to rush it. I waited an entire year post VLNT to experiment with not wearing my garment. Think I will give it a month before I try again. I’m grateful for all those days without my garment. I now realize I can have nothing on my leg that restricts circulation.

Wishing everyone a happy and HEALTHY 2017!!” From Cindy

Please everyone remember that March 6th is world Lymphedema Day

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Copyright © 2013-2017 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

8 months post-op

Thanks for sharing your progress with us

The Lymphosaurus Rex

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Hi everyone,

It’s been 2 months since my last blog and lots has happened in between now and then. These last two months have really been an emotional rollercoaster for a variety of reasons. I’ve been very immersed in my own little Lymphedema world, researching, learning more and more (and also being disappointed with the lack of up-to-date information on the internet). I’ve been connecting more and more with others who suffer from this condition, listening to their experiences and stories (2 hour long phone calls to the USA, United Kingdom, Solvenia!), which has been incredible! It always feels like I’m listening to an echo of my own story when I speak with other Lymphies; the similarities are fascinating.

I’ve really had the urge to do something more with my blog, my story, my mission to raise awareness of Lymphedema, which in turn has been pretty draining on me mentally. I feel like there…

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Update from Loretta

imageI’m doing well I keep saying I owe you an update but time flies by! I was at my therapist yesterday and she measured me and I am smaller than the last which was in September. Overall much smaller than before the surgery.😊My thigh is “normal ” but where he implanted the nodes in my calf is a little bigger. You would have to look hard at my leg to see the difference.
I stopped wearing a tribute at night and decreased my stocking compression to a class 1 from a 3, BUT I still wear my ready wrap on top of the stocking.
The end of January I am scheduled for my one year MRA and beginning of February a Lymphocintigraphy, excited to see how my babies are performing!! I see my surgeon after the testing.
Hopefully he will tell me to get rid of the wrap and start with a higher compression stocking to make up for the loss of the wrap.
All in all the surgery seems to be working for me and hopefully I continue to see results.
You can share this on your site and if anyone would like to contact me I would be happy to speak to them.

This is a link to her previous post at time of surgery

https://lymphnodetransplant.wordpress.com/2016/03/12/the-unwelcome-guest-part-two/

Even though there are not many new posts this blog is always being monitored and someone can answer questions …love to hear your stories always ..plus I reblog any interesting posts from others on lymphedema…

Copyright © 2013-2016by 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

 

6 months post-surgery — The Lymphosaurus Rex

Hey all, We have arrived at the 6 month mark following my Lymph Node Transfer in May. It just so happens that Dr Becker was in my neighbourhood this week (yes, random I know!) and we took the occasion to catch up and check out the fatty leg. Firstly, its still too early to see […]

via 6 months post-surgery — The Lymphosaurus Rex

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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Research

imageFirst Patient Dosed in Secondary Lymphedema Study
Andrew Black
Published Online: Monday, Jul 25, 2016
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Eiger BioPharmceuticals dosed the first patient in the Phase 2 Ultra Study of their drug Ubenimex in patients diagnosed with secondary lymphedema. The Ultra study is designed to assess the effectiveness of ubenimex blocking the production of Leukotriene B4 (LTB4).
Ultra Study
The study will evaluate the effects of ubenimex in patients with secondary lymphedema of the lower limb(s) who are optimized on physical therapies. The Ultra Study is a multi-center, randomized, double-blind, placebo-controlled Phase 2 trial assessing 40 patients that will be randomized to receive either 150 mg of ubenimex or placebo three times a day over 24 weeks.

Leukotriene B4 (LTB4) is a naturally-occurring inflammatory substance known to be elevated in both preclinical models of secondary lymphedema as well as human lymphedema disease. Elevated LTB4 causes tissue inflammation and impaired lymphatic function. Targeted pharmacologic inhibition of LTB4 promotes lymphatic repair and reverses lymphedema disease in treated animals.

Ubenimex is an oral, small-molecule inhibitor of leukotriene A4 hydrolase, which regulates the production of leukotriene B4 (LTB4), an inflammatory mediator implicated in PAH. LTB4 is produced from leukocytes in response to inflammatory mediators and is able to induce the adhesion and activation of leukocytes on the endothelium, allowing them to bind to and cross it into the tissue.

Ubenimex is also currently being evaluated in a Phase 2 study for the treatment of Pulmonary Arterial Hypertension (PAH).
Secondary Lymphedema
Secondary lymphedema usually develops as a result of a lymph vessel blockage or interruption that alters the flow of lymph through the lymphatic system and can develop from an infection, malignancy, surgery, scar tissue formation, trauma, radiation, or other cancer treatment Radiation therapy can damage otherwise healthy lymph nodes and vessels, and can cause scarring of the lymphatic vessels which leads to fibrosis and subsequently diminish lymphatic flow.

 

Always excited to see any research into treating and curing Lymphedema …